It just never ends. Every day I wake up, my battles are always waiting for me. I go to sleep worrying about money, the next days regular fight with Medicare for a mattress, a damn mattress! I fight for more then 4 PT and OT sessions after the IS’s hospital stay. She’s had stage 3 skin breakdown, bed sores etc. When she broke her femur last month in the shower with the CG at our house, I re-damaged my neck and shoulder while knelt down and picked up a soaped up slippery wife from the tile to get her to the ER. After surgery and a steel rod and bolts in her femur, she ended up in CCU in critical condition. Then having the temporary home healthcare, post surgery, at her home being apathetic as they’re in between her obvious needs and the denials Medicare offers. The constant unrelenting progression of her MS, the loneliness of living in my house for years after her move to a board and care, or how alone I was while being the CG for decades before she left. I look at the future of our finances, my job left so many years ago so I could care for her and our then 7 year old, and see more $’s going out then coming in. The physical damage of my back, neck and shoulders and constantly in pain. My only respite was exercise, which hurts too much to do now and my motivation is hard to find. She is loosing her ability to use the power chair. She can’t pivot transfer now as we can only use the Hoyer so her time out of bed is severely limited. She has to use what little strength there is to use her left hand across her body to drive the PChair now, as her right hand is leaving her. Little things, like the car suddenly having a problem today, even though I bring it in regularly, become magnified for me. I go to see her every day and she’s, understandably detached and I see the fear on her face. I look in the mirror and see the wear of stress on my face. There are times when things build up so much, you just can’t think to reason. Things just slow down to a crawl. The little business I tried to start, stopped 10 years ago, even though I’ve kept it open hoping things at home would change somehow. Now I’m in the process of dissolving it. I’m saying all this here as I’m not comfortable getting into the discussion of it, with those who can’t relate, yet seem to have all the, why don’t you try this, answers. Why don’t they try the, this, that I’m trying to hold together. I know I’m not the only one with such issues, I’m just alone with these problems and thoughts and I’ve never been good at asking for help. I don’t even know if there’s help for these issues. It’s so much harder when you can’t see the way out. Even my family can listen to these issues for just so long before even they step back from things and...I understand why they do. At this moment, I’m somewhere between angry and depressed.
Please know you are not alone. I hope the fishing trip and time away will help. I know its not easy. Keep talking it out with us. And know there are always options. I know it doesn't feel like sometimes but there are. Keep hanging on.
Let us hear from you when you return.
can’t be real, and I read what I’ve written I feel like I’m reading a story about some poor schmuck in a Woody Allen movie. I look at it and it hits me, that it’s really true, this is really the way things are now. Sort of like an out of body experience.
I’ve told my wife and daughter that I’m taking off for 5 days fishing. I don’t really care if I fish or not, I just need a change of perspective. Daughter has been wanting me to take off, while wife just becomes silent. Not angry, just withdrawn.
I am taking an anti anxiety Med, but maybe I should try something else.
Lack of sleep really is deadly. I need sleep.
The $’s we have would be ok if we didn’t have 2 households to support. Of course hers is pretty steep even though it’s not expensive by standards. Im absolutely burnt out. Even I know it, it just seems to be a constant. I just try to block it out, but of course that’s counterproductive.
More then anything though, I gain some degree of hope from all of you people whose thoughts and suggestions I respect. People who are there, or have been there and take the time to offer up their advice. It does help and I appreciate it.