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Shinoda Asked October 2020

Hello. Does anyone have experience in a situation similar to mine? I'm caregiver for my man, I'm 38 and he is 42.

Hello,


Usually when I read forums, it's older people then us or married couples for a long time. We were healthy people until a car almost killed my man, that was 7 years ago. We were together just for 1.5 years, engaged. They suggested removed life support but I signed off, then he was placed in a nursing home but I took him home. 


I don't regret my decision but I certainly didnt knew how hard it was going to be, plus I had expectations (even tho I'm very realistic).
He is amazing and very loving, so no problem in that aspect, but as younger people it's been hard. I get upset when I see people our age happy and I know its wrong, but I can't help it. I had friends but everyone has moved on, especially this year with covid we've been so secluded. His mom died and my family lives in another country, its just us.

funkygrandma59 Oct 2020
I can certainly relate to your situation. My husband and I were married only a year and a half when he had a massive stroke that left him paralyzed on his right side, unable to walk, speak, read or write. I was 36 at the time and he was 48. Our life as we knew it was turned completely upside down.
Over time he learned how to walk again with the help of a brace and cane, and his speech came back a little, where he could say some words and short sentences, but his ability to read or write never did return, other than he could print his name with his left hand(he had been right handed).
I think because he was so young when he had his stroke, he was embarrassed to be seen in public, especially if we went out to eat as I usually had to cut up his food for him, and so opted to stay home a lot. The nice thing with my husband though was that he never stopped me from going and doing things with my friends, as he knew that I was a social person and needed that interaction. It wasn't the same I have to admit, because I would have rather been doing those things with my husband, but it was what it was, and I tried to make the best of it, because I loved my husband very much.
We also were never able to make love after his stroke either, which was very difficult for me in the beginning, but over time(with God's help) I learned to live with that. Thankfully we could still kiss, hug and hold hands, which I'm grateful for. My husband gave me the best hugs with his one arm, hugs that made me feel safe and loved. I have to say that that is one of the most important things that I have learned(or God has taught me) in my journey with my husband, and that is true love is not about sex at all, it's about all the other stuff, and being there for one another in whatever way you can.
But we adjusted to our "new normal", and life went on. And then over time my husband's health started to decline more and more each year, presenting us with yet even more challenges that we together faced head on. Was it hard? Of course it was, but we were in it for the long haul, together.
Fast forward to 2018, when my husband was diagnosed with vascular dementia and later ended up with aspiration pneumonia in ICU, and ended up with sepsis and septic shock, and almost died while there. He ended up eventually coming home under Hospice care, completely bedridden, where he remained for 22 months until he just recently died on Sept 14th at the age of 72. He was such a fighter throughout all of his challenges, and I was honored to be by his side the whole 26 years of our marriage.
So I will say to you, God bless you for stepping up and taking care of your man. You didn't have to that's for sure, but that's what true love does. And yes it's hard and will probably get harder as time goes by, but I am praying that the good will far outweigh the bad in the years to come for you. I feel I must also say to you, your decision to stay with him, should be out of love and not obligation. There's a big difference in the two you know. Perhaps something for you to ponder. Best wishes.

CTTN55 Oct 2020
What about your own future? Are you able to work?

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Countrymouse Oct 2020
Shinoda, I'm afraid you'll think me very cynical, but my first response to reading your post is that many young people in your situation would have backed away; so perhaps this is one reason why you're feeling rather alone in your challenges.

It is not wrong for you to regret that you and your (still young) man are not living the life that many people of your age would, and do, take for granted. How can you not? You have both been robbed.

You don't give your location on your profile, so we've no way of suggesting where you might find resources and groups near you to reach out to. One way of finding people in a similar situation to yourself is to research groups related to a particular injury or condition, for example long-term brain injury or reduced mobility. Could you say a little more about what your man's care needs are, and what impact the accident is still having on him?

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