Dementia: It is so blardy hard to MOTHER my MUM.

[2010aQuintessentialOdyssey]

In so many respects she is like a toddler now. With no concept of time, memory like a sieve, yet the stubborn ness and claim to authority of your mum.

I find I have to apply the same patience as with my own kids. When I repeatedly explain something, then have to explain the same thing ten minutes later.

It is so hard, I just want to turn to my mum for understanding and support.

But I cant, because this mum I used to know and love, and who were still actually with us this Christmas, is now gone. Replaced by an empty shell that looks like mum, but is in fact a wilfull toddler.

So sorry Quint, my Dad has alzheimer's - it's a bastard of an illness.

DB, I wanted to ask, it just occured to me today when I took her to the GU clinic. Is the incontinence possibly related to the fact that she forgets that she needs the loo?

The doc diagnosed urge incontinence, but I wonder if she maybe just forgets until it is too late. (good to see you back)

Continence and Dementia are linked.

It can be a physical problem with bladder control i think.
But it can also be
-forgetting to go to the toilet
-not being able to find the toilet (even to the point that having turned round and it's no longer in view, it can be forgotten)
-setting off for the loo and getting distracted
-not recognising the toilet when they get there
-forgetting the sequencing of undressing, cleaning etc especially if pads are involved and they are a new part of the routine.

of course it's different for everyone and having dementia doesn't mean that ALL of these problems exist for them.

there are some strategies like having a picture of the loo on the door, or having well defined colours in the bathroom to help with visual difficulties. if your mum is refusing to go she might be happy to water the plants or some other distraction that once in the bathroom she might decide to use the loo.
trial and error i'm afraid.

I think with my Dad, his incontinence is to do with the fact that the urge to go message is just not getting through to his brain on time.

But do make sure they check for any other physical problems that may be contributary factors - although alzheimer's is the main problem, my dad was also diagnosed with a kidney complaint - which is treatable.

We spent three hours today at the GU clinic, the nurse doing lots, and the doctor did an ultrasound. There does not seem to be any other underlying thing.

quint...my mum had dementia as a result of multiple strokes....
It affected her bladder and bowel,and we had many accidents after she came out of hospital. Apparently the strokes affected the nerve impulses from the bladder and bowel to the brain.It was terrible for her as she had moments of knowing what was going on and other times where she would keep asking me what time it was(like every 2 minutes) It is difficult not to loose you patience,but try not to,it is not her fault. It eventually affected my mums swallowing ability too and she used to choke on all her food. Eventually everything had to be liquid but with a thickener in it, so that she knew she had something in her mouth. She couldnt tell when she had ordinary water in her mouth. I looked after her 24/7 for 8 months before i nearly collapsed with exhaustion. I had to get up 3 or 4 times a night as she couldnt even find her way to the loo. Dementia is as bad as Alzeimers and i do understand exactly what you mean when you say ,that your mum is not your mum anymore....she has gone. Try and remember her as she was, not how she is now.

One thing that always helped my mum was to make sure she had plenty to drink. If they dont drink enough,they can get a urine infection,which is very common, and this makes the dementia much worse.

alypaly, it seems you have had a very hard time of it.

My mum is not this bad yet, but the illness has progressed so rapidly, I think we are heading there.

I am hesitant to move back in, because I think it wont help them, but it will drive me crazy and possibly have a bad effect on my family. And they will never get the care they require from the professionals if I move in and take on this role, and I am sure we can forget about a care home for them.

But they dont want a care home. Very soon it will no longer be about what they want, but about what must be done. I dread that.

Hi!
Just wanted to give you some practical suggestions which you might not have thought of, I am a care assistant in care homes and community care, so come from a different pov.
If you really don't want a care home you can get good home care packages if you are willing to fight and you're willing to have the house adapted as required. Home care packages can include morning visits for personal care and making breakfast, mid morning continence visit, lunchtime visit to make lunch, afternoon visit for continence, Tea-time visit for making dinner and an evening visit to help with personal care, getting ready for bed and ensuring the house is secured for the night curtains drawn etc. Another option can be a live in carer from an care agency.
Signs can be very useful.
Pictures with names of the people in them on the back so you can do memory exercises.
If you haven't already got them the incontinance pads that look like knickers are great (you can get them from boots www.boots.com/en/Boots-Staydry-Belted-Pull-Up-Pads-Super-10-Pack_4972/ ), you can get them on prescrition either through gp or occupational therapist.
As a carer I write everything down, you may find this useful for you if you could do it for a couple of days - fluid and food includes times of each and how much, toilet and incontinence moments you may be able to see a link and prompt your mum to go to the toilet and prevent accidents. Also write down the general day, moods things that you both did etc and then you may be able to make links to things.
I hope some of this may be useful for you

it is awful watching them regress back to being a child ,totally dependant on you for everything. Food ,bed,bathing,changing tv channels,dresing,removing false teeth. I had this for 5 years and eventually i had to trust a home to look after her. I was there nearly every day and had many scenes with the staff, as some didnt give a flying fig. They broke her teeth,didnt feed her properly,didnt give her drinks. I had major rows and meetings with the big wigs and eventually got the care i needed ,but i still kept a very watchful eye on everything. Had to fight for private nursing home as they have to fulfill certain criteria to get financial support from social services. Got the home i wanted in Adlington and then a week after i got her there she sadly died. I say sadly because she passed away on one of the only days i didnt go to see her...but in the end it was a relief to see this 5.5 stone lady at last resting peacefully and out of pain and degradation.