Demented grandmother who won't take meds or be changed

[Newparent101]

Looking for advice on my mum's behalf, who is full time carer to her mother, who has severe dementia. Mum and her brother take it in turns to look after her, 2 weeks each before swapping (my grandparents live in spain - since brexit we can't bring them back as they wouldn't get NHS care). Grandmother's dementia is severe enough for emergency care home, but her husband's is only stage 6 dementia so he can only qualify for the 1-year wait list care home - separating them isn't an option (they've been married for 50 years and panic when the other leaves the room). So mum and her bro are stuck flying out to take care of them at their home.

She won't let mum change her adult diaper, she will often have overflow of urine into her bed so mum needs to wash the sheets in the middle of the night. She says mean stuff intermittently, which mum finds upsetting. She won't take her meds, so mum is desperately prioritising the most vital ones. She often refuses to eat - so mum leaves food out next to her and sometimes (often not) she will eat it. Can't be left alone for more than 5 minutes or she gets up to all sorts of trouble, eg eating cat food. Often mum wakes in the night to find her downstairs, so mum is often too scared to sleep and totally sleep-deprived.

Just wondering if anyone has had a similar situation / can offer some good advice or tips that I could pass on to mum, who is completely at her wits end? Thank you 😊

My mum was been in a care home for the last 4 years but I think she would fit this description or similar. She died in Augus.
She often refused personal care and spat out medication. Especially if she was asleep. She had no care for a full pad and wouldn’t cooperate of she didn’t want to. She’d chew a mouth full of of food and spit out the leave the rest. She lived on very little food in the last years of her life. She would say mean things but she was also quite sweet.
My mum wandered at all times of the night and day but she did sleep 2/3 days at a time and then get up until she couldn’t awake.
She didn’t do anything she didn’t want to do. I have to say this would have been really difficult to manage at home and it was great she was in a home.
it sounds really tough for your mum. Especially leaving everything to be in Spain.

Are they not British? Why can't they come home? Why did they leave in the first place? No help, sorry. Feel for you though. x

There are ways of layering bedding for quick/easy changes.

Could they afford some kind of carer to come in, perhaps a night support? Even if they just came to watch her and stop her wandering so your mom and uncle can sleep, or during the day so they can catch a nap? Or to do the washing etc whilst your family do personal care if they can’t afford full time live in carers? I can understand the difficulties around care homes and separating your grandparents (my great aunt and uncle were separated in the final 18months of life and I think it was one of life’s great tragedies and said everything it needed to about our current society and set up, but that’s an essay for another page) but your mom and uncle need to realise what they are doing isn’t sustainable and if they burn out, what happens then? Unfortunately with dementia it only gets worse - your grandmother will deteriorate and your grandfather will get harder to manage too. Now is the time to start building in some boundaries. It might be that your grandmother is too vulnerable for a care company to support in home care, especially if she’s refusing personal hygiene, but as above it could be that if some of the other tasks are taken away your mom will have more capacity for doing the personal care.

You need to investigate the resources available for live in care or overnight care in Spain.

Your mum should also consider biting the bullet and getting her mum into a home. There would be initial emotions that would be hard to deal with, but older people with dementia are often well able to accept a new situation after initial upset.

The situation as it stands isn't feasible.

If your grandparents are British citizens then they can access NHS care immediately on returning to the UK if they are returning to live permanently. This may be harder to arrange if your grandparents are not cognitively capable of sorting out their affairs in Spin and arranging to return. Your mum would presumably need some sort of power of attorney. But I think moving them back sounds essential for her and your brother's health. Not to mention, it must cost a fortune to be flying out every 2 weeks.

It sounds like your grandmother needs full time medical care, in a nursing home, whether in the UK or Spain.

My mother was like this with dementia and it was so grim till GP said she needed medical care and she went from hospital to a nursing home.

I'm so sorry for your mum and uncle having to deal with this - they really can't provide the level of care she needs, and also, unless they have medical training, won't be able too. My mums carers in the nursing home would change her pads, even if it took 3 of them, as it's non-negotiable. When it was just me, if she got violent I just couldn't get it done.

Your grandfather can visit your grandmother in a nursing home every day, so please don't let him missing her be a reason to put off full time care any longer.

Interim advice is to get some paid care in, as soon as you can, it's not a single handed job, as your mum knows.

As for tip for the time being- for meds, we used to grind them and put them a sandwich with whiskey marmalade, covered the taste.

For soling the bed - use the absorbant oversheets for kids who wet the bed or puppy traing pads over the sheets (matress protector underneath) and you might only have to change the protective cover and not strip the bed.

To stop her wandering - new bolts on external doors, ideally up high or down low, so she can't get out. To ensure your mum/uncle knows if she's up in the night, a motion sensor alarm for her bedroom door

For food - offer small meals, often. I stopped bothering about balanced meals - marmalade sandwiches were my mums diet staple, with cups of tea, for about 6 months.

When she's mean - diatract, don't challenge, just go along with whatever sceanario she's in, while assuring her she's safe. For my mum, I'd frequently shoo invisible cats out of the room, as telling her there wasn't a cat in the room was just too distressing for her.

I wish I'd got my mum a baby doll - I saw a couple of elderly women with them in a respite centre, and they seemed to calm them. I think I couldn't face up to such a clear visual symbol of how I'd lost my lovely mum, but I think it would have been good for her.

But most of all, please help your mum and uncle work out a way for her to move into a home. No one wants their kids to have to do this level of care.

The only thing that helped my nan was how we spoke to her…

for example if we went in her house and said “right shall we get a bath run ?” She would say “no , I had one yesterday” (she hasn’t) and if you tried to convince her an argument would start.

it was a struggle when carers came in as the would just write ‘refused’ on her notes and moved on.

however if we just started running the bath with out asking and kept her chatting about other things , she would often follow me to the bathroom and get undressed while telling me a story largely unrelated to what we were talking about. Sometimes she would have the bath not to waste the water now the ‘silly girl’ had run it
it always used to remind me of toddler negotiations with distraction and deflection!

can they go into a home together?

Some useful information here @Newparent101

This is bad advice. Do not move people with Dementia, if it not what they want it could make things much worse.

sometimes people with dementia have to be moved

Kylies are good for bedding - something like this:

https://www.capatexcare.co.uk/kylie-sheets-washable-bed

you can get different absorbencies - it’s worth paying the extra for more absorbency. My disabled son used to wet the bed twice a night so I layered the bed with kylies - all I had to do was take off the upper Kyle & usually just put another Kylie on top. If the sheet was affected I could go to the next layer.

For meds try giving them in something. We give my (now adult) son’s his in yoghurt - he knows they are are there. Alternatives are to crush meds or get a liquid alternative medication. We had to do that for years - if you can avoid liquids it’s better to because there can be supply issues, but they are an option.

This level of support is not sustainable for your mum and uncle to provide. Unfortunately I think your mum and uncle do need to look at other options. And quickly as this is not going to get better. It’s unsafe for everyone involved to be providing full on care with almost no sleep. Supporting behaviour when someone has no understanding of risk needs well rested, awake, unstressed support. Not your mum and uncle trying to do the impossible.

My grandmother became a danger to herself because she was so mobile. She did not want to go into a home but settled very quickly once she did - I think she felt safe again, she knew she was getting into messes before. She had a very happy final few years there.

Not countries. Is it in their best interests? A local to them care home may be but a huge move to the UK in the depths of winter?

What a crazy unsustainable situation. The only option is a care home for both of them in Spain. It will only get worse. And they can live without each as my in laws have done for the past 2 years. Both have dementia but mother in law is significantly worse and in a care home.

If she’s refusing pad changes is the skin damaged? Getting a GP to refer to hospital would be a way of getting her in the system (assuming it’s the same in Spain) and then into a home. There comes a point where what they want is not deliverable or realistic, and all involved need to stop breaking themselves for a fantasy.

It doesn’t have to be done in the depths of winter. Other than the weather, a British care home may be less of a shock, depending on when and how well they learnt Spanish.

With all due respect, this seems to be something that needs sorting sooner rather than later.

That doesn’t make a British care home necessarily the worse choice for the grandparents. Even with the weather difference. And would certainly be better for OP’s family - who will still need to oversee the care and visit even once they are in a home.

Honestly you’re going to have to get social services involved and get them both the individual care they need. You can advocate for them staying together, but this isn’t safe or really working for anyone.

Sorry, but that’s rubbish. People with dementia will so often have needs, serious needs, that, sadly, often have to trump what they want. A person with dementia is often just unable to understand that what they want simply isn’t possible.

My DM would certainly have liked to stay at home, rather than move to a care home, but had no conception that she could no longer even make herself a cup of tea, and e.g was constantly locking doors and hiding the keys, so that in any emergency, like fire - and she’d already managed to set fire to the kitchen once - she couldn’t have let herself out.
I could go on…
In short, she simply wasn’t safe to be left alone at all any more - a care home was the only viable option. We did look into live-in carers, but since she was up and down and wandering at night, that would have meant more than one on shifts, which worked out rather more expensive than the very good care home we found for her - with all the costs of running a house on top.

Thank you so much everyone for your invaluable advice. Unfortunately my grandparents have never lived in the UK - mum moved here for uni and stayed ever since - my grandparents are entitled to state social services in Holland (where they're from originally) and Spain (where they've lived for 30 years).

Totally agree they need to get into a care home ASAP, the thought of them living apart is just heartbreaking though because they are so utterly dependent on each other, we worry they would spend the rest of their lives in a state of total anxiety- already they get anxious if they are a room apart from each other.

Maybe it's worth looking into getting a private carer again - mum did hire one earlier this year to come in a couple of days a week, but my grandmother "fired" her quite fast (this is when she was more compus mentis though, she's gone downhill very fast).

Yes the flights are costing a fortune and private carers would too, but mum and uncle are close to burnout already so maybe getting a private carer for nights/some of the day is the only last option to try before accepting they'll need to be in separate care homes.

Thanks for all the invaluable tips, will pass these on to mum! I'm sorry so many of you have been through similar experiences, dementia is such a sad illness :(

I’m a carer and work with adults with dementia. I think the single most important thing to remember when dealing with people with dementia is to never argue with them. People hold onto emotions much longer than they remember specific moments. So if you argue with them they will hold onto the anger and confusion for much longer than they will remember the specifics of what they were arguing over.
So when trying to get someone to change their pad for example you try once, if they are not willing then walk away or change the conversation for a few moments. And if your with someone long enough you tend to get to know how long they will remember a conversation for. Once that time has passed you try again from a completely different angle. And you keep doing that until you get where you need to be. But you have to keep the emotion and frustration out of it. Or you won’t ever succeed.

It does sound like your grandparents need more help than it’s realistic for their children to provide. So I would really encourage them to try and find either a care home or home carers to take the pressure off.

Agree 100%.

I have a very aged aunt who believes she's staying in a sedate hotel while essential repairs are made to her house. She is very happy there. It's a 'lovely hotel with great views' and the food is 'first class'. The other 'guests' are pleasant company and there are no young people having parties and making noise at night.

If your relatives return from Spain they WILL qualify for NHS treatment. NHS is a residence based system.
For the first three months they will be reliant on their existing Spanish insurance for ELECTIVE care. But any emergency treatment is funded from the point they arrive.