Patricia's Story

Please note that this is a personal story submitted by an About.com reader.

Having a girlfriend, boyfriend or long term partner who gets Alzheimer's presents particular problems for those who love them. Patricia wrote to me to tell of her sadness, frustration and powlessness in not being able to influence her boyfriend's care. She writes:

I have been taking care of my boyfriend and best friend since January of 2003 and have seen this disease progress so rapidly .

I have been doing most of the caregiving myself. He is now going into a nursing home, because he can't be alone anymore. The disease has progressed so rapidly for him. I am worn out and only hope that future caregivers, take time for themselves because I didn't and everything has caught up with me, and my health is not good.

The big problem is I have had no say-so in anything. Before his daughters were even sure that their dad would never be back home, they had his home cleared out. Basically, he now would not have a home to come back to. They put him somewhere almost 45 minutes away from me. Things have really taken a turn for the worse for me now, because I am now banned from seeing him. They said that I upset him too much. The only time that I saw him upset at the nursing home was when I started to go home, he would stand at the elevator with tears in his eyes.

I have been trying to find some help, but his daughter has power of attorney, seems to disregard me and treats me coldly. I have to abide by her wishes, but my children are very worried about my having a mental breakdown, now that I can't even see him. If someone else is ever in my position, I feel sorry for them.

I miss him so much, and have been told he is not really ready for a locked up floor, with residents so much more advanced than he is. But , when you are dealing with a difficult family it is impossible to fight.

I am trying several sources now for help. The social worker at the nursing home, department of aging, and so forth. But without any legal rights most will not even talk to me.

It has been the hardest thing that I have gone through. George calls me every day and I have been telling him that I have a bad cold, and that is why I have not been there. He has no idea that I may never see him again.

If someone out there has any ideas of where I can turn to please write I could use any help available.

The reason that the Department of Aging is in on this, is that someone called them (I do not know who) about 6 months ago and reported neglect as far as his family was concerned. They reported that his girlfriend is all he had. Now he does not even have me.

I have come to realize that life is so wonderful when we have our right minds. He is only 65 yrs old, and should we should be enjoying our retirement. But life threw us some curves. My only help to others is to live each day to the fullest and do not let the people who you love down. They need us, and they also need a lot of love and hugs.

I will go on with my life with no regrets, because I know I kept him at home as long as I possible could. But not being able to help him now is hard on me but more important, hard on him.

I just pray that there will be a cure someday for this horrible disease.

Patricia Munda: email me at; pjmundal15@aol.com