Friday, August 5, 2016

There's a Stranger in Our House

Well, he's not really a stranger, but sometimes it feels that way.

It's been a while since I posted. My goal was to write at least weekly. Sometimes I'm not sure what to write, and sometimes I hesitate to write because I don't want everything to sound so negative. Jim and I have plenty of good times together. He is still in the early stages. From what I have read, some spouses do not recognize any cognitive changes until the person is well along in the decline. I certainly noticed very early on several years ago.

We definitely have had some frustrating moments. But looking at the totality, it really is nothing compared to what many caregivers go through. I expect to fine tune my coping skills as the disease progresses. I could be described as a planner. I like to know what to expect, and I appreciate opportunities to prepare for the future. This journey will definitely take me to places I've never been, and I hope I am prepared.

We were all set for an afternoon cruise around one of the local lakes. We live near a resort town that is fun to visit. It sits on a beautiful lake. Last week we talked about booking one of the touring boats around the lake. I suggested the one hour tour in mid-afternoon, as opposed to a dinner or lunch cruise. I figured the shorter time span would be easier for him. He was just as excited as I was, and definitely looking forward to it. Tonight he surprised me by saying that he has "no interest" in doing it. "It sounds boring."

Probably one of my biggest challenges is finding things to do that will keep him happy. It is not unusual for him to wake up and say "what are we doing today?" It's a big change for me. I have my own life of course. When I first retired, he was perfectly capable of finding things to do to entertain himself. Myself, I enjoy time with my friends and lots of physical activity. Jim used to enjoy working out at the gym. I finally cancelled his membership a couple of months ago. It has been a long time since he went to the gym, over a year at least. I certainly tried, including asking him to join me at the gym. He is always "too tired" or "too busy" (doing what???).

We used to go for long hikes together. Now, it is a slow shuffle for 2 miles at the most, and then he is tired. That may sound like a long distance for some people, but we used to go on very long strenuous hikes and enjoyed every minute. There is no physiological reason for this change in his energy level. Reading about dementia it appears that fatigue is common. I have not been able to figure out why. Is the brain on overdrive trying to fill in the missing pieces? Does this then tire out the person? I just don't know the answer to this question.

I miss the old Jim. The new Jim is a different man. Still looks the same, but acts and speaks so differently sometimes.

Yesterday I spent the day with my elderly mom. She needs a lot of help and relies on me for grocery shopping, banking, general errands etc. I am so glad that I am able to help her at this time in her life. I got home late afternoon and Jim was visibly upset (at me) that "there is no food in the refrigerator". What he really meant was that he could not find anything that appealed to him to eat for lunch while I was gone. It also means he did not look far enough in the fridge to find some of his favorite foods.

It's hard for me to not get defensive when he says things like this. We worked through this unsettling episode, but it's like a scar tissue that seems to be building with each hurtful comment. Even though I know it's the disease process, it is hard not to take it personally. I do so much for him, and I sometimes feel that I am not appreciated. But deep down I know that is not the case. He truly loves and appreciates me, it is just that darn disease process has changed him into someone I do not always recognize.

I have a very close friend whom I trust, and have been able to share with her what is going on with Jim. What a relief. Her emotional support has been nothing short of phenomenal. She listens carefully and always has something empathic to say to me. I cherish her friendship. We had lunch together last week and then went shopping. What a wonderful time we had! Lots of laughter, and lots of talking. It's one of those special friendships where we are mutually supportive of each other and truly enjoy each others' company.

It feels good to put into words what is in my heart and mind. Thanks for stopping by.






14 comments:

  1. The life of a caregiver is lonely at times. I'm so glad you have a friend to confide in. "What are we going to do today" is a question Bob asks every single day. He also wants to know what we're going to eat. If only we understood more about the brain.

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    1. The loneliness aspect would be a good topic for a separate post. There are some new people I have met since I retired, mainly from the Y where I go several times a week to exercise (and socialize!). I hesitate to expand these new friendships into "couple friendships". Linda, I know you relate to this. Your blog is helpful to me and I am sure to others. You handle difficult situations with grace and understanding.

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  2. My heart goes out to you, Carole, and I am glad you are writing down your feelings, since it could happen to any of us as we age. My husband and I are both in our mid-seventies and watch each other carefully for signs of dementia. Sometimes we have arguments because of it, but they are rare. Mostly we are just glad to be together on this journey. Sending you lots of love and grateful for your willingness to write about this.

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    1. Thanks so much DJan. I feel the love :-) It does feel good to write about it. Sometimes I hesitate to write a post, but then after I hit the publish button it always feels good. Knowing there are thoughtful, caring folks reading means a lot to me.

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  3. I am so happy for you that you have such a valuable friend during this time. Care giving can drain the giver and it they don't have support and some "me" time, their quality of life as well as their quality of care giving can suffer greatly. Keep your friends close and also keep those moments that take you away if only briefly. They are necessary to recharge.

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    1. Thanks Patti. I treasure my friendships. I'm the kind of person who has many acquaintances and a few friends. But these friendships are precious to me. You make a good point that caregivers need to take of ourselves, so that we can be a better caregiver for our loved one.

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  4. Thank you for writing, Carole. It is truly a gift when I see a new post from you - please keep writing! It helps with the isolation to read that someone is going through much the same struggles as I am, even though we don't know each other in the usual sense.
    I am like you in that I am a planner and especially when I'm in unfamiliar territory it helps to read how others have handled the trip. I read and read!
    But this trip is like heading down a major wilderness river in a raft. Even the most detailed map can't predict what your day is going to be like - there's weather, and strength, and equipment, and attitude that day, and countless other variables that affect how it goes. And then there is your partner in the raft - increasingly unable to understand what's going on, how to paddle, how to take direction, how to read the river - the partner that planned the trip years ago, with great enthusiasm.
    And the trip just continues on.
    So, hollering from another raft as we pass by, "Hang in there!, people have done this before."

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    1. Thanks for your kind words Jan. I love your metaphor of a heading down a river in a raft! To add to your description, sometimes it feels like white water rafting. Fortunately we have on our life jackets (friends, both locally and in the blogosphere). What would we do without them?

      This trip of life that we planned for so many years ago is not turning out the way we had hoped or planned. But we hang on, bolster up our courage, navigate a new course, and do the best we can.

      It means so much to me when I hear from you and others who are going through a similar journey. We understand the challenges. Our reaching out to each other does indeed help with the inevitable feeling of isolation.

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  5. I have a friend whose husband had Alzheimer's. She placed him in a care home, but over time, she noticed that he never seemed happy. So she brought him home, took care of him, and finally, he died. She told me that taking care of her husband had "some benefits" for her, emotional I suppose. Now, she herself is in a ritzy retirement facility and she seems quite happy and content with her life.

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    1. I'm so glad that your friend was able to have a positive experience in caring for her husband. It probably gave her peace when he finally did pass. Care at home is a wonderful option for folks, as long as the caregiver is able to handle it and get adequate support. Thanks for your comment Gigi. I always appreciate your perspective.

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  6. You are so right that you need friends to help you thru. I posted on another site and used my hometown in my name. Two women contacted me. They live very close to me and we have met for lunch. They are new friends but already seem like old friends. Our husbands are in different stages but we can talk without feeling pitied. Sometimes you need friends who know exactly,what you are going thru.

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    1. Thanks for your comment. I know what you mean about being able to talk and being listened to, without feeling pitied. So glad you have found new friends to share in this journey with you!

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  7. What a powerful post. Thank you for sharing this. I am a part-time caretaker of my husband. By "part-time" I mean I'm his caretaker when his health slides backwards (he has a number of conditions he had to manage). When he feels better, he can take care of himself perfectly well. It's like being married to a dual personality.

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    1. Thanks for your comment Kathleen. I just discovered your blog and really enjoy it. It sounds like you have some challenges of your own. Chronic health conditions come in many shapes and forms. But they all take a toll on the individual, as well as the caregiver. As one of my other readers would say, "Keep writing!" It does our soul a lot of good and may help others as well.

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