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.

[Gracestars]

Like the others here I haven't personally experienced this situation but I did work as a counsellor for a carers organisation so I can give you advice from that perspective.

First off, you've done the right thing reaching out for help and support. As much as right now you have to care for your husband by yourself, it is important not to feel that you are alone. There are many carers like you out there, and it is highly likely that most of us will become a carer for a loved one at some point in our lives. I have no idea what services are available in the US, but here in Australia and in the UK also there are organisations set-up to support the carer, not the cared-for. They can assist in offering free counselling to talk through some of your concerns with a specialised professional and link you up to services like respite and carer support groups. Does anything like this exist where you are from? A quick google search left me with nothing, but maybe you can do a better job of finding something. In the meantime, here is a link to Carers NSW (the NSW peak body for carers) at the very least I hope it can offer you some helpful reading material. Carers NSW

Respite, if you can access it, is a wonderful thing, as rei suggested. It is so important to have a break from caring and to still feel like you have a life of your own. I read that you are having a number of alt. therapies and the like - bravo! Keep it up if possible. Self-care is so important and don't ever feel guilty for wanting it.

I suspect you are also grieving the loss of your husband's mobility and ability to participate the activities you used to do together. If this is the case, remember this is normal and understandable. A counsellor might be helpful in this instance and as mentioned support groups are another great resource.

I wish I could give you more specific help re the services available to you, but I can't I'm afraid. If you want to air any thoughts or concerns however, please do and I'll do my best to help you here.

G.

[aggie]

my heart goes out to you.

over the past year and change i have experience similar situation on a different level.

my mom, who was very independent to the age of 80 suffered some serious health problems in succession culminating with small strokes. she had been in assitsted living and ultimately needed to go to a nursing home.

i am not saying this is what you should do. i wish i was in a position where i had the w/c friendly home and didn't have to work and had the finances to keep her at home. my brother in california (i am in florida) would take her, but he has no concept of what it would entail.

during all of this, on one visit to my mom before she was moved closer to my husband and i (he has been terrific, by the way) suffered a small stroke due to his medical issues, which thankfully was not serious, for it was almost missed because of what we were caught up in.

so it was visit mom in rehab and then go the hospital to check on my husband.

i thought i was going to lose it THEN.

to try to make a long story short, i almost did lose it all and my marriage because i forgot about my life and who i was.

it was due to a lot of guilt. it was also due to self pity, an excuse to do only what i needed to and neglect everything else.

it is good that you are keeping up on your own well being, but sometimes you are so close to a situation, you don't realize that you may need more.

what you are doing is admirable and keeping your husband close is wonderful.
if your choice is to keep him home, than i encourage you, as others to seek out your resources. i worked very hard to get the benefits my mother was entitled to help pay for her care.

you may be able to get benefits for in home care as well, so that you can get the down time you need. just because you are present, doesn't mean you can't have someone there to help.

my thoughts and prayers that you find the help you need. good luck.