Mimi's Place

Elder Care: Conversations about Dying

2009-10-06T16:22:00.004-06:00

Some months ago I read an article in the NY Times that moved me so much, I cut it out, stashed it in my "to write about" file and never dared look at it again. The author, a psychotherapist, dared to bare her heart and soul in the article. More than anyone else I've read or talked to, she captured the poignancy, sadness and privilege of participating in the waning months of an elderly person's life.

In Mimi's Place, I've written much about caregiving and caregiver issues, about the strains and uncertainties related to helping one's aged parents as they become older and frailer. But I've not yet tackled the subject of talking with your parent(s) about dying and death. As I go through this experience myself, I find I have little patience for complainers and whiners in this situation. Rather, I've become a sponge for the wisdom of those who are willing to take the time to analyze their relationships in thoughtful ways. Like them, I try to distill my experience into something both practical and meaningful for others. It thrills me to see more caregivers recognizing that, regardless of the trauma and drama of their situation, they have skills they never realized they possessed, and are gaining experience which will have real-world applications.

I want here to quote a few passages from the article, which was written by Dr. Ruth H. Livingston of the William Alanson White Institute in New York. Dr. Livingston has addressed the subject with great gentleness and insight. I couldn't ask for a better introduction for my readers, nor a more inspiring article on this very difficult subject. Reviewing her visits with a dying patient she writes, "Awkwardly, haltingly, I speak of mundane events of my day.... I feel strange, out of role and incredibly selfish....Yet as I speak, she smiles. The furrows of pain creasing her forehead relax....And so I go on....The work is draining and lonely. I often feel inadequate, out of my element, helpless. And I wonder about my motives....But I know that I'm deeply grateful to my patient...This work is paradoxically enlivening: it has given my professional life--and my personal life--new richness and meaning."

I hope you will all click through to read the article, which is not terribly long, in its entirety. And I hope you will all find it as bittersweet yet uplifting as I did.

Dementia: What do you say?

2009-09-01T15:18:00.002-06:00

Dementia is not a kind illness. It robs those it afflicts of the one treasure trove that neither bankruptcy nor other losses can touch: one's memories. For those caring for someone with dementia, the illness presents an extra sharp edge. That's because it progresses at unpredictable paces. No one can tell when an aspect of memory or cognition will vanish. And no one can say after that what will go next.

In my experience, one of the more profoundly disturbing aspects of dementia, at least for the caregiver, is when your parent can no longer tell where they live. This starts simply enough, with a confusion, often temporary, about where they are. The questions go something like: "Where am I? Am I at home? Where am I living?" Answering those questions truthfully usually is enough to bring your parent back to reality. At this stage, the confusion is more like temporary amnesia, an affliction one moment, gone the next.

But over time, the state of confusion, of not knowing where they live or where home is, deepens and lengthens. I liken what happens in this stage to balloons breaking loose, each with a disconnected snippet of memory attached to its string. Imagine that your parent simply doesn't have a clue where she is living. In a continuous effort to figure that out, her brain offers her a few unassociated options. For example, a balloon floats free, bringing with it a memory of a house your parent used to live in, in Peoria, when you were 6 years old. So your mother tells you she's living back in Peoria. Now her brain offers her reasons for why she's there. It sends up a balloon attached to a memory of waiting for you to come home for a friend's house so she can cook dinner. And that's what she tells you she's doing. Or perhaps one day she'll tell you she's in a hotel room, packing for a flight home. All she knows is that she doesn't recognize where she is. Her reasoning for that is, "Hey, I'm at a hotel."

For you, these disconnected, seemingly irrational statements from your mother are concerning. For her, they give her a satisfying explanation that help her feel more peaceful. She's figured out where she is and what she's doing, at least for that moment.

This constant searching to understand where she is and why she's there, must be stunningly frightening and disturbing to the dementia sufferer. Disconnected from the present, disconnected from the past, with random memories ricocheting about without anchor. It's terribly poignant and filled with pathos.

So, what do you say when your parent presents you with a statement that you know is incorrect, and which reflects a scary lack of understanding of where they are. In discussing this with a psychiatrist recently, he called told me the parent's version of things is called "fictitious reality." This is a perfect label, which catches the made up aspect of the statement, along with the fact that, for your parent, it's very real.

Some caregivers are really thrown for a loop when these stories pop out of a parent's mouth. Here's what the psychiatrist suggests: You could try gently to remind her of her whereabouts by noting very simple things about who you are and where she is. If she insists this is not so, or this seems to upset her repeatedly, don't "dispute" with her, thinking you'll forcibly haul her back to "reality. This will likely be a frustrating and futile activity for you both. Instead, try to indulge her. Drop the notion of proceeding with your own planned line of conversation; make a switch to her side. Enjoy reminiscing with her about things from the past rather than trying to discuss the present. Or, if you prefer, change the subject to what you've done that day, and just regale her with a few stories from your present life.

Elder Care and the Whole Patient

2009-07-24T20:04:00.003-06:00

An elderly person with no specific deadly illness like cancer, is still likely to suffer from many of the standard ravages of old age: high blood pressure, cholesterol issues, weak bones, perhaps some anxiety about it all. To treat these health issues that one person will see a cardiologist, orthopedist, psychiatrist, endocrinologist, neurologist and more. Each will prescribe tests, procedures, treatments, medications. Who coordinates it all? Who's looking out to make sure that the new drug prescribed by the neurologist for back pain, doesn't conflict with, or diminish the efficacy of ,a drug prescribed by the cardiologist? The answer, usually, is: No one.

This is one of the most serious matters confronting care givers, care managers and, of course, the elderly person themselves. Unfortunately, though our medical system puts us in the position of needing to monitor medications and our elder loved ones' physical and mental well-being, we are often not the most competent to do so.

Purely on the physical side, it is known that, when you get to your 80s and 90s, your body becomes exquisitely sensitive to drugs. For this reason, not only are lower doses sometimes used for the elderly, but their body doesn't clear the medications as swiftly and fully as does a young person's body. Thus, periodically, drug toxicity can develop in the elderly, simply because their system hasn't eliminated the daily dose of drugs as it should.

There are geriatric internists who strive to maintain a thorough list of their patient's specialists and the medications each prescribes. But they rarely have the support of those specialists. And without that support, which entails sharing of information after every visit, their hands are tied. It's not that doctors don't want to work together. It's rather that specialists in particular have a narrow field of vision about what they're treating. Simply by virtue of having selected a specialty, their tendency is to focus on that part of the patient's body exclusively, rather than viewing their patient as a whole.

A new approach to achieving this Holy Grail of being viewed and treated as a whole person, rather than as a heart or a spine, is being implemented at certain clinics and hospitals. It's called a "medical home." This is not the same as our current system of managed care, where the internist acts as gatekeeper, referring their patient to this or that specialist. In the medical home concept the internist is the head of a team, keeping track of treatments, making sure specialists know of a patient's progress and generally ensuring that treatment is seamless, no matter which physician a patient is seeing.

Now, take this concept and factor in the frailty, dementia, worries of old age. You can see immediately that this approach would be a godsend for the elderly. The model is not at all widespread yet, but it's still worth using this model when visiting with your parent's internist, to see whether they can provide some thing similar to it. I advise, though, that even those who are willing to attempt to keep track of what each specialist is proposing, will need your help. Since your parent's doctors will not consider themselves a team, you may find you'll have to do the legwork and phone work to make sure information from each specialist gets sent to your internist, to be added to your parent's general file.

This effort is hugely worthwhile, as I can personally attest. My experience is that, when doctors know that an elderly patient has an advocate who's tracking medications, and an internist who's interested in the overall well-being of your parent, they unconsciously pay more attention themselves. I have never encountered a doctor's assistant who wasn't willing to fax the information I requested to my mother's internist. And I've never encountered a physician who wasn't willing to take a few moments to explain to me their rational for changing a dosage or a drug.

So, get involved with your parent's physicians. Keep your own record of what drugs and dosages your parents use. Follow-up with the doctor's office after a visit and ask them to transmit their records to your parent's internist. These days this can be as simple as a short fax or email. If something significant changes with your parent's health, you'll be amazed at how helpful these small efforts will prove to be.

Elder Care: Your Caregivers as your Allies

2009-05-20T14:28:00.002-06:00

Some time ago, I gave special attention to the problem of caregiver abuse. Today I want to write about the incredible value to be gained from having a specific caregiver work for you for the long-term. I know that it is difficult to find a caregiver that will match your style, your needs, your criteria of care. But, if you do find such a person, hang on to them for all you're worth.

Having a private companion caregiver for an elderly parent can be a real boon. If you live some distance from your parent and cannot see them regularly, the caregiver can become the constant in your parent's life that you would be if you were able. This is not to say that the caregiver replaces you as a daughter or son. Not at all. It's simply that, by virtue of the frequency and consistency of their presence, they become a secure marker, a benchmark for your parents to attach themselves to.

There is a lot that is beneficial about this relationship. For an elderly person whose health or memory is failing, it is reassuring beyond measure to recognize a face and voice that is familiar. For them, it's especially comforting to have the physical presence of the caregiver. This is someone around whom they can relax, someone who knows them and whom they have known for so long that they do not need to be on their "best behavior." While they may not trade the intimacies that best friends share, there is much about the support that a best friend gives that a caregiver fulfills also.

As memory fades, it becomes very difficult to develop new relationships. This makes existing relationships priceless. And for this reason if no other, it makes sense to strive to build a long-term relationship with a caregiver. The rapport between a caregiver and your parent may become the most meaningful relationship your parent has after awhile.

Equally important in my view, is the information you can glean from long-term caregivers. A caregiver who has been around your parent for years will have known them when they were stronger and will have observed how they've changed or declined over time. This happens even without you requesting the caregiver to watch for signs. Thus, the caregiver can become your most immediate connection to small changes in your parents' condition that may indicate a bigger issue developing. Caregivers of course are priceless when there's a health crisis. But in this case, I'm talking about more intangible things which they will notice by virtue of their intimate knowledge of your parent's habits, routines, energy level, appetite, skin color, general comportment and more.

This is true even in Assisted Living facilities, where staff is supposed to be observing and acting on modest shifts in the residents' behavior. While this may be the stated objective of the facility staff and may inform their training, the blunt truth is that no one who's responsible for 30-50 people or more can possibly be as observant and have as good a recall of normalcy as an individual caregiver who has nothing to do but be around your parent. As well, by the time your parent moves into Assisted Living they probably are just a shadow of their former self. The staff at the facility may see them only as frail or unwell. But your caregiver, if she's been with your parent for a year or more, will know that your parent should have more energy, or should enjoy their food more, or should sleep less. Without it needing to take the tone of reporting on facility staff, your caregiver can become your eyes and ears on how the staff is handling your parent's needs, as well as how your parent is doing generally.

My point here is to urge you to put effort into developing a good relationship with your caregiver, if you are lucky enough to have one. Include them in your life. Tell them about your kids, your vacation, your concerns. Find out the same about them. Learn about their background and their aspirations. Ask them if things are going well for them or if they have worries. Look for any excuse at all to chat with them about things other than your parents. Involve them in decisions. Show sensitivity to their need for prompt payment and for time off, and to have a set schedule that allows them to take other jobs. Include them in decisions that could affect the number of hours they've been working for you. Seek their opinion, their advice, and ask plainly for their feedback on how they think your parent is doing.

The minutes that you spend on the phone with a caregiver will pay you back dividends tenfold. And will give you a view into the interior of your parent's day-to-day life that you could never otherwise get.

ELDER CARE, DEMENTIA & ALZHEIMERS: QUALITY OF LIFE

2009-05-11T08:03:00.003-06:00

Consider this a post-Mother's Day post, in which I am not going to swoon about the wonders of having a mother, or all the things my mother has done for me. There's plenty of that elsewhere in the blogosphere! What's on my mind, though, is triggered by thoughts of my mother. And what I'm thinking about this morning is quality of life.

This subject rears its head sporadically, usually when my mother has a health matter that crops up. The most recent health matter is two-fold: First, I learned that she has a severely narrowed aortic valve, which results in shortness of breath, dizziness (which in turn may make her experience nausea), swelling in her legs and other uncomfortable symptoms. Second, as her dementia has progressed she has disengaged from society, spending all her time in her apartment except when a caregiver arrives in the morning to urge her to go out for a walk or shopping.

I ask myself "What sort of quality of life does my mother have now?" Or, more specifically, "How do I evaluate what my mother's quality of life is?" And "What does quality of life mean in this situation?"

I am choosing my words carefully here. The key in this situation is not to judge whether your parent's QofL is good from YOUR perspective, but to put yourself in theer shoes. Here's how I go about it. In my mother's case, I would say that her QofL is not great, but OK. On a scale of 1-10, with 10 being best, I would say she's a 5. I'm going to list how I've done my evaluation, since what works for me may work for you as well:

Question A. Is she comfortable? My answer is yes.

Her various sources of pain, which she experienced as a terrible hammer hanging over her head during her pre-dementia days, are now controlled by a targeted array of medications that handle both the physical and the psychological components of the pain experience.
She has a spacious, yet manageable, apartment with lots of light, which means a lot to her.
Her environment in Assisted Living is safe and routinized, both of which lead to a sense of security and thereby a lessening of anxiety in dementia sufferers.

Question B. Does she have access to the things that were meaningful in her life. My answer is yes, but with a couple of caveats

Music, art, bridge, gardening, having a few close friends. These were my mother's passions. She can't do any of these things anymore, so initially I would say that has severely diminished her QofA. But her definition of herself has changed, too. At the start of her dementia memory loss, my mother remembered her bridge games and sorely missed them. She doesn't remember them now in that very tactile way of knowing that something meaningful is absent from her life. Same with music, which now confuses her instead of bringing joy.
My sister and I are the most meaningful things in her life, seconded by her companion caregivers. However, since her memory of the passage of days is severely limited now, she no longer misses us as she used to. A major component of missing anyone is the perception that a long time has passed since one last saw that person. Since my mother has no sense of the passage of hours or weeks or months, she doesn't experience the pain of lacking us in her life. She goes minute by minute, or sometimes day by day, and that's all she knows.

Question C: State of mind as it relates to QofL: so-so

Before moving to Assisted Living and getting the pain meds right, my mother was nearly addicted to Vicodin and Percocet, and had debilitating bouts of anxiety-induced nausea. She hasn't needed even a Tylenol for pain and has not mentioned nausea in over 6 months. This is great.
My mother's therapist and her psychiatrist both report statements from her that she wants to die. She has little energy left and spends most of her day lying down, dozing. They say she seems more resolutely down in the dumps than she was before (and this is a woman who's been on anti-depressants for 15 years). Given her situation, this seems like a perfectly lucid reaction on her part. She's losing her mind, her body is slowly failing her, she can't make friends because she can't remember anything. What's not to be depressed about?!

And now I have an "AH HA!!" moment. I've identified an area where I can make a meaningful difference to improve her QofL. I can work with her therapist and psychiatrist to modify her medication regimen to try to give her more energy during the day and to lessen her depression. If successful, then within the scope of her life as it is now, she will have an improved experience.

I hope you've gleaned some helpful tips from this. If you go through your own process of questioning what it is that defines YOUR parents' Quality of Life, you may find that, in their terms, much of their life is OK. And you also may identify some parts where you can make a noticeable difference, again on THEIR terms, in how they experience their end of days.

Elder Care: Dementia and the Inevitable Decline

2009-05-05T18:24:00.002-06:00

In one of my very first posts, I offered 10 suggestions to help manage the general stresses of caring for an elderly parent. If your parent has dementia, or perhaps is experiencing a physical rather than a cognitive decline because of a different disease, then you know how tough it is to watch that loss of competence.

It can become intolerably draining to witness the diminishing of your parents' world, while at the same time scrambling to help them maintain what quality of life remains to them. This is unlike the normal situations in your life, where you actions bring tangible responses and rewards commensurate with the effort you put in. When it comes to managing the care of a parent with dementia or other chronic disabling disease, you will at times put in huge effort, yet not receive the rewards you're accustomed to. There are some good reasons for this. Your parent may not want your help and so be unwilling to acknowledge what you're doing. Perhaps your parent will think they actually don't need your help and instead of responding with acceptance will push you away. Or your parent simply may no longer be in a condition to recognize that you're even helping at all.

There are times in this situation when it feels like you are dashing in every direction at once, plugging one hole after another to keep the dike from bursting open. And every time you succeed in plugging one hole, another starts leaking. What to do? How do you manage what needs to be done and also keep yourself from crumbling?

I urge anyone in the above situation to do one thing: take the time to find your core and listen to what it has to say about you and your parent. I know this sounds touchy-feely, too weirdly abstract to be of any use. Let me try to be more concrete about what I'm suggesting.

Every one of us has a place that, when everything else is stripped from us, represents the most essential elements that make us who we are. I visualize this as something tangible and concrete. You might see it as a tree trunk, which keeps you grounded despite the strong blowing winds of change. No matter which branches may break or bend during life's crises, that trunk keeps you upright and strong.

In the busyness of life, it's easy to lose touch with that strong center of yourself. What I'm suggesting here is that you use whatever means make sense to you to get back to it. For some, the means might be meditation, for others, talking things out with a loved one. Still others might reread long ago journals, or just commit to introspection during any quiet moment of the day. Whatever works for you is fine. But do what you need to do to get to that place where you can affirm for yourself what your efforts on your parents' behalf mean to you.

Going back to who you are and what you stand for, actually does help you accept that you're doing right by your parents. And, moreover, that you're doing the best you can. It also helps you identify if, in fact, you're not doing the right thing and need to change. From there, it's only another small step to learning that you can reward yourself for what you're doing. And that's ultimately what you're after. When you can do this, when you no longer need your parent to thank you or affirm what you've done for them, you may find that the energy drain you've been experiencing diminishes. You may feel less like a helpless twig caught in a tornado, and more like a strong, upright, magnificent tree who's simply grown a new branch.

OK, enough with the metaphors!!! If you get my point and have a comment on what's worked for you, I'd love to hear about it.

Elder Care: Little Clues to a Change in Condition

2009-04-22T18:01:00.009-06:00

Suppose your elderly parent has been trundling along at the same level of cognitive functioning or physical health for some months. As a lay person, how can you assess on your own the changes in their condition? Do you have to have medical knowledge in order to know that something's different? Actually, in many cases, you can determine this yourself if you're willing to keep your eyes open for little clues.

Take, for example, a dementia sufferer. In my hypothetical example, my dementia sufferer (I'll call her DS) has noticeable short-term memory loss. Still, DS knows the days of the week. She gets herself to all meals on her own. She's well-groomed and enjoys being tastefully dressed. She likes going to her favorite shops to snoop around, or for a walk at the beach, knows where she is and where she wants to go. She remembers significant dates, too, and the celebrations that go with them. She can hold a conversation, although it's a repetitive one, with the same question being raised or statement being made every few minutes. Nevertheless, people who talk with DS casually would be surprised to learn that she's already well into the decline of dementia.

Over a 6-month period, DS's dementia progresses with some sharp drops in cognitive functioning. What are the clues?
Clue number 1: As per family tradition, DS phones her children on Thanksgiving Day. Four weeks later, she does not call her children on Christmas morning.
Clue number 2: DS wears the same T-shirt for a week. Her hair is sometimes disheveled at meals.
Clue number 3: A beloved daughter's birthday draws near and DS cannot remember that daughter's birthdate.
Clue number 4: Reading material is scattered around her apartment, with every magazine turned open to an article.

Any one of these clues might not be considered big enough or definitive enough to indicate a significant shift in DS's dementia. But them together and it's obvious that DS has experienced a steep decline since Thanksgiving. She's not grooming herself well, crucial dates which she's known most of her life have vanished from memory, she's unable to remember a sentence long enough to actually read and finish a magazine article.

Of course, this is just an example. Still, you might try to collect bits of information pertinent to your own parent's condition and then track it. Start with a baseline, which is simple to do. Just jot down a few observations on the essential aspects of your own parent's present condition. Start to keep your eyes open for little clues, such as I made up above. Teach yourself to value the small, indirect bits of information that form your parent's life and don't wait for just the big changes. Keep a record of your observations (and don't self-edit!!). Every 3 or 6 months, read back over what you've noted down. Doing this will help you put together a broad pattern of health or decline. You'll be amazed at what you can learn from it.

Elder Care: Long-Distance Caregiving

2009-04-22T17:29:00.007-06:00

One of the more difficult issues to manage when caring for an elderly person is knowing when there's been a paradigm shift in their mental or physical well-being that's significant enough to warrant action on your part. I've been ruminating about this quite a bit lately, in part because I've been overseas for two months. But also because, even when I'm at home, I'm 1500 miles away from where my mother is.

I rarely see my mother, yet I'm responsible for managing her care. How do I do this when I'm so far away? I can summarize the gist of what I do in the following list. I am aware that the frequency of what I do may seem lackadaisical to some, while others may find it more than they have time for. As you read this list, don't get stuck on how often I do something. Take the general types of actions and communication I'm suggesting and see if you can make it work for you in your own way.

Here we go:

I work hard to open and then maintain channels of communication with the directors and staff at my mother's assisted living facility. They are my most immediate eyes and ears. I speak with them at minimum quarterly. In between I email them updates on anything of interest from my mother's doctors, so they know I value their attention to these things. If there's something that I deem of critical importance to me, I don't hesitate to pick up the phone and talk to them. I try not to leap to hyper-critical conclusions when something seems to go wrong (though this is hard sometimes!). The more I talk with the directors, the more I learn there are usually two or more valid sides to every issue. And the more they speak with me, the better sense they have of my involvement with my mother's care and what I need from them.
I keep in touch with my mother's medical specialists. Although I've asked each of them to inform the Geriatric Specialist who's the overseer of my mother's health after any visit with my mother, I realize they don't always get to this. Instead, I get reports from the Care Manager who accompanies my mother to each doctor visit. If she hasn't been able to get a report from the doctor herself, I will call the physician's nurse and ask her to fill me in. Then, I circulate that information by email or fax to the other medical specialists myself. I've gotten only thank yous for doing this. Every doctor seems to appreciate having this extra information in their file.
Every 4-6 weeks, I speak with my mother's two morning companions who take her on morning outings 5 days a week. When we talk I express to them how appreciative I am of their insights, even if they haven't told me much new. I also give them emotional support and kudos for their caring and attention to my mother's needs. And I offer suggestions of what they can do to handle whatever tricky situation(s) they may mention to me. I want them to know that I'm grateful for their loyalty. And I also want them to know that I'm aware of what they're doing, even though I'm far away.
Lastly, and most importantly, my sister (who lives near my mother) and I continually reevaluate the role that each of us plays in supporting our mother. She regularly updates me on what she sees and what she's done during her frequent visits to my mother. I factor her assessments the setting of appointments, the follow-through that I ask of the assisted living staff, the information that my mother's companions need to know about her and more.

When managing an elderly person's care from afar, the key is building and nurturing a circle of communication. You might think that the most important word in that last sentence is "communication." It isn't. The most important word is "circle." Why? Well, think of a bicycle wheel. You're the hub. The spokes reach out from you to the significant others on the team, whose presence enables you to manage appropriately. And the wheel to which the spokes connect ensures that the information that's vital to everyone gets to them, not just to you. Without that potential to circulate, information is lifeless...it's just data. To transform information into actionable elements you have to help it get beyond you, to the others who need it. Doing so is what will make you more comfortable with your parent's well-being, even when you can't check on them yourself. And, as important, it'll give you options and resources to call on when an emergency arises.

Elder Care: Making Medical Decisions

2009-04-04T16:28:00.006-06:00

One of the things that concerns me in managing my elderly mother's care, is that I'm placed in a position of deciding matters of life and death, or, less dramatically, physical well-being. Over all, I'm a decisive person. I don't prevaricate and I enjoy making decisions and then moving on. But I'm not a doctor nor do I have any medical background. Thus, as her caregiver, I don't believe I have the proper training or information to make the best decision, or in some cases, perhaps even the right decision. What I do have is this:
1. a good gut instinct,
2. access to information and the ability to use it,
3. a wonderful, helpful and knowledgeable sister,
4. a fantastic care manager who's a nurse as well,
5. a firm handle on what I believe is the direction my mother's medical care should take.

I don't underestimate the value of any of the above ingredients to good decision-making. Nevertheless, the whole arena of making medical decisions for an elderly parent is charged with subjective issues. Face it, this is a parent we're talking about, which on its own makes decision-making tough. Add to that that medical and health issues in the geriatric arena often are emergencies, thus inherently not given to calm, thoughtful processing of information. As well, the momentum of medical care is such that one tends to be advised to "do whatever can be done" regardless of the long-term benefits. But, in the case of an elderly patient, how long is "long term" anyway? Or better still, how long is "long term" to you and your parents?

I listened to an interview of Dr. Robert Martensen on the public radio program Fresh Air the other day. If you want to listen to the interview, click here. Dr. Martensen, a bioethicist and ER doctor, had a lot to say about how inadequate doctors usually are in a) giving enough information to patients and their advocates b) knowing enough about the patient to make the information pertinent to their situation, and c) allowing enough time for patients and advocates to discuss the situation and options for care in a meaningful and substantive way.

Dr. Martensen's comments made me realize what's essential in the medical situations elder care givers face. What we have to do is modify the information the doctor gives, so that it's relevant to us and our situation, rather than being just generic medical information about a condition.

Think about it. The only way to make a good decision is if the information you have is specific to your needs, your ethics, your values, your desired outcomes. When you look at it this way, it's clear that you need to do some homework ahead of time, so you know what your desired outcomes are. For example, take the issue of health care directives. It's one thing to help your parent put an advance healthcare directive in place. It's another to work through for yourself whether you really will be able to instruct the withholding of a potentially life-saving drug or procedure when the time comes. Put another way, it's easy enough to fill in a form; it may not be so easy to implement the instructions of that form when faced with mortality.

I guess what's become a little clearer for me is that my ability to make the best call when the time comes, and my own peace of mind about it, will be based on the thinking and evaluation I do right now. It behooves all of us to spend time sorting through the issues on our own, before we're faced with having to make a crucial decision in real time.

I've been gone too long!

2009-04-02T06:32:00.002-06:00

To everyone who has been reading this blog over ths past two months, thank you for bearing with my long absence. Since end of January I've been on extended trip through India. Yes, I know that I could have been posting from there. But, to be honest, it was good to take a break and it also was admittedly difficult to focus my mind on the matters here at hand while also trying to absorb everything I was seeing around me.

I'm on my way home now and plan to start posting again within a week.
You've all been great to continue checking in. If there are particular issues on your mind that we should start (or resume) talking about, please let me know.

Elder Care: Letting the Sadness Be

2009-01-27T10:29:00.007-07:00

Anyone caring for an elderly relative/parent, knows that, as short-term memory fades, what's left are the memories of long ago. These include what are often considered to be happier times: your childhood, a family all together on holidays, your parent's youth, their siblings, their family life.

As I go through this with my own mother, I've been assuming that, through the selective subconscious, the long-term memories she would call up would all be happy ones. After all, as we go through life we often suppress difficult or unhappy occasions. And we don't discuss or necessarily even think about them later in life. I figured that long-suppressed memories would stay suppressed. Not so.

As the threads and trappings of an active life are stripped away, it allows long-ago traumas and sadness to re-emerge. My inclination when I perceive that my mother is sad, is to try to inject some levity. I want her to be less sad. I want to distract her with something pleasant. I want to fix her sadness and make it go away.

Marc Agronin, a Florida geriatric psychitrist, has written an article on this which I found extraordinarily moving. I want to present one particular paragraph verbatim, which is both revelatory and stirring in its simplicity.

"Sometimes the perpetual sadness of many older survivors is not to be healed but shared. Over time, as memories fade and the voices of lost loved ones grow quieter, all that remains is a closely guarded sadness, persisting as a substitute for the losses. Any attempt to ease this emotion may be a threat to painful but beloved remnants of memory. What some survivors seek is not medicine or therapy: it is the attentive presence of a doctor and others to serve as the next generation of witnesses."

Think of a museum curator carefully cleaning the work of a student off the painting of an Old Master. Slowly a new work appears, one with infinitely more depth and a completely different story to tell. Dr. Agronin's article appeared in the New York Times on December 23, 2008. I urge you to read it in its entirety.

Employee benefit: elder care

2009-01-27T10:01:00.002-07:00

I read in an article recently that, according to the National Alliance for Caregiving, family members spend an average of 22 hours per week on care for their elderly relatives. Another study, published in 2002, notes that 35 percent of employees care for an elderly relative. Seven years later in 2009, that number is surely higher.

If you're caring for an aged parent in your home, or helping to manage their care nearby, you already know how much time you devote to this job. Not all of it is going to be spent before or after you come home from work. You may have to use your own sick or vacation time to take your parent to a doctor's appointment. Perhaps you need to check in on them during the day. And then there may be meals to be provided, emergencies, a whole host of demands both predictable and not, that impinge on your work day and, indirectly, on the mental clarity you can focus on your job.

There's a growing awareness among employers that elder care issues can affect their employees. Some employers are now offering backup care benefits for just these situations. Like other types of insurance benefits, backup care benefits provide highly subsidized hourly rates, and vetted caregivers, from a selected provider. For example, if you need a caregiver for a few hours here and there, the benefit might pay as much as 80% of the hourly rate, leaving you with a modest few dollars per hours to pay for the service.

Right now it is mostly very large companies that offer this benefit. But I want to publicize it here and urge you to speak to your employer about offering this benefit as an option. It's no longer uncommon to provide backup care benefits for child rearing emergencies. And it's quite possible that that one single service provider could create a program that provides backup care services both for children and for the elderly. Another option could be to find out whom else among your co-workers needs this type of backup care. If your employer can't offer you the benefit as part of insurance, a group of you could select a provider on your own and, by sheer force of numbers, negotiate a lower rate with them.

Sometimes all it takes is more people making their need for certain types of coverage known, for a change to take place. Either way, the benefit to your employer is clear: less absenteeism and better productivity from employees.

Elder Care: Communication variations

2009-01-19T15:23:00.006-07:00

Each time I talk to my aged mother on the phone, I find myself pondering the puzzle of communicating with an elderly dementia sufferer. It's not that my mother doesn't understand what I'm saying. She understands me quite well and can respond appropriately, too. But, because of her short-term memory deficit, which is severe, this can only take us so far. For example, she'll ask me how the weather is where I live. I'll tell her and ask her how the weather is where she lives. We'll go back and forth a few times with pertinent comments on the weather. And then she'll ask me again how the weather is at my place. The same thing happens with any other line of conversation I may start. We can get two or three exchanges in and then she's already forgotten where we started. Thinking she's uncovered a new subject to talk to me about she'll revert to the original question again. And so it goes.

There's nothing wrong with these short, superficial conversations. Before dementia set in, I would talk with my mother once a week or so, and that level of contact and communication was sufficient. At that stage in her life, my mother still had outside contacts, friends and activities which provided stimulation for her. Now that dementia has shrunk her world to a very small space, I find myself struggling to determine for myself what communication means at this stage of my mother's life.

I realized recently that communication per se serves various needs. Obviously, a phone call facilitates the simple transmission of information. But there's more to it than that. There's also the strengthening of the thread that binds us across a long distance. There's the easing of loneliness during a long, quiet day. There's the proof that connections still exist. There's the stimulation to her brain that comes from the need to marshall thoughts and express ideas. And more. Looking at each of these elements independently, I've come up with a few ways to satisfy her needs, beyond the phone call.

1. Hearing a beloved human voice: I confess I don't always have something special to say to my elderly mother. And she's not always able to carry on much of a conversation. Yet I know it's meaningful for her to hear my voice. In between calls, I'll leave messages for her on her answering machine. That way she knows I'm thinking of her, even though we're not engaging in a phone chat.

2. Pet therapy: A brain with dementia is especially in need of stimulus. As I see my mother withdrawing from social activities because she can't follow what's going on, it becomes harder to find ways to engage her. Enter animals. Animals are the gentlest of stimulators. Their presence is non-threatening and non-demanding. They're simply there, willing to be touched, cuddled, played with, watched. A tremendous amount of good comes from this. It's novel, it's fun and funny, it's different each time the animal comes, it provides variety, it stimulates memories. I could go on and on. Many assisted living facilities schedule weekly visits from animal shelters, who bring an engaging assortment of critters for the residents to play with. Perhaps your own caregivers or care manager has a pet they'd be willing to bring along to your parent's house from time to time. How about visits to the zoo?

3. Communication can be more frequent if there's a written option. Take a look at my post about the Presto email printing service. Using this machine and service can broaden an isolated older parent's world immensely. While this system doesn't allow immediate two-way contact, it can provide a platform from which you can dive into more topics of conversation. Use the photograph, or the message you emailed your parent to spark new avenues of communication.

4. Reminiscence is a strong pull among the elderly. But it's not possible to always lead your parent down memory lane in every phone call. How about setting up a long-term memory project, which you can revisit with them from time to time? If your parent is able to follow through on tasks independently, I encourage you to give them a micro-cassette recorder with a bunch of blank tapes, on which to record the tales of their youth, your younger years, whatever appeals to them from their memory vault. It may feel awkward to them to speak into the recorder at first, so you can help them get started by selecting the topic you want them to reminisce about and giving them a list of questions. Or, you can do this in person with them the first time or two, till they get the hang of it. You'll need your own microcassette recorder on which to play their tapes to transcribe them. You could also have a copying service copy the recordings onto CDs for you and your family. This sort of project can span many months and include looking through photographs, getting supplemental information from your relatives...a whole host of opportunities limited only by your own creativity.

Well, these are just a few of the ways in which I've broadened my definition of communication in an attempt to offer and receive more from my contact with my mother. Do you have other ways of creative communication with the elderly parent you are caregiver for, that you can share?

Elder Care: Emailing a parent who doesn't have a computer

2009-01-15T16:15:00.006-07:00

First, apologies for my evident sloth before, during and after the holidays. But, that's over now, and I have a number of items stored up that I'm excited to share with other elder caregivers and care managers.

The item I'm currently most thrilled about is the Presto machine and service. I know this sounds like an espresso machine, but it isn't. Basically it's an HP printer/fax, combined with an email printing service, which enables someone who doesn't have a computer to receive emails from you in printed form.

Here's why I'm thrilled. I live far away from my aging mother, so for months at a time my only contact with her is via phone calls. As my mother sinks into the dark recesses of dementia her world has shrunk to the very immediate present. Lately, I've realized that it's become hard for her to carry on more extended conversations, because she can't remember what the original topic was about. After we've reviewed her weather and my weather, there's nothing much else to talk about. And the upshot of that is that I am less inclined to call her, even though I'm aware that she needs the contact with me even more. What to do?

Enter the Presto machine and service combo. Here's how it works. You buy the printing machine for your parent. The machine will reside in their home. This is a one-time capital outlay of between $120-$150 depending from whom you purchase it. Along with it, you sign up for the Presto service, which costs about $12.50 a month for a year's service. When you sign up, you create an email address for your parent(s), and enter in the email addresses of all those who are allowed to send email to them. This ensures no spam is transmitted to your folks' home. As well, you declare the 3 times per day when printed emails should be transmitted to the printer. All of this is adjustable as time passes.

Here's what the Presto service does:

It accumulates all emails to your parent's email address.
It prints them out on eye-catching templates along with whatever photos you may attach.
Thrice daily the Presto machine checks your parent's mailbox automatically for waiting transmissions and then prints them out, again, automatically.
All this happens right in your parent's home with their having to lift a finger.
Voila, your parent has the latest news from you (your brother, a distant cousin), along with photographs (if you wish), to have and to hold and to review and to show their friends.
Other good uses for the machine are to send reminders to parents: about appointments, taking their medication, picking up an item at the store. If you're travelling it's a great way to keep in touch without worrying about time zones or the expense of overseas calls. And what about instant photos of grandchildrens' birthdays, soccer games, school plays, and all those other aspects of daily life that a faraway grandparent so often misses.

Honestly, what a wonderful thing the Presto is. I'm so happy about this I can hardly stand it. Of course, the printed page doesn't replace the sound of a loved one's voice. And keep in mind this is a one-way service, i.e., one cannot use the Presto machine to send you emails as it's purely a receiver and printer. For me that's no obstacle as my elderly mother wouldn't be able to figure out how to use it anyway. The simplicity and automatism of this device is its beauty. In my view, it just may add a whole new aspect to quality of life, helping many family members keep in closer touch than they otherwise could.

Click on this link to go to the Presto website

Elder Care: Making it through the Holidays

2008-12-04T10:45:00.007-07:00

I've been thinking about the holiday season and why it is that this is a difficult time for those whose parents are old, frail and, possibly, living far away. What's really going on with this? I've thought through all the standard reasons given and come up with my own synthesis of what happens during this time of year.

If you're like me, this time of year calls up years of family celebrations while you were growing up. We weren't a large family, just my sister and I, with family relatives all living overseas. But my parents celebrated each holiday with gusto.

At Thanksgiving there were always friends invited over and a gorgeous table set by my mother, who had inimitable taste. I recall the annual Thanksgiving mornings spent on my favorite assigned chores: polishing the silver and shining the Red Delicious apples, then creating my own version of a striking centerpiece made of seasonal fruits. And the flurry of activity as friends arrived and were settled in their guest rooms for the overnight visit. At Christmas, the same flare was brought to the observances. First picking out a suitable tree, just the right height and triangular shape, always a sprucy-sort that was dense with branches. Then, the emergence of boxes of fabulous tree decorations, the ornaments nestled in crinkly tissue paper. For us, Christmas Eve dinner was always special, and the excitement of not knowing when Santa would come down the chimney was nearly unbearable.

These rituals of celebration which we followed every year are indelibly etched in my mind. Even so, when it comes to Thanksgiving or Christmas I don't really long for those bygone days. But every one of my senses does remember them in detail. If my own memories of those times are so rich, how much more so must they be for my mother, who now lives in a wonderful assisted living residence, but is nevertheless alone there and without close friends or family?

This time of year, unlike any other, drives home the difference between what was then and what is now. At other times of year, I am able to mask the reality of my elderly mother's present life. But Thanksgiving and Christmas, which are all bound up in tradition and family, make it abundantly clear how reduced her world has become.

This saddens me, but it doesn't drive me into a frenzy of compensating for what isn't. I find it's more helpful simply to recognize how I feel about things, and why I feel the way I do, and remain philosophical about it. I make a specific choice to dwell on what's going well and appreciate the existence of those things. It's true my mother doesn't have the family gatherings around her such as she used to create with such verve and style. That is sad. Yet it's also true that she is surrounded by kind and engaging people, her health is watched over by competent and sympathetic nurses, she has her own lovely small apartment, and she's able to go out to her favorite spot by the ocean most days of the week. These are things I'm really grateful for.

Elder Care: Powerful Tools for Caregivers

2008-11-30T09:42:00.005-07:00

I've taken the title for this post from the 6-week course given by Legacy Caregiver Services. I already mentioned Legacy in my previous post. I have had the opportunity now to read The Caregiver Helpbook which they offer to class participants.

The class and the book are all about helping caregivers for elderly parents or relatives (or spouses) develop self-care tools to reduce personal stress, communicate their needs to family and health care providers, deal more effectively with challenging situations, and more. The book is full of practical information offered in a straightforward manner. It doesn't talk down and it's not full of psycho-speak. I found every page had something of value to offer me, whether it was something I hadn't thought of or a simple validation that, yes, I was doing the right thing.

If I'm rhapsodizing a bit too much here, it's only because I haven't ever found an offering that is as substantive and validating as what Legacy provides (and, no, I'm not on their payroll!!). I feel quite heartened that a book and a class like those offered by Legacy exist. It's good to have a resource that not only recognizes the subjective nature of what we, as caregivers for elderly relatives, each experience, but offers thoughtful and provocative ideas to help intelligent people help themselves. And lots of resources with addresses and phone numbers, too.

If you want to find out if there's a course offered in your area, or find out more about the book, contact Leslie Congleton at 503/413-7032 or email Leslie via this link.

Elder Care: caregiver training and more

2008-11-20T11:08:00.008-07:00

Thank you to Ryan Malone, who commented on my previous post Dementia and Montessori. I want to call your attention to Ryan's site: Inside Assisted Living. I urge you to peruse the information he has collected. It's full of good ideas, and also has links to three other blogs on elder care. I've looked at a number of sites and blogs that present such information and I find most of them are a bit weak. What Ryan's put together, and the blogs he links to, are topnotch. I'm not going to repeat the blog links here, because I hope you'll take some time to go to Ryan's site and get into them yourself.

Another exciting resource I've found is Legacy Caregiver Services, in Portland Oregon. They have developed a 6-week course for family members caring for loved ones, called Powerful Tools for Caregivers. To spread the word, they've trained leaders to present the course all over the country. Judging by the course outline on their website, they've really captured the essence of what people in our situation want and need to know about. I was glad to see there's a good overlap between the issues I'm getting into here on Mimi's Place, and what they discuss.

As part of the course, you receive a handbook, which Legacy has been gracious enough to send to me. Once I have a chance to read it I'll post information on it here. So check back..... And to learn about their class, go to their website Legacy Health Services. You'll need to email them to find out if there's a class being offered near you.

Do you know of any other really solid websites or other offerings, that actually get to the nitty-gritty of our situation? If so, please email me about them.

Elder Care: special attention for dementia

2008-11-09T16:09:00.009-07:00

There was an interesting article in the New York Times Education section on Sunday Nov. 2. Titled Coming Full Circle, it describes the use of Maria Montessori's teaching techniques to create activities for elderly people with Alzheimer's and other memory deficiencies.

Some assisted living and dementia care facilities are now using the full-time program developed by Dr. Cameron Camp, an experimental psychologist. His program uses Montessori techniques to "build on existing skills and habits, with the goal of improving quality of life and independence by using cognitive strengths to neutralize weaknesses, making frequent use of repetition to create unconscious learning." More specifically, Dr. Camp says, "the key to working with someone (with memory deficiencies) is to build on the skills she has retained--writing, reading, playing the piano--rather than letting her deficits limit her life."

To quote further from the article,"A common misconception about people with dementia, Dr. Camp said, is that they no longer learn. But they do: residents learn to find their dining room table, for example, well after the onset of Alzheimer's disease. And because they no longer have the higher brain function they had as adults, he reasoned, they are well suited to Montessori."

A number of facilities around the country are now using the programs and materials developed by Dr. Camp through the Myers Research Institute in Beachwood, Ohio. Again, quoting Dr. Camp, "We start by saying that a person with dementia is a normal person with memory deficits. Then you can circumvent the deficits by using the strengths. That's how you create what Montessori called 'normalized environments,' meaning environments that challenge you but let you succeed."

I find this fascinating. What a wonderful approach to the dementia conundrum. Nobody per se is talking about restoring dignity or self-respect, but you can see from the description of these programs that that is the outcome.

My elderly mother who has dementia is in an assisted living facility that runs such a program, which they call Circle of Friends. My sister and I enrolled her in the program, but she had only negative things to say about it and refused to attend for more than a few minutes. In reading this article, I now think that perhaps she was still too disoriented by her recent move to assisted living and couldn't focus on the the activities. Her response was to say something insulting and leave in a huff. Now I'm hopeful that, as her memory loss progresses, she may actually be more acquiescent about staying in the program. I feel very lucky that she's in a facility that is forward-thinking enough to offer such a program.

If you are the caregiver of an elderly parent is in assisted living or Alzheimer's care, check if they have a program like this. And bring this program to their attention. The more places that offer this sort of program, the better! Here's the link to the article, which is worth reading in its entirety: www.nytimes.com/2008/11/02/education/edlife/montessori.html?_r=1&ref=edlife&oref=slogin. This should take you directly to the article. If for some reason this link doesn't work, just go to www.nytimes.com/edlife and search the issue from Nov. 2, 2008 for the article Coming Full Circle.

Elder Care, Stress and Ego

2008-11-08T15:15:00.007-07:00

The issue I wrote about last time had to do with handling the guilt of not being able to do everything you, as caregiver, think needs to be done for your elderly parent. There was a great comment from Linda in response to my last post. She advises something which I hadn't thought about: think about how your parents see themselves and then try to do what's needed to support their vision of themselves, rather than your vision of them.

This is a wise statement in a very simple form.

I think that in order to implement this, you have to take some of your ego out of the picture. In some respects, elder care giving for parents can become weirdly competitive. Here are some hypothetical examples, just to explain my point: So-and-so's parents are 99 and still able to live at home, but yours have been in assisted living for years and are only in their 80s. Or, so-and-so's parents have so many friends and go out visiting all the time, but yours can't seem to get along with anyone and spend their time alone.

I'm making this up, but you can see where it leads. As we talk to each other about our respective situations, inevitably comparisons crop up. I don't know about you, but I do find myself feeling wistful when I think someone else's setup is so much more together and fulfilling than mine. And I start to wonder then whether I should be doing things differently or if I could do things better.

If I do a good job of thinking in the terms that Linda suggests, I'll be able to refocus on the fact that the way things are set up for my elderly mother, who has dementia, are really ideal for her. They're not going to change her into the sort of elderly person I wish she could be, but they are perfect for her as she is. And, after all, that's the point, isn't it?

Elder Care: Managing Stress when you can't do everything

2008-11-05T15:46:00.009-07:00

In one of my early posts, I presented a list of 10 ways to reduce the stress of having an elderly parent who needs your care. I'd like to return to that list, to share some thoughts on my suggestion #5: accepting that you may not be able to do everything that could be done for you parent.

How do you do this? If you recognize that something needs attention, how can you then ignore it?

There are several facets to this issue that may help explain it:

1. Realize that you are already skilled at selecting what to do versus what you can't or won't do. I offer for your consideration that in all aspects of your life you are already making choices about what you will do among the many options available to you. You do this when you prepare a meal, when you attend your son's soccer game, when you enroll in a night class at the local college, when you get up early to exercise before work. Every one of these examples presents you with a choice. Making these choices is so common in all adult lives that we don't even realize that we are accepting not to do some things when we decide to do others.

In each example above, the decision you make, by its very nature, means that you are not going to be doing something else during that time. The difference between my examples and making the same choices for your parent, is that you are already so practiced at the choices in my example, that you probably don't even think about them. Nevertheless, in each example I give, choices do exist. If you deconstruct for yourself why you are going to your son's soccer game (instead of working on a house project), or why you're getting up early to exercise (instead of sleeping in), you will find reasons for each choice you've made. And you'll relearn how you've made your priorities. That same goes for deciding what to do or not to do as a caregiver for your parents.

2. The notion of not doing everything that could be done for your parents is charged with guilt. Unlike some other aspects of life, it seems there's an unwritten code that, when it comes to aging or elderly parents, everyone's expected to be a super-hero. My question is: If it's unreasonable to believe that you can do everything in other parts of your life, why do you think you should now be able to do everything that needs to be done for your parent? If the former's not possible, why is the latter supposed to be possible? The obvious answer is simply: It isn't possible. Yet because this is our parents we're talking about, not doing everything makes you feel guilty.

I think some of this guilt comes from the fact that we no longer live in extended families, yet we still recognize what the extended family provided. It used to be status quo that the elderly and infirm lived with or near their relatives, that sisters, cousins, et al were nearby, and everyone could pitch in to help care for those who needed it. In our society, which is almost defiantly mobile, that support net no longer exists. It's great that we can all live where and how we want, but many people are also wistful for that sense of community and the support of family which have been lost in the process of endless moving. The one person who's left to take care of a nearby parent shoulders the burden of what used to be done by the extended family. We still know what could be done if there were lots of relatives around and because of that, we feel guilty that we can't accomplish it on our own. Remind yourself that you're only one person. It is not a platitude to say there's only so much that one person can do.

3. Doing the best you can is good enough. Here the issue is accepting that indeed you are doing the best you can. Deep down inside, no parent expects more from their child. Yes, in the throes of sorrows, aches and uncertainties, your parent may well gripe about many things. I think that's normal. It's not fun to feel bad all day long, to be worried about your health, to be confused. Putting aside our parents, many of us would agree that we have experienced those close to us dumping their aggravations on us. In my view that comes with the territory of being close to someone....you get great love and you also are the closest at hand and so get lashed out at from time to time. It seems it's no different with parents. But (and this is a big caveat), that doesn't mean that everything your parent says they need, or everything you may recognize could help them, has to be fulfilled. And it doesn't mean that, just because your parent asks for something, that they really need it or expect to get it. Sometimes it just helps them to express a wish, even when they know that reality won't match it.

To diminish the stress of not being able to do everything, you have to keep foremost in mind all the things that you are doing, and doing well. Congratulate yourself for those. Focus on what you've accomplished for your parent, whether small or large. This could be things like the fact that you are indeed calling them every day (and, no, you're not able to visit them every day and that's OK). Or you've set up a reliable meal service for them (and, no, you're not able to provide them with meals at your house every day, and that's OK). Or that you've gotten them involved in a fun and engaging outing once a week (which you can't attend with them, and that's OK).

I hope you see what I'm driving at here. If you train your mind to appreciate what you have accomplished, and allow yourself to feel good about that, there'll be less and less room for the distress of not doing everything.

Elder Care: Focuse on Care Managers

2008-10-09T16:36:00.009-06:00

I've written a couple of posts on caregivers for the elderly and infirm. There's much that can be said on that subject and I will be returning to it. For right now, I'd like to draw attention to Care Managers who assist caregivers for the aged, those with dementia and others.

A Care Manager is an essential element of the parental eldercare package. This is particularly so for those who live far away from their parent, or who are so tremendously busy with work and family that they cannot do all the things that their parent needs. I also want to offer my opinion that, as our parents age and lose abilities, it becomes next to impossible to know what's really going on if we're not there every day. This pertains not only to how they're doing in their home, but also to their medical care and their medical needs. I'm talking about objective information here, not the subjective view of friends and neighbors who themselves may not be fully "with it."

In my experience, a quality Care Manager becomes your surrogate, doing what you'd otherwise do if you lived nearby. They also become your advocate with various services, ensuring your parent's living situation is as good as it can be. And they can become your medical watchdog, keeping tabs on chronic and acute medical issues so that changes in health are quickly identified and treated.

So, we have:
Surrogate
Advocate
Watchdog

Phew! That's a lot to ask of one person. And where would one find such a gem anyway? I have worked with Care Managers (CMs) from two different sources: through a caregiver agency and privately.

1. Agency CMs: Many agencies who provide caregivers also assign a Care Manager to each client. Generally speaking, the agency CM's job is to be the main client contact with you, i.e., they are the one to call with new needs, complaints, changes. etc. As well, they introduce new caregivers when needed, help ensure your parent is watched if a current caregiver is unexpectedly absent, check that whatever program is in place is actually being followed, handle emergencies, and, possibly, help setup medications.
Agency CMs typically have a heavy client load, being assigned as many as 25 clients at one time. You can see immediately that, even with the best will in the world, an agency CM has only a very limited amount of time they can spend with any one client. In my view, that's a serious drawback. My experience has been that, even though agency CMs give their all to their jobs, they are able to do only very basic supervision and monitoring, along with appearing in the ER if there's an emergency, and little else. Thus, in my view an Agency CM is best suited for low-maintenance cases only.

2. Private Care Managers: Care Managers who work independently rather than under the auspices of an agency, typically do so because they want to be able to focus more attention on fewer clients. As with caregivers, there is no specific degree or certification that a CM must have in order to take on such work. However, the more capable CMs tend to have a background in nursing, geriatric care, psychology or social work, each of which provides appropriate experience and a good personality type for working with the elderly. Private CMs take the risk of potentially not always having a full workload, but gain the reward of being able to determine a client load for themselves that maximizes their ability to serve each client well. A private CM may be well-used to high-maintenance cases, or situations where your parent's needs shift over time.

Regardless of whether you use an independent or agency CM, it's up to you to establislh how much or little involvement from your CM you require. Our mother's CM is an LVN. She's a trusted resource for scheduling and attending doctor appointments, relaying the doctor's report to me, attending ER visits, checking the medications and general health info at the nurse's station at my mother's assisted living facility, keeping tabs generally on how my mother is doing, meeting with my mother's companion caregivers monthly, explaining medical procedures to me, and more. She's an excellent sounding board for ideas, because she has broader exposure to elder care issues through her work than I could possibly have. Her time may fluctuate from a few hours over 2 weeks, to much more if there's an emergency room visit to attend. She's a friend and a professional, whom we rely on implicitly.

Finding a private care manager takes some networking and interviewing. A good resource to start with is the National Association of Geriatric Care Managers http://www.caremanager.org/ Many cities have a Jewish Family Service, an invaluable resource for assistance. There's also the Social Services department at your local hospital. As with caregivers, be prepared to spend as much time as you possibly can networking for options, interviewing and talking to references.

My final suggestion is assess for yourself where a CM can make the most meaningful contribution to your time and your peace of mind. Perhaps it's attending doctor appointments only. Maybe it's just managing the caregivers you've hired. Be creative and be flexible. Give the relationship time to develop, so you can observe for yourself what your CMs strengths are. A CM can be a wonderful addition to the care team. And they become a true lifeline if something should go wrong with your parent and you can't be there.

I'd love to know about others' experience with Care Managers. Do you have anything you can share on this aspect of elder care?

Great websites

2008-10-03T14:57:00.004-06:00

I want to draw your attention to something I've just added to this blog site: a list of websites and blogs that I think offer the best of information and ideas for those caring for their elderly parents.

I'm not actively going out to find these sites. However, when an outstanding or especially useful one comes to my attention I'm going to share it with you here.

Look on the sidebar at right, under the heading Websites I Like, and take a little time to peruse what these sites offer:

Aging in Place: a round up of various cool technology that facilitates seniors staying at home. Also offers musings related to what seniors really need, all in a well-written and clear presentation by Lauri Orlov.

ShirleyBoard: offers some useful online tools to help organize the plethora of paperwork and info that caregivers have to manage. ShirleyBoard also links to:

SeniorCare Marketer: Although this site defines itself as geared to the business of aging, I found it contains excellent posts on issues related to the future of senior care, along with useful links. It's refreshing to read well-written, thoughtful pieces about the industry of aging. Personally I find such knowledge useful in evaluating the services and products I need, along with helping me make sure my expectations are valid.

I'm in the midst of evaluating a very unusual website that I think you'll love. Check back soon.

Elder Care : When is the right time to move?

2008-09-30T15:14:00.008-06:00

There was an interesting comment yesterday on my post Learning to Speak Up. It broached the quandary many of us experience in determining when it's the right time to move an aging parent from their home to assisted living. On the one hand, you have a parent who is clearly still able to manage their life pretty much on their own. On the other hand, that same parent is showing signs of cognitive loss which you expect will eventually increase. You know at some point you'll no longer be at ease that they can still manage safely and well by themselves.

The question is: As their caregiver or care manager, how do you know when it's the right time for them to move?

Loss of cognitive functioning isn't predictable in its pace. You know it's happening, but no one can say how fast a parent's abilities will fade or fail. The not knowing makes it difficult to plan in concrete when a move should be done. What you can see is that your parent is doing OK right now. And you expect that they'll be able to continue doing OK for awhile. But you don't know how long "awhile" will be, and you don't know what part of your parent's cognitive functioning will fade next. You feel like you're in a holding pattern. You know you're going to come in for a rough landing at some point, but in the meantime, you're hanging around circling. What can you do to be proactive?

In a separate post in August, Making the Big Move, I addressed specific issues related to moving one's parents from their own home to assisted living, so I won't repeat that here. There's lots that can be accomplished pending "the big move" which will give you a great feeling of comfort and control. Here are some suggestions:
1. Find the assisted living facility that's best for you and your parents. This takes time and is a great thing to be doing if you know that eventually your parent(s) will have to move to such a place. You want to get as well-rounded a sense of the offerings in your area as possible and end up with your first choice ready to go when you need it.

Visit as many assisted living places as you can, even some that are out of the way.
Investigate which ones are close to your preferred hospital, and to activities your parent may enjoy.
Look at their actual units, both ones that are larger than you think you'd take and those that seem smaller. You'll be surprised at how different each unit looks in real life than on a printed floor plan.
Meet with their Executive Director and their Directors of Nursing and of Activities.
Eat a meal at each place, preferrably in the company of some residents.
Inspect their Alzheimer's or Skilled Nursing units, if they have one.
Ask around with doctors you know to see if any facility has a better or worse reputation than others.
Talk to their references.
Find out their wait list policy. Some places will keep you in your wait list priority spot indefinitely and allow you first right of refusal on each new unit that comes up.

2. Get paper work in order. This may mean putting in place a broad enough power of attorney so that you can move your parent without their say so if the need arises. It also may necessitate a clause that defines by what means your parent is considered to no longer be competent to manage their affairs. It's good to have an attorney assist with this.
3. Keep talking with your parent about the issue of moving. There are pros and cons worth airing on both sides. This is a tough decision for everyone. It's sensible to allow time for the idea and its ramifications to sink in.
4. If possible, have a neuropsych evaluation done of your parent cognitive functioning. This should be more extensive and detailed than an internist's evaluation and may give you a clearer understanding of your parent's condition.
5. If possible, bring your parent to visit a small selection of the assisted living facilities you've found. For some parents, the following strategy has worked well: First show them a facilityyou know they won't like, perhaps one that's even a little crummy. The two of you can then agree that that place isn't suitable for them, which puts you on the same footing. Next, take them to the facility you prefer, which will be in direct contrast to the one they just saw. You just may hear "Yes, I could live here!"

Is this strategy manipulative? Yes. But it's done to ease the strain of making a decision and to put your parent in a positive frame of mind, both of which ultimately make the move so much easier.

Last year, when my sister and I were struggling with a similar situation, I was given an invaluable piece of advice: don't wait until you have a crisis on your hands. So, my final suggestion is be willing to take control of the timing of the move. Don't wait to get a call from neighbors saying your father has fallen and is in the hospital, or that your mother has gotten lost while driving and couldn't find her way home for two hours. Moving your parent to assisted living actually will go far better for them if they are in good health, reasonable spirits and still able to learn new routines.

Elder Care: Caregiver Abuse

2008-09-21T15:31:00.006-06:00

Those who need to depend on caregivers are justified in worrying about the trustworthiness of the person they're letting into their home. Iti's a given that an elderly person who needs a caregiver is in a dependent state. If they weren't, they wouldn't need a caregiver. All the aspects of aging that create dependency--hard of hearing, don't see well anymore, take naps a lot, can't remember very well, lonely--contrive to create a situation that is ripe for exploitation. So, yes, there's a lot to worry about.

But that's not what I want to address now. Rather, I want to give some exposure to the all too frequent abuse of caregivers by their clients. The work of a caregiver is not (yet) a degreed profession , unless you're at the nurse level of caregiving. Thus it is open to anyone who is willing to do the hard work. In some respects, the caregiver is part of what I consider an underground industry. Caregiving per se isn't regulated. There's no certification required to be a caregiver, and those who need the caregiver often are in somewhat desperate circumstances themselves...desperate for help, desperate for relief, or even just desperate for company.

Look further and you see the client and caregiver isolated in the client's home, typically without supervision. Ues, for those so inclinced this offers a perfect opportunity for a caregiver to take advantage of their client. It also makes it easy for clients to become abusive with their caregiver who likely is very dependent on their hourly wage and not in a position to walk away from the job.

We want the caregiver to be caring, kind, to drive carefully, to remember instructions and to use their best instincts in the care of our parents. We want them to help our parent with errans, take them to doctor appointments, and not steal. Yet we're not willing or able to pay much to our caregivers. An agency sending a caregiver to my parent's apartment may pay them $8-$10 per hour. If I hire an independent caregiver, the rate may be $11-$13, depending on the number of hours I want them to come in. By comparison, there's the auto mechanic, for which your local repair shop may charge $60-$120 an hour. Considering who it is we're making caregivers responsible for and the attention we're asking them to pay their work, the job is, in my view, poorly paid.

In my experience, a caregiver often is someone who's working 2-3 jobs and really needs the money. This puts them in a position that their clients also find easy to exploit. I've heard stories of caregivers whose clients scream at them in the most rude and brutal manner, who require the caregiver to reserve time for them for weeks, but don't pay them for holding the time open, and many other thoughtless and disrespectful actions that I find appalling.

There are many caregivers who take great pride in their work, who are eager to learn new skills to improve their performance and who grow to be deeply fond of their clients. As would any other worker in personal services, caregivers thrive on kindness and concern for their well-being, and repay tenfold when they are treated with dignity and respect. And doesn't that sound just like the way we want them to treat our parents?

Here's what I urge anyone who already has or is considering engaging a caregiver to do:

1. Go overboard in treating them as professionals.

2. Pay them a bit more than the going rate, even just 50 cents more. And pay mileage for when they drive your folks around, and also if you ask them to work for less than 4 hours.

3. Get to know them as people, their lives, their other jobs, their families, their worries.

4. Be considerate of their needs so you can expect them to be considerate of yours.

Elder Care: Caregivers-choosing what's right for you

2008-09-21T14:24:00.007-06:00

One of the ways to alleviate stress is to find a caregiver to give you a break. The break can be a physical one, as in "I can go out because I have someone to stay with Mom while I'm away." Or it can be mental one, as in "I don't worry as much because I know Mrs. Smith is with my Dad at night." And of course, if you're lucky enough to find the right sort of caregiver, it can be both.

There are many types and classes of caregivers. To start I can separate them into the following general categories:
Personal aide: does light housework such as laundry, making the bed, vacuuming, dishes. Assists with food shopping and other light errands. Drives client to doctor appointments and other outings. Provides companionship.
Caregiver: does all the activities of a personal aide, plus assists with any of the activities of daily living (ADLs) required. The ADLs, as defined by insurance companies, are, bathing, continence, eating, dressing, toileting and transferring (safely moving into or out of a bed or seat).
LVN or RN: By definition an LVN or RN can set up and administer medications, check and understand medical charts, manage medical information for your parent, attend doctor appointments and advocate effectively in ER situations.

Within each of these categories you will find people with a great variety of experience. Some will be experienced at working with terminal illnesses, others with dementia and Alzheimers. Some will have worked only in a supervised care facility, such as skilled nursing or assisted living. Others will be accustomed to working independently in a client's home. Some will want a live-in situation and others will prefer hourly work. There are agencies which provide caregivers, doing all the background checking for you (and charging accordingly) and there are also independent caregivers who work directly for you. Naturally, good caregivers come in all ages and nationalities.

If you're actively thinking of getting a caregiver of some sort to help you, consider approaching it as you would the hiring of an employee. For example:
1. Write down the aspects of care which are most important to you.
2. Select caregivers to interview who actually have experience in those aspects. There's no need to pay for an RN if what your parent really needs is someone to keep them tidy and drive them around. Conversely, you'll be making your life more difficult if what you really need is medication management and you hire someone who can't tell the difference between Digoxin and Darvocet.
3. Talk in detail with their references and ask the hardest questions you can think of. For instance, ask for two things that they were unhappy about with the caregiver in question. Find out how many other caregivers they've used. If they've only used one, they may not have great perspective. If they've used 50, they'll have lots of advice and good stories for you.
4. The peace of mind in having a caregiver comes from knowing their common sense reaction matches yours. If at all possible, interview prospective caregivers in person . There's much to be learned from body language and eye contact! Ask questions that put them on the spot. You're not trying to ferret out murder and mayhem in the interview. But you are trying to learn as much as possible about a new person ahead of time, so there are fewer surprises late on.
5. Be honest about your parents' foibles, their general way-of-being. Are they bubbly? Do they prefer to be alone? Are they hard of hearing? Do they accept they need help or that you need help?

Do as much as you can to assure yourself that you are making a good choice. This will stand you in good stead when your parent tells you that the new caregiver is incompetent, rude or lazy.

Be prepared to supervise the caregiver quite closely once you hire them. Although the ultimate objective of having the caregiver is to give you relief, in the beginning it may take more of your time. You'll have to back them up during rough patches, be available to answer questions, give moral support, all to ensure that they are accepted by your parent and that they want to stick it out.

In my next post, I will write about care managers. In the meantime, if you have questions about any of the above or want more detail on caregivers, please post a comment or email me.

Elder Care: The Link between Stress and Illness

2008-09-13T20:02:00.005-06:00

As caregivers for elderly parents, managing day-to-day issues and health emergencies, we are loaded with stress of all sorts. I heard a fantastic interview on my local public radio station this past Sunday (Sept. 7). The interviewee was Esther Sternberg, M.D., a rheumatologist and specialist in neural-immune science. Her latest book is titled The Balance Within.

Much of the interview was spent discussing whether there is a cause and effect relationship between high levels of stress in one's life and illness. In other words, is there scientific evidence connecting the presence of the former with the onset of the latter? Sternberg is a down-to-earth speaker, not a high-fallutin' medical-ese sort of speaker. I was riveted by what she described. It's worth listening to the interview and you can do so on the following website for the program: http://speakingoffaith.publicradio.org/programs/stress/index.shtml

Her book, which was published in 2000, addresses question such as:

Will stress make us sick?
Will believing make us well?
Why do we feel sick when we get sick?
How does our health affect our moods?

If you're interested to know more about her, her website is http://www.esthersternberg.com/.

Have you ever experienced a situation where you were pretty darn sure that your health was being affected by the stress in your life?

Elder Care: Being your own expert

2008-09-10T18:35:00.006-06:00

In introducing this blog, I wrote that, especially in the realm of caring for one's elderlyl parents, it's important to bring into play your own wealth of experience in life, your intelligence and your intuition. It strikes me this deserves some elaboration.

When I say that each one of us is an expert, I don't mean that fatuously. I'm not claiming that we have more medical knowledge than a doctor, or more legal knowledge than an attorney. Obviously, they are the experts in their field. But each one of us is the expert in knowing what's right for our family, for us, for our geriatric parents.

In my opinion, we've gotten too used to relying on professional "experts", those with a special degree, an impressive title, or "consultant" after their name, to tell us what to do. It calms us to think that Dr. So-and-so has declared the best course of action and all we have to do is follow it.
It makes us complacent: the big decision is theirs, not ours.

But think about it. Doing just what the expert says without evaluating it thoughtfully against your own criteria for the decision, is really an abdication of responsibility. It takes the responsibility for the outcome of that decision off your shoulders and puts it on the shoulders of the expert. If you do things this way, next time a decision needs to be made, you'll be no stronger, no better able to make that decision. The void where self-reliance should be is filled instead by the declarations of these professionals.

When you know what is right and what is appropriate, and you're confident of that, it becomes easier to make decisions. If you never exercise those values or judgments, they stay weak and fuzzy. And that's why making decisions becomes overwhelming and you get that horrible feeling of being tossed in the waves of circumstance.

What you have to start doing is using those experts as tools. Make it your goal to glean what you need from each professional, then take some time to evaluate what they say, and, finally, make your own decisions based on what you believe is best. Practice this any opportunity you get. You'll find your self-confidence and sense of inner strength as an elder expert growing each time you do.

Need more ideas on this? Have a comment? Click on the Comments link below..

Elder Care: Trust your instincts

2008-09-09T20:19:00.006-06:00

One of the main premises of this blog is that we all are experts in our elderly parents' care. All we need to do is acknowledge how much we know and can apply to the elder care situation from our other life experiences. And we have to become willing to find the inner strength to rely on ourselves a bit more. Not that specialized experts don't have their place. Clearly they do. It's just that evaluating what those experts say, and then making judgments and decisions, has to come from within us. It's not up to any geriatric expert to decide what's right. The expert's job is to share information. From there, it's up to each of us to weigh all the factors and make the decision.

Betsy posted a wonderful comment recently. I highly suggest you read it in its entirety. Just click here to link to it. Her comment speaks to the heart of what I'm getting at. She highlights three things that she found invaluable during the last year of her elderly father's life:
1. Trust your gut feeling.
2. Develop a sense of gratitude for what others do for you and be willing to ask for help when you need it.
3. Be creative--think outside the box especially when you are faced with what seems like an intractable problem.

Here are just a few reasons why I think Betsy's comment is so important:

1. When you learn to trust your gut feeling, and are willing to act on it, you move from being a victim to being in control.

2. Being grateful is a good emotion. It removes the guilt many feel when having to ask for help----guilt which is negative and energy-sapping--- and replaces it with a sense of connectedness and support, all of which is positive.

3. Creativity is your greatest ally. When you are not constrained by what others says is the right thing to do, when you begin to allow yourself to come up with seemingly outrageous options, you'll find that your boundaries are suddenly wide open with possibilities.

What do you think? To post a comment in reply, click on the Comments link at the end of this post.

Elder Care: Stress relief for solo caregivers

2008-09-07T17:26:00.016-06:00

I received an email after my post on Learning to Speak Up, which raised a good question: "... with regard to having some 'time off': What do primary care givers of elderly parents do if they don't have a spouse or partner..i.e., aren't married or in a committed relationship ? And perhaps don't have siblings that are willing or able to take over?"

In considering this question, I first had to take a step back. Here's what I see: Even people who have family or sibling support have trouble learning how to take a break, or that needing a break is OK. For some, allowing others to help them is really hard. They don't trust that another person will do things as well as they themselves will. Or they think that admitting they need a break or some help is a sign of inadequacy. For others, there's just honestly too much to do and too few hours to get it all done. In all of these scenarioes, there are two fundamental things going on:
1. Not wanting to give up control
2. Not knowing what your limits are and therefore not knowing how to set them.

If you are in the caregiving position without family to support or relieve you once in a while, you can decide either:
--To devote your entire life to your parent's care (because there's an endless list of things that need doing)
OR
--To learn your limits and be willing to give up some control.

There's a spiritual element to this, of course. Setting limits and relinquishing some control means learning to accept that it's OK not to do everything that your parent could possibly need. But this is the way you regain some freedom and diminish the stress that comes with being chronically worried and overloaded.

There are some practicalities to making this happen which you have to be willng to pursue diligently:

1. Take a clear, hard look at priorities for care. Mental and physical health are usually the priorities, along with at least something that pertains to quality of life. What are you doing now that you can eliminate without endangering the first two or totally eliminating the latter?

2. If you can afford it, pay someone to take care of some of your current tasks. These could be things you aren't going to do for your parent anymore, or maintenance things in your own life that you could pay someone else to do:

Hire an independent caregiver to do what you can't do. To find the right person to work with/for you, you have to network like crazy. Call independent and assisted living facilities and talk to their staff for recommendations. Talk to your parent's neighbors. Search the web for senior services and private nursing services in your parent's area. Talk to them about their services and if they can recommend others who do more precisely what you're looking for.
Get a bill paying service or bookkeeper for your parent's bills and maybe also for your own bills. Or set up as many bills as possible for automatic payment. Yes, we all can write checks. But this is also something that you can easily job out and free up some of your time each month.
Get a house cleaner in every couple of weeks.

3. Learn about, use and invest in technology. There are senior cams that can be installed in your parent's home. There are services which will call your parent at daily or at preset times, to check they're up and about.

4. Call on your friends, acquaintances and colleagues for any routine chores that can be shared out. If you take your kids to school or sports, can they carpool with someone else?

5. Think long and hard about your parent's ability to continue living in their current home. Are they really coping and doing well? Or are they struggling to maintain the impression of independence, at a high cost to themselves and to you? If your parent's care is overwhelming you, and you can afford it, you may have to bite the bullet and move them, over their objections, to assisted living (see my post on The Big Move).

6. Find the element in life that gives you peace, and award that to yourself every day. This could be getting a breath of fresh air, listening to your favorite music, cooking, picking up your kids at school, who knows... But find out what it is and commit to it for yourself every day. This means returning to living your life consciously and giving as much importance to yourself and your needs as you do to those around you.

And now, here's the key: Accept that you are no longer going to control as many aspects of your parent's care as you used to. Accept that there are some things that simply won't get done... And your parent will still be OK. In some case, you'll hire others to do what you otherwise would have, they'll do things differently and your parent will still be OK. It goes without saying that you're not simply handing over your parent to someone else without assuring yourself that the caregiver is trustworthy, and then checking on them from time to time. But you will build a strong safety net for yourself by doing so. You will give up that control for the benefit of your own health and well-being. This isn't being selfish. This is being pragmatic.

Elder Care: Speaking Up for What you Need

2008-09-05T16:18:00.007-06:00

In my last post, I offered some tips on how to start speaking up for what you need and what you want. Of course, one could write a book on the subject (and maybe I will someday)! Within the confines of blog posts, however, I suggested just a few simple steps you could take to start speaking up.

To me, as a caregiver for an elderly parent with dementia, speaking up is an essential skill for regaining some control over your universe. Here are some examples where knowing what you want and speaking up for it can be really helpful.

Medical Matters, including doctor visits, ER and other hospitalizations
Have you ever been in the situation where, after the doctor leaves, you scratch your head and ask yourself, "What did he just say?" Medical matters with regard to elderly parents are always complicated. Typically there are multiple medical issues to consider, various treatment possibilities to understand, a variety of drugs influencing each other, not to mention the anxiety of seeing one's parent in pain or distress. Physicians have less and less time, and sometimes too little patience, with geriatric cases. I've found this can be true even with doctors who claim a specialty in geriatrics.

Being able to speak up in medical situations is difficult, but crucial. Here's how I break this down into the rock bottom need and want:
What do you want? to understand the medical matter confronting you.
What do you need? for the doctor(s) to explain the matter to you clearly and completely.
How do you get this? Present what you want simply and nonjudgmentally. For example:
"Doctor, I am my mother's principle caregiver. I want to be able to make the right decisions and to do that I have to understand the medical issues confronting us. Could I ask you to explain the situation to me as simply and thoroughly as you can, so that I can understand it? And please bear with me if I need to ask some questions. If this isn't a good time to go into the detail I need from you, can we set a time right now when we can talk about this?"

Family matters--time for yourself
One of the recurring themes in caring for elderly parents is how it encroaches on your time. and energy for other things. You're working, you're raising a family, you're keeping your spouse happy, AND you're now responsible for all sorts of things related to your elder parent's well-being. If you don't speak up for your needs you'll eventually explode and one of the above will suffer. Here's how I break this down into the fundamental want and need:
What do you want? Not to be responsible to anyone for anything for a period of time (a night, a few hours, whatever works for you)
What do you need? For your spouse to take over your chores for that particular period of time.
How do you get this? Try this out: "Honey, I want to be able to take care of everyone and keep up with all my responsibilties as well as I possibly can. You know that's really important to me and I take it seriously. Right now, though, I'm truly exhausted by it. I need a break. Could you (take care of the kids for the next few nights) (manage dinner for me this week) (take over the laundry this weekend)? If I just don't have to think about or be responsible for this it'll help me more than you can imagine!"

Ok, ok, maybe you won't call your partner "honey" but you get the idea!

Have you encountered any situations where these ideas could help?

Elder Care: Stress--the first suggestion

2008-09-03T17:23:00.012-06:00

In my previous post, Stress and Suggestions #1, I listed 10 ideas for managing the stresses of being a caregiver or care manager for elderly or ill parents. All of the ideas involve putting some (or a lot) of thought into how you evaluate what's happening and then choosing how you wish to respond to the situation. All of the ideas take more energy than having a glass of wine, or going to a movie. The movie or glass of wine is a pleasure, but their benefits are fleeting. The ideas I listed will return broad and continuous rewards for that investment of energy.

Here's the first one from the list: Learn how to speak up for what you need and what you want.
Why is this even important? Whether it's leaving a doctor's office with a clear understanding of a medical issue, or knowing for certain that your parent's laundry will be done regularly, knowing what you want and asking for it is the best way to clean up your To Do list. It's also highly satisfying.

If you can learn how to do this, you'll regain a measure of control. And it's the near absence of control that is often so frustrating and therefore so stress-creating in our situation. Here are a few tips to get started:

First, take a step back and identify what you're seeking. Be honest with yourself here and don't censor what comes to mind. A basic element of managing stress is giving yourself permission to have thoughts that you, or others close to you, might initally react to as socially unacceptable. When you actually mull over those thoughts, you may find that they're not so awful after all. In fact, by not suppressing them you could discover that there's a strong element of reason in them. Or you might learn that there's really nothing you want to do about them.

So, your first inkling of the outcome you're seeking may come attached with a statement like "Oh, I couldn't possibly do that." Or "Gee, I'd like to say that but they might get mad if I do." That's OK. Write down whatever comes to mind, even if you imagine it's impossible for you to do.

Then, write down what action you want to take or what words you want to say. This may sound pedantic, but one of the big bugaboos in speaking up for yourself is not knowing what to say. So, write it down. If you're going to be in a tense situation, work on phrasing that's neutral, non-judgmental, and that has some positives in it.

Now, practice saying what you've written out loud. Practice in your car while doing errands or driving to work. Repeat your key statements until they feel part of you. I'm not saying memorize what you've written. But if you're not accustomed to speaking up for what you want, this is a good way to start to see yourself as someone who does just that. The more you hear your own voice saying things you didn't imagine you could say, the more you'll believe you can speak up for what you want.

Lastly, give it a whirl. This speaking up for yourself business gets easier each time you do it.

Next, pick

Elder Care Stresses and 10 Suggestions for Coping

2008-09-01T15:30:00.009-06:00

Stress is the constant companion of those who care for their aging parent(s). There's much that's been written about not forgetting to take care of yourself when taking care of others. I'm not going to repeat it here, but I do want to look beyond the usual advice. I'm not a psychologist or psychiatrist, but even so I think telling someone "be sure to take care of yourself" is a bit glib. Saying "don't forget to take care of yourself" has become ubiquitous. Those who say it think that they're showing empathy, but personally I find it to be an empty statement that doesn't help.

Consider the word itself. What does "STRESS" actually mean? By definition, "stress" means "to subject to force; to put pressure or strain upon."

When you are responsible for your parent's well-being the pressure is continuous and the resulting strain is immense. If you are being continuously subjected to pressure, squeezed in a vise, then the standard of what it means to care for yourself has to change. We all know that we have to take care of ourselves. The question is how best to do so? In my experience, the things that are most restorative are ones that take the lid off the pressure cooker for more than just an hour. They're substantive and long-term. They affect you deeply and offer a chance to take control, something which is sorely lacking in the caregiver's world.

Here are 10 suggestions, some small and simple, others more complex:

Learn how to speak up for what you need and what you want.
Tell people what's happening with your parents.
Dismiss the notion that you can do it all on your own.
Contact relatives and involve them in the situation.
Know that you'll do everything right and your parent will still get worse.
Accept that it's not humanly possible for you to do everything that could conceivably be done for your parent.
Pick one thing that you want to thoroughly understand or accomplish and delve into it.
Find your center, your core, and listen to what it has to say about yourself and your parent.
Figure out one element of your parent's dignity that has been damaged due to dementia or other infirmities and restore it.
I've said this before in previous posts, and I'll repeat it a lot in the future: Remind yourself every day that you are doing the best you can possibly do.

Every one of these suggestions is a topic of it own. I'll post on each one in the future.

Can you offer more suggestions?

Elder Care: Helping Parents Make the Big Move

2008-08-30T16:30:00.007-06:00

People have been emailing me re. the launching of Mimi's Place with support, saying it's about time we all had a way to get connected. Thank you! Some of those emails contained news that the sender was right at the point of having to move their parent(s) out of their home.

Reaching the point of Making the Big Move is a big deal. It doesn't matter whether your folks are still in their old home and are moving to independent living, or if they're already in that sort of residence and need to move to one with a higher level of care. This is a fraught time, both for you and for your parents.

Ten years ago, when my mother was a sprightly 81, my sister and I helped her from her home near New York City to an independent living residence in San Diego. A year ago she was diagnosed with dementia. Recently we decided it was time to move her to assisted living at a new residence, also in San Diego. I found a huge qualitative difference between the two moves which I'd like to dig into a bit.

I would venture that many of us have parents, now aged and perhaps not too healthy and with it, who have lived for decades in the same community. From your parent's perspective this sort of move is the aging process made visible, with the diminishing of independence that goes with it. There's a finality to it. It's a pulling up of roots of the most excruciating kind.

Yet, if the move is done at the right time of life, our parents can and do build a new community of support. Though the new community may not be as fulfilling as the old, there's still a sense of possibilities, albeit perhaps diminished ones. For us, it's heartening to see our parents make new friends and find new pleasures. As we observe our parents decline, it's reassuring when we see that they can still manage the rudiments of a full life by themselves. The point at which we need to take over is postponed, and that's a relief.

However, when the move in question is from independent to assisted living, it's a whole 'nother story. I'd like to deconstruct some of what I sense is going on, from my own experience. In our era, I'd venture that 99% of elderly people know what assisted living represents: in so many words, it's where they go to die. From what I've heard and observed, our elderly parents experience a strong mix of emotions about such a move:

Relief that there will be more assistance for the tasks of daily living.
Dismay at the further visible loss of the ability to manage independently.
Fear of the unknowns about the end of their life.
Anxiety about a new place where they may not know anyone.
Confusion, if dementia is present, coming from a dislocation of their routine.

And that's just for starters....

For us, it's equally wrenching. Typically, as their caregivers, the decision to move a parent to assisted living is one that we ourselves have consciously initiated. Some parents understand the need for the move and go along with it. That makes it easier for us; it becomes a team effort, everyone agrees on the goal and we work together. Others resist, or simply are no longer able to understand the compelling reasons for the move. That makes it hard. Why? Apart from the guilt trips and such that we've all read about, I think there's more going on.

Basically, we are acting (or reacting) either to a medical emergency or to a chronic mental or physical issue which can no longer be managed at home. The move to a place with more care implies we know in what direction, at what speed and in what ways our parents will next deteriorate. But we don't know this.

All we can say for certain is that we know what they need (and what we need for them to have) right now. If we're honest about it, the rest is conjecture. So here we are, being firm and projecting all kinds of determination and confidence about a solution (The Big Move) that we can't control and which we can't even say with certainty is going to be appropriate a few months down the road.

Talk about a toxic mix!! So how to get through this?

First and foremost, give yourself and your siblings a huge pat on the back for the tremendous job you've accomplished. Do this often. Your parents, who in the past would have blessed you with their approval may not be able to do so now. You must acknowledge for yourself that you're doing a terrific job, the best that anyone in your situation could do.
Equally important, spend some time learning to put yourself in your parents' shoes. Use your imagination to try to experience their world view: feeling frail, aching all over, can't remember things and they know it but can't do anything about it, realizing that all their efforts to portray independence haven't fooled you, scared, unsure. No wonder they may be resistant and just plain unpleasant.
Remind yourself that your parents are not angry at you, they're upset at their situation. You just happen to be the physical representation of that. Let them spew, try not to engage in explanations and rationalizations that lead to hotter tempers. And try to redirect the conversation to something other than the move, to whatever topics your parents more happily talk about.
Keep your objective firmly in focus. Remind yourself that your decision to move your parents is well-reasoned. While you might not be able to accomplish it in the timeframe you initially imagined, it will happen and your parents will adjust.

What's your take on this? Has your experience been the same as mine?

Elder Care: Mimi's Place Introduction

2008-08-27T14:17:00.008-06:00

Thank you for taking a moment out of your busy day to read this. If you've even gone so far as to open this link, I'm honored. First off, I want to make sure I'm not going to waste your time if, in fact, what I'm writing about here is of no interest to you. So, with this first post, I simply want to explain what nudged me to start this blog and how I view its purpose. I'm hoping the way I feel about this is going to strike a chord with you, too.

A year and a half ago, after several emergency visits to her neighborhood hospital, my mother's health and mental well-being reached a level where my sister and I felt she needed the support of round-the-clock caregivers. Was she terminal? No. Was she as independent as she had been a few months earlier when she went on a 2-week cruise by herself? No. She was somewhere in between. She also was 91 years old and who could say what would happen next. There she was in the middle of the seesaw, some days sliding toward "better" and other days decidely on the side of "worse." We never knew which way the seesaw would tilt, so, in effect, there we were with her, with the seesaw itself rather firmly in control of our lives.

As we embarked on what has proven to be a rather wild ride, we had absolutely no idea what we were doing. No idea what was needed to keep our mother as healthy, safe and independent as possible. No idea of what that magical thing called "quality of life" would now even look lilke. No idea where to look for the help we needed, nor whether we were looking for the right sort of help. No idea whether her current health would improve, stay the same or deteriorate. Therefore no idea what we even needed to plan for. What we knew was this:

Our mother's current lifestyle set up was no longer tenable.
Both my sister and I were highly capable, organized and well-intentioned individuals.
We were acquainted with a few trustworthy independent caregivers.

This was our diving platform, and if you watched the Olympics at all these past couple of week, I'll liken our situation to being on the highest platform, except you don't know how to dive. All you know is that you've got to jump off the platform after which you'll hit the water below, where you'll start swimming for dear life.

So, that was the position we were in in May 2007. Since then it's been a crash course in elder care, with lots of ups and downs. In the process, I've learned a huge amount, not just about how to manage my mother's care, but in general. This is proven to me each time I chat with a friend who's in a situation similar to what I was in 18 months ago. The amount of wisdom, of experience, of options that I can now counsel others about astounds me. And none of it came from schools, conferences or websites. It came from hands-on, in the trenches, make mistakes and figure things out, learning.

In talking with others embarking on the dive off the high platform, I found a real desperation for information and assistance, a craving for ideas based on hands-on experience. Clearly these savvy, accomplished people had not been able to find what they're looking for on the web, just as I wasn't. When I spoke with people who'd been taking care of their parents for awhile already, I encountered a sincere yearning to talk about triumphes and mistakes with others who could actively benefit from that information. Most gratifying, each person I've talked to in the past year has had expertise on something related to the subject of caring for our elderly parents, even if they were just starting to get involved in it.

Over these past several months, with my mother in a more settled situtation, I've had a chance to reflect on what's transpired since May 2007. And here's what I've realized. There are tens (maybe hundreds) of thousands of us out there who have reached an extraordinary level of accomplishment in a field for which there is no degree and no credentials. We are absolutely expert in what we do: caring for parents. What absolutely astounds me is that, for most of us, once the need to care for our parent(s) is finished, our incredible amount of expertise will no longer have a purpose or an outlet. And boy that seems like a real shame.

So, that's the purpose of this blog. Let's get going on sharing our collective wisdom and expertise regarding the care of our parents. There are all kinds of us out there: rich, not so rich, urban, rural, middle-aged, single, married, kids of your own, too young to have to do this or old enough to wish you didn't have to. Each in your own way has done an admirable job of ensuring the care of a parent or two. Each in your own way is an expert in the field of "caring for my parents." Why not put that hard-won expertise to good use. Send it out to those who are poised on the high-dive platform about to jump. Make it available to someone in another State who might glean just the nuggest of experience that will help them avoid a pitfall that you had to stumble through alone.

This blog is titled Mimi's Place, after my mother, since it is her situation which has made me into the "expert" I am today. I called my URL Elder Experts, because I firmly believe we all are. And I firmly believe we must share our knowledge and not let it die when our parents die. There are oodles of blogs and websites that list articles, services, care facilities and the like. That's not what Mimi's Place about, though if I find something of special interest I'll share it and I hope you will, too. Rather, I've sent you the link to this blog because I believe you are the Elder Expert. It's your many vital experiences, opinions and wisdom which need to be shared with all of us.

For starters, here are some of the general topics I have in mind, each of which contains subtopics which I won't get into now. Each can spark a dialogue between people who have actually solved a problem, found a solution, or are in the middle of the morass.

Who's watching the farm: Agencies, private caregivers, contractors, employees and figuring out what's right for you
Room & Board: Where should Mom and/or Dad live
Decisions, Decisions: Who's going to make them and are you prepared
Guilt: Achieving the right outcome
How do I know what's going on: Communication between all the parties involved in your parent's care.
Long Term Care Insurance: do you want it; do you need it.
Family relations: rivalry, burdens, a whole new level of love

I know there are other topics that will interest users of this blog, which I haven't thought of yet. Do you have any of your own? Add them to the list and contribute your own "papers" on subjects that are meaningful to your experience. And forgive the utterly simple format of this blog. I know there are sophisticated ways to create these things, but I'm just starting and have a lot to learn.

Please participate. What can you contribute? For starters, make the circle wider. Forward this link throughout your own network of Elder Experts, to siblings, relatives, friends, your parents, anyone whom you've talked to who is responsible for the care of a parent, or who expects to be. Let's get a conversation going around the country.