I am a very sad caregiver who has posted on this site before…
Hello as I noted, I have posted on this site before… my fiancé and partner of nine years has long Covid for the past four years and it has changed him totally- he is on disability and has gone from a very busy active man who fished and golfed and worked hard to sleeping on sofa good part of the time and can get winded just working in the yard for 10 minutes he was always a very physically, strong man he has lost so much weight and muscle mass. It just saddens me so.. The neurological changes are very hard for him .No fishing or golfing for over three years. it is such a life-changing illness, which unfortunately, NOBODY understands or talks about unless if they know somebody who has it . Even family member who I love just do not get it.… I also care for my 89-year-old mother, even though she lives in a senior facility she has dementia, and I have always cared for her through life and through all of her struggles. I think I just want to know does anybody else feel so incredibly empty? Sometimes I keep trying and trying to find an answer or do the right thing for my fiancé, but I realize I really cannot .excuse if this is a rambling note. Just as an FYI I love my fiancé Jeff dearly we are in this together and I love my mother dearly, but I am just so so tired thank you for listening.🦋
Karen
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What do you do to take care of yourself? That is critical. I hear your pain and want you to know you are not alone. I believe that God hears you if you seek him. I am praying for you to have strength during this difficult time.
Big hug. It's not easy being a caregiver. I've done it for parents, brother, uncle, friend, mother's friend....and cousin. You do the best you can, always try (I've failed at this) take care of yourself as best as possible....and I always tried to remember the serenity prayer.....Accept the things you cannot change and Accept the things you can.......and pray
Thank you nrocpop - your kind words for strength mean more than you may know. I am trying to keep the faith ! Best to you as well:)
Oh my - take care of myself ?! Ha. I don’t seem to know how to —- I never have known how to through the years …. But I do try to carve little pieces of time for me , where I am not always worrying or nervous . I get glimpses of calm unfortunately they do not last long . I turn to God - I know he cares and is looking out for me - even if I do not always feel it . I also try to notice “ signs” ….. from God or from my father who passed away 9 years ago …. I am 56 …….. my caring for others has always been to a fault —— thank you for kind words . Well wishes your way too —— obviously you struggle or would not be on this site 🦋
The serenity prayer hangs in my kitchen 🙂
Everything you are going through we are also. Not what we expected retirement to be like.wife has gastroperesis, glomus tumors, parkinsons ,diabetes and losing all of her teeth on account of lack of correct food. Also lost 70 lbs. I know this is hard to believe but it is the truth. Forgot several anxiety. Tom
Hi Karen, I hear you! I’ve been married to my 79 y/o husband for 25 years. He has undifferentiated pleomorphic sarcoma. In the past three months he has been losing his battle. He is no longer the funny, loving husband he once was. He was so strong and my rock. Now he is like a helpless child. His memory is fading and daily tasks are foreign to him. It takes a toll. It sounds like you have no time for yourself. My heart goes out to you. It’s easy to lose yourself in all of this and feel empty. I feel empty too 😢
When I started my caregiving journey, "Man's Search for Meaning" was one of the books that really helped me. Another helpful one was "The Book of Joy," by the Dalai Lama and Bishop Desmond Tutu.
And, to @karen8, it's hard to accept that everyone you know and love doesn't "get" what you're going through...at all. It makes it lonely, and it made me a little angry at first.
Try to get out when you can. Even short breaks can help.
Try to accept that the people in your life have their own perspectives. They'll never understand what you're going through and the sacrifices you're making. You'll be happier if you can find it in yourself to love them anyway.
Reading about your partner reminded me how I felt 10 years ago before I found out that I had Waldenstroms. Has he had a blood test? Maybe it's more than long COVID, although that's bad enough. Hope he and you get some relief soon.
@babbsjoy - I loved your reply so much- especially about finding joy and meaning in the small things- like a flower or butterfly. Beautiful! And I will try this more. Word of caution to those who try and can’t- it’s not bad to get on medication for yourself if necessary. I got on anxiety/depression meds as soon as my son was diagnosed. In the past I’ve occasionally needed them - and as soon as I talked to my docotor about his diagnosis -she said what do you think about restating these? This is huge and He needs you to be ok too…