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My husband is 64 and I am 56. My husband has been in a facility for 3 years. On one hand I feel very blessed he is still him in general and had out lived expectancy by 3 years. On the other hand I work full time, take care of our home and my daily care as best as possible and try to spend as much time with him as I can. I suffer from lupus so I don't always feel the best and worry about wearing myself down and letting him down. I miss us and the future together we were planning. I suffer from depression, guilt, loneliness.....

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Snugglebear, Bless your heart, your situation is tough! My husband & I (both of us 64 y/o now) have been on his dementia journey for more than two decades since he suffered traumatic brain & spine injuries. It took forever for him to be diagnosed as he was excellent at "show timing." After a non-hemorrhagic stroke in 2014 his decline accelerated & we were told he had about a year left. He is still very much alive & going strong physically although he continues to lose mental capacity & abilities. He is still at home though he does attend adult daycare 5 days a week. Thank GOD from whom all blessings flow!!! Without daycare he would have been permanently placed a year ago. I was too burned out to cope!!!
He retired 10 years ago & absolutely none of our retirement plans have ever come to fruition. I now have health issues which are direct results of stress as a long term caregiver.
Long story short: yes there are younger couples who are dealing with this frustrating, saddening, exhaustingly hopeless situation.
Some days I barely cope, other times things go well. I have friends dealing with this in their parents so they can empathize. I go to counseling weekly which is an absolute necessity. And I read posts on this site for all the great advice & information.
Sending you hugs & healing prayers! Take care of yourself!
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Snugglebear Feb 2019
Thank you for sharing. I have been thinking for a while about getting counceling. I was dealing with my mom who was in a facility with dementia while trying to keep my husband out of a facility and working full time. My mom has been gone for three years now and my husband went in shortly after my mom passed. My husbands started with a hemmoragic stroke when he was 49 and progressed after an extensive back surgery in 2010. Right after the stroke they told us life expectancy was 5 to 8 years. We are on 15 years and still seems physically pretty good. I try to find my blessings where I can and having him this long has been one, hard to go through with him, but he still shines through.
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Often it's not quantity that counts. I suggest you consider replacing some in person visits with daily "touches" that remind DH your devotion continues even in the face of his and your health challenges. Maybe you could prepare a treat (fruit, cookies or a slice of cake) with a simple "thinking of you sweetie" type note and arrange for it to be delivered during the day. You could take the treats on the days you visit and the staff could "deliver" them on the days you cannot visit in person. A phone call during your/his lunch or dinner hour? I take my father a box on chocolates on my weekly visit he can eat on and share throughout the week. Dad still reads email so I try to send him a daily picture of something going on in the community or the family - sometimes it's just a pretty picture someone else has posted on FB.

You need to take care of yourself first so you don't end up in the hospital and not able to visit for several days or weeks. You have to be honest with yourself about where your limits really are, particularly when you have a chronic illness.
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Snugglebear Feb 2019
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That's a lot to deal with. It's understandable that you have those feelings. You have to put your own health as a priority too. I hope that you can get some responses.

Online support is great, but, there may be some local groups in your area. I might check that. Also, is he in Memory Care facility? They may have a support group there as well.

I know that I have met a wonderful lady who is the adult daughter of another resident at my LO's Memory Care facility. She doesn't work an outside job and is free to go to the facility more frequently than I am, so, she spends time with all the residents, including my LO and chatting with her is really inspirational. We give each other support, though, I think she helps me much more than I do her. Her father visits her mom sometimes, but, as she progresses, it's just becoming too difficult for him to go visit her, which is understandable.

Do you know what your husband's diagnosis is?
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Snugglebear Feb 2019
My husband has vascular dementia and has started into alzheimers this last year. So far I am blessed that his personality and demeanor hasn't changed. The facility where he is use to have a support group but no longer.
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Bumping this up

(I'm sorry life hasn't turned out the way you'd planned, it sucks for both of you)
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Snugglebear Feb 2019
Thank you but I am sure life doesn't turn out as many have planned. Yes it sucks but on the other hand I have seen where others have their own hard road to walk. Just nice to know there is someone out there to connect with. Thank you
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