Friday, May 19, 2017

Smack Dab in the Middle of the Land of Dementia

Jim went for imaging of his brain.  My explanation that it was a screening for those over 65 was accepted by him. I was ready with my companion card, and very glad that I brought it with me.

At check-in, there were several forms to fill out and sign. I filled out the forms, but when it came time to sign, Jim struggled. He managed to write his first name (hardly recognizable) and then turned to me and said "Will you do this for me?". I showed the POA to the receptionist, and then signed the forms for Jim. This was heartbreaking for me. At times like this, I wonder how it makes him feel. Does he realize that this is not normal? Or is he so focused on the difficulty of the task that he is just grateful that I am there to help him.

The imaging confirmed the diagnosis of Alzheimer's Disease. I was not surprised, but still, it is shocking in some ways.  After all this time, you wouldn't think so. But I still sometimes wonder how all of this became our reality.

Jim's anxiety is much better. The citalopram has worked well for him. There have been several instances that typically would result in high anxiety and anger. Now, his reaction is much more subdued. What a relief!

The one caveat is that while it helps with anxious situations at home, situations outside the home are still capable of producing anxiety. So I continue to be careful with where we go, keeping the time away from home short, and avoiding noisy, busy environments.

He is on the highest safe dose of the citalopram; maximum benefit will be evident within the next 2 -3 weeks. I'm very grateful for the improvement I've seen so far. When I think back to how things were just prior to starting the medication, the difference is astounding.

Jim still does not tolerate me being away from him. He has been less tolerant of lunch with Mike, or even a visit from Mike. My thinking is that as Jim's deficits increase, he feels less secure away from me. My good friend Jan has given me lots of encouragement and some good advice on options to explore, as I try to figure out ways to make time for myself away from the home.

I've written before that Jim sleeps a lot. The amount of time he sleeps seems to be increasing. During the day when he naps, I take full advantage of the time. In the evening he goes to bed about 7:30. Although he usually will come out of the bedroom every 10 minutes or so, just to check on me. He is the most confused in the evening. Lately he has been incorporating what he sees on TV into his reality. Last night we were watching the news about the latest Trump scandal, and Jim said "Trump said that to me yesterday."

Language skills continue to decline. But I am getting better at interpreting what he needs. Sometimes he pantomimes, gestures or points while speaking, which helps a lot. Sometimes he makes a declarative sentence that makes no sense at all. When he does that, a neutral response by me helps prevent frustration for both of us.

I've written before that I never correct Jim if he says something that is wrong or inaccurate. The exceptions are if it is something of danger, or if it is of great importance. Something I have been thinking about are the times when Jim does not remember who I am. Should I correct him on this? Is it really important? I think it is, especially if he is worried or upset.

One evening last week, he didn't know where he was, how he got here, and "Where is Carole?". He was so distraught, it made sense at the time to gently orient him. At some point I suggested we just go to sleep and talk about everything in the morning. Of course in the morning he had no recollection of our conversation from the night before.


The land of dementia. No one wants to be here. But here we are. Smack dab in the middle of it. Making the best of it, finding our way, and learning as we go.

Thanks for stopping by. My heart feels lighter. I appreciate each one of you!




16 comments:

  1. I so admire your strength and commitment to Jim. My heart aches for what you are going through. Life can be just unfair.

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    1. Hi Mary. Yes, it does seem that life is unfair sometimes. Some days are harder than others. I try to focus on the positive. I know that this will become more difficult as time passes, so I'm trying to stay strong, knowing that I'll need that strength to see us through. Thank you for your kind words.

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  2. I've said it before, but I think it every time you write: Jim is so lucky to have you as his partner in this terrible situation. I'm glad you are able to write about it because it helps me understand others in this situation, as well as you. Sending you virtual hugs.

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    1. Hi DJan. When I think about how much I have learned about dementia, it just amazes me. I'm grateful if others can learn from my experiences. It is likely that all of us at some point will be touched in life by dementia. If not first hand, possibly in a public setting. Greater sensitivity on our part will help the person and the caregiver too. Thanks for the hugs :-) Sending them right back to you too!

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  3. You are a very kind, compassionate, loving wife. Somewhere, deep inside of him, I know Jim knows this too. The dementia just overwhelms it, though.

    I've heard about the evenings being hardest on dementia patients, called sundowner effect. I've read that there are ways to help with this effect. Maybe your doctor can give you some help with it.

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    1. Hi kdzody. Yes, Jim definitely experiences the sundown effect. I've read that consistency in routine, reassurance, plenty of light (unless it is bedtime of course), and minimizing over stimulation can help.

      I don't write about it often enough, but Jim does appreciate me and lets me know in his own way. This morning we had a glitch in our in-home security system that required several phone calls with tech support, changing a couple of batteries etc. After it was all done and settled, Jim said "I'm so glad you were here to help me with this." How sweet! And he must tell me (and I him,) how much he loves me many times a day.

      Thanks for your comment dkzody.

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  4. Thank you for continuing to share your life with us. I was talking to my husband yesterday after he had a memory lapse. Many years ago, when we were engaged to be married, my husband got cold feet and we broke off the engagement. After a couple of miserable weeks, he called and we ultimately married. (53+ years now) I told him yesterday I was glad he came back because he knew I would take care of him until the end because I loved him. I feel your thoughts are just this -- you love your husband and will do what ever it takes to make his life comfortable and safe. It's a forever kind of love and it's very special. Grateful hugs, Carol

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    1. Hi Tehachap. Thanks so much for sharing your story, and for your kind words. You have it exactly right! Keeping him safe, comfortable and content is my priority.

      I once read (I can't remember where) that "when you pick your spouse, you should think about who you would want to push your wheelchair". I don't remember thinking about such things when I was engaged, but our love was powerful, and it still is. So grateful for this love we share.

      Hugs right back to you Tehachap :-)

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    2. I am so pleased that the citalopram is helping Jim and you. It is encouraging that the longer he is on it the greater the improvement may be. Hope it just keeps getting better.
      That he does show his appreciation and love for you on occcasion has to make this all just a little easier. Your journey is so hard but your account is also helping us to be more understanding of this disease that affects just about all of us directly or indirectly. Thank you.

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    3. Hi Patti. I am so pleased at how well the citalopram is working! I'm realistic that things can't be "perfect" when you are working with this disease, but so very happy that Jim seems so much calmer and more content. And therefore so am I!

      We have always had a very affectionate relationship. Lots of hugs, hand holding, sitting close on the sofa together. And this has not changed. If anything, I would say that he is even more affectionate and wanting lots of hugs and "I love you's".

      I can't imagine how hard this journey would be for someone who did not have a loving relationship to begin with. Thanks for your comment Patti.

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  5. So, it is Alzheimer's, then? Ronald Reagan was afflicted with that disease.

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    1. Yes Gigi, it is Alzheimer's. You are right about Ronald Reagan. Glen Campbell has it too. Unfortunately it will effect so many of us baby boomers. If not directly, then indirectly.

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  6. My Grandma had dementia and declined slowly over two decades from the time that her confusion first manifested itself. The last time that I saw her when she was 99, she was in a wheelchair and she no longer had language. I don't believe that she knew who I was, but she was pleased to see me. She held my hand, and then, with my hand in hers, brought both our hands to her heart in a loving gesture. Having lost so much, she still felt a range of emotions. She passed away a few days after her 100th birthday.

    Jude

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    1. Thanks for sharing this touching story Jude. It's a good reminder that even if the person doesn't recognize you, they will know they are loved. And in the end, I think that is one of the best gifts we can give someone who is struggling with dementia.

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  7. Sorry I did not come back to your blog, but frankly I have not been reading any blog – I just try to write one post per month, mostly to stay sane. In addition to Jim’s Alzheimer I am trying to clear out our house for a move closer to our younger daughter. We have been here over 40 years. In addition both of my knees are bone on bone because I did not have an operation years ago, because of Jim, so now have to use 2 canes and can barely walk – it is not easy for the move. It was interesting to me to see the symptoms of your Jim and they are different from my Jim. He has had Alzheimer now since about 2008 or 09 and is still in stage 5. He cannot speak sentences anymore (but some days he can) and can barely understand TV (he does not know who D. Trump is.) But he is happy, sings often (in the morning) does not want to wash – I have to help him in the shower. He can stay in the yard alone, sitting on a chair looking at the birds and be happy. We can go to the restaurants but I have to order. I don’t think he knows who I am – a housekeeper I think. He does not know his name, mine, where we live, where is bedroom is, etc. He is not anxious at all and does not know he has Alzheimer. He loves going to the grocery stores and will try to speak to people. He is very stressful to me though because he breaks things (it is never him he says, but “people”) and ask the same questions constantly. He also tries to wash the dirty dishes, just with water, then he’ll placed them back wherever, greasy. He takes 2 Prozac per day and 2 Namenda for his Alzheimer (some other pills for his dormant bladder cancer.) He tried Aricept at the beginning but it gave him horrible nightmares and depression. He closes the shades often and checks the locks on doors but is not suspicious of me, but if tired he can get a bit aggressive. I thought you’d like to hear about the differences. I noticed his memory problems in 2007 so that is about 10 years now.

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    1. Hi Vagabonde. It is so good to hear from you! Yes, it is interesting and helpful to compare notes, and to see what the differences are. It must be so difficult for you, with your physical limitations from your bad knees. My heart goes out to you.

      Hang in there. It's good that we have a safe place to share and communicate. Take care Vagabonde.

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