Alzheimer's Disease Support Group

Hi all. Have joined this forum for a few reasons...advice, empathy, sympathy....hopefully things I can give to others and receive also. AD doesn't run in our family...it GALLOPS! My Gran, my great Aunt, both my Mum's sisters and my Mum.... all have passed except my Mum. Mum is 72 and has been showing signs of Alzheimers for 5 or 6 years but the last 12 months have seen a rapid decline... mid November she was hospitalised (16/11) with a UTI and she had been refusing to eat and drink for 3-4 weeks. So hospital it was. My brother, Dad (81) and I visited her and saw improvement but the UTI had taken a lot away from her in a short period of time.

So just because life wasn't about as screwed up as we thought it could get, dad had a massive heart-attack was rushed to hospital and passed away on 25/11/11. There is nothing more surreal than sitting with your mother at 5am in the morning with your dad in a body bag across the hallway in another hospital room. So... Dad's funeral..well my brother and I buried our father, Mum on the other hand thought it was her Dad's birthday..."lots of family, how nice of them to come". She particularly thought they had done a wonderful job of the grounds at the cemetery.. and was particularly interested in the passing traffic..you really have to smile!! We had been given advice that Mum would be too hard to take care of at home as the Aged Care Assessment Team had her classed as high care nursing patient. (Have just returned to this after 4 hours - nursing home called, Mum admitted to hospital after a 'turn' and a fall!! All OK so far). So truth be told it has been easier burying Dad than putting Mum in 'care' - it is truly horrendous watching her deteriorate, when Mum retired 9 years ago she was the Principal of a Primary School and a truly amazing teacher - 50+ years of parents and students have adored her. Now I visit a women who has no nouns, no confidence, no memories and no ability to create new ones. 5 weeks in a nursing home and she still doesn't know where she is, where her room is, where the toilets are.... she will never make a friend there, other residents don't want her around them because she is repetitive and intrusive (this gutted me to hear!!!). So life goes on...one day at a time. I haven't slept in weeks - dreams of live father and sane mother haunt my dreams... I feel guilty about putting Mum in care even though I know it is the safest place for her...depression has reared it's ugly head again for me. I know others have similar stories but in a way this is therapeutic - just putting some of it down...maybe this morning I will sleep...perchance to dream of happier things. To all the sufferers, families carers and friends of those with AD - my thoughts and prayers are with you all.

Thank you for writing us Narelle. We are so sorry about the death of your father. You have a heavy load. All your mom's symptoms sound so familiar to us. The saddest aspect of Alzheimer's is how it steals personality, memories, and ability to reason, until we feel we are living with a stranger. It is no respecter of intelligence or accomplishment, chipping away at all those traits that make us human until eventually the body forgets how to function. A truly ugly disease. We hope you will come back and visit with us when you feel like it. Here's a hug from all of us. ANW

Hi all....is good to be reading other people's posts...lots of similar, sad, heartwarming and brave stories.

In my last post i mentioned I stopped my post because mum had been admitted to hospital. She is still there but slowly recovering. She had a fall...nothing broken. As someone new to the 'dementia trip with mother' I would like to share this...it may be old news... if so I apologise in advance. Mum went from hospital to the nursing home...health wise she was reasonable...dementia was not crash hot but had much repetitiveness, anxiousness and the whole not knowing where she was. Over the 5-6 weeks at the nursing home (slightly understaffed and overcrowded) she went down hill...not eating (my brother and i visit every lunchtime to ensure one meal eaten properly) or drinking and her dementia worsening (I put hand cream on her hand and she ate it ...then accused my of trying to harm her). Also was having slight muscle spasms/cramps in her hands...nothing huge just slight every now and again. So had a fall - admitted to hospital, hands completely fisted and couldn't be opened. Did a chem 8 on her...electrolytes were so out of whack..sodium critically low...then potassium and magnesium joined it. Gave her a slow calcium infusion and her hands relaxed in the space of 20/30 mins. No underlying medical issues..probably not eating and drinking sufficiently. This is not medical advice just information....mum is on the mend...electrolytes slowly going up...would be quicker except she has ripped out 4 canulars!! Eating well and reasonably cheerful...is still sundowning...anxious and wandery as the day goes on. Just FYI...it's too easy I know realise to blame alzheimer's for all change... by the looks of it it may be the other way round sometimes! Thoughts and prayers to all out there doing it one day at a time!

Familiar terms/experiences: "sundowning ... anxious and wandery as the day goes on." Some good days, and some that ... well, you/all of us in this Dementia Boat can fill in that blank, eh? It's good that you have your brother there, and his willingness to participate. I'm not sure that anyone's degree of difficulty in the care-giving realm can be quantified -- no one person's load is bigger/harder than anyone else's. It's just HARD; nothing any of us ever planned into our life experiences. One day at a time, for sure. One deep breath/heavy sigh heaved at a time. One more opportunity to love, regardless of how HARD the journey. Thank you kindly for the "thoughts and prayers to all" of us here in this cyber-space support group. You, too, have many more supportive thoughts/prayers on your behalf than you could possibly realize. Together, we make a stronger network of mutual support ... one thought/prayer ... one post at a time, eh?

Dear Narelle, my Mum went through something similar until I was able to get her into a LCH that deals with only dementia and AD patients. When my Mum was at a higher level of function she really benefitted from being with others going through the same thing. I want to wish you luck and good days with your Mum.