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!