Tuesday, May 9, 2017

"I'm Carole, version 1 - 10."

 As I have written before, Jim does not always remember who I am. Sometimes it is fairly easy to help him remember, other times it is a bit more of a challenge.

It was after dinner, and he was concerned:

"Where is Carole?"

Me: "I'm Carole. I'm right here."

Jim: "No, I mean the other Carole."

Me: "Well, I am Carole, version 1 - 10."

We both laughed. I took what could have been a stressful moment and managed to turn it around with humor. I'm not always that successful, but I do find that a good dose of humor goes a long way in soothing the troubled waters.

We don't go to restaurants anymore. It is just too stressful. The difficulty with the menu, the noise, the people, the lighting. It just isn't worth it. The other night it occurred to me that we could order takeout from the local Chinese place, pick it up and bring it home to eat. Jim thought it was a great idea. We settled on what we were going to order, I made the call, and we headed out the door to pick it up.

It was a short, five minute ride. In those 5 minutes, Jim became quite upset. He insisted he did not agree to the plan, and angry because "You should have checked with me before ordering food!" We picked up the food, and I ended up throwing it away. He was so upset by the incident, it just seemed like I needed to get it out of site. I quickly threw something else together for dinner. He seemed to calm down.

About an hour after dinner he became upset. "Can't a person get any food around here? Where is dinner?" He had no recollection that we had already eaten. And so it goes. I think the anxiety from the takeout food incident was still circulating in his brain.

Overall, since starting on the citalopram for his anxiety I believe that he is doing better. At least this holds mostly true for when we are at home, with no distractions and nothing out of the ordinary. He still becomes quite anxious with anticipation of any plans, appointments, any changes etc.

Activity outside the house is always vulnerable to an upset. The full effect of the citalopram may take another 4 - 5 weeks.  So perhaps his anxiety will improve further. But at the same time, I realize that nothing will make everything OK all the time. Dementia just doesn't work that way. There will always be challenges.

When I look over the past year I realize that Jim has lost a lot of ground over a relatively short period of time. There are a lot of theories out there to explain the differences between dementia that progresses more slowly, versus dementia that progress more rapidly.

This link has been quite helpful in preparing me for what to expect. When I look back, I realize that a year ago he was in stage 4. He is now in the beginning of stage 6.

Language has been more challenging for him, and I continue my strategy of responding with a neutral response when he says something I don't understand.

Today he wanted me to "find the staff". He also wanted me to "take care of the trees". I responded by saying "Is it OK if I do that tomorrow morning?" He was quite receptive to this delay. And of course he will have no recollection of this conversation.

Jim's receptiveness to Mike is intermittent. I never plan for time to myself, because I never know if Jim will be agreeable to spending time with Mike. Those few times when Jim has spent time with Mike have been nothing short of wonderful for me. I'm hoping that as time passes, the full effect of the citalopram will help Jim to be able to enjoy more time with Mike.

Jim is scheduled for a CT of his brain this Thursday. How do I get him there? Well, I've told him that all people 65 and older are encouraged to be screened for vascular disease. I told him that I've already had the test, and that the doctor would be scheduling one for him too. When I told him this, he thought it was a good idea. I won't bring it up again until the morning of the appointment. I hope he goes, and that it is not too stressful for him. I'm ready with my companion cards, and I will also write on the card that loud voices are upsetting to him. I'm also realistic in that he may not agree to go, or may become so anxious that it is not worth doing. We'll see. Either way is OK with me.

My top priority these days is to keep Jim happy and content. Every week that passes I get better at it, as I am always learning from Jim how best to help him through this next stage of his life.

Another post is written. Thanks for stopping by, and thanks for listening. I so appreciate each one of you.


22 comments:

  1. I hope that medicine starts to work soon. I don't see it having any lasting effects. Cruddy disease! I really wish I could be more encouraging. I just picture you having to walk on eggshells too often. Sigh ... I'm sorry. Sorry things work out the way they do ...

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    1. Hi S.J. I'm grateful that my personality is such that I have a lot of patience, and being empathic comes fairy easy for me. But you are right, with dementia these skills/traits require daily, intense efforts.

      Yes, dementia is a terrible disease. It helps when I keep my expectations low, and when I look for the lighter side. When I started to lower my expectations, I found a greater peace. Rather than fighting the inevitable, coming to a place of acceptance has been very important and very helpful for me.

      We definitely have times of joy and laughter. I should write about them more often!

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  2. There is so much love and empathy expressed in your writing. Thank you for this blog.

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    1. Hi One and Doll. Thanks for your comment. Writing has been extremely helpful for me. My (so far) inability to have time on my own to connect with a support group has been hard for me. But on the other hand, the comments, love and support I receive from friends, family and readers of this blog has sustained me. And for that I am grateful.

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  3. I think you are amazing. All I can do is to compare our two selves. You are strong in your determination to do your best, whereas I truly believe I would give in at the tenth hurdle. God bless you and Jim.

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    1. Thanks for your kind words Valerie. I think you are not giving yourself enough credit! If I compare myself today, with myself a year ago, I hardly recognize myself. This disease and my love for Jim have helped me to change how I react and respond to all of these challenges.

      Somehow, even though it is a tragic disease, it has made me a stronger person. We all have our challenges, and I think that for the most part we rise to the occasion as the challenges come our way.

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  4. I too am amazed at your seemingly endless patience with such incredibly difficult circumstances. And I hope you can get him to the doctor's without too much trouble, but I suspect it will be a challenge for everyone. Sigh. :-(

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    1. Hi DJan. It is indeed a difficult situation, but I somehow find peace with acceptance. I still get pretty stressed out at times, but by accepting that this is our reality, it really helps me to create the right attitude. Thanks for your comment DJan.

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  5. When I wrote about my new hero, I should have written about you. I am constantly amazed at your efforts to make things easier for him and for putting yourself in his shoes. Our own frustration is easy to communicate but you are able to write about his also. Sympathy is one thing, empathy is another and you have the latter in spades.
    Sure hope things work out well with the new meds and Mike so you can get a little time to recoup.

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    1. Hi Patti. Thanks for your comment. I don't always get it right, but I'm doing better at keeping my expectations low. This helps to keep the frustration at bay. Today Mike dropped over to see if he could talk Jim into going to lunch with him. It was a no go. But I prepared myself to expect that this would happen, and therefore the disappointment was not so great.

      I sure do have hope though, and that helps me to keep going. I look forward to our next appointment with Dr. S. If anxiety is not improved by then, I'll be looking for other suggestions.

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  6. You have the patience of a saint. I admire you for that and I'm afraid, no, I know, that I'd fall short.

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    1. Hi Mary. Thanks for your comment. I think that you'd be surprised if you found yourself in a similar situation. Every day I am reminded that the man I adore is struggling with a dying brain. When you think about it that way, it makes it easier to maintain kindness and understanding during difficult times.

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  7. I learn so much from your blog--truly. I find myself re-phrasing sentences when my husband doesn't understand what I'm saying. I've also discovered that he gets confused when his blood sugar is low. Thank you for being here. At the same time, I'm sorry you're having to go through this with your husband. Blessings to you both!

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    1. Hi Tehachap. Your husband has been hit doubly hard, suffering from diabetes and cognitive changes. Many challenges ahead for both of you, I am afraid.

      I've learned so much about communicating more effectively. You are right, that re-phrasing often helps. I also try hard to make sure that when I speak, I convey in very concise terms, without overloading with too much information.

      I also have learned to speak more slowly, and I use pauses quite often. It gives Jim a chance to process what is being said.

      Thanks for your comment Tehachap, and hang in there!

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  8. I continue to marvel at your communication skills -- adjustments to the needs of your husband in the moment. All healthcare personnel, including the rehabilitation therapists, who serve individuals with dementia and even other communication deficits such as some who've had strokes, brain injury, various neurological diseases could benefit from reading your accounts. Continue to care for yourself as much as possible.

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  9. I continue to marvel at your communication skills -- adjustments to the needs of your husband in the moment. All healthcare personnel, including the rehabilitation therapists, who serve individuals with dementia and even other communication deficits such as some who've had strokes, brain injury, various neurological diseases could benefit from reading your accounts. Continue to care for yourself as much as possible.

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    1. Hi Joared. Thanks for your kind words. Lately Jim has been sleeping a lot. He often goes to bed at 7:00 - 7:30 and sleeps for 10 - 12 hours. Plus he naps at least twice a day. I use this time to "take care of myself". These moments allow me to let my guard down, go into another room and call a friend, or just enjoy some alone time.

      Like you, I used to work in the healthcare field. I always found that those who were able to put themselves in "another person's shoes" seem to have the most effective communication skills. Such a powerful tool in all relationships!

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    2. So true -- "...those who were able to put themselves in "another person's shoes" seem to have the most effective communication skills."

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  10. You are amazing, Carole. Jim is very fortunate to have such a PATIENT, loving caregiver. My husband's cousin has an advanced case of Alzheimer's and sadly her husband suddenly passed away last month. It's very difficult.

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    1. Hi Kay. I can't imagine the predicament for your husband's cousin. I sometimes feel that our country is just not prepared for the very real consequences that so many suffer, from this dreadful disease. As the baby boomers age, it will only become more difficult for those of us who love and care for those afflicted.

      Thanks for your comment Kay.

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  11. Carole, I think you are amazing. Jim is fortunate to have you as his spouse.

    I was just thinking about the difficulty of finding time for yourself, for example to go out with a friend or go to a support group meeting. Would there be any chance of having someone (like Mike, or a hired caregiver) come in and stay in your home with Jim after he has gone to bed for the night? You could get out of the house briefly, and if Jim awoke, someone would be there to calm him or give you a call. And if he didn't wake, he wouldn't even know that you had been out.

    Just a thought...

    Jude

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    1. Hi Jude. Thanks for the suggestion. Our situation will definitely require "out of the box" thinking.

      I don't often feel like I am "amazing", but what I find amazing is the wonderful, kind support of folks like yourself, who are so positive, encouraging, and with innovative suggestions for our situation. Thanks Jude!

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