If my grandma would have to go into a care home?

Jlawson118

ka7e said:

I would recommend you sign up to the Alzheimer's forum Talking Point - lots of resources and info available to carers and family.https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community

Your Gran sounds as though she is actually still in the early stages, the symptoms you describe are the same as those my husband had. He was eventually diagnosed with both mild Alzheimer's and vascular dementia (Mixed dementia) and only started having real memory problems after a series of mini strokes. If vascular dementia is part of the diagnosis, there is a regime of blood thinners, statins and BP medication to follow. Has your Gran had an MRI and vascular scan?

Not all dementia sufferers get violent or wander, they may just become disengaged. Their rate of deterioration varies hugely, but having a routine within a family setting can be very beneficial. Odd behaviours and preferences can appear and then vanish overnight. My husband adores having babies and children around, but he does take his hearing aids out when they cry!

If Gran needs help around the house, with taking meds regularly, preparing food or personal care (even laundry or choosing appropriate clothes) then she may be entitled to Attendance Allowance. If you or your girlfriend are providing any of that care for 35 hours a week (which includes nights), you can then apply for Carer's Allowance (AA must come first).

I will just say, that if you take on the "burden of care" for any length of time you may find it difficult to hand it over unless Gran is unwell enough to need residential care. There is a shortage of carers and Gran will be seen as low priority for help if she has family living with her.

I signed up for the Alzheimer's forum a good few months ago, it has been very helpful around the matter  

Long story around her diagnosis as she was awaiting spinal surgery, but every time she finally made it into hospital for the operation, doctors were asking her if she understood the procedure and she was always behaving quite confused about it. Which it was a lot to take in as myself and my mum didn't fully understand it but my grandma had been messed about quite a lot, even in her sound mind she was adamant she wanted this operation to try and ease some of her pain.

So in with all her other tests, she did have an MRI but we didn't realise they'd sent her to test for Alzheimer's. We'd had an incline for a few years she did have it, but didn't realise her spinal surgeon was cautious about it too and had sent her for the scan. But she had a phone appointment this February with her spinal surgeon who told us the MRI was showing signs of the disease. Memory tests in April also confirmed it.

You've given me a lot of hope in that not all do get violent or wander, as it's been one of my biggest fears even before the diagnosis. My neighbour in my flat's husband ended up in care and the stories she's told me over the years were enough to put fear into me. But she's always said even when he got to the extreme of not being able to talk anymore, he never forgot who she was, always smiled when she walked into the room.

My grandma definitely does disengage though, we just can't get her to do anything to stimulate her mind, but then she complains she's fed up and bored all of the time. She's never been into technology or anything but she used to love word-searches and puzzle books and we've tried to get her back into them but she point blank refuses. She also doodles onto a calendar so she can keep track of days (Instead of crossing the days off she'll draw a squiggle or something) which my mum bought her a blank workbook and pens to doodle more and also some colouring books that she won't do. Instead she just stares into space and out of the window which is quite sad to see. But she is still quite social with us too so I'm still glad about that. She has a neighbour who recently lost his wife, who comes over for coffee every couple of days and a friend within the same village who pops by every few weeks so I'm glad she's got this social aspect.

She definitely does have a good routine as well, which I myself don't like change of routine so it's also fairly easy for us to stay in one with her. And my grandma also does love children! Which puts us a bit at ease, but she also does cringe when they cry and scream in public which makes me slightly nervous. But she is also the one reminding us that we need to pull our fingers out and clear the little bedroom out ready for baby! Which we've been putting off because she has a fridge, freezer and dryer in there which is all part of her routine but yet it's her who's telling us to do it! 

Baby is due in April so we will see how she gets on. Most people I've spoken to have said it will be good for her, which I'm hoping so too. She keeps pointing to our baby scan picture and saying hurry up, we've also told her it's a boy which she's remembered and always refers to baby as "he/him" which gives me hope about her memory so we shall see 

We haven't done anything about my girlfriend claiming carer's allowance but it was briefly discussed before moving in. But we do both work 40 hours a week, my grandma is still fairly independent for the time being so we kind of didn't think it was fair to claim just yet. We help cook her meals and help her with her washing and more so with shopping and things now too so we'll see how much/if she does deteriorate quickly

Thank you for your comments!

MalMonroe

Hi, you and your girlfriend sound lovely. But you could be entitled to some benefits so I would definitely check that out - they may be especially helpful once your baby arrives - congratulations! btw.

There is some info in this link -  https://www.gov.uk/browse/benefits/help-for-carers

So don't be shy about coming forward to receive some financial help when and if you are eligible. You may be surprised at what is available to you. Martin Lewis himself said on TV recently that there are millions of people who are entitled to benefits but aren't claiming them.

Citizens advice may also be helpful - https://www.citizensadvice.org.uk/

Good luck with everything.   

Brie

Granny will be able to claim attendance allowance but neither of you will be able to claim carer's if you are working 40 weeks.  Your girlfriend might be able to when she's not working after the baby arrives but you'll need to check on this. 

Will your girlfriend be willing to give Granny personal care?  Showers, dressing, incontinence pad changes etc?  Will Granny allow her to do this?  My MiL was very unhappy about me having to assist her but was much more willing with carers who came in once a week to help.  The sooner a routine is set up the better.  It also gives you two a bit of a break knowing that someone will be there and be chatting and listening to Granny tell that story about X yet again.  

For what it's worth MiL never became angry, aggressive, shouty.  Tearful occasionally when she realised she'd done something that upset my OH.  A lot of time it was down to me to smooth things out between them. 

Our biggest issue though was when she completely lost track of time.  We had a "dementia clock" (very handy, about £35 on Amazon) to help her keep track of the day/date/time but eventually she couldn't always understand what it said.  So she was working completely on her body clock.  She was tired she would go to bed.  Even if it was 3 in the afternoon.  Then having slept she would get up and wonder why if she managed to read 10:00 on the clock why it was dark outside.  She didn't know that it was night time.  Sometimes she was going to bed 3 times a day and getting up again and wandering around the house at 3 am.  Hard to manage for us and we had no children around that we were also needing to deal with.  I was trying to go to work and was very tired quite often.  This may be very difficult if you are working full time and girlfriend is doing double duty of baby and Granny sitting.  

As to your question about the house....I doubt that if Granny had to go into residential care that the local authority would insist on you becoming homeless particularly with a young child.  This might be easier to ensure if you put in place a schedule of rental payments to Granny so they look at the house as a source of income to pay for her care.  They may on the other hand insist that a lien be put on the house while you are living there so that they fund Granny's care home but get reimbursed when the house is sold eventually.  Unfortunately there's no way of knowing how they will look at your situation until they are actually involved.

Best of luck with it.  I hope that it works out well for all of you.

ka7e

OH has very poor time perception and the dementia clock beside the bed is proving useful, especially now that is dark morning and evening. He sleeps a lot - often up to 18 hours a day and cannot remember if he has been up before. He always wakes for meals though! Then he cannot remember eating, so I leave his empty plate on the table for a couple of hours to prove he's had breakfast or lunch. He needs prompting to keep hydrated and I give him pints of juice so I can gauge how much he is drinking.

If I am not in the same room as him, he doesn't know if I am elsewhere in the house or the garden or have gone out. If I do pop out to the shops, I leave a note next to his chair telling him where I've gone and when I will be back. I also have a large whiteboard on the kitchen wall which has the date, what we will be having for tea and important events - at the moment it tells him the Queen died and Charles is now King.

He has lost interest in all his old hobbies, he did beautiful carvings and was always "busy" but now just watches TV. He is enjoying the football, staying up most of the day and evening to watch it, but if you ask him who is playing or the score, he doesn't know. He binge-watched the Rogue Heroes series in one sitting, but had no recollection of it the next day. I've tried puzzles and colouring-in, but he can't concentrate any more.

Dementia sufferers very often have difficulty in maintaining personal hygiene and need to be coaxed to shower/bathe and change clothes regularly and may need help cutting nails. It's different doing it for a partner, but I can see that having a child or grandchild overseeing personal care may seem a bit undignified.

OH can't recall most people he has met over the past 20 years but he always remembers and recognises his 2 granddaughters (5 and 18 months) who he only sees a couple of times a year. He will interact well, teasing them and drawing pictures, it's a shame they don't live closer.