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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.

A few years ago, my step daughter who is bi-polar came to stay with us for a few weeks. She was in manic mode at the time and acting out something fierce. My husband was at work all day (I wasn't working at the time), so it was she and I all day long. She was not taking her medication and doing things like walking on our outside wall which is 9' high and about 7" wide at 2 am, teeter-tottering on the thing and falling off, etc. I was a nervous wreck. Every day I'd wake up expecting to find her dead body in the bed and it was just terrible. I only had to deal with the situation for a few WEEKS, and here you are dealing with the stress of finding your mother's dead body (potentially) for a few YEARS now! I don't blame you for drinking wine. It's a miracle you aren't a drug addict by now.

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.
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Reply to lealonnie1
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There is no shame in having a glass or 2 of wine in the evenings just to wind down. (it is having the entire bottle that becomes a problem).

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.
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Reply to XenaJada
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tevincolorado Dec 12, 2019
Please not a pastor for counseling. They are not trained sufficently for really good counseling.
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I haven't gotten to the point I dread coming home yet, but I have a lighter load than a lot of care givers on the forum. My mother has good general health, mobility issues, MCI with short term memory problems and some disorientation over the last few months. Yet I identify with the fear of finding her dead. I had a bad night with my asthma and overslept the next morning. When I looked at the clock and saw it was 2 hours later than Mom and I usually get up and going I panicked because she hadn't woke me up to help her out of bed and I wasn't hearing anything over the monitor. She was sitting up in the adjustable bed reading her book, just fine. And yet, at some point I want to find her dead in that bed. I pray she passes peacefully in her sleep without pain or fear.

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.
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Reply to TNtechie
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Talk to the Hospice nurse or Social Worker arranging Respite.
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.
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Reply to Grandma1954
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I’m sorry you’re going through all this. Is it time to have her move to a nursing home where they can watch her during the day and you can visit? I know it might sound awful, but you wouldn’t have to worry about her falling when you’re not there or passing And finding her. after a hospitalization, my husband went to a nursing home under hospice care and I do feel less stress because I don’t have to worry about bathing, dressing, toileting, etc. I do visit every day and help him with a meal. Talking to a therapist helps greatly. You probably also want to talk to your PCP. You sounds depressed and anxious and medication might help. I know my PCP said exercise is the best thing to help with stress, but caring for a loved one at home leaves no time for self care. It’s an awful disease that carries so much stress with it. Best wishes.
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Reply to Franklin2011
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I work and care for my mostly bedridden husband. I get up in the morning in a pretty good mood but when he starts ordering me around, the good mood goes bye-bye. He’s not that demanding, but even though I had three months off while he was in rehab this summer, I am still worn down and out. I’m tired of the dirty diapers, the bathing, the laundry and the bed changing then having to do it all over again day after day. The house is a mess and I’m hitting the booze too often as well. I feel ya and completely understand.
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Reply to Ahmijoy
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PeeWee57 Nov 27, 2019
Yes, it's the "day after day (after day after day...)" that gets to me. You HAVE to have a routine, and pretty soon the routine drives you bonkers because nothing ever changes. It's like the "Groundhog Day" movie.
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Please vent as much as possible, it's like a release valve. You have been doing this for four years, no wonder you are feeling the way you do.

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.
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Reply to ExhaustedPiper
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I do understand, wine helps me too! Cheers! Vent Away!
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Reply to DollyMe
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My mom is now living with my brother and SIL. When she was in my home I had the same fear of finding her dead. It’s what depressed me the most. I really don’t think I could have handled it. Just watching someone decline is horrible.

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.
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Reply to NeedHelpWithMom
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