Saturday, October 29, 2016

What A Difference A Year Makes

It's been an emotional rollercoaster over the last couple of weeks, as I think about and plan for our future. Recently I had a meeting with our finance guy and an attorney who specializes in elder law. It has forced me to think about the inevitable future of providing care for Jim. I like to think that I can do this at home. At times I feel very brave and confident in my abilities to do so. Other times, not so much.

I spent much of Thursday with my elderly mom, getting groceries, banking, etc. She wanted to stop at a local nursing home where one of her friends is living. Well, not really living, actually she is dying. I almost did not recognize her, she was so emaciated. My mom commented that "this is a nice nursing home because it does not smell". Well, her sense of smell is way off. Once we got off the elevator to head down the residential hallway, the smell was over powering to me. So depressing. The vacant, sad look in people's eyes was heart breaking.

No one can judge the hard decisions made by families when the time comes to consider the best options for the individual. But this visit made me all the more determined to do whatever I can to keep Jim at home. Needing help with Jim's care is not in the near future. But it doesn't hurt to think and plan for the best options.

In my last post I talked about the Leaf Study . I was accepted into the study, and it has already begun. I was randomly assigned to group 2, which means I start the daily "emotional surveys" now, and the video conferencing will not start for another 8 weeks. The daily surveys are a quick survey (less than 5 minutes) done at the end of the day, tapping into what emotions you were experiencing that particular day. I've done this 3 days now.

The most striking thing to me so far is that the two emotions that elicited the most powerful response in me were hopelessness and sadness. It's not that my life is without hope, but when I think of our life, it is pretty sad and there is not much hope. It's just the reality of this terrible disease. I'm looking forward to the "intervention" part of the study that will focus on raising your happiness quotient, improve coping strategies and decrease stress.

I discovered this great article called Ways to Control Caregiver Stress and Sadness that I found helpful. I'm all about self-help, and doing whatever you can to take control of your life, including your emotional life. By the way, the Leaf Study is still taking participants, if anyone is interested. Just click on  this link and it will guide you through the steps for enrollment. The research project coordinator that I spoke to on Wednesday said that one recent enrollee mentioned my blog as the source for how they heard about the study :-)

Less than 5 miles from our home a Peregrine Memory Care facility is being developed. It is assisted living (not nursing home) and is intended for folks with dementia. Jim saw an article in our local paper about it and pointed it out to me. He said that this would be perfect for my mom. This gives you a sense of how off his perceptions are. My mom has no cognitive impairment whatsoever. There is a medical term to describe this lack of awareness of cognitive impairment: anosognosia As I have said before, I think it would be devastating to Jim if he actually was aware of him impairment, so I am grateful for this lack of insight.

The other day I was reminded of events from just a year ago. It got me to thinking and comparing how much things have changed for Jim (and for me!).

A year ago:

* Jim was able to drive safely, as long as it was local and familiar. Now, there are really only two very close locations where he is OK to drive.

* Language: A year ago, Jim was just starting to have a little problem with word finding. I remember being surprised by this, but the occurrence was quite infrequent. Now it is many times a day, every day.

* Money/Math/Spatial Relationships: A year ago he could still write a check or make change. Now, he is unable to do the simplest of math calculations or any financial business. Problems understanding spatial relationships is a relatively new development this year as well.

* Memory: It was 9 months ago (I remember because we were in FL) when Jim first had problems remembering his address, phone number, birthday, SS #. It was shocking to me, and gave me a glimpse of where things were headed. Memory loss has progressed to most events in the short term. If something has a large emotional impact on him, he is more likely to remember.

* Personality: Here's some good news! In some ways, things are better simply because I have gotten better at predicting and responding to things that upset him. I'm also doing better at preventing upsets before they happen. Yay!

This last paragraph is actually very encouraging to me. Especially since the personality and behavior changes are the hardest to deal with. The rest is easy stuff. I guess I should give myself credit for getting better at this. Maybe tonight when I do my daily "emotional survey", I will have more hope :-)

Well, once again I am lifted by being able to share with my wonderful, caring readers what is on my heart and mind. Thanks for stopping by, and for being such good listeners!





17 comments:

  1. This sounds like a splendid program for family and caregivers. So glad you found it. It's encouraging to note we are making progress in this country in managing different forms of mental illness, not enough, but some. My situation with Bob is very different. He's old, his dementia is not unusual for his age, he's nearing the end of his life. Not the case for your situation. You're very knowledgeable about your situation. You will no doubt become a real voice for Jim's form of dementia. The more voices sounding the call for help means more attention from the medical world and Congress. People like Jim need someone to be a voice for them. You can do that.

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    1. Thanks for your kind words Linda. I hope to be that voice for Jim. With so many baby boomers aging, we know that the health care system will become overwhelmed with just the shear number of folks needing health care, let alone care for dementia.

      You too are handling things so well with Bob. Sometimes as caregivers it is hard to recognize that, being in the middle of day to day care. But stepping back is good sometimes, to get that broader perspective and to realize that we really are managing quite well, considering all the challenges we face.

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  2. You are such a wonderful care giver. I'm glad you're being careful to make sure you're OK too. I know how draining it can be.

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    1. Thanks for your comment Kay. I don't always feel "wonderful", but I know I am trying hard to do the best for both of us. Yes, it can be draining. All the more reason to make sure as caregivers that we take care of ourselves too.

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  3. Carole, the year to year comparison is an eye-opener, as when you are with a person every day, the decline over time is harder to notice. My grandma had dementia and the disease progressed very slowly, over a period of about 20 years. She passed away a few years ago, just after her 100th birthday. I remember visiting her years before she was diagnosed (I lived far away and didn't see her often). Although completely normal in most ways at that visit, I remember a couple little things that were odd. Her refrigerator has stopped working and she had made an appointment for the repairman to come. In the meantime, she was keeping the butter and cream on the window sill to keep it cool. However, it was the middle of summer, and the sun was beating in through the window. The cream had soured and the butter had melted. It was very unlike my grandmother to show poor judgment. In retrospect, I now realize that was an early sign of the dementia that was to come.

    Jude

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    1. Hi Jude. Thanks for your comment. Your story about your grandmother is interesting. I have a feeling that this is a common occurrence in families with a loved one with dementia. You notice something that seems a little off (just a little), but your brain kind of dismisses it. Maybe it gets dismissed because it is something that doesn't fit our image of the person.

      Clinically and from a distance, it is an interesting disease process to study. But on a personal level it is devastating for the person and the family. I hope to continue with the year to year comparison. I know that the dementia journey is different for everyone, but I know I find value in reading about others' experiences. Somehow it makes me feel less alone.

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  4. He sure has declined mentally in a year. The worst thing is that there is no cure. It just gets worse.

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    1. It was interesting for me to actually think about the different changes over the last year. While Jim has certainly declined, I feel a little better about my ability to adjust and adapt. I can only hope that I am up for what the future holds. It helps me to remember that it is Jim that is really suffering from such a huge loss. It makes me appreciate what I have. Thanks for your comment Gigi.

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  5. It was interesting to see how aware you were of the changes but not just those in Jim but also in you. You have come a long way also and I am glad that you have tools to help you.

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    1. Thanks Patti. Yes! I am grateful for my insight to my own changes, as well as Jim's. It helps me to see the progress I have made and gives me hope that I'll continue to be able to adapt as we go forward.

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  6. Your previous commenters are also "friends" of mine. We read each others' blogs and comment often. It. It makes me grateful to know we have this community of support. I follow your blog with real gratitude that you are sharing this journey with me. Thank you. :-)

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    1. Thanks DJan. I too, am filled with gratitude for the friends I have discovered through other blogs, as well as my own. The connections are strong and they nourish my soul. The caring and compassion that is sent and received over the blogosphere is nothing short of amazing.

      I've often wondered how we all managed to "find" one another. I guess it doesn't matter; just so grateful that we did!

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  8. There are lots of bad nursing home stories, and realities (alas), but I don't think they are the only kinds of care situations out there. Just like with summer camps, which can be terrilble and "in it for the money", or truly amazing experiences for kids, I think there are a broad range of care facilities with equally broad ranges of competence and true caring for their residents.

    Since I have a spouse who has a progressive, terminal disease, I believe it is in our best interest for me to be looking, slowly and methodically, before it becomes an emergency, at all the options for care in our area. I, too, would like to think I am strong enough and that the at-home care resources are robust enough that residential care doesn't become necessary.

    On the other hand, if there were some very good residential options, I'd like to be able to consider one of them if this goes on to the point of affecting my good health, and beyond my ability to manage properly with day help.

    I've visited two local facilities this year, and Wednesday am planning to visit another, as a very early reconnaisance mission only. Should be able to rule some out, and hopefully have a preliminary rule-in of at least one, eventually. We'll see!
    Thanks for writing, Carole.

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    1. Wow, thanks for your great response Jan. It is such a highly charged, emotional issue on so many levels. It's balancing the needs of your spouse with your own needs, as well as dealing with the emotions of loss and responsibility.

      Our county has a program that is called "Nursing Home Without Walls". The name is more optimistic than the reality. It does provide some at home care that is covered by Medicare and/or private insurance, but the key words are "some care". The rest is up to the family to provide and finance.

      There are definitely some good residential options, but I think you have identified the key: do your research and plan ahead of time. When my dad was at the end of his life (Lewy Body Dementia), and his care became more than could be managed by family at home, it became an emergency placement. We did not have good options at the time. It still haunts me, but I know we were doing the best we could, given the circumstances.

      I love your description of an early reconnaissance mission. So much to think about and to plan for.

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  9. It was nice to read your post. It would be a great thing to accept the changes

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    1. Thanks for your comment. Glad you enjoyed reading my post.

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