The Two-Factor Problem, & the Trouble with Travel

NEW: Documentaries,  above, lists videos that I have found helpful – check them out if interested.

The other day we had a conversation that startled me: J was remarking about some slacks that were no longer comfortable, so I suggested she go get all the slacks out of her closet and we’d sort through and see which ones fit, which didn’t and what size we should look for if getting new ones. So, she went to get the slacks out, and as she was putting them out on the bed she asked what it was we were doing. I said we were seeing which slacks fit, and which didn’t. She began trying on slacks, but lost track again and asked, What is it we’re doing?  I was keeping track of which brand and size was right, since it became clear that she could not manage this task. It was as if I’d asked her to do complex equations for me, in her head. We made two piles, one had slacks that didn’t fit well, and the other, ones that were okay. She sees that we are done with sorting, and goes to put them all back in the closet. I suggested I take the ones that didn’t fit and store them upstairs. This was surprising to her. She had already lost track of what we were doing.

The next day, she was picking up some books on the side table and musing aloud which ones came from the town library and which from the “little library” kiosk down the street.  There were two of each. I suggested that the town library books had little number tags on the spine.  Again, she picks up a book and wonders where it came from, and where it should go back to. I mildly said, well, library books have labels on the spine and inside. This had no effect – did not awaken recognition – but rather she continued to pick up a book, wonder aloud and set it down, veering close to frustration in not being able to figure this out. Ultimately she did not get worked up about it,  – rather, it sort of faded off.

There was something about these two episodes, with her being flummoxed with what I thought of as extremely simple, binary choices, that was heartbreaking. The only bright spot was that she did not become terribly upset – just mildly frustrated, and turned to something else.  But this is new, getting all snagged up with what looks like a simple either/or choice.

This time of year a lot of family and friends are traveling to warmer climates for vacations, so J’s frequent topic of conversation is how fun it would be to go to Florida… I would love the change of pace, too, but there are some factors that are simply invisible to J – planning travel and lodging, shutting up the house, dealing with bills and mail, car rental and driving in major Florida traffic, all while looking after J, among others – and she is both unaware of what’s involved and unaware that she cannot help with most of that now.

Then there is the actually being in another state. We could visit friends, for a bit, but realistically we would need lodgings of our own. By the time we’d made all the plans to leave a house in the winter, we’d need to stay a while to justify those efforts. Our life is exceptionally routine right now – Monday and Friday afternoons, and Wednesday morning and afternoons J goes to the Respite group. Tuesday afternoon she plays recorder and sometimes does other things with S from the companion agency. Thursdays she goes to the fitness class with a neighbor. Meanwhile, I have a support group for caregivers on Monday afternoon, and counseling on Thursday mornings. I can’t quite imagine how to arrange a similar level of both activities for J and respite for me in a new town. I could attend a support group in Florida, but I don’t think that it would be as easy for J to attend a Respite-type group. She’d say, “I can go to group at home, I don’t need it on vacation!” .

Then there is health. Although her health has been good recently, the stress of travel could easily generate a health crisis, and we would be faced with new doctors and hospitals who know nothing of her history. She is totally unable to give her own history now. She also has had some serious conditions in the past which, if health care providers are new to the case, would likely lead to just-to-be-on-the-safe-side tests and procedures.  Diagnostic testing is really difficult for a person with dementia, and maybe even more difficult for the caregiver, especially when the outcome is likely to be negative.

And finally, after spending some weeks in Florida and managing to get ourselve home in one piece, a few days later she will turn to me and say, “Wouldn’t it be nice to go to Florida like our friends do?”

If it sounds like I’m trying to justify not going to Florida, you’re right. I often feel badly about not wanting to take her, even though these realities form bigger barriers every year. Not sharing the perspective is tough, although her inability to see what I see may be keeping her calmer these days, and calm is a really good thing to have.

***

 


13 thoughts on “The Two-Factor Problem, & the Trouble with Travel

  1. You have my empathy. Right now I am sitting looking at the ocean and am aware this will be our last trip here. We drove from Ohio because the plane is too difficult for B. He no longer is able to drive and we found is an anxious rider.At one point he asked if we saw anyone in Florida and I had to say we are still on the way down. So although we settled into a routine it is still very stressful. I feel your pain.

    Liked by 2 people

  2. It is indeed shocking when a new deficit shows up. Even though we know that the disease is progressive, somehow it does not lessen the startling effect of it all. Another adjustment to be made as we travel this unwanted journey called dementia.

    I hear you about the travel! We have the sole burden of the planning and all the responsibility that comes with the travel. Our spouses are not capable of realizing the burden of this. I hadn’t thought of it, but you’ve given me a good reminder of the challenges that we face if our spouse has health problems so far from our home base.

    Thanks for a great post!

    Liked by 1 person

  3. Thanks for this articulate essay. When you describe the small events and the way you interact so calmly, it throws a vivid light on the losses J is enduring, and the efforts you are extending to make her life comfortable. Hugs to you both, Mame

    Liked by 1 person

    1. Thanks, Mamie – the simplest way to look at this is, It could be me….and that thought keeps me on course (most of the time!). I figure those who aren’t living with this situation now might be dealing with it in the future, and a realistic view of the challenges and how I deal with them could be useful.

      Liked by 1 person

  4. When I was 19 and working in a nursing home I had a resident that sobbed in pain when her family left. Little Annie turned to me and asked me when her family was going to visit. It hurt my heart to know that she was feeling so badly and did not remember that her family had just left. Her family was a loving family and did visit her it must have been really hard to realize it safer to leave her where she was than to bring her home.
    Loving our friends and family comes with delight and pain, this is why through our lives we make memories.

    Liked by 1 person

  5. Tricia, we are SO lucky to have wonderful memories – a really great time together for all these years. Even as the memory function fades for J, I still carry those images and feelings. Helps so much these days.
    Thanks for following!

    Like

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