My husband had a severe right medial cerebral artery stroke (embolic). He was 58 at the time. We discovered from the angiography done at hour 7 that there had been a 'silent' stroke in the area as well. None of the Dr's expected him to survive 3 months much less 3 years.
My husband's father died from a hemorhagic stroke in his early 70's, his maternal uncles and aunts all have atrial fib, and I believe that one or more grandparents died from stroke.
We are now almost at the end of year 3. My husband has few physical signs of a stroke (small amount of facial paralysis, voice is different). He does have impaired judgement and impulse control difficulties, since portions of his frontal lobe died (he's ambidextrous, which makes it even more pronounced).
He feels that he can go back to his old lifestyle, which was part of the problem. I love this man dearly, even though the stroke changed him from the man I married 15 months before his stroke. How do I give up the fear of losing him without giving up on him?
Any ideas?
Hi Claire,
Tell me more about how you're feeling. Are you having difficulty dealing with the fact that your husband has a health condition that can be fatal? Or are you having difficulty dealing with the fact that he's a different person because of the stroke?
Actually I am having difficulty with dealing with a 'different person' as well as dealing with the fact that happily ever after may be less than 6 years. What I have more difficulty with right now, is the impaired judgement. He has decided that he is going to go back to the eating and drinking behaviors that he had prior to the stroke. He is unable to understand that this was a major contributor in the first place (overweight, little to no exercise, alcoholic levels of drinking), as well as the family pre-disposition to stroke - as well as the fact that he has had 2 strokes already and is extremely high risk because of all these things to have another, most likely fatal, stroke.
It leaves me with the proverbial bag - excess debt due to his impulse control, and the thought of being alone. My religious beliefs help, as well as my church 'family'. The caregiving for my husband and now for my parents - just recently moved near me (against their will) and the care that they need from me as well, is quite draining.
Thank you for the question
Dear Claire:
Are you and your husband involved at all in a local area support group for stroke? And what about a group for yourself, as a spousal caregiver -- such as the Well Spouse Association (http://wellspouse.org [wellspouse.org]) . The problems with his behavior may not be totally solvable, and not by you...but outside assistance may help, that you could find out about from the local stroke support group. And it's important for you, the spousal caregiver to hear from and get support from other sc's... and to take regular breaks -- particularly because you are also caregiving for your parents -- a double load.
Hi Wellspouse -
There is only one local stroke support group, and my husband goes to it by himself - needs to have some independence and some privacy.
I have tried caregiving support groups, but in my area they are people dealing with parents or elders that live at a distance. Having a spouse, and parents that are local, are quite a different situation.
I currently see a Psychologist at work, and a social worker through my Church. It is quite possible that my husband's time may be growing short - he feels that he is 'home free' since we are almost at year 3. Little does he know that this acutally means the sands of time are running through the hourglass more quickly.
Thank you for your suggestions. Will check out wellspouse.org.
Additional complication has now been added. Evidently my husband's mitral valve is not working properly, and has significantly degraded over the past two years. The Cardiologist is talking heart surgery to repair the valve. This is extremely scary to me, as my husband was not expected to survive the 7 week hospital stay from his stroke or to be able to walk without assistance and use his left arm/hand, much less live 3 years after the stroke. I now know my limits - I am at them.
Dear Claire:
That is scary news... You go along thinking, well I can manage this, and I can keep doing the other, having changed routines many times in helping your husband, and coping yourself with new symptoms... and then this comes along.
You can but take it a day at a time. And do find some time for yourself each day, whether it's for a walk, or a quiet time alone, or meditation. My suggestion of peer support also pertains. You are so right, I attended groups for my first wife, and they were good, but mainly were for her. I also went to a family caregiving group, but most of the others were children of aging parents, not spouses -- totally different outlook. Just as it's good for your husband to have his own stroke support group, it is good for you to have a spousal support group. As for social workers/therapists/counselors or religious people, you may be very lucky and find someone who is very understanding; but I too tried them, and I know if they haven't had personal experience of chronic illness/disability of a spouse, or even just within their family, they are often at a loss to understand the "rolling grief" the well spouse feels as they watch their loved one and mate get sicker... Good luck!
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