Advanced Dementia in a parent

Oh and absolutely no filter as to what she said.. the things that came out .. she was such a reserved polite woman .. oh my .. quite funny in retrospect and also a reminder that this is what dementia had done to her .. it really wasn’t the mother I knew .

Hi Foxglove 77 (and everyone. )
I really feel for you and you are in my thoughts. In the last 8 years we have had 2 dad's and my mum with one or other type of dementia. We managed to look after my FIL at home for 9 mths before he died , my mum and dad for 2 years before they sadly needed to go into care. I knew they were being looked after but there was terrible guilt. I know now that it wasnt our fault . You have done your very best for her. I found that I became a daughter again instead of a carer and that helped . Mum especially hated it because she felt like ( as it had) our roles were reversed. We became friends again after she went into the care home . It was very sad seeing them all retreat from us but we made the most of their good times. Take care of yourself xx

I totally empathise. It's so cruel. Music is a wonderful help. If you can make a playlist of her favourite pieces I can guarantee it will have a calming effect. A couple of months after my mum died Bridge Over Troubled Water came on the car radio as part of a play. I nearly crashed the car as it made me burst into tears. I must have played that, along with Beethoven's fifth, a thousand times to her. We also made a video of all the photos and WhatsApps of the family, her various dogs etc which the home played for her. She loved seeing the babies and dogs even if she didn't always know whose they were. Ice-cream too, always a joy to her.

Anneeba

I totally empathise. It's so cruel. Music is a wonderful help. If you can make a playlist of her favourite pieces I can guarantee it will have a calming effect. A couple of months after my mum died Bridge Over Troubled Water came on the car radio as part of a play. I nearly crashed the car as it made me burst into tears. I must have played that, along with Beethoven's fifth, a thousand times to her. We also made a video of all the photos and WhatsApps of the family, her various dogs etc which the home played for her. She loved seeing the babies and dogs even if she didn't always know whose they were. Ice-cream too, always a joy to her.

We found music very useful. Mum was Irish and loved all Irish music so we played that a lot. Even in her last week I played it to her very gently from my Ipad close to her ear and she would smile. As she passed away during the pandemic we could not get a Priest to come in but I found live church services from the town she lived next to as a child and played those to her too. She heard the priests tinkling the bells and saying prayers and she nodded at the right places even though her eyes were tightly shut.

In her last year I started writing down her memories and typed up loads and put in a file. Memories of her siblings, the village school, her parents, pets they had, favourite meals, teachers, neighbours, holidays, walking miles to fetch buttermilk, etc.

When she became bedridden and anxious or upset the staff would sit and read them to her and she would relax and smile and sometimes laugh at a childhood escapade. The staff told me that file was worth its weight in gold because it always calmed her down.

Oh dear, the D word was mentioned most recently by the ambulance man, who said he would flag it up to the GP, but I see the symptoms all the time and my partner's GP will only test his memory and say it's "clear". Well, it's not all about memory, is it? It's the confusion, the rages, the accusations, the neediness, the hallucinations, UTIs and incontinence. How do I get the early intervention he needs? He's almost totally blind, which doesn't help, and I am exhausted.

Mum went a bit like this. However, with encouragement she stayed calm (and actually in some ways nicer than her younger self). Mercifully taken by a stroke in her sleep - so I'd say do not assume your futures are bound to be quite so bad. One day at a time.

For those whose loved ones ask to go home, can I suggest you say something like, “As soon as you are better,” or something similar. It is so much kinder to give hope than the truth. My Mum has really settled since I started to do that.

Dear Foxglove. I do feel for you. My Mum was diagnosed with Vascular Dementia in 2012 and passed away in 2017. The progress was slow to start with and getting the diagnosis was shocking and I knew we were on a time line to the inevitable. Social Care advised keeping Mum in her own home with Carers coming in 3 times a day. They were so poor at times. In hindsight she should have gone into residential care then but we took the advice. Long declining story short. My mum had a fall was left on the floor by the Carer and I could not believe what I walked into that day. Mum was then taken to Hospital. She was then sent to a care home for 6 weeks whilst Social Care were going to look for a suitable home. My Mum was happy at this home and her stay was extended. The home was then devastated by a chest infection brought in by Hospital patients and the home lost 5 residents in one night, including my Mum. Looking back there are so many things I would have changed.
Take comfort that your mum is being looked after. She is now in her own world and if she says nasty things to you or does not recognise you she will not remember. The problem for 'us' is that it is hurtful to watch this decline. I do wish you well.
It is a heart breaking situation and not fair.