I'm a newbie, and just wanted to tell my story and say thanks to all of you for helping me cope.

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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. :-)

5 Comments

Hi kjhinshaw I am a newbie as well. I am a part time caregiver to my Mom and a full time caregiver to my daughter with special needs. I also worked at a nursing home years ago as an aide( 25 years ago) My Mom does not have dementia too bad-I do think she has some but it is fairly mild - but my Grandma had Alzheimer's and I remember my residents from years ago with dementia at the nursing home so I do have some experience so I will draw from that well of experience.
My gut reaction is that you need to get her UTI under control first and foremost. I would really pressure the ALF to get on that-maybe go as far as giving her fluids via drip? For awhile at least. And then you can assess her mental state better after the UTI is taken care of. I know easier said than done.
From my experience trying to convince a person with dementia or Alzheimer's that their perception( her being moved) is not reality is like asking them to grow taller. It just ain't gonna happen.
With my grandmother when she would get agitated about sister ( her dead sister) bothering her from the bathroom mirror( she would say-"I see you in there, Gene, I see you watching me-"I gather she thought her reflection was her sister) I could divert her attention away from the mirror by bringing out photos or asking about the blanket she crocheted or the booties she was wearing-anything that held sentimental value to her. Inevitably she would go back to the mirror but it did buy us some pleasant time together.
Also I have heard mention here the compassionate lie. I think that is what it is called. Where you lie to your loved ones to help ease their pain. Like maybe say " yes, mom they moved your furniture around because they wanted to clean your room really well"
Dang it -I keep hitting submit too early! I guess I was done with my response, it seems so inadequate though. I wish I could be more help to you. Blessings to you and your Mom! I hope I helped at least a little bit.
MishkaM...... thanks so much for your response. You're right about the UTI, and it being easier said than done. :-) My mom isn't usually a willing participant, and she complains constantly about having to drink the water. I can only imagine her response to an IV. :-)

You're also spot on about perception issues. When I was new to all this, I'd try, and try to get her to understand reality, but all that did was get us in an argument, and me feeling like the worst daughter in the world. I still mess up sometimes, and fall back into my old ways, but I'm getting better. Dementia is so hard to deal with, and it's so perplexing that someone's mind can see things the way they do.

The problem with my mom is, she is and always has been a pretty negative person, and that makes it harder to try and get her to be understanding.

Anyway, thanks again, I I wish you all the best with your mom, and daughter.
Is your Mom on any vitamins? Vitamin D is so important in fighting infections, believe me, I've been fighting a skin infection for 8 yrs, and I can almost declare victory. I also had chronic UTIs for about 3 yrs. Took a jet to a specialist found out my Vitamin D level was flat lined!
Wow...sounds oh so familiar. I also have mother that was diagnosed this year with progressive dementia. When she fell and I took her to the hospital they had to push iv fluids to flush out all the protiens that built up in her legs.
I suspected something way back in March when she would tell me that people come into her apartment and leave messes. Then she would say that there are bugs crawling on the wall..and ants all over the table. With Dementia they will have delusions. They have mom on Halyperidol...it seems to work pretty well. She's a little more like mom when she's on it. I give it to her at night and it helps her to sleep. She also gets lorazepam when she needs it. And pain meds for her arthritic knees.
I know its hard when we have to decieve them. But arguing with them makes things worse. I have learned my way around a disagreement. Change it up a little tell her you don't know? But you will check for her if she would like? My mom thought my brother was coming down and playing tricks on her. I would call him and have her talk to him. Nothing mattered. In her mind it's logical ...so just go with it. Hang in there...Its rough and it will get rougher. But she will be comforted knowing you are near.

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