sadness, guilt and helplessness
I am also new to this web site and wanted to share why am I here. It seems a good place to turn for understanding. so far some things I have read have given me ideas for a path forward rather than just wallowing in all of the negative I am thinking and feeling right now.
Both my parents are in their 80s and have Alzheimer's. Mom was diagnosed in 2004, dad in 2007. They both have recently been moved to a US nursing home. I live in Europe and visit as often as I can, about every six months.
The last time I saw my parents in October, they were both still at home. However, for more than one year before that, I had tried to get my sisters (who were trying unsuccessfully to care for them) to understand that something else needed to be done.
The parents were a danger to themselves and others. Among other things, they set several fires while cooking and wandered outside miles away from home in freezing cold... once we even found my father walking on a busy highway! Needless to say, every time the phone rang I thought it would be news of the worst. We tried various interim solutions, but nothing worked. Every time we found someone to help, friends, family, nurses, etc. my mother threw them out of the house.
In recent months, my father had a stroke and was taken to the hospital and then a nursing home for recovery. We think he will stay there as he is having lots of trouble with movement and can barely communicate. My mother meanwhile was at home for several weeks, worrying that he had died. She is in better shape physically but seems to forget things almost immediately. We had to keep reminding her that my father was not dead and just recovering in 'hospital.'
Eventually, my mother was placed in the same nursing home as my father. At first I was relieved, but then later, I was horrified. This is not what I wanted for them, not how I pictured their later years, but at least I thought they would safe and receiving specialized care. As I understand it, the nursing home has an Alzheimer's specialty.
The first few weeks were ok. I was told that all the family (and we have many cousins) had gone to visit and that my parents were charming and popular as they were considered 'cute' by residents and visitors alike because they were still in love at their age.
As the weeks have gone by, my mother seems to have become more and more agitated, esp at bed time. My sister says she looks for my father all the time. Sometimes my father forgets who he is and that they are married. After almost 50 years of marriage and sleeping together, I can only imagine that she misses him when she remembers. It's only natural.
Recently, I heard they had moved my mother to another floor. She wanted to get into bed with my father and I think the staff decided it was best to move her. While I understand they have to consider his well-being also, it hurts me to think this is happening to them.
My sister who was very upset, told me that my mother is suffering. Despite medication she receives (don't know what..) to help her sleep, sis says she's not sleeping, instead walking the halls and looking for my father all night.
There is more of course, but this is just the latest.
It just seems that I mostly get bad news and just when I think things cannot get worse, they do. I never dreamed any of this would happen. I don't want them to feel scared or hurt and I certainly don't want them to suffer.
My personal life meanwhile is great. I could almost say this is the happiest I have ever been, except for this. My fiance and I will be married in the next few weeks. Since I want my parents to come of course, we will go to US for half our honeymoon. But even this doesn't really make me feel better or solve anything. I feel like a good daughter would drop everything and go back and care for them, but that is unrealistic as my life is here. I know that, but the guilt is sometimes overwhelming.
I am afraid to see them after the wedding. I want to see them, but last time I visited them at home, their condition affected me so much my boyfriend practically scraped me up and brought me back home. I came back with panic attacks which took more than a month to subside.
I don't want to feel bad this time. I am trying to think positive. I would like to see them and use my time there to help them as much as I can by spending quality time with them, reading or talking to them if they want, showing them I love them and making them as comfortable as possible.
But I am scared. I feel like I will be walking into a nightmare since nothing they tell me on the phone about the situation can really prepare me for the reality. Furthermore, I am scared they will miss me when I leave. We always miss each other when I go and I don't think even this forgetful condition will stop that. I don't want them to hurt because of me too.
This has to be the most horrible disease. It causes so much pain and suffering in so many ways.
I would have loved to see my parents spend their remaining years walking on Miami Beach... instead it's this.
it's all happening too fast for me to deal with it.
Putting it in writing helps a little. Thanks.
J
