I'm a newbie, and just wanted to tell my story and say thanks to all of you for helping me cope.
I found this site a few months ago, and it has helped me so much reading everyone's stories. It's so nice to know there are others who can understand. Unless you've been there there's no way to really know what it's like.
I have posted a couple of times, but until now haven't had the time to go into any great details.
After back surgery in March 2010 my mom 87 at the time became very ill with an intestinal virus and nearly died. She was back and forth in the hospital for over 2 months. She developed numerous medical problems, quit eating and went downhill. The doctors finally determined there wasn't anything else they could do so she went on Hospice care and was moved to a skilled nursing facility. She was very sick, and no one thought she'd live more than a couple of days. Well, those days turned into weeks, and weeks into months. After taking away all of her IV's and meds, she began to improve, but her mind was never the same after her surgery.
Up until that time she was very sharp. She had a terrible reaction to the anesthesia, and when she was coming out of it she was having all kinds of delusions, and just went kind of crazy. She could not be convinced that the things she said happened didn't happen.
She was at the skilled nursing facility for a year before moving her to an assisted living facility. During that year she got a lot better, but she has never been able to get around on her own, and is confined to a wheel chair. Mentally she would still have delusions, and had a lot of wild stories. Hospice did put her on some meds to try and keep her calm, which seemed to help some. They finally said they thought she had dementia.
A year and a half ago she was able to move to the assisted living facility. She's done fairly well there, but she's very isolated and lonely. One reason is she's not a joiner, and will not participate in any of the activities. They do have entertainment every Friday, and I always make sure I'm there to take her.
She does enjoy that.
Her dementia seems to really be getting worse the past few months, plus she's had a chronic UTI for at least a year. When she has the UTI the dementia is 10 times worse. They put her on antibiotics, and about a week after she's done, it's back again. They even tried a daily low dose, but that didn't help at all. We try to get her to drink lots of water, but she doesn't drink nearly enough, plus most of the time she's incontinent. They come pretty quick to change her, but I know that sitting in wet Depends doesn't help matters. At this point I'm not sure if it's the UTI or the dementia that causes most of her confusion. I'm very concerned this infection will eventually go to her kidneys.
Most of the time now I can handle her delusions and confusion, but the one thing I cannot handle much more is she insists she's being moved to different places all the time and that she never sleeps in the same room. She says they move all of her furniture and things at night. She calls me all the time saying she doesn't know where she is. Of course in the beginning I'd try to assure her that she's not being moved, and that she's been living there for months. Now it's to the point she doesn't remember that she's been living there, she doesn't like it there, and wants to leave. Her memory is getting worse and worse, and she's starting to realize she's not quite right, and it's scary for her. The sad thing is, there's not much you can say to her to make her feel better, because she doesn't believe anything I tell her.
Well, that's a brief synopsis. I could go on for days with crazy stories. :-) When all of this started I would not have dreamed going on 2 1/2 years later things would be as they are now. I get so mad because I don't understand why people have to suffer like she is. This is no life......it is just existing. I always think when she passes I won't have anything left in me to grieve about. I have already lost my mom, and now just want peace for both of us. Thanks for listening. :-)