Ah, the challenges of communication! Lately I find that I need cues other than the spoken word to really understand Jim. The more anxious or frustrated he is, the harder it is for him to accurately articulate what he is trying to say.
As I have written before, Jim struggles with climate comfort. For the most part, I find that if I keep the temperature at 74 degrees, he seems content most of the time. (As a side note, my body thermostat runs much hotter. I'd feel much better at 68 or 70, but 74 brings the peace, so that is what it will be.)
The other evening, for whatever reason, the 74 degrees was not working for him. The following conversation ensued:
Jim: "It's way too cold in here!!! What is the temperature???"
Me: "It's set at 74, but if you are too cold, I will turn it up."
Jim: " No! This says it is 54 degrees!" (He was looking at our inside weather monitor that measures both inside and outside temperature.)
Me: "Let's look at the indoor temperature, which shows it is 74. I can turn up the thermostat if you are too cold."
Jim: (Angrily) "It's too cold in here!"
As he says this, he is taking off his zip up hoodie he was wearing over his t-shirt. I suddenly realize that he is too hot, not too cold.
Me: "Ok, I'll fix the thermostat so that you'll feel more comfortable."
Notice how I carefully chose my words with that last statement. And, I had to pay attention to his body language, not his words to figure out what he was trying to tell me. More and more this is happening when he is anxious or upset, where yes means no, and no means yes.
The problems with word finding continue and seem to be increasing. Last night as he came to bed he woke me up to ask:
"When is ........" (gesturing with his hands held palms up).
I'm half asleep and have not a clue as to what he is talking about.
"You know..........on Monday......."
I'll spare you the painful details of the belabored conversation we had, but essentially he thought the presidential election was Monday and he was afraid we would forget to vote. He has been worried about this for quite a while, and we've had several conversations regarding this. I put it in his appointment book, but I don't think that helps if he can't remember to look for it there.
We met with our financial advisor this past Monday. It really was a brief, general meeting for Jim's benefit. Later in the week I met alone with our financial guy. We reviewed our portfolio, and we discussed the reality of Jim's shortened lifespan given his dementia diagnosis, as well as the expected expenses of home care for Jim. This definitely impacts on our/my financial future.
Long ago, Jim and I decided against long term care insurance. Instead, we chose to self insure, taking the amount that would be payed for LTC premium and pumping that money into our investment portfolio. Our finance guy has this fancy software that evaluates and projects your rate of return on investments and projects the income flow over your life expectancy. It looks like we'll be OK, even with Jim's health changes and projecting the costs of his care. I know that life is full of surprises (!), and I'm prepared to adjust as needed if financially we need to do so.
I met with the local Alzheimer's Association yesterday. They are a wonderful organization! Two very caring young women spent about an hour with me. They listened, and they encouraged me to guide the focus of our meeting. They provided me with lists of resources (gerontologists, counselors, support groups), and also had some good advice regarding coping skills for the caregiver. I was so impressed with their professionalism, their knowledge and their caring, empathic listening skills.
Update on the "leaf eradication" project (as Patti describes it) :-) I have ordered a battery operated leaf blower. Friends of our's have one, so I know that it is light weight and easy to use. It should arrive on Monday or Tuesday. I haven't told Jim yet. This is the kind of thing where it works best if I don't tell him too much ahead of time, as he will worry and be anxious about it. Once it comes, if he does not like it, I'll tell him it is for ME and that I want to be able to blow the leaves. Once he sees me use it, I'm guessing he'll love it and want to take over the leaf blowing again :-)
It is still very early in the season; I would guess that maybe 10% of the leaves have dropped. Jim is out there several times a day with his push broom and rake, trying to get every last leaf. It's good exercise and gives him a focus, but it is causing him way too much anxiety. He frets during the evening about what the driveway will look like the next morning. And, when the leaves really start falling, he would really be in trouble trying to keep it all spotless with the broom and the rake. We shall see.
So goes another week in the world of Jim and Carole. As always dear readers, thanks for stopping by!
16 comments:
Oh my, sorry to say I'm very familiar with many of the things you mentioned. My, my, bless you. The leaf blower sounds like a wonderful idea. Obsession and anxiety are the hardest things I deal with. I leap into action very quickly to head those off, consequently I become anxious. Over and over and over I go over things with Bob on a daily basis. Some of that is not new, some is new. He's always been anxious about everything. It's worse now. Sometimes I think it would be easier to refer to our communication as Charades. My heart goes out to you.
Oh, I know what you mean Linda. The anxiety is catching! It's hard not to internalize it when you're in the thick of it, and your hubby is crescendoing his anxiety. I have to chuckle at the thought of charades! Sometimes it does feel that way. Thanks for your kind words Linda.
You do walk a tightrope don't you? I am so amazed how you are adjusting to his ever changing condition. I am also so happy that you have sought assistance from the Alzheimer's Association. I'm glad they are helping you find a support group. I'm a huge believer in their benefit.
The blower should work out as you have described. Sounds like a plan.
Thanks Patti. Yes, at times it is a real balancing act. Jim seems to need to be in my presence more than ever. So the challenge for the future will be meeting his needs, yet finding some time for myself too. I miss grocery shopping by myself! I never thought I would think of it that way.
Can't wait for the blower to arrive. Maybe it will give me some alone time while I'm blowing the leaves :-)
I went from a gas-powered leaf blower to an electric leaf blower. It's not as powerful, but is lighter weight and works fine if you don't live in the woods. And ... best of luck with everything else.
Thanks Tom. We don't live in the woods; we have about an acre of land. Many pine trees, and the hardwoods are mostly in back of the house. But the wind blows plenty of leaves into our yard from the hardwoods that are near our property line.
From what I've read, this battery operated leaf blower will give you about an hour of leaf blowing before it needs recharging, as long as you run it at the lower speed. Fingers crossed that this will do the trick.
I read about your journey and realize that this could happen to me, or to my husband, and these coping mechanisms are important to learn how to navigate. I am so glad that the Alzheimer's group is so helpful. Sending you lots and lots of... gratitude that you are willing to share your struggles with me.
Yes, we're dealing with J's obsessing about getting an absentee ballot, and although I actually like to go and vote in person, I realize that doing it in advance avoids the crush of the crowds, which J might be finding unmanageable now. So, will be sending in the little forms tomorrow.
And, Yay! for contacting the Alzheimer Association - doesn't it just blow you away when people are so nice to you and helpful and kind! I found a whole world of people like that as I reach out for more and more services. Good luck going forward.
Thanks DJan. I'm learning that the dementia journey is different for every person, every caregiver. Every day I am learning, and I am challenged. I do believe that a lot of the strength I need must come from within myself. I'm searching, and usually finding, the psychological strength I need to help Jim, and help myself through each day.
Yes! I don't know why I should be so surprised by the kindness of others, but it does blow me away!
I so appreciate commiserating with you, even if it is just online. It makes me realize how much I need to talk to others who are also walking this journey. This week going forward will find me (finally) reaching out to others locally who are also struggling with the caregiver role. I'm remembering your advice to try several support groups to find the one that is the best fit. Thanks Jan.
He is very lucky to have you. I am glad you have sought financial advice regarding your future and his. David and I have been looking into our finances also.
Thanks Gigi. You are right, you can never be too prepared when planning for your financial future.
Poignant blog Carole. Interesting how things are slightly different in the U.K. But big issues at the moment in this country as many people with Alzheimer's are increasingly not being recognized as having medical needs and consequently left to self fund care provision. Our NHS cannot cope with the numbers and many people now approach growing old with real trepidation. Jim is lucky to have you.
Thanks for stopping by John. I appreciate your comment. In some parts of the country at the local level, there is funding and support for the concept of "Nursing Home Without Walls". It essentially provides the care that is needed in the home, rather than being placed in a NH. Insurance covers some of it, usually less than 50%. But it's a start.
Love your blog by the way!
What you said about not telling Jim about the leaf blower until it got there is something I really identify with both my father (who had dementia) and my husband (who had a massive stroke). My husband also had the issue of indicating the oppose of what he meant. Even knowing that, it's still hard on a caregiver/spouse, isn't it. I'm so glad you've got your ducks in a row for this phase of life. Communities, now, have a lot of resources to help when you need them.
One thing that really serviced my family well with my father was seeing a geriatric psychiatrist. We went as a family and he helped my father every other month for a year in the beginning stages (he lived five years after diagnosis). It helped dad understand what was going on and more importantly, got him to realize that he could trust my brother and me to do what is in his best interest as his dementia progressed. Issues like that are hard to talk about without a professional to ask the right questions.
First time reading your blog.
Thanks Jean for your comment. It sounds like you have a lot of experience in relating to family members with cognitive limitations. I appreciate your insights.
We are transferring our medical care to a local gerontologist. Her husband, who practices in the same building, is a psychiatrist. I'm hoping for the best. There is a slight wait for new patients for the practice, so Jim will not be able to see her until we return in April from FL.
I've also discovered an online one on one support system for caregivers. It is run by a University program, and I believe I am eligible for this service. I'll be writing about this soon in a post.
Thanks for stopping by. I always appreciate others' perspective.
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