Saturday, April 8, 2017

Dementia Challenges; Rising to the Occasion

Well, it has been interesting since returning home from Florida. I realize now that I never should have traveled to FL. It definitely was a judgement mistake on my part. I'm certain that my judgement was clouded by the dreaded winters in upstate NY. And sure enough, it was a typical, brutal winter. But in retrospect it was not worth it. We are done with travel, and I am OK with it.

Jim's dementia continues to decline. It is such a sad thing to see. Lately, his memory struggles quite frequently with how he knows me:

"How long have you been here?"

"Are you sure we are married?"

I go through the details, showing the marriage license and our photo on the piano. He accepts that this is the reality for that moment, until he forgets again.

He also asks a lot about our last dog:

"Where is our dog?"

"Why isn't our dog here?"

It is heartbreaking to have to keep breaking the news to him that our beloved Jack is gone. 

Dementia is a cruel disease. No concern for the person afflicted, or for those who love them.

Some encouraging news about driving and Jim's car. As I mentioned before, he was certain that the black Accord (his car) belonged to Mike, our friend who kept an eye on our house while we were in FL. After realizing that his perception was not going to change, I decided to go with it. The Accord is at Mike's house. We are now a one car family. This is a huge relief! It essentially solves the driving concern, at least for the most part. 

Yesterday we were headed to the mall and he said that he would like to drive. I responded "How about if I drive there, and you can drive home?". He accepted this, and as I thought, he completely forgot about this and I drove going home. 

If things go as I expect, at the end of the month I'll sign the car over to Mike. It is such a relief to be down to just one car. I've notified those who need to know to not ask Jim about his Accord. 

Jim's anxiety is very much present every day. I have some of the anti-anxiety pills left, but I am hoarding them for when he needs them the most. I just need to make it until we see the gerontologist at the end of this month. If we have nothing planned (no visitors, no appointments etc) I can usually manage his anxiety without the pills. But any variance to this, and help is needed. His anxiety when I am driving is almost unbearable for me. Without an anxiety pill:

"You almost killed 3 people!"

"You were going 100 MPH!"

"You could have killed us!"

It's all so real to him. In his mind, all of this is true. I can't imagine how hard it must be to be inside his extremely anxious brain. 

Getting ready for the day is extremely difficult for him. I try to anticipate his needs as much as possible, but I'm not always successful. I believe he is heading toward the moderately severe stage of dementia. Every morning, it seems he needs more and more help with getting ready. Yesterday he shaved twice (morning and evening) but never brushed his teeth. He had no idea what he needed to do next to get dressed after his shower. 

He gets very upset if I cannot figure out what he is trying to tell me. "Don't give me that! You know what I mean!" I  almost have to be a mind reader. Sometimes I can figure out by the context of the situation. 

I did a trial run with Mike spending time with Jim last Wednesday. I was able to get my hair done (I was desperate!), got my car washed, and stopped at the store for some groceries. I was gone for about 3 hours. Jim did OK, but not great. And this was after giving him xanax before I left. Mike told me that he was getting pretty antsy, wanting me to get home. Having that short period of time to myself was heaven. It felt so good. 

Once Jim gets some help from Dr. S. for his anxiety, I anticipate that I'll have better flexibility for some time to myself. Priorities include support group, seeing my mom, and my own Dr. appointments. 

I have to admit that the times when Jim falls asleep for a nap during the day it feels glorious! He is asleep right now, which gives me the freedom to write this post. I would describe my days as being in a state of hyper-attentiveness. I must always be ready to be there for him. 

Communication skills continue to challenge both of us. Yesterday morning:

"Where is my watch?!?" (Obviously in a lot of distress)

I knew that he hadn't worn a watch in over 15 years.

Long story short, he finally found a white t-shirt, picked it up saying "There's my watch!"

I am learning that when I speak to Jim, it is very important to speak slowly, with frequent pauses. This gives him a better chance at processing what I am saying. Also, it is important to give minimum information, keeping it all very concise and simple. I'm getting pretty good at doing this. I've learned so much on this dementia journey!

The challenge now is to find activities that keep him contented. If we attempt to go someplace, even if just to the grocery store, the anxiety rises to a high level, making it so difficult for him. If we stay home all day, he is "bored to death". I'm holding out a lot of hope for help from Dr. S. for Jim's anxiety. 

One of my favorite blogs by Dr. Elaine Eshbaugh inspired me. She wrote about the brain working very hard to interpret surroundings when you have dementia. This process is exhausting. This makes it difficult for the person with dementia to control their impulses and emotions. Elaine points out that while we as caregivers may say we are having a hard time when this occurs, the person with dementia is really having a hard time. I've learned so much from her.

Dementia challenges; I choose to rise to the occasion. This journey could be characterized as a sad, lonely and long one. But as Jim and I go forward, I'm appreciating the joy that we can still find in life. And I am ever so grateful for all the support I am receiving along the way.

Well, another post is written. Thanks for stopping by. I appreciate each and every one of my readers.








22 comments:

  1. I'm happy to hear the car thing with Mike is sorted out. Out of sight out of mind seems to be the best answer. I'm sure getting out on your own for the first time in ages was freeing, but maybe 3 hours was more than he could handle. Jim seems to rolling downhill faster than a person would expect. I suppose everyone has their own schedule ...

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    1. Hi SJ. It is indeed a huge relief about the car. I was afraid he would insist on buying a new car for himself. I think you are right, that the time frame for dementia progression is unique to each person. I agree it seems to be faster than I would expect, especially when I compare to where he was a year ago. Thanks for your comment SJ.

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  2. It is reassuring to learn that you have been able to have some 'Me' time and I know you will appreciate the support group when you get there. I think you are a very brave lady but also an understanding one.

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    1. Oh Valerie, you have such kind words. I don't always get it right, but I'll take the credit for the effort. I try so hard to understand him, and at times my best efforts just don't pull it off.

      Yes, I love the prospect of "me" time! I'll be patient until the appointment with the gerontologist, before I plan too much more. My next time alone is next Wednesday, but this time I'll be away for only 2 hours to see if Jim tolerates it better.

      Thanks for stopping by Valerie.

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  3. Thank you for being kind enough to share such a difficult time in your life. Many of us will follow you. You are a pathfinder for us.

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    1. Hi Mary. I know that I have learned a lot from others over the course of Jim's dementia. I'm so glad that we have this community of caring people who can support and learn from each other.

      Thanks for stopping by Mary.

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  4. I sure wish you didn't have to wait so long for this doctor visit. It seems like he needs anti-anxiety medication all the time now, and the end of the month is so far away! I worry for you, and him. Your writing is so clear and poignant that I feel as though I am there with you. Sending you lots of love, Carole.

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    1. Hi DJan. Thanks for your thoughtful comment. I'm pinning a lot of hope on this visit. Whatever Dr. S. prescribes, I'm confident that she will provide medication to help us over the hump, as we wait for any new medication to kick in. Sending you sunshine and love right back :-)

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  5. Carole, I don't think your judgment was off, but rather the the novelty of the move to FL revealed the extent of the changes in Jim's cognitive processes. Had you stayed home, it might have taken longer to "see". Regarding Mike staying with Jim, they will both get more relaxed I bet. You might be able to have Mike text you at some point during the stay, and let you know how it's going. If things are fine, you could stay the full three hours. Just an idea.
    Take good care!

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    1. Thanks for a different perspective on FL Jan. I hadn't thought of it that way, but it makes sense.

      And I like the idea of Mike texting me with an update, giving me some reassurance, or a heads up that I should come home. I'm hoping too that as the weather warms up, the two of them will have some outdoor stuff, projects that would be a good distraction for Jim.

      Thanks as always for your comment!

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  6. I share your posts with my husband, as dementia is a real threat to us due to his diabetes. After reading a bit of today's post to him, he confessed that this was the reason he wanted to travel more in the next year to two years. I think he realizes that his mental abilities might be at risk and we should take your situation as a warning that where you are, so could we be in the coming years. I see memory problems in his actions even now. Hang in there--for myself, I would call the dr. and see if there's a way to get an earlier appointment -- perhaps if someone cancels, you can get in sooner. Just a thought. Know that we are all here for you, watching and learning, and empathizing with you.

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    1. Hi Tehachap. I remember you saying that your husband was at risk, due to his diabetes. The idea of traveling now, rather than waiting I think is a good one. With cognitive decline, the most we can hope for is some stability, but certainly no improvement or cure (except in those rare cases where the decline is from some reversible cause).

      Thanks for your words of encouragement. I'm on a cancellation list, but I doubt we'll be seen any sooner. Her "new patient" appointments are lengthy, and she schedules only one of these a day.

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  7. Like the others I hope the gerontologist can see you sooner rather than later. I am so glad you got in some "me" time and had Mike to spell you. What a blessing. The razor's edge you walk has to be exhausting. Don't hesitate to lean on those who can help.

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    1. Hi Patti. Yes, I so appreciate Mike. I think he was surprised how challenging it was. He is not used to seeing Jim with so much anxiety. But, come next month, hopefully the anxiety will be subsiding and both Jim and Mike can relax and enjoy each others' company. Thanks for your comment Patti.

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  8. Carole, I'm glad to hear that you are both back home safely. The journey is a sad, lonely and long one, as you say. You are so wonderful with Jim, and
    I can only imagine how hard it must be. It is good to have a friend like Mike to provide some support and respite. Have you begun to research possible resources for care in case the time comes that you can no longer manage on a daily basis on your own?

    Jude

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    1. Hi Jude. I do have some preliminary thoughts about resources for Jim's care down the road. The tough part will be to see how accepting he is of others staying with and caring for him.

      This journey has been full of surprises. The unexpected seems to happen frequently with dementia, making it difficult for planning purposes. But, I am a planner by nature, so I will plan, but also will have a plan B, C and maybe D.

      Thanks for your thoughtful comment Jude.

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  9. Can sure see how the communication becomes more challenging as he does not always use the naming word he wants -- saying "watch" when what he apparently meant was "shirt". In his mind, he said the correct word. I expect you'll encounter more of those instances where the words produced -- especially meaningful words may not be what he really thinks he's saying -- could even be opposite causing you to do the wrong thing in his mind which would likely anger him. Hopefully his simple Yes/No responses are still accurate and not mixed up. This is surely a most frustrating situation for a caregiver to address, but you clearly understand the complication and continue to handle it well presently.

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    1. Hi Joared. Well, I am sorry to say that he definitely mixes up yes and no. This is very challenging. I have to tune in very carefully to his inflection, mood, and body language to figure out what he means. He frequently mixes up hot and cold as well, which makes temperature regulation pretty difficult.

      He does get upset with me when I don't get it right the first time. But I understand that, because in his brain, he is experiencing anxiety from the frustration of trying to communicate.

      Thanks for your comment Joared.

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  10. Thank you again for the information you are sharing about dementia. It is helping me in understanding my father-in-law's new situation. My mother-in-law was recently admitted to a nursing home/rehab facility for a broken foot. We quickly learned how much they had been taking care of each other and now know that they will both probably need to go to assisted living when she is done with rehab. He has an appointment with his primary care physician next week for a "memory evaluation". My husband and I are 5 hours away but try to help as much as possible. Your words and examples of patience and caring are helping me tremendously. It is sad to see how quickly my father-in-law is progressing but he has experienced a huge change in his world these past 3 weeks. Best of luck to you and Jim as you move forward.

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    1. Hi Sue. What a difficult time this must be for you and your family. Being 5 hours away, I am sure makes it more stressful for you and your husband. Sometimes a caregiver's injury or illness brings to light the reality of the situation.

      It's such a cruel disease. With no hope for a cure, we know that we just have to do the best we can. By sharing with each other, it helps to know we are not alone. Hang in there Sue, and please let us know how things go for you and your family. Thanks so much for your comment.

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  11. One of my aunts has dementia. She lives in a retirement facility and because she has no husband or children, I always include her in my family parties and I always find someone to bring her and take her home.

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    1. It's so thoughtful for you to include your aunt. I'm sure she appreciates your kindness Gigi. Socialization is so important, even for those with dementia.

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