Hi all, just found this site and thought I'd introduce myself and see if anyone else is dealing with similar challenges and might have advice or be interested in connecting for mutual support. My wife suffered an ischemic stroke nearly 5 years ago at age 43. She has recovered to the point where she is mostly self sufficient around the house, but has no use of one hand, walks slowly and with difficulty with a brace and cane, and is not certified to drive (and is unlikely to ever be). That leaves me as the caregiver, the breadwinner full time, and also responsible for pretty much everything at home (shopping, cleaning, cooking, finances, all transportation, etc).We have two kids, aged 10 and 13, so most of the parenting falls to me as well. This is very difficult but would be manageable, except for the fact that the combination of cognitive effects, depression and antidepressant medications has left my wife with emotional blunting, so is unable to provide really any emotional support or meaningful intimacy of any kind, leaving me feeling constantly profoundly lonely even though I am physically present with my family. The only local support group for caregivers meets infrequently and consists of entirely people 20+ years older with different challenges. It seems to keep getting more difficult as I get further and further away from having any emotional support from anyone, but still so many responsibilities and no way for it ever to end. This holiday break was especially difficult, as in over 5.5 hours of driving, I was feeling overwhelmed so didn't initiate any conversation with her, and as a result she spoke a total of 10 words to me over the entire trip. That really drove home the situation I'm in - unless I initiate and sustain conversation, companionship, etc., it's just not going to happen, and that leaves me resentful and disinclined to do so. It's a catch-22 and I feel as if my marriage is disintegrating, despite that fact that I am working myself to the bone to keep everything going, Anyone else in a similar situation or have any advice? Thanks! Oh btw, I'm 47 - was 42 when it happened.
Wow! I'm so sorry this happened to your family!! I don't have any advice but I just wanted to let you know that I hear you, and that you aren't alone. Please stay in touch and you will find that you have friends here.
My situation is somewhat the opposite as I am a couple of years from retirement (which I have SO been looking forward to) and am now in the process of adopting grandchildren, the youngest of which is 6 years old. Good-bye retirement!!
But I have found common ground with others on this site, even though 99.9% have very different circumstances, because, after all, we are all caregivers! I have gained so much insight from the wisdom of other caregivers on this site, and I find the compassion and empathy to be very uplifting spiritually.
There was someone in a similar situation as yours. His wife, not very old, in her 50s I think, also had a stroke and couldn't do much. He had to run his business and took care of his wife. I don't remember if they had young kids, or any kids. But he was so burned out and was at a breaking point, and didn't know what to do.
He ended up having to put his wife in a nursing home so he could work and take care of both of them. He contacted an attorney who helped him get his wife qualified for Medicaid otherwise he couldn't afford the nursing home for his wife. It was tough but he did it. He could go back to being her husband instead of her burned out caregiver. If you're interested in reading his posts and all the replies that other posters wrote to him, I can try to look for the link.
Let me know.
Just about the kids – their school had a head lice episode, following which the two boys had number 1 hair cuts all through primary school, because coping with the potential laundry was just too hard. Family life certainly wasn’t easy. My mother went to help initially, but my BIL is a very abrasive personality (so was mother, and it was also a very stressful situation), and mother ended up home in this state after not too many weeks. After that, mother used to go for a visit every year, to do all the mending that had been collected up.
They tried to put my sister into a Sheltered Workshop for the Disabled, when she first recovered from the stroke. She still gets angry about it. I have enough experience of all types of supported living to understand the problems of interesting your wife in aged care support groups. Unless she is running it, it isn't a good idea.
My sister went on to give her own take on things. She said ‘Get a Life’ (in caps - like I said, blunt). She said work out what you can do and make yourself improve until you can do it.
My BIL started up his own business after she qualified as an accountant, and she did the finance/ accounting side of it (as well as her own small practice). Being involved in the business together probably helped to keep them together. They are now very well off indeed. She said that the stroke had destroyed her life, and our younger sister (who isn’t well off) went off her tree about how she wouldn’t mind having the money they now have, she didn’t see the situation as ‘destruction’.
My sister also sent her very best wishes and hope that things can improve for her and for you. And so do I. I'm sure that younger sister would too, but she isn't in this loop!
I would love to hear back from you, Margaret
Each year in November we celebrate our nation's caregivers with National Caregiver's Month. A time to bring awareness to some of the challenges caregivers of all ages experience and bring to light resources they may not be familiar with. Have you considered getting some respite care both for your wife as well as yourself? I would encourage you to reach out to a local advisor who will be able to offer you local resources you may find helpful now and in the future.
Hang in there! There are resources for you.