After 4 years of caregiving for my 82-year-old mother with Alzheimer's, I am just done. I am an only child, and we were always very close--almost like sisters more than mother and daughter--but now I just so regret bringing her into my home. I have no life at all. Her care is not difficult but it is unrelenting, and the daily grind is getting to me because I am not by nature a nurturing person.
First it was a family friend who had been an aide coming in 20 hours a week. Then her needs got to where I could not leave her alone, so put her in adult daycare, where she is thriving. But still the mornings, the evenings, and the weekends are all on me. I had resisted respite care but started doing it about a year ago, say 4-8 hours on a Sunday every month or every other month. The turning point came last month, when my job asked me to go out of town for 5 days. I knew this was my chance, and I took it--hired the agency we already used to bring an aide in 24x7. I felt like I had been let out of prison, and I hated coming back to the daily grind. Thanksgiving weekend was torment. Now I have to face Christmas and New Year's, too--six solid days of caregiving, listening to her sigh and moan over nothing, toileting her, dressing her, having her ask can she visit her mother, who died before I was even born. It's not her fault she has Alzheimer's but it's not my fault either. And she went so far downhill those 5 days I was away that I don't think live-in care or a nursing home is an option--daycare really delivers the maximum quality of life for her. It's just that I'm too the point that everything she does irritates me, and I know I'm short-tempered with her and scream at her on the slightest provocation. I just want off the merry-go-round. But can't afford unlimited respite. What do I do? I want my life back!
I was going to go out this afternoon, but my mother decided to put up the Nativity scene. I cancelled my plans, because I knew there was a greater chance she would fall. That was disappointing.
One thing I don't like is what I'm becoming -- an irritable old woman. I try not to be. The problem is that patience has never been a strong point with me, so moving at the pace of a snail and saying things repeatedly is very hard for me. At first it was very good at teaching me patience, but now it seems more like it's teaching me how to hold up under torture... Well, it's really not that bad, but you probably know what I mean.
I try to take some respite time every day. As time wears on, it is not so refreshing anymore. What I think would work best for me is if I weren't so alone all the time in doing this.
Funny thing is that my mother was putting away family pictures when she was putting up the Nativity scene on the bookcase shelf. There were pictures of the sons and grandkids and even the spouses of the grandkids. There was none of me. And I thought wasn't it strange that the only person not in the pictures was the only one there for her. It would be so much better if we had strong family interactions and people about. I don't think I'd even need respite if there were people to share the load and revitalize each other.
We never could have kept up with all that if she were at home. I do know the guilt that you feel when you are involved in a decision like this. But in our case, it turned out to be the best decision. (Not that I don't feel guilty at times) I truly believe that if mom were not at this facility she would no longer be with us. Having the nursing care and ancillary care that she is receiving 24/7 has made a difference. She is safe and well taken care of.
Whenever I hear someone say "thank god it's friday" I cringe!
Noooo that means it's the weekend!!
What to do with Mom all weekend..
I was so happy to see that the Day Care was open until noon on Christmas Eve and it's a full day on New Years Eve.. But that extra day home means more stress for both of us..
If only she was a kid and would play with her Christmas presents all weekend! Lol
On Saturday's I try to take her out in the morning maybe the mall.. I bought a wheel chair for her so she doesn't have to walk.. We'll go to lunch or I've been known to bring it with me and eat there.. It helps me to get out of the house so I'm not looking at what needs to get done!
Whatever you need to do to kill time...
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