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My husband is 44 and had a stroke that left his left side disabled and effected his speech. My problem is I am his sole caregiver with no other help but he tells me all the time I am stupid and can't do anything right. It is starting to effect the way I interact with him. I dread being around him. Was I foolish to try and take this on alone? Would he have been better off in a facility? I just dont know anymore.
Judy83059, May 22, 2020 9:52am EST
You are in such a difficult position! It took courage for you to reach out and share your pain.
I cannot say whether you made a foolish decision. But I can say that you need help! I am sole caregiver for a 56 -year-old husband who began having mild strokes at the age of 41. For years I simply did what had to be done, caring for him while working and raising two sons. Finally last year he fell and broke his femur. When he came out of rehab I hired an aide to come in for 9 hours a week. (She hasn't been here since COVID-19 started.) She not only helped him with personal care, but also did laundry, cleaned the house, and sometimes cooked. She was a cheerful presence in our home who became a friend to both of us. I can't wait to get her back! I wish I hadn't waited so long to hire her. If you can afford this kind of outside help, I would urge you to find the right person to assist you.
If you cannot afford to do this, perhaps there's someone in your family, nieghborhood, or faith community who can give you respite time. Is there a Center for Independent Living near you that could support you?
Do you have someone who can listen to your feelings and help strengthen you?
As your husband's primary care giver you need to find ways to take care of yourself. That's the only way you'll be able to be there for him for the long haul.
AlyAHA, May 22, 2020 6:07pm EST
Deedee46, I'm so thankful you have found the Support Network and have received such amazing support from Judy already. We are here to listen. You are not stupid, you are caring for a loved one which takes a lot of strength and patience. I've only been on the Support Network for a few months and I've seen a lot of conversations about mood/personality changes after a stroke. It may not be something your husband can easily control, but that doesn't make it less hurtful. Have you expressed how he makes you feel? I would recommend you each seek therapy separately. You should also seek to do things you enjoy and practice gratitude. Perhaps even going for a 30 minute walk alone every day will be enough to clear your mind. Wishing you all the best!
JamesPL, May 24, 2020 9:52am EST
I would echo exactly what AlyAHA has said! It is so important to make some time for yourself. What you are going through can be very stressful and you need a relief outlet. Long walks are an excellent suggestion and a great way to clear your mind. I also agree that counseling could be very helpful. More for your husband than yourself but group sessions would be wise. There are counselors that work via online since getting out physically is difficult during this pandemic.
I wish you both well!
Deedee46, May 26, 2020 9:38am EST
Thank you all for the encouragement. At 46 this was never how my life would become but it is what it is. Finding alone time is so hard because since the stroke he has become so clingy to me. I know I need help but family and friends are always too busy to help. God is with me and that is my support system.
AlyAHA, May 26, 2020 6:40pm EST
Deedee46, I also just came across this article about personality changes after stroke: https://www.stroke.org/en/about-stroke/effects-of-stroke/emotional-effects-of-stroke/personality-changes-post-stroke
I also highly recommend that you call the American Stroke Association’s Stroke Family Warmline: 1-888-4-STROKE. The people working on our Warmline are specially trained and have personal experience with stroke. They are there for you, to listen and to help you get the information and resources you need.
Mdrus, May 28, 2020 4:08pm EST
I am a caregiver for my daughter who suffered a massive stroke three years ago at the age of 37. I took some time off work when she had the stroke and was in a position to take advantage of some services to help us get through the chanllenges. One program that continues to be of tremendous help to us is the state's CHOICES program which provides in home care to patients who qualify. Have you heard of this program?