Goodbye my Friend and the love of my life

[Racket_Man]

Was there something specific you liked to do together? It might provide you with an outlet. Staring at the walls on your time off is not a good thing.

The problem is is that for the last 5 odd years she has been mostly house/chair bound. She quickly lost the ability to care for herself AND to be able to perform the most simple everyday things by herself. Bathroom calls for example. Even for that she could NOT do this on her own. The reason for that is she got REALLY unsteady walking and fell face first several steps from her chair, busted out 2 or 3 teeth and was like the "Help I've fallen and can't getup" Life Alert commercial lady.

The disease caused sever loss of muscle movement/coordination/function, she lost most of her speech abilities about 2 or 3 years ago, lost walking ability 3 years ago unless someone was helping her (as in with either a Gate belt or another person literally having their arms wrapped about her) or being in a wheelchair.

We would see a movie every couple of months (unless there happened to be a small cluster of good ones like during the Xmas holidays) but the last 3 years or so that was a "big production number" even when she could walk somewhat steady, getting up and down just 3 porch steps + 1 door step was difficult at best (Gods help me IF she was tired).

My life has been so structured for the last 5 years by me having a fixed work schedule, her going to a "rehab" center 2 days a week, her having a CNA come in 2x a week for bath assistance, things like this---- and that is the real problem TOO much structure BUT that structure was needed for things to work out smoothly for all parties involved -- meaning me, her daughter, the rehab center, the CNA/nurse/social worker visits, etc. all parties coordinating times of the day when things needed to happen so things DID happen that she needed to survive.

[csquared]

If I may make a suggestion on something to do. Work on putting together an annual fund raising event, in her honor, to raise money for "degenerative brain disease" research.

[Sapphire Silk]

So you need a new structure, a plan for what to do with your time.

That might involve some volunteer work. You might find its similar enough that it meets your inner needs.

Did you talk to your hospice nurse about bereavement services?

[RootedPhoenix]

*hugs Racket_Man*

There are always loads more hugs where that came from. <3 Prayers for you and yours also.

[Racket_Man]

Went to my first movie alone (in years) today and it was real strange. No one sitting (in a wheelchair for the last couple of years) next to me, no one to help eat the popcorn, no one to look over to and notice them asleep (sometimes not very often though)

Strange feelings at home. I feel like a bit of a stranger/trespasser in my own "home" (her house she bought years before we even met though I have lived there a little over 9 years and yes I did help pay about half of all the bills).

When I am sitting on the couch I still look over to "check on her" (mostly out of habit for doing it for the last 4 or 5 years), I still seem to wake up on Mon and Wed. mornings about the time I did when she had the twice a week rehab bus pickups.

[MoonCat]

It's a new "normal" and it's going to take a while to get used to it. When my brother passed away I kept feeling like he was just out of town or something. It was 2008 and it still feels like it just happened.

{{hugs}}

[Mytical]

I don't know what you believe, and I hope I do not offend. It is little comfort right now, but beyond this life there is no pain or suffering. When you two get reunited they will be healthy and happy, they are just waiting for you to join them, and will look out for you while you are apart. There will be no pain for them. If you need an ear I am here. As many are. I am sorry for your loss.