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2 years after my husbands stroke and he is worse not better

by alicia
(sarasota fl)

Question: After my husbands stroke he had 3 sessions of physical therapy which was not enough , then developed a C Diff infection which took 5 months to diagnose, he slept on the toilet for 5 months , it was awful , now his legs are swollen and no doctor can help. I took him to the emergency room 3 times with burning pain in his legs he still has the runs constantly. He drifts in and out of reality. He is 55 and I am 46 I am so depressed. It never ends. He was my best friend, and we had wonderful times together. I feel I lost him even though he is still alive. I don't go out with friends or go out anywhere except work. I feel like I am just existing. I've tried to help him but I am not a doctor, and he won't help himself. I feel so guilty, but should I accept my life as before has ended or continue on and get back to things I want to do.I would love to go out with him, but he refuses to go anywhere except to the doctor. We haven't been in a restaurant for 3 years or a movie. I find myself staying in bed all day long not eating, this is depression. I need to make a move . I'm so very confused as to what I should do.

Answer: You can get help by talking to a licensed counselor to help you through this time. I also recommend going to a caregiver support group or at the very least looking into online caregiver forums. Others that in your situation may be able to give you invaluable insight in how to change or improve your situation and help your husband.

As a caregiver, you have to take care of yourself. This means taking care of your health and doing things you enjoy whether he comes with you or not. I think you really can't make a good decision about your situation until you start taking care of your emotional and social health. Once you have started taking care of yourself, then you can concentrate on figuring out a way to help your husband and make the life decisions you are talking about. These are my own personal opinions, however, and not expert advice.

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Caregivers and Facebook group
by: Barbara L in NH

Hi Alicia,
I'm afraid I can't be of much help with the medical aspect of this. I've been my husband's caregiver for almost 5 years now. He also won't go out except for the doctor's or PT. I am retired so don't have to work but since I have a paid caregiver, for a couple of hours most days, I can get out. Although I think a therapist would be very helpful, so you know you're not alone there are several Facebook groups that are oriented toward stroke or TBI caregivers. One is Original Stroke/TBI Caregivers group. If you're on Facebook, just find the group and ask request to be a member. It's good to introduce yourself and your situation fairly soon when you're on. One can let off steam safely here, and sometimes get some good ideas as to how to proceed.

Recovery is up to the survivor
by: Anonymous

This is coming from a stroke survivor so there is no basis to listen to me. As far as stroke recovery is concerned the doctors and therapists really are only good as far as showing you what exercises to do and nagging, the survivor has to do all the work. There are no shortcuts, no magic pills. In other words his recovery is totally up to him and how much work he puts into it. No work, no recovery. You need to take care of yourself first.

Husband not getting better.
by: Anonymous

Im sorry to hear that your husband is not getting better. I had a Stroke also a couple of years ago, after my Doctor removed my medication for a heart problem. I still cannot go to the toilet, or sleep, plus a few other little things. I live by my self with no family in Australia, I have not returned to work yet.I am waiting to go into hospital to have an electric shock to try and get my heart ticking normally what ever normal is. Please do not give up on your husband, he needs you as much as you need him. I wish you both all the best of luck, give your girl friend a call and go for a nice meal and maybe a dance.

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