Thursday, June 1, 2017

"As Long As It Is Not Number 2"

It's been a while since I posted. It is a bit of a challenge to find "alone" time that gives me the privacy to write.  When Jim naps, I use the time to do things around the house or make phone calls that are easier to do without Jim being so very present.

I continue to be so grateful for the improvement he has shown on the citalopram.  I really don't think that I could ask for a better response. As long as we are home and things are low stress, he seldom becomes anxious. I continue to be careful with out of the house activities, keeping them short, familiar and low key.

My hairdresser offered to come to our home to do my hair. I was a little nervous, not knowing how Jim would respond. But I figured it had to be better than taking him to her shop, which is about a 30 minute drive each way. Add the time spent in her shop, and it just spells disaster. Her visit went great! She is a natural when it comes to interacting. Jim responded so well to her. She offered to cut his hair while she was here and he agreed! So no more worries for me about having to leave the house for hair appointments. I'm so very grateful for her kindness and willingness to travel this distance.

Jim's confusion continues, and I believe is worsening. I'm not surprised by this, as this is how Alzheimer's progresses. He has the hardest time first thing in the morning and late afternoon into evening hours.

This morning was particularly difficult for him. He woke me up about 6:15. He looked worried and said "I don't know anything. I don't know what to do, or where to go. I don't know anything I am looking at."

This was absolutely heartbreaking. He wasn't agitated, just incredibly sad and worried. Fortunately he remembered me. I suggested having some coffee, watching the morning news, to see if that would help. At one point he said "I don't think I have any opioids in my system."

It was his way of trying to figure out why he was so confused. The only thing he could think of was that perhaps he had had some pain medication. Side note: Jim has never had any prescription pain medication with the exception several years ago, following hernia surgery. He did not tolerate them at all and had to switch to tylenol.

It was so hard to watch him in distress. I encouraged him to get ready for the day, shave, shower etc. A few hours later he noted that things were looking familiar to him. What a relief. I cannot even imagine what it would be like to wake up, not know where you are, not recognize your house, and wonder how you got there. Sounds terrifying to me.

I'm learning a lot about house maintenance, yard work and gardening. Most people will not relate to this, but I have to admit I hate gardening! I love being outside, but the pulling of weeds, edging, etc is not enjoyable at all to me. I purchased a battery operated edger and weed trimmer. This eliminates having to deal with gasoline. These things always remind me of what a beautiful job Jim did in keeping up with our landscaping.

Communication challenges continue.

Jim: "Where is the kitchen?' (We are standing in the kitchen as he asks this.)

Me; "Dinner is almost ready; about 15 more minutes."

Jim: "Oh, good."

Whew! Got that one right. I don't always get it right.

Jim: (Pointing to the light switch in the bathroom) "It might surprise the number 5."

Me: "Well, as long as it's not number 2."

We both laughed so hard! I hope no one is offended by the bathroom humor. But sometimes you just have to lighten things up. Got to keep your sense of humor. 𝩀😊

He also incorporates what he sees in the environment/on TV with what he is trying to say.

Jim: (While watching commentators discussing Trump pulling out of Paris Accord) "Where is the Paris Accord shirt?"

Me: Let's go look in your closet to see what we can find.

And so it goes. More confusion, more decline, BUT anxiety is so much better. So grateful for this. When I think about how things were 2 months ago, I remember thinking that I was certainly doing harm to my body and my mind, given how I was reacting to this high level of stress. Fast forward to today, and I am not nearly as stressed as I was before.

I know that things are only going to get harder, but with my stress level better controlled, I should be up to the challenges that Jim and I will face.

Thanks dear readers for stopping by. As always, my heart feels lighter!


18 comments:

  1. That was good of the hairdresser to come to your home. It must have made you feel good in many ways. What you need now is a gardener.

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    1. Hi Valerie. I do have someone that mows are lawn. But as you can imagine, it is more of a challenge to find someone to do the tedious weeding.

      I shouldn't complain. A lot of them are tiny tree seedlings from our hardwoods coming up in our beds. Once it is done, that should be it for the rest of the season.

      I'm so grateful to my hairdresser! She's a gem.

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  2. I'm so glad to hear that the medication for anxiety is working so well. You know you have a whole galaxy of people in the blogging universe who are concerned and are learning along with you about how to deal with this problem. Sending you virtual hugs, as always.

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    1. Hi DJan. Thanks so much for your thoughtful comment. The improvement in Jim's anxiety is such a huge relief for me. I actually had to consciously look back to a couple of months ago, to fully appreciate the improvement. Sending hugs right back :-)

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  3. Wow, that hairdresser is a blessing. Not only doing your hair but making it easy for Jim not having to deal with a barber situation. How wonderful that he new meds are helping. Smart of you to take advantage during his sleep time. Hope you schedule a little me or just rest time during those occasions also.

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    1. Hi Patti. My hairdresser Lisa is a real lifesaver! I've been going to her for over 30 years. I'm so lucky to have her!

      One thing that I really appreciate is that I am still sleeping very well at night. I sleep through the night and wake up rested. I know that this will likely change as the dementia progresses, but for now, I feel rested.

      Thanks for your comment Patti

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  4. I'm with DJan (a wise woman indeed). We are pulling for you, even if we can't actually be there to help.

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    1. Hi Marti. Thanks for your kind words. I feel such an incredible connection and so much support for all my blogosphere friends.

      I remember when I first started this blog, I wasn't sure how it would go. Would I continue to want to write? Would anyone actually read it? Little did I know how therapeutic the writing would be for me, and how much wonderful support I would receive from so many kind readers.

      Thanks for your comment Marty.

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  5. Thank you for being here. I thought about you as my husband and I traveled these past couple of weeks. He's finally accepting my concern about his cognition decline and sees that it's in the afternoon that he becomes mentally confused and unable to process verbal information. We suspect it may be a low blood sugar situation. We'll be attending a diabetes workshop each Wednesday for the next four weeks and are hoping that it will give us some information on how to deal with this progressive disease. Meanwhile, I'm glad you're not as stressed these days and happy that the medication is working for Jim. Nice to have such a good response on the first medication you've tried for his anxiety. Do take care and keep posting... I learn from you... truly!

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    1. Hi Tehachap. I'm so glad that your husband is open to talking about these issues. Jim has never acknowledged any deficits, and in the past when I would mention my concerns, it would only anger him, and he would insist there was nothing wrong.

      Diabetes is a tough disease! Every diabetic is different, and as you know it requires a lot of monitoring and adjusting medication as needed. The diabetes workshop should be a good resource for you. Be sure to write down your questions to take with you; it will be a great opportunity to pick the brains of folks with a lot of knowledge.

      Thanks so much for your comment Tehachap.

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  6. I had to chuckle with your numbers humor. I'm a strong believer in the value of incorporating laughter into some difficult situations which can lessen the stress. In fact, often some of the individuals with whom I worked that were most successful adapting to their physical and speech/language/memory challenges were those who became comfortable enough with the idea a mistake wasn't the end of the world and could laugh when they erred. They became more relaxed and less likely to make more errors much of the time -- certainly made it easier for their sensitive caregivers when they could laugh together as you described so well. Perfection isn't the goal since none of us are perfect. Perfection isn't the goal since none of us are perfect. Reminds me of some issues my young son encountered years ago and I gave him a shirt which said "Pobody's Nerfect" that he enjoyed wearing.

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    1. Hi Joared. Love the t-shirt saying! Jim was always a funny guy. He loved to (gently) tease me in an affectionate way throughout our marriage. When this disease struck several years ago, he seemed to lose quite a bit of his humor. I'm guessing it was part of the anxiety that would just overwhelm him. Since he has been on the citalopram, I've seen more of his humor. One of life's little (nice) surprises :-)

      Thanks for your comment Joared. I always appreciate your clinical experience and expertise.

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    2. The thing to be aware of about humor is that it is a high level language function, so as a person may need very simplistic sentences with just one thought, they will likely have difficulty processing humor above their level. Have to take the cues from them -- if they think it's amusing -- as you do so well.

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  7. My uncle had an MRI of his brain 2 years ago. No Alzheimer's, and the neurologist said there was no need to see him again. We think he has simple dementia, which has afflicted 5 of his 10 siblings.

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    1. Hi Gigi. 5 out of 10 siblings; wow! There are many types of dementia, but they all have one thing in common; there is no treatment. (Caveat: the rare dementia that is from a reversible cause such as B12 deficiency.) Such a tragic disease. So glad that you and David are doing so well. thanks for your comment Gigi.

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    2. I should clarify that comment by saying that there is no cure. There are some treatments (like Aricept) that may help with some of the symptoms for 6 - 12 months, but do nothing to stop the progression of the disease process in the brain. In addition, they only provide temporary help for some people. Many people that take these drugs have no or little response, or experience unwanted side effects (aggression, nightmares, GI symptoms).

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  8. Carole, how fortunate that the citalopram is working so well to reduce Jim's anxiety, and therefore also your stress levels. You are so kind and wonderful in the care you give him, for example, finding humour as a way to connect in confusing moments.

    Jude

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    1. Hi Jude. I'm grateful that Jim and I have always had a wonderful, loving relationship. It makes it that much easier during difficult times, knowing that I am helping my sweetheart through a very difficult time in his life. I can't imagine how hard this would be if our relationship wasn't in a good place to start. Thanks for your kind words Jude.

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