Sunday, October 23, 2016

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.




18 comments:

  1. That's funny. I never complain about my haircut. But my wife always does. Maybe I should get her to go with me! But seriously, you seem to be handling a difficult situation with grace and aplomb; and that UCSF program sounds helpful.

    ReplyDelete
    Replies
    1. Thanks Tom. I'm hoping the UCSF program will fulfill my need for some support. It will be increasingly hard to get away on a regular basis, such as for seeing a counselor, without being deceitful of where I am going.

      I'll be bringing one of my Ken-Ken math puzzles or my Kindle to these hair appointments. Hopefully I can help Jim critique his cut before we leave the shop!

      Delete
  2. Oh my, that never anytime alone situation does take some getting used to. Once they can't drive anymore you find that greatly increases your time together.

    Our relative who very recently went to memory care is dying tonight. Her diagnosis was 'Frontotemporal Dementia.' I believe they made her diagnosis on the basis of an MRI. She had terrific mood swings and they never found a medication that worked for her. She could not take Lithium. She had a bad fall six months ago and went rapidly downhill after that.

    ReplyDelete
    Replies
    1. Oh Linda, I am so sorry to hear this. You have had more than your share of exposure to loved ones with dementia.

      I'm pretty sure Jim has one of the variants of FTD, based on the language difficulties (temporal lobe) and his personality changes (frontal lobe). What I have read is that regardless of the type of dementia, everyone's journey is difficult. I'm such a planner, I like to know what to expect. But it looks like we'll continue to experience life's little surprises!

      Delete
  3. I so enjoy your posts, Carole, and I know that if your situation were to happen to me, I'd be able to cope better because of having learned strategies from you. You are often on my mind as I go through my days.

    ReplyDelete
    Replies
    1. Thanks DJan. I'm learning as I go, and I am always inspired and encouraged by others, like yourself and other readers who have found their way to this blog. Your tender heart makes me believe that you would be a good caregiver, should the need arise. Hopefully it won't!

      Delete
  4. It's good that he still knows how to drive, though he might get lost. I suppose there will come a time when he will hand you the keys and you will dispose of the car.

    ReplyDelete
    Replies
    1. Thanks for your comment Gigi. Jim is definitely feeling anxious and fearful of getting lost. Normally this would not be a good thing, but I think it will eliminate a lot of the struggles that many older folks have in giving up the keys.

      Delete
  5. Your situation hasn't happened to me or my husband yet, but your posta makes me appreciate him every day that we are retired together - both of us in reasonable good health. Blogging is such a great catharsis. Keep it up.

    ReplyDelete
    Replies
    1. Thanks for your comment fiftyodd. I'm glad I retired when I did so that we had a few "good" years before dementia. You look young :-) So here is to hoping for a long healthy retirement for you and your husband.

      Delete
  6. It is so good he is not fighting the loss of driving and letting you take the wheel most of the time. It was so smart of you to offer to keep an eye on his hairdresser for him. A real face saving technique. You are a natural diplomat. Maybe you could get one of his friends pick him up for their get togethers so you could relax about them also. You are doing an amazing job. Keep it up and try to squeeze in some "me" time for yourself.

    ReplyDelete
    Replies
    1. Thanks Patti. I'm not sure I'm deserving of the diplomat description, but the effort is there, and most times I am successful :-)

      I'm working on the "me" time. I made it back to the gym today for one of my classes that I love. I missed a couple of weeks because of life getting in the way. Thanks for your kind words. (Missed your post this morning, but as long as I know you are OK, then everything is good :-))

      Delete
  7. I think the study group will be wise and lucky to have you participating in their research so hope you're accepted. You describe your experiences so clearly and so well, plus you make handling of the situations you encounter seem so simple and logical yet express the instances of your uncertainties.

    ReplyDelete
    Replies
    1. Thanks Joared. I just spoke to the study coordinator yesterday. I "passed" their requirements and have been enrolled in the study. I was randomly assigned to "group 2", which means an 8 week waiting period prior to the online one-on-one video sessions start. In the meantime, I will be completing daily online "daily emotional surveys".

      Yes, I have a lot of uncertainties at times on how best to handle different situations. My goal is always to minimize the stress for both of us without doing harm.

      Delete
  8. Carole, your account is so vivid. Your title, "almost never alone," points to something that is really hard to cope with in this kind of care-giving situation. I am glad to hear that Jim still has some social connections that give you some independent time. Over the long haul, it will become important for you to have opportunities for respite, but as you indicate, it sure can be tricky to arrange and explain. I wish you all the best.
    -Jude

    ReplyDelete
    Replies
    1. Thanks for your comment Jude. At times I feel very brave, and other times I am scared for my/our future. The fluctuating emotions are an everyday reality.

      Just discovered your blog. Love it! Your writing skills are exceptional. I look forward to following your blog.

      Delete
  9. Hi Carole
    I hope the interview went well on Tuesday and that you have managed to get onto the study. It sounds really interesting. My mum had dementia for 5 years although looking back there were signs way before this. I love the compassion you show and also the small pratical steps you take which can make such a difference. Good stuff.

    ReplyDelete
    Replies
    1. Thanks John. The interview went well, and I have been enrolled in the study. I'm looking forward to the support, and the hope of improving my happiness quotient.

      I think it is fairly common for family to look back and realize there were signs of dementia, prior to the actual diagnosis.

      I'm grateful for the ability to write about this. It is a wonderful outlet for me and part of my coping with these life changes. Thanks for your kind words.

      Delete