What do I do?
I too never thought it would be like this at 61 years of marriage. He was an excellent high school principal of one of the largest schools in our state and loved by all teachers. We moved many times for his advancement and each time I had to find the new doctors, stores, etc. and give up my previous jobs which I loved. I always thought that in later years I would get to decide where we lived, what we would do, etc., but that is not the case. Now his short-term memory is one of the problems, plus a crushed vertebra so there is pain, so I am doing the driving, making the appointments, doing his meds, making the meals, arranging house projects, etc. When is it MY turn to do what I want? Also another problem, when I'm at a meeting, he doesn't remember if he has had 1/2 glass of wine or more. When I come home, it has always seen too much wine because he can't remember how many which causes arguments. What do I do......not go to a meeting, or go and hide the wine, or fill his glass and hid the bottle, or get rid of all wine? I sometimes like a glass with a meal.....again when can I do what I want? I am sorry this is so long, but I am SO frustrated.
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Taking care of someone is difficult work. You need time off too and can figure out how to make that work. You seem very angry. Maybe it's time to make a written plan concerning what will make you happy today and in the future. Maybe speaking to a therapist for you might help.
@dbont What you have described is very difficult and frustrating. I can understand. These are not the retirement years you envisioned and planned on. Perhaps in retirement the two of you had decided together that you would select where you would retire and how you would live. From your description your role in your marriage has moved to one of caregiver and that's not the place you want to be. As @gilkesl wrote above talking with a mental health therapist could be helpful. I'd also like to suggest a support group where you can talk about your frustrations, listen to others, and receive support and suggestions from others.
I have friends in a similar situation as you. After more than 50 years of marriage they (women friends) find themselves in the role of caregiver. One friend's husband has physical limitations and cannot be left alone for periods of time - never mind that HE thinks it's all OK but if he falls he cannot get up on his own.
There are mental health therapists who specialize in working with people in your age group who have serious illnesses or are caregivers for others with illnesses. If you don't already see someone here are some suggestions in how to find a mental health therapist.
1. Contact your local Alzheimer's Association chapter for suggestions. You can find your local chapter here:
Alzheimer's Association: Find your local chapter:
-- https://www.alz.org/chapter-search
2. Find a therapist through Psychology Today's website:
Psychology Today: Find a Therapist:
-- https://www.psychologytoday.com/us/therapists
3. Talk with a chaplain. Here is a description of the education and training of chaplains and their role:
Aspen Institute for Chaplaincy:
-- https://www.aspeninstitute.org/
In my friends' cases their sadness, anger, and frustration has not gone away. Those emotions are still there. By talking with their friends, family, and mental health professionals they have learned ways to take care of themselves since they know they cannot change their spouses or their situations at this point in their lives.
Are any of my suggestions doable or helpful to you?
@dbont Welcome to Mayo Clinic Connect! I’m so glad you found this group. Ask whatever question you want and members will be ready to help you find answers!
May I ask, how did you find MCC?
Caregiving a person with dementia can be very frustrating. And, sadly there often aren’t any real answers about ways to fix things. The condition will eventually progress and that often means new issues but no less frustrating. We were overwhelmed with trying to keep my dad from walking unattended on the porch and deck, but then it turned into not being able to move him in the bed. There really aren’t breaks or times things get better…..based on what I’ve seen.
Getting support for your own mental health is vital. As well as hands on help in the home. Talk with others who are dealing with providing full home care and see what resources they have. The care is constant and relentless. Please talk to others who’ve been there. The general public is led to believe dementia is about losing memories, but it’s so much more.
I buy my wife alcohol free wine. It causes a lot less problems when she grabs a 2nd glass of wine.
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.
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.