Care home move WITHOUT a crisis, what stage did you manage it?

[SinisterBumFacedCat]

My DM is probably 4 years into Alzheimer’s, fairly young at 66 and has gone from being in denial, resistant and argumentative to very anxious and needy (sorry that sounds horrible but I can’t describe it any other way). She has meals on wheels and carers every evening to do medication. I do the meals at the weekend. She is very engaged with the church and local Alzheimer’s group but panics before going out and calls me constantly. She wears the same clothes for weeks and I don’t think she washes often (although she says does) she will make things up. Sometimes she calls me in the midst of a hallucination about children being in the house. She did go through a phase of false accusation accusing me, DH and DS of stealing from her and went out of her way to make out DH was persecuting her to everyone (he has actually done more for her than most of the people in my family), which has essentially left me quite isolated in having to deal with her, with only one of her brothers helping. However I don’t want to confuse my difficulty in caring for her with her ability to look after herself. I don’t want to get to the point where she has a major crisis that ends up with her moving to a care home because I don’t think she will necessarily be too resistant, however I don’t want her going into a home too soon and being surrounded by people who are at a much later stage and may be aggressive or so much further down the line they can’t communicate or move. I don’t really even know what stage she’s at, when I look it up her symptoms vary between stages. She is often anxious and distressed but also can still have laugh. Conversations are difficult because she flits back and forth between different subjects. Most of the extra care sheltered housing around here are private and refuse people with dementia, some I know actually evict them if they get a diagnosis, so care homes are the only option. Can anyone tell me at what point you made the move to a care home without a crisis happening because I have no idea if we are there yet or not?

[CrotchetyQuaver]

When my mum became a danger to herself and needed watching most of the time mainly in her case to prevent falls

[Alphabet1spaghetti2]

When mil was found wandering without shoes and her clothes in disarray. I was at the end of being able to cope single handled with her, carers would have still left gaps in the day where she could come to harm. So care home it was. I lied and told her it was just while I decorated. Luckily she never remembered her old flat and loved being fussed over all day.

[IthinkIsawahairbrushbackthere]

My mum went into hospital with a suspected stroke but at that point she was still able to have a reasonable conversation but she very quickly deteriorated away from home. Because of the wait for an increased care package she was transferred to the rehab unit. I had been her carer for nearly 20 years because of her lack of mobility from arthritis but the cognitive decline exacerbated the mobility issues and it made it impossible for me to care for her at home. We framed the home as somewhere for her to try for a little while but we knew that she was not going to be well enough to return home.

So although she went to the home from hospital it wasn't really a big dramatic crisis like some people face with their loved ones. She was well enough to come home 48 hours after being admitted and only stayed because I had a breakdown and suffered amnesia. But the "crisis" such as it was was minor, not dramatic.

[SiouxsieSiouxStiletto]

DMIL developed Delirium and we called 111 who said to take her straight to A&E. They admitted her and seemed very motivated to see if it was something else other than Dementia causing the hallucinations. From there she was moved to a Care Home.

She did ask to go home often but it wasn't her home of 50 odd tears that she was asking for, it was the sense of comfort from her childhood home that she wanted.

If your DM thinks that there are people in the house it sounds as if she too may be developing Delirium. In our experience it was a very short step before she started wandering.

Have you sorted out the Herbert Protocol yet?

It's probably worth filling in the This is me and keeping it on your phone in case she ends up with a Hospital admission.

If you want to suggest a move now, have a look at the CQC reviews of the local homes and see if you can find reviews from families and residents.

Has she had a Care Needs Assessment recently?

[Nomorebollocks]

To an extent it depends if she is self funding or not. If she is going to be paying for her own care, she can move to a home whenever she wants to, as long as she finds somewhere she likes and which agrees to take her. If she’s not self-funding, the local authorities are unlikely to agree to pay for her to go in a care home until she cannot be left safely overnight.

MIL didn’t have a crisis as such, but it was an unsustainable ongoing situation that eventually got too much. FIL was caring for her, but not very well. She didn’t drink enough, didn’t take her meds properly, developed a raging uti and delirium, and went to hospital. Prior to that she was increasingly unable to manage in the toilet or shower, getting dressed etc but FIL was muddling along. He revealed afterwards that she’d been having falls as well. In hospital she lost a lot of mobility and was doubly incontinent. They kept her in to try and address these with no success, it was clear that FIL couldn’t manage at home even with 4 care visits a day, so she went into a nursing home.

[SinisterBumFacedCat]

Thank you for all the advice. Things have seriously deteriorated, DM is now anxious and confused, constantly ringing everyone, thinking she is going to starve, doesn’t recognise her surroundings, thinks she is outside when inside, can’t work out how to turn on the tap, thinks other people are in the house. She has cares twice a day, meals on wheels etc but that doesn’t cover hardly anything. Social services are now aware of her and have prioritised her assessment, GP has ordered blood yes but everything is happening so quickly. She has had antibiotics for a UTI but no change in her behaviour. I’m not able to get over to her because I have Covid. I think she needs to go into a home but everyone else seems to think just muddling on is ok for now. She has started wandering and has been found by the neighbours luckily. I think she is also wetting herself. It’s a nightmare and I don’t know what to do.

[LaBelleSauvage123]

Whereabouts do you live? My father is in an excellent dementia care home - there are people of all ‘stages’ there, from those who you would hardly know had dementia to those who sleep most of the day. Happy to recommend - we are in Somerset.

[oldestmumaintheworld]

Move your mum as soon as you can find a good care home. The longer you leave it the harder it will be for her. We left it far too late to move our mother and it was so difficult for her to accept. No one wants to have to put their parent into a care home. You feel so guilty but with dementia it's the best thing to do when the person cannot care for themselves. It's very hard.

[AmbleInAnnBoleyn]

Make sure the home offers nursing as well as care. You don't want her booted out because her needs can't be met further down the line.

[SiouxsieSiouxStiletto]

@AmbleInAnnBoleyn

Make sure the home offers nursing as well as care. You don't want her booted out because her needs can't be met further down the line.

This is really good advice.

[PlumsUp]

Moved my dad into a home recently. No significant crisis but mum was finding it harder to meet his needs, he needed helping with all aspects of basic care, was extremely anxious if mum left the room etc. He wouldn't be safe left alone and would wander etc. In some ways it felt a little to soon but caring for someone with dementia 24/7 is exhausting and mum was wiped. A place was available at the home he'd been to for respite so we went for it, he seems happy enough but it's early days and we are all feeling sad tbh. But dementia only ever gets worse and it might be better that he's moved at this stage while he has some awareness rather than something happening and him moving while in a complete confusion.

[PermanentTemporary]

I think if she's wandering at night that is a crisis tbh and you should be asking for a social services assessment.

I'm so sorry.

[Beamur]

If you are self funded - you can go anytime. But if you need local authority funding, then they decide.
Contact Social services - it sounds like it's getting difficult to manage at home.

[SinisterBumFacedCat]

Update - DM did end up moving into a home pretty quickly, she was getting lost, the manager of a group she went to reported us to social services. But by the time they got around to doing the actual assessment she had been in the home 2 months already, I have no doubt had she not been self funded she would still be at home with family expected to cover her care, despite everyone saying she is now in the right place. We managed for 4 years with her at home, me and her brother and carers coming In but she suddenly deteriorated and it was no longer possible. The home is nice and close but it’s not the way anyone wants to end up living.

[FrostieBoabby]

When she set the kitchen on fire and a few days later fell and broke her hip after me spending months phoning social work everyday begging for help. Straight from hospital to care home after being 100% let down by the social care sector.

[veryfondoftea]

@LaBelleSauvage123
Could you recommend the excellent home to me please

[LaBelleSauvage123]

@veryfondoftea it's Russets and Sherwood in Winscombe but St Monicas Trust have a number of homes in the Bristol/ N Somerset area and they all look good.

[veryfondoftea]

Thank you