I am FastEddie, although I am not so fast anymore. My wife and I are 75. She has Parkinson’s and has nearly lost the use of her right side. She can’t walk even with a walker. I have been her sole caregiver for over 5 years. She lives in bed and we use a bedside commode.
Like most of you I’m sure, I learned “on the job”. Until last November I cared for her at home. As her Parkinson’s has progressed it became more challenging. I tried to find some help with caregiving but that coincided with the COVID epidemic and there were no caregivers available in the rural area we live. I tried to “soldier” on it just plain got harder. Over time my own health began to deteriorate. But I was not seeing how badly. Her care was everything and I put everything I had into it. Physically I lost over 30 lbs, I was weak and fighting chronic back pain from lifting my wife in and out of bed, I began overusing pain medicine so I could “get by”. I was sleeping less and working more. Mentally I was exhausted, and slowly becoming delirious.
Although I have no memory of this, I stepped out onto the deck at 2 a.m. on a freezing November night and collapsed. Fortunately my wife woke up and called out for me and when I didn’t answer she called a neighbor who came and found me, and both my wife and I were taken to the hospital in an ambulance. I had gone from delirious to full-blown delusional. In the hospital I was in so much emotional pain over my “failure” that I wanted to die and was making pitiful efforts trying accomplish that. I was transferred to a mental health facility for treatment and evaluation.
My wife was not able to go home without a caregiver so she was able to enter an assisted living facility. When I was released from the mental health facility I joined her here. It became obvious that we could not afford to pay for being in assisted living for very long and if we returned to our home we could not afford paid home care for her. Neither was I strong enough to take on sole caregiving again especially as her care needs increased. That was over 8 months ago and I have spent that time getting the house ready to sell, getting better with therapy via zoom. Slowly I am coming to understand what happened to me. I joined this chat so I could find out how others have coped and benefit from the experiences and wisdom who are dealing with these issues than I am.
One thing I would like some advice on is that, even with all that happened, my wife only wants me to care for her. At first she was willing to try and let the caregivers here in the assisted living facility help with transfers, meals, etc. but that didn’t last long. So here we are, we have lost our home, almost all of our belongings, and we are in an assisted living situation that is absurdly expensive, and the only person she will allow to care for her, or make her meals, etc. is me.
After the house is sold we are moving to a different and a much better rated assisted living facility with much better caregivers than this place. I am hoping to “turnover a new leaf” and step back and allow the professionals to do more for her so that I can do those things for her that they cannot, like be her loving companion, and bring some joy and laughter back into our lives.
Has anyone found a way to do that?
