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.

Elder Care: Long-Distance Caregiving

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:

1. 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.
   
2. 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.
3. 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.
4. 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

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!

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

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

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

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

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:

1. It accumulates all emails to your parent's email address.
   
2. It prints them out on eye-catching templates along with whatever photos you may attach.
   
3. Thrice daily the Presto machine checks your parent's mailbox automatically for waiting transmissions and then prints them out, again, automatically.
   
4. All this happens right in your parent's home with their having to lift a finger.
   
5. 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.
   
6. 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