Mum in hospital. Bracing myself.

[Timshortforthalia]

Both parents with dementia. At home with two hours of care a day. It’s been a really tough dynamic. My dad’s Alzheimer’s is only early stage, so he feels he should look after my mum who has mid stage language-based dementia.

It’s really taken its toll on me. Im there three days a week. I’ve been so happy to do this - I have a big impact. But the last month, my mum has been increasingly agitated and my dad struggling so much.

They’ve accepted they need live in care. This week I accepted that I’m too broken to sort it so asked my sister. She has CFS/ME but has been amazing. We interviewed today and have a short term placement starting on Tuesday.

Tonight my dad calls to say my mum has fallen and paramedics taking her to hospital. It’s s fractured femur. She is frail with osteoporosis. They operate on Sunday.

She is non-verbal and doesn’t really understand what other people are saying. But she is so tough, I think she will be ok in hospital. It’s my dad I can’t deal with. His Alzheimer’s presents as emotional selfishness. He will just drain me, he will drain my mum. He will cry a lot. He cannot recognise how this impacts others. He has been like this for a year or so. I was so glad when he got a dementia dx in January, cause at least I could blame the illness.

I’m going to my parents now. Lots of practical stuff to set up for live in. Plus getting through my mum’s operation.

I need to remember to stay kind to my dad. I need to draw up boundaries with him in a sensitive way. Live in starts on Monday, so once my mums out of operation safely, I can come home for a few days.

My brother spent this evening in A and E with them. He lives abroad but is mercifully in county at the moment. My sister is wiped out by juggling work and setting up live in care.

I don’t know why I’m posting.

So sorry OP that sounds really tough
Do you have anyone at home to look after you whilst you're dealing with all this, or friends you can meet for suppport? Xxx

Thanks for replying to my post. I think DH is going to come down tomorrow to help with practical stuff. So that will really help.

What an upsetting set of circumstances. You poor love, go easy on yourself. You sound amazing as a family pulling together.

I don’t know if iabu. My mum can’t communicate when she needs toilet. It’s not a problem at home but she is disoriented. Moving her with s broken hip is obvs to much, so she has a pads

She was really distressed when I got here. She needed to wee but just wasn’t comfortable doing it in her knickers. I persuaded here, and she relaxed. I asked staff to change her pad. Took a while cause they need two people.

I stepped out and during the whole process, they just talked to each other in a different language, completely ignoring my poor mum.

Right now, in pain and away from home, I know how people see her. Because her dementia is language based, people don’t see her.

Am I overreacting? She was crying out in pain when they did it. All they needed to do was to acknowledge her.

While we were waiting for a second person to help with the change, I tried turning on super-nice with the first person, explained about my mum’s dementia being language based.

I’m torn, do I advocate? I’m not comfortable with that at all. I would much rather be nice to people and get through to them that way.

OP is your mum ok at home with just two hours of care a day? Have you considered a home for when she comes out? And your dad, is he safe?

Have you had a needs assessment?

I’m so sorry, your parents sound like they have brought up a fantastic daughter.
just in case nobody has warned you, broken hips are often a general reflection of how frail someone is (very). The anaesthetic / operation is likely to lead to a further deterioration in your mother’s capacity and she is unlikely to return to her previous baseline. This is not that the hospital, you , or your mother are not making the effort but an almost inevitable reflection of her deterioration.

It is unlikely your mum will be able to return home.

We have a live in carer due to start on Monday. This was already in place before my mums fall. We will see how that works. She’s quite active and independent, because she can no longer read or understand TV, she is quite bored so she goes to local dementia groups three times a week, the corner shop most days.

And yes, we’ve had two needs assessments. Last one was about nine months ago

I know - falls are often a catalyst and hips especially so. If a residential home ends up being the best place for her, then so be it.

Thanks for the heads up. My mums baseline has been on a steep downward trend the last few months even before this.

Please take time to look after yourself op

Thanks @Livedandlearned . I’ve found an old bottle of rum and am in bed now. I’ve developed a worrying candy crush addiction (I’m a bit behind the times 😁) so will settle down with rum and phone and try to sleep when it gets dark.

DH and Dbro here tomo.

My dad is being really good. His cognitive skills have taken a nose dive, but he spent seven hours in an and e last night, is tired. Hopefully will be better in the morning. He was holding it together for my mum today, but also was happy to spend minimal time at hospital. My mum just needed quiet and my dad finds that hard.

The staff member who changed my mum without talking to her tried to feed my mum by forcing yogurt into her mouth while doing upbeat, super patronising chat to her. I took over, chatted about the logistics of nil by mouth tomo, and - - ok I’m embarrassed about this but - started talking about the distinction she got in her MA in public health after she retired. My mum ate, he apologised to her (!). And then went out of his way to be friendly with me after. So that’s a win. I think it was my face while he was talking/feeding that did it, rather than my pass agg references to her degree 😁

Thanks to the pp’s who said about the fact that this is a sea change for my mum. I’ve taken that on board. My brother, sister and I will prep different exit plans from hospital. In a dream world, at home live in nursing care for a few weeks followed by regular live in. But I know she may be better served by other set ups so will also investigate those too.

Well done for saying the right things (or having the right facial expression) to bring about an apology for the patronising feeding approach.

My mum was in hospital recently (sadly she died there) and one thing that we found very frustrating is the way she was treated, as if she was some kind of lesser human, an old dear with limited understanding. It makes me so happy to read your story about mentioning your mum's MA. Wish I'd done something similar!

My mum was being rolled onto a broken shoulder to have her pads changed which was very painful for her. I had to work hard to advocate for her and ensure that every time she was moved to a new ward or bay, they wrote 'do not roll on right' on the whiteboard behind her bed. I was always nice to all staff though, just very determined to get through to them what she needed. It felt a bit of a losing battle though as it was a bank holiday weekend and staff changed every shift with hardly any regulars.

Best of luck dealing with all this OP, it sounds very tough.

@EveningSunlight Im really sorry about your mum.

Tough day here. Operation postponed til tomo. My mum really struggling. I’ve taken a sleeping pill, hoping to get a bit better sleep tonight.

Hope you can get some sleep, and hope tomorrow is easier for your mum, and you.

Hope you get some rest op and they can settle your mum for the night. I know exactly what you’re saying about the care assistants in the hospital not acknowledging people as people. Xx

Got a good night sleep last night. My mum in surgery now. My sister here. Waiting for live in carer who’s staying for three weeks who can support my dad. She’s coming at midday.

Been so busy, not really that we’ll set up for her. Have sorted her bedroom (just about).

My sister is staying night so I’m going home today for a while later this afternoon.

Its bloody hard with often no end in sight for all of you. The talking over their resident in another language is completely unacceptable but sadly the norm and I fully understand why you dont want to complain about it. They might take it out on your poor Mum.

Not sure about the live in carer tbh. In the end my Mum had to go into a home although someone did mention a live in carer but I presume there will be a team of them rather than one person in there 24/7. I just couldnt keep track of everything which included managing the team of carers.

Not all care homes are horrible places and of course none of us want to use one and one needs to look carefully.

Falls are the killer but they patch them up and send them back dont they?

Had similar with my Father but he was a happy person suffering from severe memory loss but he lingered far longer than he really wanted to and someone made an awful lot of money from him