Hi all. I have been lurking here for some time now, reading your stories and drawing strength from them. Now it feels like it's time to make contact!
My story - well Mum was diagnosed with AD about 2 1/2 years ago. She has had a relatively rapid decline especially in the last few months. In less than 3 years she has gone from living indepndantly in her own home to now needing a high care nursing home. (She has spent most of the last 2 years in a low care facility - sort of like AL?) She sort of recognises me sometimes but not always. Needs help to dress, eat, everything really. Most of this has been in the 2-3 months. She has had every test the doctors can devise and they have no explanation for the decline except that it's just the way the AD is progressing for her. I still feel I'm reeling from the shock of all this. I can't get over the fact that just 3 months ago Mum & I were going out shopping and having coffee and now she can't get a cup to her lips without help.
Has anyone else experienced this sort of rate of the disease? Most stories I hear are about the long slow decline, not this jump off a cliff!
Thanks for listening.
Welcome Mumandme. Glad you decided to come join us. From you lurking you know it's a great group. Drag up a chair, grab a glass of wine, and stay a while. Oh, and here's your first towel
I think my Mom is in her fourth year, two years since her diagnosis. Her's has been a slow decline and most days she still manages ok in AL. If strong will has anything to do with it, her will to care for Dad has kept her going. He is about 9 years into Vascular dementia. He has had a few step downs (which is typical of vascular dementia) but for the most part maintains the status quo.
My grandmother did as you described with your Mom but it was a result of a massive blood infection and long stay in the hospital. She never recovered her previous level of cognitive awareness. She went from home with a live in care giver, to the hospital, and then spent a year bed ridden in a nursing home.
I do know each loved one progresses differently. I am sure they have done a urinalysis to check for a UTI. How old is your Mom? I am truly sorry you are having to deal with this. I do hope you find answers to your questions.
I will keep you and your Mom in my thoughts and prayers......
Firstly thanks for the towel - will probably need it!
Mum is currently in hospital - has been for nearly 2 months - they have tested & retested for all sorts, as they thought she might have infection (UTI or other) or something else like a small stroke - but nothing. That is what is so very frustrating. And for Mum too - even though she can't express it in words. Mum is only 77 & has physically always been really fit - could walk for miles. Probably still could if we let her! - although I'm not sure where she would end up - the thought makes me shudder!
Your situation baffles me Mumanden. That kind of rapid decline is usually accompanied with some medical emergency. She is about the same age as my Mom (79) and Mom is also the physically fit one. She can outwalk me. I shudder to think of the day she decides to wander!
Hopefully the doctors will come up with some explination. Is her physical heath deteriorating along with her cognitive abilities? What are her symptoms?
I am sure this is frustrating to you. Not to know what is going on must be difficult. Keep us informed... and keep typing. We may not have the answers but we have good ears and great shoulders.
I know with my Mom anytime she has something going on medically it really brings her down with her cognitive abilities. The confusion agitation is at a higher level then ever. Currently my Mom is in the hospital with an infection in her bone of her foot. Prior to us finding out about the infection she was really going down hill fast. I could not understand why the big decline so fast. It was the infection that was brewing inside her foot. It showed no outside appearance although she is a diabetic so her feet and that particular foot has always been under the care of her Podiatrist. Two weeks ago she fell. When she fell it caused trauma to that foot. Which in turn the ulcer on the foot opened up causing us to take her to the Doctors. She ended up in the hospital and is now being treated for Osteomyelitis of the toe. I believe if she hadn't fallen the infection would of continued to fester inside her. Infection really plays a big part in the elderly for there confusion and agititation. You said she is in the hospital now? I imagine they have taken all kinds of test to check for infection? It really is a mystery as to why she has declined so fast? I hope they determine the cause soon.
Welcome to the board this is the best place in the whole world to come to for any questions or just to discuss your thoughts!!
Thanks for you replies. Sorry I have been off the boards for a few days, between juggling work, family and regular trips to the hospital (yes Mum is still there) there is not much time left over!
I know, as you both, Deb & Pauline, have said that it is baffling. When Mum went into hospital the assumption by everyone, care staff, doctors etc, was that "something" had occurred to make this all happen. So many tests have been done, repeated urine and blood tests, ct scans, xrays, you name it. & nothing really. There were a few things that they thought weren't quite right but when they were back to normal, the bahaviour didn't change, so they weren't necessarily connected.
I don't know, I guess the hard thing is to feel I've kind of lost Mum so suddenly. I was expecting a longer time. Now I don't know.
The other thing is that when she has a slightly "clearer day" she also has more realisation about what is happening and that upsets her. I don't know what is worse!!!
Thanks so much for your replies and interest. Even if none of us have all the answers, it helps to know someone else is going down the same journey!
You are so right mum.... we don't have all the answers but it's nice to know that we are not alone as we muddle through. Those that have not experienced this disease have a hard time understanding. So it's nice to know that there are those that do understand.
I do understand your delima about the clearer days being the days of upset. Mom was/is that way. There were days I wished for her decline as to relieve her frustration and aggitation. With additional anti depressants and anti anxiety meds.... and perhaps a decline as well.... she is better..... for the moment. I always add "for the moment" because the situation can change rapidly.