Monday, April 17, 2017

"You Need to Go Home"

It's been a rough few days. Jim has needed more than the typical attentiveness from me. I'm tired, but cannot sleep, which is unusual for me. Jim doesn't know who I am. But he is certain I am not Carole.

Jim's anxiety has been pretty high the last few days. This has required super high attentiveness on my part. It requires a presence; not just being in the house with him, but being in close proximity. I tire of the endless TV that helps to keep him entertained. My relief from the endless stuff on TV is my beloved math puzzles, KenKen. I love the challenge, and it actually is relaxing to me. I print one out, put it on a clipboard and go to town on solving it. My favorite ones are the 9x9, with 4 operations, expert level. I can claim no credit for my skills in this department; I inherited my math skills from my dad.

But today was different.  Jim took the clipboard from my hand and made some disparging comment. So, I set it aside, and focused on the mindless TV show he was watching. So much of what he said today was nonsensical. As I listened to him talk, it was almost like I was observing someone with a psychiatric break in reality. But that is what dementia can sound like. Words put together that don't make sense.

This is so incredibly sad. Jim doesn't know I am Carole, his wife. Who does he think I am? When I attempted to show him our wedding picture, rings etc, it did not change his thinking.

We finally went to bed, but he could not sleep. At one point he said "You have to go home."

Me: "I am home. I am here in our home that we have shared for many years."

Jim: "You're confusing me. You need to go home."

Me: "Why don't we wait until the morning to sort this out?"

Jim: "But you can't sleep in this bed. There is a third party...."

So, I said that I would sleep on the sofa because it was so late, and we would figure it out in the morning. He accepted this.

What will tomorrow morning bring? I don't know.

Most days I feel strong, and I know that I can do this. But in weak moments like tonight, I question myself and my ability to stay strong. I know we need help. And there is comfort in knowing that help is on the way.




22 comments:

  1. When is your (his) appointment with the new doctor? I'm sure you are considering giving the office a buzz to see if you can get him in faster. I can't help but wonder why he's progressing at such a rate. I hope the night on the sofa works out okay and you get a little rest, but I am fairly sure you are lying there with your mind spinning. I'm trying to send positive thoughts to help you get through this, Carole. Hugs!

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    1. Hi SJ. Jim's appointment is in 10 days. Dr. S's office schedules only one "new patient" appointment per day. It's a comprehensive appointment that covers a lot of ground. I'm on a cancellation list. So I will be patient, and know that help is on the way.

      I've read that those who develop dementia symptoms in their 60's, as opposed to their 70's and 80's, progress at a faster rate. Research isn't clear as to why this is the case.

      Around 3 AM Jim came out and asked me to come to bed with him. He is less confused this morning, not as anxious as last night. I imagine though that he is even more exhausted than I am.

      Sending hugs right back SJ :-)

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  2. Perhaps you could bring forward the appointment with the new doctor. Your needs are as important as Jim's needs, if not more. How I wish I could help.

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    1. Hi Valerie. Thinks always look darkest before the dawn, as they say. Jim recognizes me this morning, Still a little fuzzy "Weren't there two other people here last night?". But at least recognizes me as who I am, and not nearly as anxious as last night.

      Kind and thoughtful comments from you, and from other readers mean so much to me. So while it feels like you can't help, you are! This blog is my sounding board, and I always feel like others listen and care :-)

      Thanks for your comment Valerie.

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  3. Strange, but I've just woke from spending the night on our couch. The night before I slept half the night on the couch. My situation is that I don't know what is going on with my husband except he has confusion and it makes him angry. At night, he twitches and jerks in his sleep, making it difficult for me to sleep. Hoping his situation isn't really dementia caused by his diabetes. I wish I could get a handle on this...

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    1. Hi Tehachap. So sorry to hear of this. You know first hand how disturbing all of this can be. One thought I had, sometimes folks with diabetes develop Restless Leg Syndrome, which causes jerking and twitching, especially at night. It might be something to ask the doctor about.

      The confusion is heartbreaking, and you are right, it adds to the frustration and anger for him. Hang in there, and know that you are not alone.

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  4. I can so identify with you. My heart breaks for you.

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    1. Thanks so much for your kind words; so appreciated.

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  5. Oh, Carole - beside you all the way! Glad things were somewhat better this morning - but what a drain when neither of you is sleeping well. Thinking of you often. Hang in there!

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    1. Oh, thanks Jan! I so appreciate your support. It means a lot to me!

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  6. What you are dealing with has to be exhausting when you get enough sleep, I can't imagine how hard it must be sleep deprived. I sure wish you didn't have to wait the 10 days and only hope the doctor will be able to prescribe some relief for you both. So glad that you at least have moments when he knows who you are. Sending hugs and wishes for some ease your way.

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    1. Thanks Patti. And hugs sent right back! Today was a much better day. I'm learning that it is the nature of dementia that there will be good days and not so good days. This morning I don't believe he had any recollection of the events of last night. He is very tired today, and I think we will both sleep well tonight.

      I spoke with a dear friend on the phone earlier today, and it felt good to plan for a tentative get together for a walk in a local park for sometime next month. Can't get too far ahead of myself, but I am hopeful that things will be easier once his anxiety is under control.

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  7. I read what is happening with you and Jim and my heart breaks for you, too. Somehow through your posts you have become a person whose well-being is very important to me. I am glad that he's better today. And I hope you will get some sleep tonight! Sending you lots of virtual hugs.

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    1. Hi DJan. Yes, I slept well last night and feel very rested today. I appreciate your kind words. Sending you hugs right back :-)

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  8. Oh Carole.... I'm so sorry. This is utterly painful. I'm sending you a hug from Hawaii.

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    1. Hi Kay. Thanks for your hug. The kind words of readers helps me to feel less alone.

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  9. I hope by sharing your experiences the burdens become a little lighter. They certainly enlighten us ... and prepare us if we ever find ourselves in your shoes.

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    1. Hi Tom. Sometimes my need to post results from some upsetting event, such as above. After pouring my heart out, I do feel better. Somehow it helps to know that someone is "listening" and folks care. Thanks for your comment.

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  10. This is so sad that he does not realize you are his wife.

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    1. Hi Gigi. So far, whenever he has forgotten who I am, he has recovery of this memory by the next day. You are right, it is very sad at the moment it is happening.

      This morning he was certain that we both had to get going and go to work! When I told him we were both retired, he was happy about it, but had a hard time believing it.

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  11. All I can say is wow, you have a lot to deal with. And Jim seems so young to have Dementia. It is so sad to read this. I hope at some point you can get a caregiver to help with your day. I will keep reading your blog as it is certainly eye opening. You are a strong woman.

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    1. Hi Christina. Yes, Jim is too young to have dementia. Every day it helps me to keep my perspective, and reminds me to not feel sorry for myself, when I realize that I am not the one with the dying brain, it is Jim.

      Right now the issue is Jim's acceptance of people in his life, other than me. Doctor's appointment tomorrow, so Im'm hoping for some help/guidance. Thanks for your comment Christina.

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