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!

Almost Never Alone

Jim went to get his hair cut the other day. It is one of the few places that he has been able to drive to by himself. When he came home, he told me that he "went the wrong way on 690".  It turns out that he was NOT driving against traffic (which is what I thought he meant at first), but instead, he went east instead of west. He somehow managed to get to the hairdresser in spite of this misdirection. He was unhappy with the haircut this time, saying that she did not get the sideburns even. He was correct about this, but it was off by only a tiny bit.

This is not the first time he has complained about the cut. He has been going to the same person for many years. According to Jim, she is always very animated and more interested in telling him about the latest crisis in her life, sometimes at the expense of a precision haircut. I decided to use this as an excuse to go with him next time.

Me: "Why don't I start going with you. That way I can keep an eye on her and ask her to correct any problems before we leave the salon."

Jim: "That's a great idea. I hate to say anything to her, but if you don't mind, that would be great."

I have noticed that when I am driving, he will frequently ask me "how do you know how to get there?".  His car is seldom driven. There are now exactly two places where I feel it is safe for him to drive; his friend Mike's house, and the local restaurant where the guys meet for lunch every Wednesday.

When we get ready to go someplace, I make sure I am the first out the door and quickly hop into the driver's seat of my car. This seems to be working pretty well. The other day he was admiring an Audi SUV.

Me: "We could probably go down to just one vehicle now. If we did that, we could certainly afford an Audi."

He was suddenly very quiet and never responded to what I said. I won't push it, not yet. The other day he wanted to go to the mall to look for some new jeans.

Jim: "I think you better go with me. I'm not sure I'd be able to find my way around in the mall. And I think I'd have trouble finding where I parked my car."

I am so grateful for this insecurity that he has about driving alone. It seems like we will be able to transition to him not driving at all without too much anguish. The down side is that it now becomes  difficult for me to have any alone time. I'll enjoy my Wednesday lunch time, as this is when he meets the guys for lunch. Otherwise, I'm on call 24/7 as the entertainment committee. "What are we going to do today?" or "I'm bored to death." "Let's go someplace!" I can still leave the house for short periods of time by myself, but it leaves him home alone, "bored to death". Another new reality, and I will adjust.

Leaf update. The battery operated leaf blower that I purchased works great. When he first saw it, he loved it. He then tried it out on our driveway. 15 minutes later he came in, very unhappy saying it was a "piece of junk". It has a turbo button. When turbo button is used, it goes through the battery pretty quickly. Operating at normal speed, it will last an hour. There has been a learning curve, as he is realizing that it works well if you avoid the turbo. So now he loves it again!

Even though I am retired, I've managed to keep up some professional links that are still of interest to me. One such website led me to this: http://leafstudy.ucsf.edu It is an opportunity to participate in a nursing research study for caregivers of loved ones with dementia. It is intended to increase levels of positive emotions, with the goal of decreasing stress and improving coping skills for caregivers. I have a phone interview this Tuesday to see if I qualify (I think I do).

They use video technology, so that you can participate from any part of the country, as long as you have access to wifi. I think that this might work well for me. Over the last couple of weeks I've had a couple of appointments (finance guy, Alzheimer's Association) where I've had to fib to Jim about where I was going. I hate that. I'm hoping that this format of video conferencing will be easier for me. And, I like the idea of supporting nursing research.

Well, once again I have managed to share what is on my mind and in my heart. Thanks for stopping by, dear readers.

Hot Means Cold, Yes Means No

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!

Looking to the Future

The dementia companion cards arrived! I like how they look. I'll always make sure I have a few in my purse so that I can feel more confident when we go out and about.

I've known for some time that I needed to find some additional support. Eventually, I will join a support group and I think I will enjoy the process of being a help and support to others, and in addition feel supported by others.

I struggle most with the personality and behavior changes that I see. The other stuff is easy. I'm a helper by nature, so my instincts are good most of the time. I run into difficulty when I feel that I am being wrongly accused, and I know there is nothing I can do about it. It hurts me so deeply. When Jim becomes angry at me over something that he is misunderstanding, it tears me apart. I know he can't help it. His memory is bad and his perceptions are off. It is my personal failing that I can not overcome the hurt that I feel when these kind of things happen.

I know I need some perspective, and I think a counselor could provide me with some guidance. The problem is, how the heck do I find someone that has some experience in working with caregivers? My very close friend Amy (who happens to be an amazing Social Worker!) suggested calling the local Alzheimer's Association and asking them for a recommendation for a counselor with experience in this area. So I did.

I actually have an appointment next week with a very nice person who does an intake interview. She was so nice on the phone! She will let me know about the resources that the AZ Assoc. offers caregivers (and the loved one). She will have ready some names of counselors in the area who have experience working with caregivers. I feel better already.

We meet yearly with our financial advisor. Last year when we went I remember that Jim pretty much just sat there and didn't say too much, other than some small talk. When I think back to that time, it reminds me of how much ground Jim has lost since then. Privately, I called our financial guy a few days ago to let him know what was going on with Jim's dementia. It sounds morbid to talk about it, but I know that I have to plan for the future.

On average, at the point of diagnosis, the life span of someone with dementia is about 1/2 of what it would be if they did not have dementia. (For example, according to the Social Security calculator, at age 70, the average male can expect to live another 15 years. If diagnosed with dementia, the life span on average would be 7.5 years.) I realize this is simply an average, or an estimate. A lot of other factors can weigh in to alter this as well; no one really knows. But it's a reminder that dementia will likely shorten your life span. This has implications for timing for social security benefits, investment strategies, planning for care at home etc. Lots to think about.

Next week Jim and I will meet with our advisor for a brief, general meeting. A few days later I will meet with our advisor by myself, to discuss long term financial planning for Jim's care etc. The discomfort I feel in "sneaking around" like this is very real. But at the same time, I feel that I don't have too many options at this point.

I'm in the process of changing our primary care doctors to a gerontologist who practices in our area. She comes highly recommended, and I look at it as a good opportunity to provide Jim with quality care as we travel through the next stages of life. Also, by both of us having the same doctor (we don't, now), it will be easy for me to communicate any concerns. Years ago, she diagnosed my dad with Lewy Body Dementia . No one else knew what was wrong with him. She, being the expert in gerontology immediately knew what the diagnosis was. It was a relief to finally know what was wrong, and she provided wonderful support and care for my dad and our family.

Looking to the future. So much to think about. Once again, thanks for stopping by. I can always count on my caring, faithful readers. My friend Amy (who reads this blog) mentioned how wonderful and supportive the commenters are. I so agree:-)