Advice for New-ish Caregiver?

[lisakimberly]

My beloved had an unexpected dissection of this carotid artery leading to a massive right hemisphere stroke (hemiplegia, hemi-neglect, visual impairment, etc- language & cognition good- short term memory slighty affected, now impulsive, judgment not great). The neurologist has not been positive about the future. He was sent home after a short stint at Rehab because they said he plateaued. This was about 4 months after the stroke, which happened in the first week of March 2009, while we were away on a scuba diving holiday - no the diving had nothing to do wtih it you panic artists - (right after seeing his GP and getting a clean bill....).
Any how fast forward to November 3, nearly 8 months later, and I find myself working full time, coming home to take care of him, and having a hard time with it. I replace the daytime caregiver. Our life is upside down (he is wheelchair bound). We were active togther- scuba diving , hiking, walking the dogs, skiing, etc. I don't want to resent him or be ungrateful for what I do/still have. I know his impatience was a character attribute before (we were together nearly 17 years when this happened) but some of his behaviours are different now. Is there any one out there in a simillar situtation? Not able to find/go to a local support group, and thinking that's probably hat I need about now, No life for myself, haven't painted since February, hardly get to ride my horse as he can never be left alone.....advice? I am going to osteopath, therapist, acupuncutrist, now adding shiatsu -trying to maintain my physical/emotional self b.c. if I get sick he has NO ONE ELSE -his dad's 90 and his siter lives out of town, his mom's deceased and his kids are in uinversity out of town. THANK YOU

p.s. yes I have read & own "the brain that changes itself", & "my stroke of insight"- we are talking almost the whole right brain here- only occipital and frontal seem unscathed, mostly....

[Gene]

Originally Posted by lisakimberly

My beloved had an unexpected dissection of this carotid artery leading to a massive right hemisphere stroke (hemiplegia, hemi-neglect, visual impairment, etc- language & cognition good- short term memory slighty affected, now impulsive, judgment not great). The neurologist has not been positive about the future. He was sent home after a short stint at Rehab because they said he plateaued. This was about 4 months after the stroke, which happened in the first week of March 2009, while we were away on a scuba diving holiday - no the diving had nothing to do wtih it you panic artists - (right after seeing his GP and getting a clean bill....).
Any how fast forward to November 3, nearly 8 months later, and I find myself working full time, coming home to take care of him, and having a hard time with it. I replace the daytime caregiver. Our life is upside down (he is wheelchair bound). We were active togther- scuba diving , hiking, walking the dogs, skiing, etc. I don't want to resent him or be ungrateful for what I do/still have. I know his impatience was a character attribute before (we were together nearly 17 years when this happened) but some of his behaviours are different now. Is there any one out there in a simillar situtation? Not able to find/go to a local support group, and thinking that's probably hat I need about now, No life for myself, haven't painted since February, hardly get to ride my horse as he can never be left alone.....advice? I am going to osteopath, therapist, acupuncutrist, now adding shiatsu -trying to maintain my physical/emotional self b.c. if I get sick he has NO ONE ELSE -his dad's 90 and his siter lives out of town, his mom's deceased and his kids are in uinversity out of town. THANK YOU

p.s. yes I have read & own "the brain that changes itself", & "my stroke of insight"- we are talking almost the whole right brain here- only occipital and frontal seem unscathed, mostly....

I wish I had an answer for you. Actually I have a question which might or might not be an answer. Are there online support group(s) available? I have found great comfort on selected destinations on the internet.

I send you and your husband love and my hope for a solution for both of you.

[lisakimberly]

THank you. I haven't found anything yet, just self-help quizzes and the like.

[rei]

you might find something here: The Caregiver's Home Companion - Resources ?

if i were in that situation i'd be struggling emotionally. for several reasons. my only suggestion might be to hire someone who will supplement your caregiving. you said you have someone to help during the day, maybe there is someone in your neighborhood who you could pay to take a shift? or find a professional respite care worker?

other sites to try: Caregiver.com - For caregivers, about caregivers, by caregivers, Caregiver Support - How to Care for Yourself While Caring for Others, Preventing Caregiver Burnout: Tips and Support for Family Caregivers, National Family Caregivers Association (many of these are probably about caring for seniors, but i'd imagine there are similarities.)

good luck! respite care is probably a good option, they may offer later shifts as well (or weekends).

[ar81]

I have no experience in that.
I can only offer you my support on the task at hand.

[Tanja]

Originally Posted by lisakimberly

I find myself working full time, coming home to take care of him, and having a hard time with it. I replace the daytime caregiver. Our life is upside down (he is wheelchair bound). We were active togther- scuba diving , hiking, walking the dogs, skiing, etc. I don't want to resent him or be ungrateful for what I do/still have. I know his impatience was a character attribute before (we were together nearly 17 years when this happened) but some of his behaviours are different now. Is there any one out there in a simillar situtation? Not able to find/go to a local support group, and thinking that's probably hat I need about now,

I'd take Gene's advice and try to find online support groups if you can't find one in your local area. I'd advise also, as rei suggested, maybe hiring someone twice a week for 2 hours so that you can have some time off.
I was in a similar situation 10 years ago, I had to take care of my mother who was bedridden and I did it all by myself, I wish I had looked for some support then.

I wish you and your beloved a lot of strength and hope you find a solution.

[openeyes]

Originally Posted by rei

respite care is probably a good option, they may offer later shifts as well (or weekends).

People often put ads on craigslist for sitters/nurse assistants for $8 to $15 per hour depending on shift and if one is a certified nurse assistant or not. Any shift can be covered, just ask.

[marinik]

My dear I have had this happen around me many times, but have never been in this situation myself. I can only tell you that those who hired help to releave them of the non stop care handled it much better that those who gave up all their time to take care of a loved one.

As much as we love someone we need space for ourselves and the feeling that our lives haven't stopped because of their illness. You need to continue with at least some of you activities that make you happy or feel good in order to be capable to give to others. You need to take care of yourself to be ready to take care of him - physically and psychologically, emotionally, socially... spiritually in every way possible.