hi everyone | Caregiver Action Network

hi everyone

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mmk
mmk's picture
hi everyone

Hi all,

I am new here and I hope this group can help provide support, a place to vent, and a place to brainstorm. Mostly, I hope this group can help me feel less alone. I am the caregiver for my husband. We are both in our mid 30s. My husband fell and hit his head in the summer of 2019, but continued to push himself at work and life so it never healed. Finally, over 6 months later, his work put him on a reduced schedule due to his inability to keep up. With rest and sleep, he started to improve, but he caught covid in March of 2020 and it reignited his TBI symptoms and then he developed Long Haul Covid, which made everything worse. He had to stop working and we are STILL (2 years later) battling with the disability insurance provider to get his condition approved. Most days, he is unable to get out of bed and for a long time, he wasn't able to even communicate with me. I felt so alone and fell into depression, especially being in the pandemic and not able to get in-person support from my friends and family.

Luckily, with the help of an amazing therapist, I have been working to pull myself out of depression and my husband has made some improvements so that he can have a conversation wtih me and I feel a little less alone. We are nowhere near what our life was before the TBI or nowhere near what we thought our married life would look like. We got married in a small ceremony 6 months after his Long Covid and have spent our whole married life dealing with his illness.

I joined this group looking for support from others who understand what it is like. My family has withdrawn support from me. They don't believe long covid is real and that the symptoms are all "in his head" or a result of anxiety. They have mentioned a few times that I should give him an ultimatum of "get better or I will leave". We have asked them to take Covid tests before hanging out together in person, and they have said they will no longer comply with that request, as it is just "enabling" him.

Are there others out there who understand this? Anyone else dealing with Long Covid?

Thanks and I hope to connect with you all

PeterC
Hi MMK,

Hi MMK,

Out of sight, out of mind.   I think its easier for some people who are not close to the situation to pretend it doesnt exist.

I am taking care of my wife of 39 years (we are  both 81)  who suffers from multiple debilitating ailments.  I made an agreement 39 years ago that I would care for my wife regardless of what life threw at me.  She has been faithful and a loving wife for almost 40 years.  Without her love I would not have been able to live such a rewarding life.  I want to be able to take care of her but I worry that as conditions change I may be physically be unable to do whats necessary for her.

We are not physically close to her family so our contact is via phone every couple of weeks.  I think her daughter , who has always been somewhat emotionally distant, would rather live her life and not get involved.  She is aware of the situation but she keeps her distance and doesnt seem to really care about what her mother is going through.

"get better or I will leave".   Wow!, that is cruel.   I dont want them on my team.

Have you ever read the book or seen the film "The Notebook" ?