How do you know when it's time for a care home

[lollap]

My Dad is in the early stages of dementia. He has a myriad of other health issues, including severe mobility problems and incontinence. He's only 64. He has carers in throughout the day and has my Mum. She does all the care when the carers aren't in, this has ramped up as he's having more toilet accidents requiring a full change which happens often in between the carers visits.

She has to do everything, i.e. cooking, laundry, cleaning, gardening etc, as he can't do it any longer. She's struggling to cope and I'm concerned about her health and my Dad's safety. He's now got a hospital bed and a hoist. Things seem to be going downhill rapidly.

He was hospitalised a couple of months ago and he was so upset being away from home, that's all he talked about. He is still "with it" even though he has dementia, it's only a recent diagnosis.

3 different health care providers, including his GP, have recently broached with me that we should start thinking about longer term care. My Dad has no idea. It was hard enough trying to get him to agree to the hospital bed.

I don't know what to do here, does anyone have any advice who has been through this? Or any suggestions of more support at home?

I feel for you all in this situation but ultimately I think you need to put your DM’s health and well-being first. It very much sounds as if caring for your DF is too much for her and his health and abilities are only going to deteriorate.
DF will resist going into a home as most older/elderly people do but they don’t understand that by getting their choice of living at home is massively depriving others of their lifestyle choices and it’s simply not fair.
I will soon be having a difficult conversation with an elderly relative but their care needs are too heavy a burden on their only child and choice is no longer an option.
I hope you and your DM can arrange an appropriate care home for DF and glad you have GP support as many say ‘oh it’s personal choice’ even when supposed independence is a dim and distant memory.

The circumstances which would indicate that a care home is now needed will vary from person to person. Every carer will have different limits as to what they can cope with and what maybe will put them put them over the edge. Your mum certainly can't keep up this amount of care indefinitely and what usually happens is that a crisis will occur and that's when things get looked at and hopefully sorted.

When my mum took really Ill that's when my dad had to go into a care home. I think you should be looking at respite care as that would be for only 2 weeks at a time and would give your mum a break and time to think about how to manage your dad going forward. Can you sell it to him that if your mum gets I'll he would have to go into a home anyways. You never know he might actually like it. It does sound like this will happen eventually as there is no way your mum could sustain that level of care without it being detrimental to her own health

In my father in law's case it was a move from sheltered accommodation with a warden and a communal lunch for residents. He was forgetting to eat and also having 'accidents' i.e. incontinence. I think for his family it meant that we could relax because he was in a safer, more supported environment. We could concentrate on simply being with him socially rather than getting exhausted by running round doing lots of practical tasks. It was also great that the care home liaised with the GP and looked after his increasingly complex medical needs. He'd also been rather lonely in the sheltered accommodation - concentrating on pretending he could cope.

Obviously it depends on finances, but it was easier to persuade my FiL to get a 24/7 carer to help with MiL, as she was still at home, and being 'looked sfter' by FiL and a nice lady.
Does your DF have inco pants, to help with the washing load.
MiL went into home after about 4 months, but by then FiL realised that it was impossible to keep MiL at home. They are both much happier.

I am sorry OP, that's really hard and only 64. I feel for you and your mum, such a difficult position to be in.
I've no direct experience myself, but a close friend has within the past year moved her lovely husband into a care home in almost exact circumstances as yours. The family managed to find a wonderful care home and after a wobbly start he is actually very happy there. There is entertainment and company and he enjoys that.
Like you mum, my friend was really struggling to cope with life and the house and garden and her own mobility on top of care for her husband and was worried he would become a danger to himself as he would wander off. I think that was the major decider for her.
Would involving you Dad in the choice of home be any help or comfort do you think?

Gosh that's so young at 64 @lollap
My mum went into dementia care last year at 87 after she physically collapsed, nothing short of the inevitable S services involvement would have got her out of her house of 65 years.

Mum has had a diagnosis for 15 years and was a huge worry to my sister and I as our dad had died many years earlier.
As I understand it if your father remains at home the local authority will part fund his care so financially this option was doable for us, now mums in care it's £950 a week and no financial help so her house sale is paying until we sort an annuity out.

I think the local authority couldn't force a sale in your case as your mum lives there too but they will put a charge over the property and it soon mounts up although it sounds like your dad needs physical care on top of dementia which they will fund.

I'd look at setting up four daily home care visits and regular respite for your mum for as long as that's possible.

I think the time for a care home is when meeting the persons needs is not able to be fulfilled long term - so in your dads case, your mum is coping right now, but it sounds like she is reaching the end of her coping. How does she feel about the prospect of him going into care? Would she accept the idea of him going into respite care for 2 weeks so she could have a holiday?
My mum had multiple respite stays when my dad was ill though he was totally opposed to her going into care, and they did manage to stay together till he died by having a cleaner, gardener, private carer, handyman and not cooking

Are you involved with Social Services?

Yes, we're involved with SS but they've not been great. It takes a couple of weeks to actually get to speak to someone. He's on the full care package through them.

I broached respite recently so my Mum could get a break but he refused saying he'd be fine at home 🙄She never went away because he wouldn't be fine.

They have a cleaner already. I've considered looking into additional private care but don't know what/when etc.

I wonder if meals being delivered and a laundry service might be workable.

Meals and laundry sound like a great start. Anything that can take some weight off. Can someone come and keep the garden mowed and weeded?
Have you looked at a live in carer? I'm sure it must be very expensive, and have they the space?

Haven't looked at a live in carer, they have the space but I'm not sure they'd be up for that. Will have a think and will broach a gardener too.

how many carers do you have throughout the day? 4 visits per day is normally a sign that full-time care is needed.

I can give several examples of trajectories from personal experience ...

relative 1
lived with wife, carer visits for 2 hrs per day (private) for a year then care home when wife couldn't cope. She visited every day but the home did the personal care and lifting.

relative 2 (wife of above, 5 years later)
moved closer to family, daily care visits then live-in carer in the spare room for 1 year then care home when she was not safe during the 2hr gap when the live-in carer has a break

relative 3
insisted on remaining in unsuitable home. daily care visits then live-in carer for more than a year. would not consider a move. fell and broke hip, went from hospital to care home and then stayed there.

In all 3 cases, relative was happy, secure and safe in the care home once the move was made, and it gave the rest of the family more time to visit and enjoy their company rather than doing physical care.

MIL is getting towards needing residential nursing home care. She has dementia - vascular and Alzheimers - and has carers in 4 times a day. We talked with the carers about it and they say she is OK for now, that the usual metric for requiring a care home is when sleep is continually disturbed.

The lady across from us used to be up in the middle of the night pottering round the garden and nearly burned her house down making toast at 3am before SS stepped in.

Your only way to get him in a home while he’s got capacity, and is refusing, is for you and your DM to refuse to care for him.And let him fail.
Have you got both POA’s and is a will in place ?

With his poor mobility and other health issues he may need nursing care rather than residential, which is something to consider. If his dementia is severe, possibly EMI nursing, or at least a dual status home where he can easily move over to EMI care. Has he got a prognosis? Are you already getting 4 calls from carers a day? Is the district nurse involved? Would he be entitled to continuing health care? Does he have capacity to make decisions around his accommodation? What does your mum want to do?
Wiltshire foods can be useful. Private 24 hour carers are obviously expensive, but worth considering if money isn't an issue.

We have POA, welfare is not yet invoked but it has been discussed with the GP who raised it with me. His psych doesn't think it's needed yet but he sees him for 10 mins rarely. 4 carers come during the day and have for a few months now. No district nurses.

He has capacity somewhat. It's difficult to tell really. He says no to anything Mum suggests (i.e. a change to his routine that's needed) and then I'll speak to him and he comes round. To be honest neither of them realise the severity and complexity of his needs.

My experience is that as long as your DM and you contiunue to care for him; SS will not get involved. It can be as simple (and misleading) as SS asking your dad if he wants to move to a home and him saying "No, DW and lollap are looking after me" and they will go no further.

What does your DM want to do? You are clearly concerned about her, but is she willing to step back from the level of care she is currently providing?

I need to have a long chat with her. My Dad has a friend coming to visit tomorrow and my Mum and I are going a for a walk and a coffee to get her out the house so I'll use that time to speak to her properly.

My experience of SS, and believe me - we had hell with my MIL - is as pp and me previously said. As long as you offer to fill in the gaps between carers, SS will leave you to it. You have to refuse and let him fail to get anywhere. It’s sad, but true.
And you’re right, your DM won’t see how bad it is while she’s in the situation. It’s those looking in who see it.

@lollap can I recommend the excellent Elderly Parents board on here, under Other Stuff, if you've not come across it? Wealth of info from others who are in similar situation, good place to vent and non judgemental!