Elder Care: Powerful Tools for Caregivers

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

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

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

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

Elder Care: caregiver training and more

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

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

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

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

Elder Care: special attention for dementia

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

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

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

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

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

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

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

Elder Care, Stress and Ego

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

This is a wise statement in a very simple form.

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

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

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

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

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.