Thursday, June 2, 2016

It's Late; 11:35 PM To Be Exact

It is 11:35 PM, which is late for me to still be awake. My mind doesn't seem to want to rest tonight. I usually have no problem falling asleep, but I seem to have a lot on my mind. I'm hoping if I write about it, perhaps I can put things to rest.

We have a wedding to go to this weekend. It is about 2 hours away in unfamiliar territory. We will pick up my mother, and then head out to the wedding. I know that I need to be the one driving. Jim does best with short, familiar trips. Will he agree to me being the driver this time? We'll take my car because it is larger and can easily hold all of us. Usually if I say something like "I'd really like to drive today" he is pretty agreeable. Especially because we will be driving my car and not his. Fingers crossed this all goes smoothly.

Then there is the wedding itself. Will people notice? I always wonder. A lot of the things that I notice are things that perhaps others would not. They might give it a brief thought, but then just move on. A lot of times the things I notice are not off a lot, just "half a step off", as I like to say. I often times find myself helping to explain, offer a minor correction, filling in an obvious gap when we are in public.

The more obvious evidence of cognitive loss are seldom displayed in public.  Maybe on some level he does know that he has limitations. Maybe he chooses to cover it up as best he can in public, and feels safe to ask/say these things to me in private.

We are having our house painted by someone we know who does this for a living. Jim became focused on the chargers that the painter left plugged in to outlets in our garage overnight. (I'm not very handy, but I think the chargers are for power tools that the painter uses.) After the painter left, Jim obsessed about how it was dangerous to leave them plugged in overnight. I tried to reassure him to no avail. He called the painter to question him about it. This is after the painter put in a very long day of hard work. I listened to the message that he left on voice mail. I can't even imagine what the painter thought when he listened to that message. I am embarrassed. I admit it. The painter never called back (no surprise to me). Jim insisted that we unplug the chargers while we sleep tonight. I sure hope they have enough charge in them for tomorrow's work.

The brother whom I am closest to is the only person who has asked me about Jim and his cognitive changes. It is a relief to have someone know, someone I can talk to. Is he the only person to notice, or is he the only person to have the courage/nerve to say something to me?

It always feels good to put my thoughts in writing. I think I'll do one of my Ken-Ken math puzzles and see if that tires out my brain enough to induce sleep.

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Addendum: Things always look better in the morning :-) The chargers are plugged back in and look to be fully charged. I plan on buying lunch for the work crew today. Then headed out to get my car serviced. Life is good. Hope this finds your day filled with warmth and sunshine.







18 comments:

  1. I know how you're feeling, having planned a trip and now wondering if it's going to come off okay. It's hard to worry about what people notice, too. For that reason, I've been talking to people and bringing them up to speed, both so they won't be surprised at the forgetting or at slightly "off" behavior, but also so that I can quit worrying about it. So far, it has helped a LOT.
    But the decision to "come out" to other people about the reality of the dementia process feels just awful at first. It means doing something that my spouse would not want, but that I know is essential for healthy social functioning from here on out.
    Just food for thought. Take care, and best wishes for a good weekend!
    Jabberwalky08.wordpress.com

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    1. Thanks Jan for your comments. I've thought about this a lot. Yes, "coming out" does feel awful. It makes me feel guilty to just be considering this. I've been hoping that people would notice on their own, and then say something to me privately. I don't know if Jim would ever forgive me if I he found out that I was the source. He is in big time denial, and thinks that I am the one with the problem, not him

      Nature of course will take its course and soon people will notice, without me having to be the one to betray this trust Jim has in me.

      I really am conflicted about this. I appreciate your remarks and hearing about your experiences, as I think your spouse may be a little more along the path than Jim is. Healthy social functioning. It sounds like a good goal. I'm a work in progress, and hopefully I will work my way through this.

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  2. Carole, I think Jabberwalky08 has some very good advice. I don't remember if you have a medical diagnosis from your doctor. That might be the time to go public. I'm thinking you and your husband are younger than us. Bob is 84 and I'm 74. Much of his dementia can be attributed to age. He's not well. Snow white hair. Looks a frail. People want to dote over him and take care of him. The situation would be different I think if he were 70.

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    1. Hi Linda. Yes, Jan does have some good advice! I'm hoping I can make my way to a place where I can feel comfortable doing this. I am 64 and Jim is 67. He first showed symptoms probably 4 - 5 years ago.

      He has a good family doctor (whom I suspect knows; how could he not?). But Jim has been clear with me that I am NOT to say anything to his doctor about this, because I would just be "leading him down the wrong path". Jim's mom developed dementia in her early 60's, so a good possibility that this is at least partly genetics at work.

      I appreciate reading about your experiences with your husband. You have learned some of the same tricks I have to keep the peace :-)

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    2. Oh, dear, keeping things from the doctor is not a wise course to take. There might be some help the dr could provide. Or, do you just not trust the dr? I have friends who I have accompanied to their doctor's appointments and I was aghast at how terrible their doctors were.

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    3. His doctor is considered to be quite competent. I don't know him well, as I have never had the need to go with Jim to his appointments. It's a touchy situation. I do not want to risk alienating Jim by going against his wishes in this regard. Jim trusts me; my telling the doctor my concerns would be considered by Jim to be a betrayal. Thanks for your comment.

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  3. Perhaps coming out would make things easier for you but since you said Jim is really opposed, that does create a problem. I am glad that you have your brother who knows that you can relax around. This has to be very stressful for you beyond just the care giving. Perhaps a support group would be helpful. Meeting with folks like Linda who have found effective methods dealing with the daily trials could be so helpful. I know my cancer support group is invaluable. It is so great to have people I don't have to pretend around.

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  4. I can't add anything to what sounds like good advice from several commenters. Just know that you have my sympathy for being in this difficult position, and for your sake I hope things resolve themselves before too long. Remember, in this situation, everyone says ... take care of yourself first.

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    1. Thanks Tom. I'm so fortunate for all the support I receive on this blog! I have found that even as I type out responses to each comment, it helps me to process things. Kindness from others goes a long way to lighten the load. Thank you for yours!

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  5. Thanks Patti. I never thought about it that way, but yes, it is pretending! Not just to other people, but also to Jim. The idea of a support group is something I'll have to think about. It might helpful to talk to others who are going through a similar situation.

    Sometimes it seems selfish for me to want to be able to tell friends and family. It would certainly make things easier for me. But I'm not sure it would be of help to Jim. His feeling of betrayal would likely alter our relationship dramatically.

    The other thing that occurs to me is that I can stop worrying about it. My worrying will not alter a single bit what will happen this weekend. Just go with the flow.

    Thanks for your thoughts Patti.

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  6. I'm so glad you're able to confide in your brother now. It's difficult. I worry about myself because my father and his siblings had Alzheimers. Sending you hugs from across the ocean.

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    1. Aww, thanks Kay. From my vantage point, science can not move fast enough to find a treatment/cure for the different types of dementia. It strikes down so many people. And the impact on the family and caregivers is enormous.

      I appreciate your comments. Sending hugs right back!

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  7. I'll bet people have noticed but just not said anything. When my sister-in-law started showing signs of early onset Alzheimer's she made him promise not to tell anyone. This went on for several years and those of us who did notice changes didn't say anything to them but we talked among each other, thinking someone must know what was going on. It took her getting lost and the police with tracking dogs being called before it all came spilling out. It had been so hard on my brother, the fact that he was going through so much and had no one to confide in.

    Hope your trip goes well. Dementia is sadly a part of life. Many people have been touched by it in families and understand the road you are on.

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  8. Thanks for your comment Jean. I appreciate hearing about your brother and sister-in-laws's experience. Jim actually denies that there is anything wrong. But I sometimes wonder if he really does know on some level, and it is just too hard for him to acknowledge.

    Our trip went well. I drove, and it was not an issue at all, thank goodness!

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  9. I am new to your blog and appreciate your comment on my post today. Thank you. I think you made the right decision to retire when you did, so you and Jim can enjoy retirement together.

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    1. Thanks Gigi. I enjoy your blog as well!

      Yes, I am glad I retired when I did. It is really only in the last year or so that things have progressed to the point where it has altered our life in a significant way. And I know that it will progress further of course. So my goal is to live a grateful life now, being grateful for what we have now, this moment, this day.

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  10. Carole, my mother had dementia and so I understand so well many of the things that you are going through. I wish that I had blogged during my caregiving experience, I think it would have been hugely helpful, so please do keep on writing (even in the wee hours of night), it is definitely therapeutic for you.

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    1. Hi Connie. thanks for commenting! I look forward to checking out your blog. You are so right, I always feel better after putting my thoughts into writing. I may not be the most prolific writer, but it will be heartfelt. As a caregiver yourself, you understand the many different emotions that come with this journey.

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