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What do I do?

Caregivers: Dementia | Last Active: Sep 16 12:39am | Replies (9)

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Dear @dbont,dbont
DanL's suggestion about the wine is brilliant. Your story sounds very familiar. I did get my wish and we retired to NC which was the first time my wishes had ruled. We lived there for 30 months. The next move was also basically my decision and was to a Continuing Care Retirement Community. One year into retirement my husband was diagnosed with Parkinsonism. When he fell and fractured his shoulder he was given an opioid for pain. He had 3 doses and it took a week for it to be eliminated from his system. During that week he was confused, disoriented and hallucinated. That's when I knew what road we were on and started looking. During the first 7 years I took him wherever we wanted to go. I'm a good planner and as the years passed each trip took more and more planning. Last year the children and grandchildren and I took him to the beach for Thanksgiving. It was his last trip. Four years ago I took him to the Mayo Clinic and he was diagnosed with Lewy Body Dementia. It gets harder and harder to watch as he realizes he is becoming more and more confused. Two years ago I finally gave myself permission to travel without him and I haven't looked back. The trips I go on whether it's a tour or a visit to family rejuvenate me and allow me to continue doing the best job I can for him. He spent a year in assisted living before moving in January to nursing care. He continues to be my main purpose in life but caring for myself is right there with being his advocate. Almost three years ago I found a therapist whom I see about every two weeks. Sometimes it's a friendly chat and sometimes it's a heavy duty session. I see her regularly whether I need to or not because I never know when I will need her. This is not an easy road. You will feel angry. You will feel helpless. You will feel alone. You can express those feelings here and need to do so. Take a deep breath and know you are not alone or helpless. The first thing I did after obtaining his diagnosis was learn, learn, learn. Knowing what you are dealing with and how to deal with it is very powerful. Please stay connected! We are all here for you! At the beginning it is such a rude awakening! But as you said he has been such a good man and you want him to be well cared for. We moved into what my brother rudely called an old folks home when I was 68. Definitely not my plan for retirement.

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Replies to "Dear @dbont,dbont DanL's suggestion about the wine is brilliant. Your story sounds very familiar. I did..."

Dear turtle4115 and @dbont,
Beautifully said. I totally agree with learn, learn,learn! You will acquire tools which gives you confidence. Then you’ll find more times of peace. That is when you may feel strong enough to do the things you thought were just dreams. Maybe not today but someday. Try to make a promise to yourself, don’t give up, choose love and gentleness for your husband and yourself.
I certainly give way to grumpiness much too often. It’s not who I choose to be but my flesh is strong when I’m scared or hurt. My advice is to forgive yourself, and get back into the game.