Friday, February 24, 2017

Side By Side With Dementia

My learning curve experienced a few bumps this past week. I've written before about Jim's difficulty when going out to eat at a restaurant. After last week's stressful dinner and evening with friends, I vowed to keep dining out low key, quiet, and very casual. A couple days ago I suggested a local Mexican restaurant for an early lunch (beat the crowd). It was off the beaten path and seemed like it would do the trick. We arrived and discovered the menu was on a menu board, hanging high on the wall.

Jim: "You don't expect me to be able to read that, do you???!!!"

Me: "No, that does seem hard to read. Let's just leave and find somewhere else to eat."

While Jim can still read, the ability to process what he is reading is pretty impaired. I have noticed that when looking at menus he is very overwhelmed. My strategy has been to look at the menu online prior to going to the restaurant, and then "helping" him find something that he would enjoy. The hanging menu at the Mexican restaurant was just too much for him.

Fortunately I quickly came up with a Plan B.

"Let's stop and get a pepperoni pizza." He loved the idea. We didn't even have to look at a menu. While in the restaurant we asked to be moved 3 times, due to Jim not being able to tolerate where we were seated. (People too loud, light is too bright.)

Pizza was delicious!

Jim became obsessed with what he perceived to be a mechanical problem in the condo. It is way too complicated and convoluted for me to explain, and actually the details are not important at this point. But his obsession and insistence in me calling the owner of the condo resulted in a lot of stress for both of us. The end result, after 3 days of turmoil, resulted in a very angry condo owner, and a bill for an unnecessary visit by a repair person. Of course I picked up the cost for this, but nevertheless the condo owner was angry at being bothered by this mess.

The condo owner is not aware of Jim's dementia. With Jim hovering, there has not been an opportunity to convey this information. I took some pretty serious heat from the owner about this whole fiasco. I don't know why I let stuff like this bother me so much. In the end, it doesn't really matter. But I managed to become quite stressed over this whole issue.

My dreams at night are often a source of peace for me. Lately, I am alone in my dream. Things are quiet and peaceful, I am outside walking, running, enjoying nature. I'm grateful for this escape.

Just prior to leaving for FL, I had a cortisone injection in my knee. I have some significant arthritis in the one knee, secondary to an old injury 25 years ago when I broke my leg. The cortisone was like magic! I could walk, go up and down stairs with no pain. It is starting to wear off, so when we get back home I'll schedule another one. I've been told that eventually I will need a knee replacement. I'm hoping to put this off as long as possible. I've read that caregivers often have their own health issues that worsen, or get pushed to the side. I can see how this could happen.

A couple days ago, Mr. Dementia had a bad reaction to a perceived hand movement by me. I was walking into the kitchen; I had a glass in one hand and my phone in the other hand. He reached for my glass, and I pulled my hand back saying "thanks, but it's ok, I've got it". His response: "Why do talk to me that way? You're treating me like I am 12 years old!" He was pretty angry, and it was hard to get him distracted in a different direction. Of course I apologized, hoping it would calm him down. I always tell him that I would never intentionally hurt him or treat him in any way other than respectful. Didn't work.

So, when all else fails, turn on the comedy channel! I've written about "The Carbonaro Effect". There are other shows too that Jim really likes on this channel. He likes one called "Impractical Jokers" (not my cup of tea). It worked! He got caught up in the show, it changed his mood, and his angry feelings toward me were soon forgotten.

His ability to operate the TV and his computer are intermittent. I often see him clicking on his mouse, trying to change the channel on the TV. He would not use his computer if I didn't encourage and help him. Email is something he no longer understands. When I look at his email account, I can see where his sending of emails dropped off significantly in early 2016, with the last one being sometime last summer. He and his friends loved sending jokes back and forth. He really exhibits almost no interest when I show him his emails from friends.

Dementia is tough, not just on the person and the caregiver, but tough on friends and families too. I try to be sensitive to this, although I'm not sure I always succeed.  I'm certain that friends and family are very sad about the situation, but they must feel even more powerless than I do! There is a balance between sharing versus overwhelming friends and family with what is going on; I'm working on that balance.

Fortunately there are support groups for families effected by dementia. I'm looking forward to connecting as soon as we get back home. Support groups are in a better position to help process and handle the multitude of emotions caregivers experience.

Fatigue is ever present. A walk around the grocery store is so tiring for him. Jim used to sleep an average of 6 1/2 hours at night. I never understood how he could get by on such little sleep. These days, he is ready for bed by 9:00! Over the last year his need for sleep has been increasing steadily. He is always tired. Other than the dementia, there is no clinical explanation (thyroid levels normal etc). I've read that it is common for those with dementia to be more fatigued.

I looked at an old post where I was bemoaning the fact that an easy 2 mile walk around a local lake turned into a slow shuffle, with Jim exhausted at the end. I wouldn't dream of attempting anything like that today. Mr. Dementia leads a very sedentary life.

Jim is needing some help these days with personal care. Nothing dramatic, but it is a change for him. The other day he forgot to shave. Yesterday he forgot to shower. I casually asked him if he had showered yet (I knew he hadn't). He assured me he had. He would be mortified to think that he did not shower. His attention to detail in his personal care has always been so precise. My strategy is to put out a shower towel for him, as a reminder, and try to pay more attention as he is getting ready in the morning.

I'm looking forward to going home. It's been wonderful to escape the bitter cold and snow, but being so far away, side by side with Mr. Dementia has been more difficult than I imagined.

Thanks for stopping by, and thanks for listening. As always, it helps me tremendously to be able to put into words what is in my heart and what is on my mind.



26 comments:

  1. You have probably already found this out, but I have learned that dementia patients often have trouble late in the day and early evening. It's called sun-downer's syndrome. There is little known as to why it happens, but it does. I understand it because, although I don't think there is any dementia in me, I do get tired and sad in the evenings. I too go to bed early because I'm tired, especially after a busy day. We all have our different ways of coping.

    It must be hard on you to see these changes and feel inadequate in doing anything to help or alleviate the situation.

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    1. Hi dkzody. Yes, the sun-down syndrome is very real. There is a speculation as to why it happens during the evening, but I think you are right when you say that we are more tired at the end of the day, and therefore have more difficulty processing things. I've also read that when it is dark out, there is less sensory information, and that this can increase confusion.

      Yes, many times I feel inadequate when these challenging situations occur, but I am trying harder to be kind to myself, give myself some slack knowing that this is an impossible situation.

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  2. I know that just by writing about what you are going through with your husband is comforting but I strongly urge you to attend a good support group or groups. It was so helpful for my sister and myself in coping with my father's dementia. We learned so much and so many different ideas how to handle certain situations. For example, they suggested we remove or cover mirrors as they do not recognize the person they are seeing. And make sure you take time for yourself. Hard as it may be at times, you need to have some "alone" time.

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    1. Hi, thanks for your thoughtful comments. It sounds like you have first hand experience in dealing with this dreadful disease. We are away for another 4 weeks, but as soon as we get back home I've arranged for some help. Jim can't be left alone, so with someone to stay with him this will allow me to go to a support group and also give me some time for myself.

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    1. Oh, thanks Gigi. I feel lucky too, to have had this wonderful man in my life for all these years. As hard as this journey is, I helps me when I remember that it is even harder for Jim.

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  4. Jim's capabilities have really changed a lot in the time that I have been following your blog (about half a year). Each week, he is losing basic functional skills, and you are being faced with difficult new challenges. Your writing not only provides an outlet for you, but also is wonderfully helpful to others coping with supporting a loved one with dementia. Thank-you for writing, Carole. Sending hugs your way...

    Jude

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    1. Thanks for your kind words and hugs Jude. Yes, the rate of decline scares me sometimes. But I know I can't get too far ahead of myself. If my blog in any way helps or supports those who know/care for someone with dementia, I will be very grateful.

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  5. I know my mother had a difficult time dealing with my father's dementia. He was often paranoid and believed someone was always trying to steal parts from their car. My husband also tried to help our neighbor in Illinois until it got too difficult and had to contact her relatives. I agree that it would be great if you could find some sort of support group where you live. My heart goes out to you. You're doing such a great job.

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    1. Thanks Kay for your kind, encouraging words. There is a stereotype of dementia; it is portrayed as a sweet, kind, passive individual who is pleasantly confused. This is rarely the case, unfortunately. It sounds like your family has had its share of experience with dementia. Such a terrible disease with a huge impact on so many people.

      I'm looking forward to a support group. It will feel good to commiserate with others in similar circumstances.

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  6. You are constantly on a narrow ledge aren't you with the obstacles ever changing?? You handle it all so amazingly. I am so glad you will get into a support group when you get home. I think just being able to relax around others who totally understand would be a relief for you.

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    1. A narrow ledge! That is exactly how it feels sometimes. I've been encouraged by your experience with a support group. I really can't wait. I anticipate it will be a two-way positive experience, with being able to share and to receive tips, ideas, information from a group of folks unique to this situation. Thanks for your kind words Patti.

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  7. I agree with your other readers that a support group is getting to be a necessity. I know you want to do everything for your husband, and rightly so, but you need some support yourself. You are a very brave and loving lady.

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    1. Thanks Valerie. This journey is going to be a long one, and I know that I must get some support and help for myself, so that I can be there for Jim. Support groups seem to be the bedrock of self help, no matter what the issue. People bonded by similar challenges, coming together for mutual support. What a great concept!

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  8. I look forward to your posts for several reasons, one being that you are a gifted writer who managed to make me feel compassion for both of you. I wondered how much longer it would be before you go back home, but you told one of your commenters that it would be another four weeks. That's a long time in a quickly changing situation. I hope you will continue to write here and keep me up to date with what's going on with you. And I send you my sincere best wishes for the month to pass without too much added stress.

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    1. Thanks DJan for your kind words. This last week I have been very tempted to just head home. It's complicated though by several factors, including the availability of our friend to drive our car back home for us. Dementia is so unpredictable, such a cruel disease. It helps me to remain strong for Jim when I remind myself that he is the one suffering such a tragic loss. As hard as it is for me sometimes, at least I still am still me, and have not loss the essence of who I am.

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  9. So good to see your post in my inbox. Thanks so very much for sharing your life here. As another follower posted, I hope these next four weeks pass uneventfully, and you get resettled in your other home without too much difficulty. I'll keep you and Jim in my prayers.

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    1. Hi Tehachap. Thanks for your good wishes. The nature of Jim's dementia is quite variable. I've often tried to predict/prevent upsets. But this darn disease is so unpredictable. Last evening he was content to just watch TV. No upsets, and it seemed good to have it so peaceful. I was grateful for the time to catch up on some reading.

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    2. Thanks to your blog, I was able to broach the subject of dementia with my husband. I asked him if he felt any different mentally since his surgery or even from how he was doing a couple of years ago. He said he had noticed some things, but didn't know what was causing it. I told him that dementia was one of the side effects of Diabetes, and that the kids and I had noticed some of his behavior was similar to that of someone who had the beginnings of Dementia. Thankfully, we were able to have a calm and friendly discussion about it. I told him that whatever happened, I would be here for him, and would help him. I know that I'm not alone here and this feels like the beginning of a long and difficult road. As you say, it's one of life's little surprises. We were able to discuss things like maintenance on the house, etc. that I know we possibly wouldn't be able to talk about in the future. And I discussed the possibility that should things reach a point where I wasn't able to keep up the house and care for him too, that we would be forced to sell our house and move back to a 55+ community that is closer to the younger son and his wife. (his wife has an aunt in this park and we've checked it out so know we would probably enjoy living there). One day at a time ... it feels like a new mantra for our lives.

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    3. Oh my goodness Tehachap. I feel for you and your husband and what you are going through. In spite of the sadness regarding his decline, it is great that he is aware of the changes he is experiencing and is able/willing to have a conversation about it. (Jim has never acknowledged any problems. His physician has said that it is part of his brain damage that he is not aware.)

      The ability to involve your husband in the planning for your future invaluable. Be sure to mention to his physician these changes. He may be able to tweak control of his diabetes and any other factors (hypertension, cholesterol) that may be contributing to his decline. While there is no cure for dementia, there may be some slowing of the disease progression, depending on the cause.

      One of the best things I liked about your comment is that you reassured him that no matter what, you would be there for him. He is lucky to have you! It's a reminder that our wedding vows (in sickness and in health) take on a whole new meaning at this stage in our lives.

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  10. Wonder if you were ever able to explain the dementia situation to the condo owner, even if after the fact, or maybe you've decided not to bother. Your feelings make perfect sense in a situation where you couldn't explain the circumstances. I'm sure it must be frustrating needing to protect your husband's privacy, but knowing that if others only knew they probably would be more tolerant -- meanwhile you're caught in the middle. Finding out how others cope with that same type situation -- which must occur fairly often for all caregivers like you. Hope the rest of your stay there goes well.

    I often think of a now-deceased friend, an only child, whose mother, in her final years, thought of her SIL as her husband and her dtr was an "other woman" for whom the mother, obviously, felt great contempt to say the least. It was heartbreaking.

    So, I know some similar brief recognition challenges you encounter that you've mentioned in the past may feel overwhelming at times. Then the situation you describe in his post adds to it all. You manage remarkably well, but for your own well-being I'm glad to read you'll be in a support group when you return home.

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    1. Hi Joared. The owner actually owns the condo next door, as well as the one in which we are staying. He plans to come down in a couple of weeks, so we will see him in person at that point. I'll create an excuse to speak with him briefly, privately and explain about Jim's dementia.

      I no longer hesitate like I did in the past about sharing that Jim has dementia. (Privately of course.) The dementia has progressed to the point where in casual conversation it is obvious to observers that something is wrong.

      Thanks for sharing about your (deceased) friend. A couple weeks ago Jim said to me "Carole is going to take care of that". I don't know who he thought I was, but the moment passed quickly and hasn't happened since then. A glimpse, perhaps, into our future.

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  11. Was Jim aware that things were going downhill at first? Did you and he have discussions about it? It seems to me there are many different types of memory loss that eventually lead to complete mental wipe out. When my mother started going downhill, it was so gradual a person couldn't put a finger on day one. My MIL came to it faster, of course, she had Huntington's, the most she did was throw a shoe. She was like our neighbor, a brilliant engineer one year and urinating in the neighbor's yard the next. He didn't have Huntington's though. So many different symptoms and reactions. My husband's uncle became a raving lunatic within 4-5 years and was very violent, he had Huntington's also - it's a familial thing, a sister had it too, but cancer got to her before the Huntington's took over.
    The reason I ask about Jim, is that you probably are aware that I have my moments/lapses. They are more frequent and though I'm not ready for a 'room' I am starting to need a keeper of some sort. Reading is beginning to not make sense and I can't retain what I read, most times. The last book I read was in August and it was so frustrating. Why can I remember it was August, you ask. My son sent me almost a dozen new books because I had been such an avid reader. I can't seem to write anymore and new thoughts for a story flit off as quick as I form them and think, "Yes, that sounds good." Then it's gone. My doctor claims it's because of my atherosclerosis, not dementia, but it continues to get worse. I have discussed this with my family, they see it too, but choose to pat my little gray head ...
    So ... Did you and Jim have these discussions? For how long? What is his prognosis?
    Thank spell-check for your ability to read this, haha!

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    1. Hi SJ. Early in the disease I attempted several conversations with Jim. He did not acknowledge that anything was wrong, and in fact would become quite angry. His physician says that this is "organic", meaning that the part of his brain that allows a self-awareness of one's deficits is damaged. I've stopped having these conversations with him because they are not productive, they only cause him to become angry.

      Dementia is progressive, unfortunately, except in those cases where the dementia is caused by something reversible, such as hypothyroid, vitamin B12 deficiency etc.

      I'm sorry to hear about your memory lapses and difficulty reading. When I read your blog, I'm so impressed with your writing skills! Be sure to keep your doctor updated by any changes that you notice.

      Keep writing! I'm guessing you have a good following. Your blog is interesting and enjoyable to read. Hang in there. It's good that you are keeping in touch with all your blogosphere friends; we all care :-)

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  12. Hi Carole

    Thanks for coming by and your support is greatly appreciated.
    My mum is beginning to forget that she had taken her shower. 2 nights ago she showered twice. What's worrying is the constant showers are drying up her skin and instead of applying moisturizers she dumps powder all over her body. I have to be ultra watchful now. I am reading the above comment perhaps I should be taking my vitamin 12 too.. think I am starting to lose it too. :(

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    1. Hi Swift. Yes, it is challenging as the dementia progresses. I have often used the phrase "I'm on high alert" to describe the level of attention. But it seems like "high alert" gets a little higher, as I see new challenges with each passing day/week.

      As you probably know, caregivers are at risk of neglecting their own health. It's so important that we take care of ourselves as well. Be sure to talk to your doctor about your own concerns. Some routine screening/blood work can help to evaluate your health status. Take care Swift, and be sure to seek out whatever supports you can for you and your mum.

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