Wednesday, December 28, 2016

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.

14 comments:

  1. I will just wish you a safe journey and will be keeping my fingers crossed that all will go well. Thinking of you both with love. :-)

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    1. Thanks DJan! Sending the love right back to you :-)

      I am hopeful that all will go well, but realistic in knowing that there will be bumps in the road. But I am ready, and will do my best for Jim.

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  2. I know I'm a new blogging acquaintance but I would like you to know that I think about you and Jim very often. Jim has my full sympathy but you have my admiration. I question if I would be able to cope if I were in your shoes. Anyway, I hope you both enjoy your break in a warmer climate and have a happy New Year.

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    1. Thanks for your sweet comment Valerie. I appreciate your kind words and warm wishes.

      One thing that helps me immensely is the wonderful marriage we have had. We found that we were quite compatible, had shared values, and very much in love. So even in the most difficult moments, I know that the "real Jim" is buried under neath the dark cloud of dementia.

      Sending best wishes for a Happy New Year across the pond Valerie! I so appreciate you, and all the other kind readers who stop by my blog for a visit. We may never meet in person, but it often feels like we "know" each other :-)

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  3. I do hope you are in that support group for I know they could learn from you. You amaze me with your understanding and patience. I had a blog buddy in the beginning who had been diagnosed with Alzheimers. He wrote as long as he could. I was amazed at how angry his writing was but you nailed it in your understanding of Jim's moments of anger and frustration. You are his rock.
    Hope you have a safe and relatively easy trip.

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    1. Thanks for your kind words Patti. Starting the first week in January, my LEAF Study sessions start. It is a one-on-one weekly session with a facilitator via video conferencing . The goal of the session is to teach caregivers coping skills for the stress that comes with caregiving. I'm really looking forward to it.

      I have not been successful in joining a local support group. When we get back in the Spring, Jim's friend Mike is willing to spend an extra few hours weekly so that I can actually go to a meeting without worrying about Jim being alone. I can't wait! I think the opportunity to share our ideas, our fears, our tips will all be good.

      Thanks for your good wishes. By the way, Jim just came up to me and said "Who is going to drive?". I said "Well, what do you think about that?" He said "I think you should drive." Wow, I never expected that. We then joked that he could yell at me if I was going to fast!

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  4. I hope this trip works out well for you and that Jim doesn't experience a lot of stress with the changes which would mean stress for you. I can't begin to imagine coping with the amount of snow in your part of the country. At least he'll be able to go outside in Florida, doesn't sound like he'd be able to do a lot of that where you live. He's very fortunate to have a caregiver who's not overwhelmed with the situation. Education is indeed the key. I'll be anxious to hear how your trip goes. Bob also released driving on his on, something I would never have dreamed would happen. So much nicer when they do.

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    1. I think the only reason that Jim likes for me to drive is that he is quite fearful of getting lost, not knowing how to get someplace etc. It's a double edged sword; he is fearful, but yet that fear is keeping him from wanting to drive.

      We both grew up in this area, but even after all these years we both hate the cold and the snow. And it just seems even more cruel the older we get.

      Thanks for your comment Linda, and Happy New Year!

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  5. Have a pleasant trip, Carole. Aloha from Hawaii.

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    1. Aloha Gigi. Thanks for the warm wishes :-)

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  6. Hope your Florida trip has gone well. His trust for you comes through clearly when you ask him what he thinks about who drives and he chooses you. Your prevention points are so clear that I can imagine they would be very helpful applications for caregivers coping with those with other dementias. Thanks for the neurology link discussing progressive aphasia. Happy New Year wishes!

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    1. Thanks Joared! We arrived yesterday. The trip went fairly well. There was an episode of him being VERY confused, but this passed with time. We are starting to settle in and appreciate the warm climate.

      I'm looking forward to sharing tips and ideas with other caregivers, once we are at home and I am able to hire some help so that I can leave the house without worry.

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  7. I am glad to hear that your trip went well, and also that you will be hiring some help once you get home. It think having some respite is so important for a caregiver's wellbeing. Enjoy the warm weather!

    Jude

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    1. Thanks Jude. I am looking forward to some good changes once we go home :-)

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