The Fear Within: I am Here for You

Sometimes the changes are so insidious, I'm not aware of them unless I think back to a prior time and do a comparison. As we get ready to head to Florida, the comparison to last year's trip is pretty interesting. There is more confusion and the language changes are profound.  As Jim's dementia progresses, the more convinced I am that it is  Primary Progressive Aphasia, either Semantic or the Logopenic subtype. I guess it really doesn't matter, but I do have a clinical curiosity.

I'm getting better at preventing upsets. There will always be moments of upset that catch me off-guard. And I am working on improving my emotional response to these  moments. But the key to prevention seems to be:

1)  When I hear him speak, I drop what I am doing, go to him, and give him my full attention. It used to really annoy me that I would hear him speaking to me 3 rooms away. (Why can't he walk over to me?) This doesn't annoy me anymore. I realize that he is doing the best he can, and I need to accommodate the deficits he has in communicating with me.

2) Body language and tone of voice are critical. Both should reflect full attention, calm, and a loving presence.

3) A hug, hand holding, sweet kiss on the cheek all do wonders to calm the waters. They send a message: "You are safe, loved, and adored. I'm here for you and we will figure this out."

4) Avoiding TMI. Too much information is absolutely counterproductive. Short, to the point answers are the best. Long explanations simply cause profound confusion.

5) Proactively create an environment that will be calming. This means avoiding large crowds and organizing social situations in a way that will minimize the stress. When we are with friends, family, my focus and attention needs to be on Jim. If I get too wrapped up in a conversation with another person, my guard is down, and all of the things I mentioned above do not happen. Not good.

I'm very happy that I have come to this place of understanding in my relationship with Jim. It really boils down to my acceptance as Jim's caregiver. I'm embracing it, and running with it. I'm no longer fighting it. I'm far from perfect, but I'm definitely getting better at it.

We are in the process of packing, getting ready to head South for 3 months. There has been a lot of confusion the last couple of days, but fortunately no real upsets. The following conversation illustrates how I am getting better at all of this.

Me: " Do you want to pack your favorite short sleeve gray t-shirts?" (This is his staple in the summer.)

Jim: "No!!! I don't need that !!!"

Me: "OK"

The old me would have gone to great lengths to explain why he would regret it if he didn't pack his favorite shirts. An hour later he came to me and suggested that I pack the gray t-shirts for him. If he hadn't done that, my plan was to put them in my luggage surreptitiously.

I read an article the other day from the Alzheimers Reading Room. It described the fear that folks with dementia have, and that the fear often gets manifested as anger/anxiety. This makes sense to me. As I try to put myself in Jim's shoes, I can't imagine what it must be like to live in a world of confusion, a world where things do not make sense. Of course he is fearful! Who wouldn't be? I always want Jim to see me as someone who will help and protect him.

Jim's confusion about things is definitely worsening. This morning he wanted to know "whose house is this?" and "who owns this house?" I think this stems from the fact that we will be renting a condo for 3 months. Sometimes he transposes facts from one situation to another. I reassured him that we owned this house, that this is indeed our house.

He wondered about our furniture. "We shouldn't leave it here, should we?"

I know that by leaving for 3 months there is a greater likelihood of confusion for Jim. I've considered the possibility of not going, but that would have it's own set of consequences. Jim has been talking about escaping the winter and so looking forward to the warmer weather.

I imagine that over the next several years I will be faced with a lot of decisions where the best answer for Jim is not always clear. So, I'll continue to move forward knowing that I have an escape hatch. If things become too much for Jim, I'll simply say that our lease is up and it is time to go home. I don't think he would know the difference.

We leave Friday, and will do two overnights to reach FL. Jim almost never wants to drive now, so I expect this will not present itself as an issue. It will be reassuring to both of us that our friends (whom we socialize with locally) will already be there.

Thanks for stopping by. As always, it helps me to put my thoughts into words. Wishing all of my readers a Happy New Year.