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.