Hi sdmhred
I stumbled on your thread today, although I've been on this form for many years. I was looking to share with the Forum another of my weird experience with Mum today recognising someone from over 25 years ago, although I have shared before in another thread that regularly our loved ones say when they see people on the street when out and about in the car, or going walkies, "Ah ... there's John ... Jenny ... " when actually they've never seen the person before. Perhaps your thread is where I should share this
Thank you for sharing your journey with your Mum in such amazing detail and so regularly plus how it is affecting you, your family and what you are trying to balance in your life whilst also trying to take care of you which is so important as if we don't care of ourselves, we can't take care of those with PWD even if they are in care homes. Your journey seems very similar to mine. Sharing what is happening at your Mum's care home is also very similar to mine regarding staff and what they are facing and how they are coping but also what wonderful people they are.
And it's interesting that you are a bit ahead of me with the wheel-chair thing because this has become an issue only recently when we realised that Mum's Alzheimer's is middle-middle to late stage and she is struggling to walk short distances.when only a few weeks ago, she was walking very happily around the park with me with no issues at all. And it's all to do with how her brain is now functioning. I didn't get information from the care home this change had happened. It is important that we all hold the care home to account for communicating to us about the differences they see in our loved ones.
Care homes are busy, they have our loved ones on site in an enclosed area, they look after them, and they see subtle changes, but in the montly report we get from the nurses, don't always do more than provide information on health issues and our reports are " ... nothing has changed". The activity teams do so much for the residents but they are not required to share reports on individuals and assess their progress.
Because I live long distance, and I have a brother who can see her on alternate Sundays (he's still full-time working, I'm full time and working in my mid-60s), we do alternate weekends, but I also fill in to take Mum to dentist, podiatrist, GP on Mondays. I've been lucky enough to arrange with work I have Monday's off to take Mum too appointments but in return, I have had to compress my 5 day work hours into 4 days. Previously, much of my leave was taken up with taking Mum to appointments.
I've yet to get Mum to accept going to a wheel chair. She can't even walk to the garden centre from the car-park without a stick and me holding her the other side, but refuses to into the wheel chair I have bought from a charity shop for £30 although new it would have costed £249.00.
We've done the bluebell wood visit each year for over 15 years now, but this year we had to miss it as Mum can't walk, but doesn't want to engage with a wheel chair.
Hah, your initial thread with panty pads, been there seen it and got the t-shirt. I could never get Mum into trousers, and so she's in skirts and can't do tights for last 10 years, so we do knee high socks. But yup it's always fun going to the loo with panty pads as she'll not understand them and I've learnt over the years that when I use public toilets with Mum, preferably disabled toilets, that I go in with her or I hold the door locked with my foot, so that any point I can go in to assit her.
It's amazing how many times I've been in various garden centre loos with Mum, and had my foot under the door rather than her using the lock, and had to go in to assist her in such very small cubicles, but I've done it and with other girle members of public in the loo, how many have, even young teenagers, realised that what I'm experiencing is something they acknowledge is what they have experienced too.
I've long since given up the embarrassment I used to feel when taking Mum out and issue with pads and loos, and her saying things to people she doesn't know and paritcularly children, doing things in public that could potentially embarrass other people, and also me.
From my perspective now, it's about focussing on Mum and getting her out and about whilst I still can get her into the real world which I've been doing for over 10 years since she was first diagnosed.
But it's now becoming clear that window of opportunity is now passing as Mum is happier in her care home setting and less and less happy being out and about with me.
But at the same time I want to keep trying to get her out in the world out there so that she remembers things, so that her brain keeps firing, so that she doesn't just end-up as many in her home, in their rooms stairing at the walls, with no-one visiting them, and eventually just in their beds and unable to get out.
I know that Mum doesn't know me. Sometimes she'll say "how are you?" but I know she doesn't really know who I am and whatever I say to her will just go over her head.
So when I said I went for my colonocopy and they need to do further investigations "I've got some health issues". She said "I've got loads of those ... and then started talking about cars, bless her".
And just when you think that your loved ones brain is fried and they have no idea of what's up and what's down they'll suprise you because the brain neurons fire in different ways and certain neurons die with PWD and others live for just a few moments before dying.
Today, I took Mum for coffee and cake at a garden centre. My brother joined me. And there was was queueing system in place for tables at the garden centre restaurant.
Mum doesn't have the ability to know what she wants and so over years I've learnt what she likes but always ask "do you want this?" just in case I get a response but often it's "I'll have what you want".
And then, although her brain is messed to the point where she doesn't know who I am, and has no idea of my name, she'll suddenly like today, in a coffee place, say to me "I know that man".
Of course, because I assume that because she's always saying that and always saying ".. that's John .." whenever we drive in the car, go to shops or even are on site in her care home, I've assumed her brain is fried and she has no knowledge whatsoever when she looks at people and who they are so she just calls them Jone or Jennirfer.
Today Mum regonised Simon before my brother and I did from when he was just a young man and an apprecentice in my brother's firm, and went up to him and said "I know you". And he remebered Mum but also shared with us how she had helped him and how well he was doing and has a lovely young family and a successful career.
Mum can't brush her teeth, she can't understand who we are, she can't dress herself, she can't wash herself, she doesn't understand abotut going to the loo and using toilet paper. When the care staff try to give her drinks, she she just leaves them.
She's put on a massive amount of weight because she has no filter anymore so just eats whateer is put in front of her.
And because she doesn't walk any more, she's just piling on the weight.
I've been told by the care home that Mum putting on this amount of weight isn't for us to worry about because at some point Mum's AZ will kick in an she'll lose weight
All the best to your all supporting your loved ones.
