Friday, February 3, 2017

I Have a Plan



I'm usually pretty good at figuring out what Jim is trying to say. But once in a while I can't. Usually it doesn't bother him, but lately he expresses anger. Today he said a vague, partial sentence: "what about ....(very long pause)". I suggested several things I thought he might be trying to say. None were right. Jim became quite upset, saying "How am I supposed to do this! You're no help!"

I know that he is frustrated that he can't express what is on his mind. How discouraging this must be for him! And yet it still hurts, because I know I am trying so hard to help him, even though I am not successful. I'm practicing some of the tips I've learned about resilient thinking, mental distancing and trading pain for self-compassion. These situations are still hard, but these activities help me to move out of the dumps that I usually find myself in after an upset. 

He is starting to have difficulty with time. He was looking at an analog clock and said to me "It's five six. I don't know what that means." (It was 6:25) Today he was telling me how cold he was (it was 76 degrees in our condo!). He looked at the digital display on the stove clock and said "It's too cold! It's five point four five!" It was 5:45. He somehow thought he was looking at the thermostat readout.

This afternoon he was certain that his glasses were lost, and he could not find them. He has a pair of glasses for reading, and one pair of sunglasses. I showed him the shelf where both pairs of glasses were. He was not convinced. And I could tell that if I pressed the issue, it would just anger him. I'll spare you the sad details, but I joined him for over an hour looking in every nook and cranny for a nonexistent pair of missing glasses. He finally came to the conclusion himself that the two pairs of glasses were the only ones he brought with him. Whew!

So, I have a plan: 

1) The transition is being made for his health care to be managed by a gerontologist. I'm looking forward to working with her to provide a better quality of life for Jim. I know that the medications for dementia do not halt the progression of the disease, but at this point I would welcome a steadiness and hope for some improvement in his day to day functioning. Something for the anxiety is desperately needed as well.

2) Plane tickets have been purchased for the flight home in March. Jim's friend Mike has graciously offered to drive our car home for us. There will likely be confusion, but one day of confusion is way more manageable than three.

3) Blocks of time for me: Once we are home, I plan to hire help (under the guise of housekeeper, handyman, friend time) for 3 blocks of time each week. This will allow me to keep my own appointments, go to a support group, lunch with a friend, go to my favorite YMCA class, see my mom. 

Thanks for stopping by, and as always, thanks for listening!

16 comments:

  1. This sounds like a very good plan. You sound like such a strong, organized person. Jim is very lucky to have you.

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    1. Thanks Kay. I don't always feel strong, but I'm working hard to make the best of a sad situation. Being organized helps me to feel a little more in control, as Jim and I live with a disease process that offers no control in its progression.

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  2. That does sound like a plan. You're lucky to have found an alternate care giver so you have time to take care of yourself.

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    1. Thanks SJ. I have some details to work out, but I'm feeling better knowing that I have a plan that will help me to keep my sanity.

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  3. Your plan is a good one. No matter what, a little 'my' time will be beneficial for both you and Jim.

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    1. You're right Valerie! I know that to be there for Jim, I have to take care of myself as well. The book I am reading discusses the need to be kind to yourself. This has been helpful to me. I expect to find additional support with a support group. Meeting with others in the same situation will certainly be a good help and support for me as the dementia progresses.

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  4. You are doing everything right, it seems to me. Now in March you can deal with the plane flight and hopefully by that time you'll have some anxiety medications for him to take. And the support group and the blocks of time for yourself make perfect sense to me. :-)

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    1. Thanks for your encouragement DJan. I'm not looking forward to the flight, but I have much less trepidation about it compared to the three day car trip!

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  5. Like Djan mentioned, perhaps he could be given a sedative for the flight. Not sure how that would work for him but I'd check it out with a doctor and maybe do a practice run before the flight.
    I am delighted you are carving out some time for yourself in the future. To be strong for him you must be strong for yourself.

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    1. Thanks Patti. I'm looking forward to returning home and getting some support and time for myself. The constant one to one is draining. (Shower times and naps give me some nice time for myself!) I just spoke to my brother and he is more than ready, willing and able to take the lead on helping my mom. I can't tell you what that means to me. Such a huge relief.

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  6. Sounds like a good plan. My mother had dementia (not Alzheimer's), but the medication she took resulted in unpleasant side effects, so she stopped taking it. She died at age 99.

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    1. Good point Gigi. Medication often have unwanted side effects, and everyone tolerates medication differently. I'll definitely be on the watch for that.

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  7. I am glad that you have found an alternative to the three-day drive. You have been waiting a long time for the transition to the gerontologist, so that will be good once you have that medical support. And I am so glad to hear that you will be carving out some blocks of time each week for yourself! You are doing so much for Jim, but you also need to take care of yourself -- not only so that you can "be there" for Jim, but also because you need it and deserve it.

    Jude

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    1. We had a coffee hour at the pool on Thursday. Jim was only a few feet away from me, but was sitting with a bunch of guys, while I was sitting at a table of ladies. So even though he was physically close by, the social experience was as if we were apart. Afterwards I realized how rejuvenated I felt! Definitely must plan some time for myself, so that I can be a better caregiver for him. Thanks for your comment Jude.

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  8. I am praying for you - it is so difficult to see someone we love decline - but stay strong,take care of yourself and remember a lot of people are praying for you and your husband. This is something a lot of us will face in our lives whether with a husband, parent, friend or other family members - it's something we don't expect until it shows up. God Bless - Mary Ellen

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    1. Hi Mary Ellen. Thanks so much for your kind words. I remember when I slowly came to the realization of what was going on, it was shocking to me. You're right, it is not something we expect or plan for.

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