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Caregiver Joy - I've Lost Mine

A myALZteam Member asked a question 💭
St.Louis, MO

I am 52, and left my job in April to say home and care for my husband
He has 3 adult children. I have no children of my own
I'm a devoted and loving wife & partner.
My goals have been to keep M happy, safe and give him as much joy as possible.
Now, I'm struggling.... more than I ever have.
I've lost my joy. Any joy.
I am i his only caretaker, with him 24/7. I am able to leave him for an hour or so, but not much longer.
When I do leave, I worry constantly anyway.
Taking him places is getting… read more

August 17, 2017
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A myALZteam Member

I can’t recommend this book enough. Creating Moments of Joy, Author J. Brackley. Got it at the library but will spend the money and by it. You can Google it and read the first 50 pages for free. It has changed my whole understanding of seeing the world through their eyes and changing my behavior to create small moments of joy. It teaches techniques to curb negatively. You don’t read it straight through. Go to the table of contents and pick the chapter that addresses what is currently going on in your life.

September 18, 2019
A myALZteam Member

Hello Caregiver Joy. I have been on this journey with my husband for 6 years now and the only advice I have is just to tell you how I have managed to get this far. Like you, I worry constantly and especially when I am away from him, which is not very often. At first, I was afraid to commit to doing anything really big with him (like a vacation, etc.) for fear that I didn't know when he would get worse all of a sudden and I wouldn't be able to handle him. I regret those decisions as this disease, in my husband anyway, has been a "creeper" rather than a sudden decline. I have struggled with the depression and the joyless days. Everyone has told me to get help and take care of myself, but it is so hard to do - I mean emotionally. The thing that has worked best for me so far is, I get up early to have a couple of hours to myself. I drink my coffee and read the newspaper, knowing he is safely in bed. It gives me time to think and sort of "compose" myself for the rest of the day. For me, this has worked wonders. Just a couple of hours all to myself leaves me more refreshed and prepared. I know that at some point I will need to call hospice or the local Alzheimer's care-giving facility for help, but I feel that as long as I can take care of him without feeling so terribly stressed, I will do it. There are days, of course, when nothing helps - but just knowing I can have a few minutes to myself the next morning usually gets me through the bad days. I sincerely hope this helps you and you are able to find a way to rediscover your joy. God bless you.

August 24, 2017
A myALZteam Member

You may want to consult your physician about medication. I started taking Zoloft, I didn’t really get my joy back, but I don’t really care now. It’s a terrible way to go thru life, but it helps me cope. The days are exhausting!

June 9, 2019
A myALZteam Member

You need to decompress. If you can't find a way call one of the hot lines on this site maybe they can direct you to someone.

January 31, 2019
A myALZteam Member

Dear care giver joy. It like we living the same life. I gave up both my job I truly love. My friends that can’t deal with Jim illiness. Jim at the 6 stage so it been a Long unsuccessfully. Journey. It is what it’s is and do what you need to do for your on sanity. Well a small door open for Jim last night. Jim don’t really talk so much any more. But. He. Said. I am lost I can’t find my self. I said that ok Jim. It ok. But it not ok. This horrible. Horrible. Disorder. Took our man away from us. We don’t know this new person we are with. We don’t know this new life we are surviving. It sad. Horrible for all of us. All I can say do your best. It won’t get better. I finally realize this. Take care

October 30, 2017

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