Saturday, November 5, 2016

"I've Never Done Such a Thing Before!"

Boy, sometimes this is really hard.

Most of it is pretty manageable. The repetitive questions, the loss of words, the forgetfulness, the loss of  skills and ability to do things, having to go to places I dislike (the mall! for fear he would drive if I didn't go with him), the confusion with any slight change in plans; all of these can be a little irritating at times or even frustrating for me. But it really is no big deal.

It is easy to hide my inner annoyance and still be able to help/direct/answer for the 50th time. And, do it in a way that I am smiling and portraying a happiness that I can help him. Which I am!

But there is sadness, because it represents new losses every week, sometimes every day.  And it won't get better, only worse. It helps me immensely when I remain cognizant of the fact that Jim is the one who is losing his abilities to function, not me. He drew the short straw, and I lucked out by still having all of my cognitive abilities.

The times that are the hardest for me are when he becomes angry at me. I am getting better at predicting and avoiding situations that cause his anger, but not always.

One of the things that can change with the progression of dementia is taste. This excellent post by Elaine Eshbaugh, PhD, tipped me off to why Jim has experienced these changes. I used to love to cook. I would enjoy creating a nice meal to share with family/friends. But quite some time ago this love of cooking waned. As I look back, it started with Jim finding fault with meals I would prepare. Things he used to enjoy, he suddenly expressed dissatisfaction with the food I had prepared. Talk about putting a damper on wanting to cook!

As I look back, this was probably one of the earliest signs of change in Jim. We are now down to about less than 10 entrees that he finds acceptable for dinner. It's pretty boring at our house at dinner time! Lunch is even harder. He used to love certain items, but now can't stand them. The latest thing that kept him happy at lunch time was prepared chicken salad from the deli. Nice and easy!

That is, until yesterday. Now he hates the chicken salad, claiming it tastes different. He was obviously frustrated and angry, and I was the object of his emotional upset.

Jim: "I'm sick of not having any food in the house that I can eat!"

Me: "Oh, that must be frustrating for you..." (he interrupted me)

Jim: "Don't give me that! Do something about it!"

Me: "Let's go to the store to see if we can find something that looks good to you."

He was angry, but he agreed. We got in the store and he is stomping around, saying harsh, sarcastic rude things, and very negative at any of my suggestions. At this point the tears started to flow. I just couldn't help myself. I was so hurt, crushed, and frustrated. And feeling very helpless. How do I fix this? I just can't.

We managed to make it out of the store and went home. I don't cry often (although more so lately), and it really made Jim feel bad. So at some level he knew that he was being a jerk. He apologized, and of course I accepted.

Jim: "I've never done anything like this before! I never yell at you, I just wouldn't do that! Please forgive me. I'll never do it again, I'm so sorry."

He really has no memory of other times that he has been mean to me and brought me to tears. Damn this dementia.

The other stuff is easy. This personality and behavior change is not. So, what am I going to do? Well, Jim's health care is in the process of being transferred to a gerontologist. Unfortunately this will not take place until we return in April from FL. She has a busy practice and he is on the waiting list. It will happen, just not as soon as I would like. I've asked to be called in case there is a cancellation that would get us in sooner. My hope and expectation is that she will prescribe something that will help Jim deal with his anxiety.

There are a few different support groups in the area. The one that I think I can go to is the third Tuesday of the month at 5:30 (uh-oh, dinner time!). So I am committing to go to this at least once, to see if it is a good fit for me. If not, there are others. It is getting harder and harder to leave the house by myself. Jim ALWAYS wants to go with me. And if I do leave him home alone, he easily develops anxiety until I get home. But I know that if I can't take care of myself, I won't be in any shape to help Jim.

On a totally different note, I'll be so glad when the election is over! And not just because I am tired of the negativity, but because I will no longer be asked "Are we supposed to vote today?" I'm smiling as I type this.

So once again I must thank my dear readers for listening. How did we find each other? I'm not sure, but it means a lot to me to know that these kind, caring readers are listening. Until next time...


20 comments:

  1. I wondered when this stage was going to kick in. From the little I know this is exactly why caregivers end up seeking help from memory care centers. The other things you mention are manageable but the outbursts of anger are much harder and extremely frustrating. It's very difficult to remove yourself emotionally. Caregivers can't hold up to that for prolonged periods. I hope the geriatrician can help. How long will you be in Florida? How do you think he'lol adjust to that situation?

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    1. I have a lot of hope for the geriatrician. She is well respected, and she was wonderful when my dad was diagnosed. As far as Florida, we usually go for 3 months. Jim would be very disappointed if we didn't go (me too!). But my back up plan is that if it gets too stressful, I'll simply say that our lease is up and it is time to go home. He wouldn't know any different, I don't think.

      The place we are staying, there are 6 other people whom we know well, who also stay in the same complex, and who are good with Jim. They understand his situation. So it might be OK. We'll see... Thanks for your comment Linda.

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  2. It helps to be honest with your feelings. If you want to weep, then weep. He has to know exactly what is going on between you.

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    1. Thanks Gigi. When we are "in the moment", he does seem to have some insight into the impact of his behavior and words. I have observed that the more powerful the emotions, the more likely he is to remember. Maybe not remember the details, but rather the emotions and the feelings.

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  3. Hi Carole , it's hard not to be affected by the negative comments even though you know it's the illness not the person at fault. I had very similar with my mum and it hurts because we know we can't put it right or convince the other that it is the illness speaking. Also you are right, you have to look after your own needs.

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    1. Thanks John. You know first hand how hurtful these words can be. Intellectually you can cordon it off in your brain, but emotionally it is so painful. Most days are not as stressful as the one described above, so that helps me to keep the proper perspective.

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  4. I have been following your blog for a time now and I have such empathy for you. The anger and criticisms are the hardest. While my husband didn't have Dementia, he passed of a brain tumor and I saw personality changes a few years out. It was impossible to not be hurt by things he said especially in front of other people at times. But I know it was the cancer and not really him. Venting here is probably the best thing you can do and don't keep it all pent up inside. I wish you both the best and hope some drugs will be able to help your husband. And always remember you are doing the best you can and that's all any of us can do

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    1. Oh, thank you so much for your comment Mary. As someone who has had a similar journey, you know how difficult this can be at times. I'm so sorry for your loss.

      We look to our older years as a time of being unencumbered, and hopefully enjoying our retirement. This unexpected health change manages to shake everything up. Hopefully I have the grace to do this well. I like your thought that it is important to remember that we are doing the best we can, and that is all any of us can do.

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  5. I follow your blog not because I've been there, but know that I might be one day. And listening to you go through all this just breaks my heart. I'm sending you my sincere hope for some help for you.

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    1. Thanks DJan. I am hopeful for some help, as I look forward to Jim's transfer of health care. Not every day is as stressful as I described above. Most days are OK. When I have an upsetting day, it helps me (the next day) to be able to put it into that perspective.

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  6. Hugh hugs coming from Arkansas. My heart aches for you. I once had someone I loved look at me and say to his nurse, "What is she doing here? She sure isn't one of my favorite people." And the truth being--I was his favorite. We have to hate the disease and know that is what is talking. I do hope you get to that support group. I think they can be safe place for you to just let go.

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    1. Thanks Patti. Hugs (even virtual!) always help :-)

      You know what it feels like to have that disease "talking to you". Heartbreaking, but as you say, it helps to remember it is the disease, not the person.

      You and others have encouraged me to go to a support group, and I'm listening to that advice and will follow through. The third Tuesday (I'm holding myself accountable by typing this!) will be here before I know it. I'm nervous, but yet looking forward to meeting others in a similar situation.

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  7. You continue to describe your experiences so well and it is generous of you to share them. Am reminded that anytime we see personality changes in a loved one, we would do well to wonder why -- continue to observe for more such changes in case some medical issue may be the cause -- rather than our responding with condemning reactions. So easy to say, but more difficult to put into practice, especially when the person might not have yet been diagnosed with any problem.

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    1. Thanks Joared. I am grateful t have insight that allows me to be helpful to Jim as he struggles with this terrible disease. I am reading all I can, and trying to become a better caregiver for him. I'm learning a lot, and hope to increase my knowledge base as we travel this journey together. As they say, "Knowledge is Power".

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  8. My heart goes out to you and your husband. God bless you both.

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    1. Hi Valerie. Thanks for stopping by! I appreciate your comment. Every day seems so different; some days it all seems so manageable, other days not so much. But I feel I'm making progress in accepting and adjusting to our new reality.

      By the way, just took a peek at your blog. I like it!

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    2. I lost my husband this year so blogging has been somewhat medicinal. Thanks for visiting. Hope to see you again.

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    3. Oh Valerie, I am so sorry for your loss. I cannot imagine the heartache. Take care. I will be following along on your blog, as I enjoy your writing.

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  9. Carole, the angry outbursts, whether directed at you or the material things in Jim's life that he feels slipping out of his control must be so difficult. My heart goes out to you. April is a long time to wait - perhaps your physician could prescribe something for Jim's anxiety in the meantime?
    Jude

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    1. Thanks for your kind words Jude. He still has one appointment in December with his doctor, prior to his care being transitioned to the gerontologist in April. It's been tricky, as Jim has strongly stated his opposition to me talking to his doctor. I made some attempts at contacting him privately, but it did not work.

      On the other hand, Jim wants me to go with him to the gerontologist! And I actually have an appointment with her for myself prior, so I'll be able to fill her in.

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