Saturday, July 9, 2016

The Filter in Our Brain


Our social life is not what it used to be. Part of it is Jim's preference; I'm guessing at some level he senses increasing difficulty in being a part of social conversations. Small talk is always easiest, but anything in depth and it is obviously more of a struggle. He becomes much more quiet and looks to me to keep the conversation going.

Part of the decrease in social activities with others is because of me. We used to routinely go out to dinner with friends. Now when faced with an evening with friends I worry that Jim will exhibit irritation or anxiety ("this food is awful!" "where is that waiter?!").  I'm embarrassed by these things, worrying that people will only see it as rude behavior (which it is!). Once in a while he will say something that I know will hurt someone's feelings. I understand that it is part of the disease process, but for others it is likely seen as mean-spirited.

The filter that most of us have in our brain that keeps us from saying or doing something inappropriate does not work as well for Jim. The other day he said something disparaging about someone's (a stranger's) appearance. It was said loud enough where I was concerned that the person heard the remark. This is so unlike him. One of the things that first attracted me to him was his kindness to others and his gentle spirit, especially to those less fortunate.

For balance, I need to point out that many times he can be very sociable, very funny and a true joy to be around. I just never know what to expect when.

The struggle with word finding continues. I've been reading about Primary Progressive Aphasia, logopenic type, which is a type of dementia that is usually a variant of Alzheimers. It is notable for short term memory loss, problems with word finding and with repetition. This is a good link that gives the specifics.
https://ftd.med.upenn.edu/about-ftd-related-disorders/what-are-these-conditions/progressive-language/logopenic-variant-of-primary-progressive-aphasia-lvppa

The other thing about dementia is that on autopsy they often find "mixed dementia". In other words there is more than one type of dementia that is manifested in the brain.

I don't really know if PPA-logopenic is the correct diagnosis, but he certainly has these symptoms. He has an upcoming appointment with his PCP next month. When it gets closer to the date, I will make another attempt to see if I can go with him to discuss these concerns. So far he has not agreed to this as he does not think that he has any problems. While there is no treatment or cure, if the diagnosis was known and acknowledged I think it would be helpful, at least for me. At the same time I recognize that Jim may never acknowledge any deficits. Apparently this is fairly common for those with Alzheimers.

I've decided to be more open to joining a support group. I tend not to be a "group" person per se. But I figure it wouldn't hurt to look at my options and give it a try. I think that one potential benefit would to feel like I am not alone. My online support is wonderful! But perhaps some "face time" with others going through the same thing might be of benefit to me.

These days my brain filter is on high alert, and always running through the very specialized caregiver filter. I suppose in some way it is an attempt to compensate for Jim's brain filter that at this point is a bit askew. We are both adjusting to these life altering circumstances as best as we can. It gives me peace to be able to write these words and know that those who read are kind, compassionate and only wish the best for us.

Thank you dear readers. I so appreciate each of you who take time to read my blog.

17 comments:

  1. I read a comment this week I thought described the filtering process of aging people accurately, it's like being with a room full of middle-schoolers.

    I certainly haven't read anything like as much as you on the subject of dementia, probably because I don't see Bob's as anything more than you might expect from a person 84 and in poor health.

    I think I wrote in a comment about an extended family member's situation regarding dementia/alzheimer's. That situation has been nothing but an ongoing sequence of frustrating experiences in the world of mental health. You can try but I'm not sure any diagnosis is going to be all that accurate, especially at what appears to be the early stages for your husband. I've been amazed at some of the experiences this family has been through trying to work their way in the world of medicine for mental health. I just don't think there's much out there. I wish I could be more optimistic but frankly I'm a little shaken by what I've seen lately.

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    1. It's hard to be optimistic when you consider the dismal prognosis of dementia. Our country will soon see the aftermath as millions of baby boomers succumb to this terrible disease.

      You have an up close and personal knowledge of altered brain function, between Bob and your extended family member. It is heartbreaking. I'm trying to shore myself up, realizing that this is just the beginning, and it will surely get much, much harder.

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  2. Glad to hear you are thinking about support group. If you have more than one option in your area, try them all. Each one has a different character, need to find one that fits your needs. Sitting in a room of people who are all caregivers is a strangely good feeling - for me, it's one place I feel completely normal! Sometimes it's heavy sledding, but often it's encouraging, and you come away with good ideas. Best of luck with this, Carole.

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    1. Thanks Jan. I'm a little nervous about trying this, but guess I have nothing to lose and possibly a lot to gain. It's good to know that you have had a positive experience with this. I'll keep in mind what you said about trying several to find a good fit.

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  3. I can't imagine the tight rope you walk daily. It must be exhausting. I am so happy you are considering a support group. Just being around folks you can relax around and learn from is priceless. They have been where you are and dealt with similar problems. I do hope you join one. My cancer support group was a blessing. Like Jabberwalky said, support groups are about the only place where you feel perfectly normal.

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  4. Thanks for the encouragement Patti. It is good to hear that support groups have been helpful for both you and for Jan. It sure would be nice to have some give and take with folks who really understand what it is like. I'm realizing I need to get stronger so that I can face the future in a more positive light. I've also thought about volunteering one day at week at our local Alzheimer's chapter, helping with events, answering phones etc. It would bring me into their community and be a good place to learn more as well as an opportunity to give of myself to a very important organization.

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  5. I think support groups are essential, for anything from caregiving to problems we have in life, such as AA or Al-Anon. I've belonged to them in the past, but right now I feel fortunate to have a wonderful circle of friends who act as sounding boards. I feel for you and send you my concern. Thanks for your blog! :-)

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  6. Aww, thanks for your concern DJan! You make a good point. Likely all of us, at one time or another would benefit from some extra support. Perhaps my time has come.

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  7. The link you provided is very informative as are the therapy intervention recommendations -- especially providing visuals/pictures and there are so many available now from various sources helpful to a person with dementia at certain stages. Tapping into other sensory systems, pathways in the brain, can be very beneficial helping the individual to express and the caregiver to understand. Having a local support group sounds like a very wise move.



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    1. I'm learning so much about this disease process. It does sound like we are rather early in the process. I think Jim's cognitive reserve (very,very smart!) has helped. The more I read, and the more I process what is happening with an open mind (albeit cognitive filter in place), the better outcomes I hope to have in this struggle Jim is having.

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  8. You can try a support group to help you through this trying period. Good luck to both of you.

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    1. Thanks Gigi. There are definitely ups and downs these days with some days being better than others. I'm finding that if I keep a good attitude things seem to go a little better.

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  9. Hi Carole,
    I just found your blog. You are a member of that club that no one wants to join. My husband also has dementia but is still pretty functional. He has not had scans or an MRI to determine the exact location of his brain that is affected because it would change nothing. He started on Aricept in January and it helped in that he was starting to hear people talking outside our windows at night and this stopped. In April he started on Namenda and his cognition improved a lot. I know that the disease is progressing but the drugs are making it much less noticeable. When they can no longer keep up I imagine there will be a dramatic decline and I am dreading that. Like you I can still leave the house whenever I want and in fact I still work but will retire in the next 5 months. His family are aware of his memory issues and his sister is currently in stage 6. Needless to say the other siblings are worried for themselves. I don't think I am depressed but I have feelings of extreme sadness. This is unlike cancer or any other chronic illness because you feel so alone.

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    1. Thanks so much for your comments. My dad had Lewy Body Dementia and had both auditory and visual hallucinations, as well as memory problems. You are so right, it is "the club no one wants to join"!

      I'm so glad for you that your husband has responded to the Aricept and the Namenda. As the disease progresses, I will certainly give thought to something like this for Jim. Another commenter noted that for her family member it allowed him to remain at home for a longer period of time.

      At this point, because Jim is still so functional, I consider us to be pretty fortunate. I'm trying to appreciate what we have now, knowing that it's not going to get any better.

      Keep in touch; it helps to know there are others out there going through the same thing :-)

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  10. Just a thought but the sooner a person starts on the drugs the sooner their baseline stabilizes. My husband is still pretty functional - drives, maintains the yard, grocery shops for basics - but was having short term memory issues and difficulty figuring things out. The drugs have helped him with his thinking process but not with short term memory. He did go out today and buy a birthday card to send to his brother and I was amazed that he thought to do that. His neurologist said that he wished family doctors would start patients on those drugs when a diagnosis of AD is suspected but
    when there is a wait to see the neurologist. Apparently they do nothing harmful if AD is not the end diagnosis.

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    1. So much to think about...Jim does not accept or acknowledge that he has any deficits. I'm not sure how much I can push him on this. At this point he still trusts me. It feels like I'm between a rock and a hard place. If I force the issue, does he then become despondent over this new diagnosis? It's very, very complicated. Thanks for your thoughts. It always feels good to share thoughts and ideas with others in the same boat :-)

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