Live-in care for parent with (probable) dementia - any experience to share?

[Blogwoman]

DM probably has dementia, as yet undiagnosed. She's also very deaf, but physically pretty well. Living in a sheltered flat with a mixture of paid carers and family members calling in x3/day. It's hard to know how she is, really, but she is becoming more muddled, so my DSis x 2 and I are rethinking her care needs. She's keen to stay in her flat, and we think live-in care could be a good option for her, but we know there's no going back once that's in place, and also that she underestimates her own care needs, so may be resistant to it. And how would that transition be managed, with someone suddenly living in her house - but she wouldn't be able to remember why?!
One DSis lives near DM and ends up having to take time off work to attend appointments, does her shopping, visits every weekend and when DM calls her because she's worried etc. We're keen to relieve her of some of this. We also think DM might have a better quality of life for having someone around all the time.
It's hard to know when to start it, but I think it would be better to start fairly soon and before we get to a crisis - or before the days get short, which I think will see her putting herself to bed as soon as it gets dark! We also need to decide whether to pursue assessment and diagnosis, which her GP has offered, though she is clear there isn't likely to be any useful treatment. We wonder if it would help us decide what DM's needs are. Anyone got any thoughts or experiences to share? Thanks.

An assessment would be helpful because if it is dementia there is medication which can slow down its progress. Also help identify her needs.
No experience of sourcing live in care- there are some agencies which offer it. Worth talking to some to see what they say.

Thanks sandwich

My mil has live in care - she has dementia so can't cope alone. It has worked for us so far but is very expensive so you might want to check your budgets. We also have to pay for respite care because the carers need time off. We source our carers through an agency and have a rota of 3 who come for 2 or 3 weeks at a time. The changeover us difficult for MIL as she doesn't really understand what's happening or who anyone is. But she is well looked after and on the whole happy.

Thanks MrsWobble - glad it’s working out for your MIL. Yes covering time off is a bit of a complication by the look of it; we’ll have to think carefully how that can best be managed.

With my Dad we had live in carers - almost all very lovely people. Like others have said, they typically did 3 weeks before moving on... we settled on three he really liked and they came in rotation.

The challenge was their needing an hour off each day - surprising little given how long their hours are - we found someone local to do it when we couldn't

Although expensive to us, they are amazing value - I can't believe how little they earn and we met some quite exceptionally lovely people over the three years before he died

If it's any help I work for Live in Care (as a manager), dependant on the company there's a lot of work put in to support the carer and the client develop a relationship and the right companies are dementia specialists

The Care manager visits in the first few weeks in order to help things facilitate and contacts the carer everyday (we don't ring the client daily for fear of confusing them more)

A lot of work is done to support the transition and that can continue for a long time however long your mum needs

Hope that helps a little? Please feel free to dm if I can answer any questions

Thank you both for your encouraging messages. We are moving towards this, finding answers to our questions, and we're due to have an assessment with DM by the care manager in July.

@Blogwoman
We have had live in care for both my parents since January through helping hands. The carers have been lovely.

I will say though that it has cost a lot more than we initially bargained for as my dads needs were much higher than originally thought (mom has dementia- and dad has a recent dementia diagnosis but has deteriorated far, far quicker than my mom). We ended up having to pay for respite not only for the carers 2 hour break but at night because both of my parents were discovered to have sleeping interruptions and night time walk-abouts.

My dad is currently in a respite home and as we find care home placement for him will also need to move mom as the live in care costs are now prohibitive for one person. It will be even worse I think moving her now she is so comfortable and cared for at home.

Sorry can I add that we have found that the dementia diagnosis is useful to a certain extent, even if the kind of dementia your DM has cannot be medicated as the dementia diagnosis as given us access to some other free services. Alzheimer's and mixed dementia can both be medicated, with limited success depending on the individual.

Thank you Apple - good to hear that you have had a good experience of care for your parents, though it must be very sad to see their deterioration, and it's a salutary note about unexpected expense. We are moving forward with arranging live-in care from the autumn and keeping everything crossed. Good luck for the next phase with your parents.

Bumping to see if anyone else has advice or experience to share. My very competent but aging DF is at the stage of considering live-in care to help him look after DM who has increasingly severe vascular dementia and has asked me to help him with research. How’s it going @blogwoman? Hope your DM settles well with the new arrangement.

Reassuring to hear of other people’s positive experiences: at a cost of course, but given the hours involved that’s inevitable.

My DM is 90 and following her husbands move into a care home earlier this year, and her having a number of issues, mostly anxiety, some heart, we organised a live-in carer. Her needs are very minimal, companionship, cooking, tidying. My mum also has a weekly cleaner, and a gardener, so they don't need to do that. She basically just doesn't want to be alone, and as she is quite a difficult "character" we, all four children, wouldn't have her stay with us. We found a carer through a local agency, from Czech Rep, who was amazing and stayed for three months, her patience was astounding. She did leave eventually however, as even she couldn't take any more! In the meantime we had a Greek, who was a lovely lady, but she and DM argued the whole time, so only lasted a month, and now she has a Sri Lankan, who she is not sure about yet as she is "coloured" . So, the ladies are always lovely, but depending on your DP you may have issues you never thought of, like the coloured issue, my DM won't have anyone black. Ugh.

Oh dear Older - that sounds a headache for you!
Thanks ARiver - sounds like your DF could do with help & I hope you get some more experiences shared here. We are now only a few weeks away from a live-in carer starting with DM. A manager from the agency came & met us & DM, & asked lots of questions. The potential match sounds promising. It’s a question of agreeing she’ll start, & when, & trying it out. DM is keen to have someone & getting more confused so it’s definitely time. We’re grateful that DM has a financial advisor of long standing, who set out the options for us & we will be taking out a financial care plan that will pay for DM’s care for life, including if she has to move into residential care. We’ve had to make a few changes to furnishings in her flat to make a suitable room for the carer, but that’s nearly all done. Keeping everything crossed for it all.
A friend’s DM had a live-in carer to help with DF for about 2 years; worked really well. They had this lady for many weeks at a time & then she’d have a month’s holiday, with the gap filled by others from the agency - all good.