How do we know what stage we are at

[Sphynx]

My Mum was diagnosed with dementia earlier this year, however I had been noticing changes for 4 or 5 years before this. Her first main symptom was losing words and that now is the most significant symptom. It’s really hard to have a conversation with her because she can’t make a sentence any more.
She is living on her own and is lonely and bored. I don’t know how to fix it though, my siblings are suggesting a Care home, but it’s so expensive and I’m not sure we are there yet. Mum is still mobile and continent and is managing with meals on wheels and a cleaner. She refuses to take any medication and has had a few UTI’s but I think the boredom is the worst thing.
I don’t think she understands when I talk about a day care centre. I don’t even know if this is a good idea! I don’t know how I would get her there either.
I or one of my siblings go to visit her every day after work, but she has taken to going to bed earlier and earlier. I got there at 4:50 today and she was fast asleep in bed. She does have auditory nighttime hallucinations so she might just be tired but I don’t know if she understands the time anymore.
I can’t work out if we are at the start, middle or towards the end of her journey. I hate seeing her struggling to speak. She has stopped eating much. Perhaps half of one meal a day and some sweet things. She will drink a glass of milk most of the time, but sometimes just takes the whole lost back to the kitchen.

 

[jugglingmum]

With dementia I don't think you can ever say someone isn't ready for a care home yet.

You say your mum is lonely and bored and you don't know how to fix it, your siblings are right that a care home might be the right thing. Many PWD enter care homes at an earlier stage than your mum is at, it isn't just about being mobile and continent.

You say she is managing with meals on wheels and then say that she is eating at most half a meal a day, which doesn't sound like managing. This is part of the dementia deterioration, and it might be caused by many things, sometimes eating with others prompts eating, sometimes they can no longer manage to cut up food, it might seem they can because they can do a little bit, but changing food to easier to eat food, either grazing food or meals which don't need a knife might help. It becomes about nutrition and calories not healthy food.

A sweet tooth is very common in dementia and if it gets the calories in, try jelly with fruit and similar.

Repeated UTIs can be a sign of not drinking enough liquid, and again if she is with someone to encourage her to drink this might help, it can also be an indicator of poor hygiene and perhaps she needs more encouragement to shower.

I think going to bed indicate a lack of understanding of time combined with boredom.

There comes a time when a PWD needs company 24/7 to assist with orientation to time and routines, which helps with sleeping/eating and drinking.

As you say in pre covid times a day centre might have been the answer, and they are operating in some areas, it might be worth enquiring from SS. Some of them provide transport and have a pick up on a mini bus, but this would rely on your mum being able to be ready on time, some people sort this out by arranging a morning carer to help them get up sort out breakfast etc.

My MIL who is early stages of dementia has been getting bored and lonely (covid hasn't helped) and it has been arranged locally for her to have a carer in the morning on the pretence of helping with getting up (she does have limited mobility from birth which at 93 has progressed) and with breakfast - she stays for 2 hours and the distant relative that arranged it was clear this was actually to provide company under a pretext that worked. She still has friends calling in in the afternoon daily (under care rules this is allowed with covid).

If your mum has assets (not including the house) it would be worth trying to find a suitable person to go in daily to spend some time with her to make a cup of tea and drink it with her, with a piece of cake on the side - on whatever pre text you can use, as of course like all PWD there is nothing wrong with her. Some agencies provide this befriending service, sometimes word of mouth, which is how MILs carer was arranged.

I also suspect that your siblings might be finding it exhausting keeping up the daily visits along with all the current covid restrictions and it isn't just about the needs of the PWD but everyone involved in their care. If your siblings can't keep up the visits then this is an indicator of care home time, you are all working and will have other family commitments.

 

[Triffid]

My mum died suddenly and had used to do everything for dad. We were suddenly dropped into looking after him. Bit like your mum he wasn’t eating or doing anything and as a result of UTIs and the grief he was incontinent on and off. We eventually realised that as @jugglingmum says he needed someone there 24/7 to help with eating and orientation. Took a lot of discussing and persuasion before he would agree but he now has live in carers and generally is eating much better and they encourage him to drink fluids and keep him company. He doesn’t think of them as carers but more as “housekeepers”, although he does sometimes find their 2hr afternoon break a challenge - usually because he forgets who is there and where they have gone. We went down that route fir the present because he can afford to fund it at least in the short term and we’re able to go and stay with him regularly.
In general he and the house are both much better off with the carers than he was with us there - an, for him, that would probably be true is he went to a care home too.