Elder Care: Conversations about Dying

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?

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

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

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

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.

1. 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.
2. She has a spacious, yet manageable, apartment with lots of light, which means a lot to her.
3. 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

1. 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.
   
2. 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

1. 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.
   
2. 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

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

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.