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: 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: 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

Elder Care: Making it through the Holidays

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: Managing Stress when you can't do everything

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: Caregiver Abuse

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

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.