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Interested in how other caregivers survive

Caregivers | Last Active: Apr 5 6:13pm | Replies (90)

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Hi Scott (@IndianaScott). I'm 79 yo husband caring for 75 yo wife who struggles with a host of serious health issues. I haven't heard of Lewy Body Disease till today. She hasn't been diagnosed with that. I'm disabled with cerebellar ataxia but I push myself to exercise as much as I can. Dealing with depression (lifelong) I see a mental health counselor and receive Transcranial Magnetic Stimulation (TMS) to help me cope with increasing isolation and discouragement. She refuses to go to an assisted living facility. She wavers between mentally sharp and mentally adrift. She's in constant pain. A major concern is her COPD. Another is PTSD from spending two weeks in a dreadful rehab facility after more than a week in the hospital. I'm doing the best I can but it's a real struggle. I have no intention of leaving my dear wife, but I wonder if you have any thoughts about what I might do.

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Replies to "Hi Scott (@indianascott). I'm 79 yo husband caring for 75 yo wife who struggles with a..."

Good morning, @srhappy I'm sorry for your circumstances but pleased you found this community! I found Connect when I was searching for something, anything, to help me cope with the intense isolation that comes with primary caregiving.

Caregiving is a tough load to haul in life and I wish I had some stellar advice for you. I've not found any magic potion to help, but here are a few things we did that helped my wife and me.

We found home hospice care to be a godsend for us and was truly the first patient-centered care we found for my wife. They were especially adept at her pain and anxiety management needs. Neither of these was managed as well for her prior to our use of home hospice.

My wife's breathing was a constant concern so I worked to get her to keep her pulse-ox meter on her finger almost all the time. It really helped me with my monitoring of her.

Regarding my own struggles with my depression during my wife's journey, I tried (with varying levels of success) to take "minute vacations" where I'd ask Siri or Alexa to set a two-minute timer and I'd send that tiny bit of time trying to zone out and calm myself. I also tried to train myself to check in on Connect sometime each day. It helped me feel less alone and even if all I did was a quick vent, it did really help me.

One of the resources I found helpful was the Rosalynn Carter Institute for Caregivers site. You can find it at this link: https://rosalynncarter.org/ I like their approach to caregivers and not just caregiving.

Please feel free to let me know more of your thoughts and questions! We are all in this maelstrom of caregiving together, even though we so often feel alone!

Strength, Courage, & Peace