I work full time while caring for my elderly mother. She is vision/hearing impaired, has dementia, and is, according to the hospice nurse, in renal failure. She refuses to use her cane or walker and has fallen several times (cracking ribs twice). It's the usual stuff we all deal with as care givers.
My thing is I absolutely hate coming home. The house is depressing and I'm afraid every time I look in on her I'm going to find a dead body. I've been doing this now for four years and have become increasingly isolated and started to drink wine in the evenings more often. I don't like who I have become. I know you all struggle as I do and I just needed to say these things "out loud" to those I hope understand.
Hopefully, your mother won't be suffering for too much longer now. I say that because I feel the same way about my soon to be 93 y/o mother who suffers from dementia & about 10 other illnesses that she keeps bouncing back from. It's all too much after a while, for all concerned. I wish peace for you, and for her, and for ALL OF US going through this stressful situation known as care giving to the elderly. God bless us all.
I suggest a couple of sessions with a therapist (or pastor if you are affiliated with a church). Specifically discuss your fear of finding her dead. It sounds like she is in her last days and acceptance of this will help you greatly.
If you get home with enough daylight, take a walk, get some fresh air and just enjoy some peace. Reflect on happier times. Take a moment for yourself.
Enjoy your wine.
I participate in several online forums (care giving, politics, genealogy, history), read (books have always been able to transport me to different places), play piano when my arthritis lets me, work on the family tree, help grand-nephews with homework or babysit a 5 year old grand-nephew to fill my evenings. Occasionally, I attend an event like an outdoor concert, Christmas tree lighting, kids' ballgame, genealogy society meeting, diner with a group of high school friends, etc. Sometimes I get a fast food meal and take it to the park because I just want to be alone without any on-call responsibility. It is easy to get isolated while care giving so I work on being sure I go somewhere at least once every week. And sometimes I just sleep because I'm so tired.
Do you have respite care where you can go out without worrying about your mother? Even a few hours makes a world of difference. Someone you can call and enjoy a chat for a few minutes or an hour? My group of high school dinner friends are all either care givers or have been care givers. Non-care givers are usually only good to talk about other subjects but that's okay too. You don't have to wait until your care giving days are over to change things. Start making self-care a priority and not just taking care of Mom and paying the bills. Pick something to reduce your stress (like a soaking bath with a good book?) or a movie and just do it.
As a Hospice patient she/you are eligible for 1 week of respite that Medicare will pay for.
You need a break.
And asking for respite is not a "failure" it is self preservation.
Not to sound cold and morbid but for your sanity I'm going to say it. You are on the last leg of this very stressful journey. Get respite and reach out to the hospice nurses. Soon you will be able to rebuild YOUR life.
This feels like a mentally messed up place to be but hospice is like the light at the end of the tunnel for people who have carried this burden.
I hope your mom passes peacefully and you are soon on your way to rebuilding your life, where you won't have to dread coming home and you can slowly begin to socialize again and get well. You deserve it.
I was the last one with my brother before he died in the end of life hospice facility. The nurse called me on my cell to let me know he died the second after I left his room. That’s different than watching him take his last breath though.
I don’t blame you for having wine. I would do that too occasionally. Sometimes a gin and tonic also!
Take care.