DM going into care - what happens at an Assessment?

[WhoisitnowRalph]

My DM has had Alzheimer's Dementia for 3 years, and over the last 4 months she has lost about 80% of her mobility - she can just about shuffle with a walking frame, but she's falling over repeatedly now and paramedics have been out to her on about 6 occasions since October - 3 of those in the last 7 days.

I managed to double her private care visits to 4 per day over Christmas, right up to the earliest date I can get her into respite care which is new years eve - she obviously isn't safe and can't go on like this, I'm on tenterhooks all night wondering if she'll fall getting up for a wee, and although daytime is easier most of her falls have happened after lunch when she tries to "rush" to the loo but there's no carer there.

The care home (which is fabulous, costs a small fortune but it's worth it) is coming to do a needs assessment on Monday but haven't told me what it entails. What do they do, will they ask her questions and try and get her to demonstrate how poor her mobility is? Am I able to be with her? She finds interactions exhausting and I don't want her to feel humiliated or as though she's failed a test.

I have so much going around my head. I have cameras set up in her flat (mainly for her front door, as she sometimes wanders) and one has just alerted me that she's got up to go to the bathroom. I'll be in a state of anxiety until it picks her up coming back. I'm 30 minutes drive from her.

I'll be so relieved when she's safe in care (3 days and 3 nights to get through without caving in to a hospital admission), yet so sad that it's come to this.

Can you not stay with her for this short period?

You should definitely be there for the assessment. They will be checking that she ‘fits’ with the level of care she needs and the level they provide, it should be difficult and should be straightforward. Are you not able to stay with her until she goes?

They will be very experienced at interacting with people with dementia. They will just chat to her and observe her, they won't in any way badger her or try to make her "do stuff".
Don't forget, they want her to choose their home for her care!
A good home, which you say this is, will always have her best interest at heart, "best interest" is actually a legal requirement, especially if she will need DoLs (be unable to leave the home unaccompanied for her safety) and they will have done this hundreds of times.
If you can be there it would really be beneficial, as next of kin, your input is both valuable and necessary.
Try not to worry, it is stressful, but honestly, a good dementia unit is worth its weight in gold for peace of mind and care for you and your mum.

Don’t worry, the assessment is for them to get to know her, and find out her needs; mobility aids, dietary requirements, what are her hobbies etc, what worries her. You will be able to be there with her during it. They will probably ask if you have power of attorney, and will probably gently suggest that if you don’t have it, to arrange it. Encourage her to ask any questions.
I went through the same with my mother exactly two years ago. I was so relieved that she was going to be safe (although not dementia). It’s not a test!
Good luck!

Not easily, no, although DH and I have discussed it endlessly and tried to see how it could work. The flat is very very small.

But I was asking about the needs assessment?

Go to the assessment because it’s also about what her likes and dislikes are, finding out about her background to brief staff.
Could carers provide 24hr care until the assessment?
🌺🌺for you, it’s a really tough time.

Sorry cross-posted. POAs all in place already, DM knew something was changing and organised it all herself about 6 months prior to her diagnosis. She is a clever woman!

The home specialises in dementia and I spent an hour grilling them on their approach. It's just that when I called them earlier to check something they rather haughtlily said "this is all subject to the assessment" as though they reject people all the time!

Practically it would be difficult to stay, although emotionally it might be easier on my blood pressure to just spend 3 nights on the floor propped up against her kitchen doors with some pillows. If she falls I'll still need an ambulance as she's a dead weight, I can't lift her and there's not enough room for me and DH to stay.

Thanks for the reassurance about the assessment though, that's really helpful. This is all new to me.

The private carers don't currently provide overnight care - and even if they did, there is nowhere for anyone else to sleep so I imagine it wouldn't meet the criteria for anyone to stay? I know you can give the bedroom to a carer and convert the living room to a bedroom for DM, but that would be extra upheaval for her.

It's useful if you could be there. They'll make it seem more of a conversation to your DM but depending how she is with the GP etc, this might still be unsettling.

My DF hated 'wasting anyones time' for things like his leg falling off pre dementia so was a nightmare once he understood it all a bit less. He also had a very sarcastic dry humour and some people took him very seriously once he was ill... I. E. He was t total for 30+ years but if asked if he'd like a cup of t, he'd always joke about preferring whisky etc to the point his nurses thought he might be a bit of a drinker You can tell the home truths she might not be able to / want to admit, and add any context.

Sounds like you are doing great by her and hope it goes smoothly OP

Oh also, the carers need more notice to increase the attendance - we somehow got lucky with capacity going from 2 to 4 with 48 hours notice, and I did Christmas day obviously. There is no LA/NHS assistance at such short notice.

Oh thanks, I was starting to to feel guilty all over again. I feel guilty all the time, that I'm not a better daughter and struggle with the clearing up of bathroom mess after falls, and that she never wanted me to do caring duties. She didn't know who I was earlier.

I just want her to see out the rest of her days in comfort and safety, I want her to be alright. I don't mind that she doesn't know me, I just hate seeing her so confused and I can't make it better for her.

I didn't mind clearing up shit from the carpet, but cleaning it from her broke my heart. It's not the shit, it's her awful helplessness and vulnerability.

The 'subject to assessment' thing is because there are huge variations in the general public's understanding of the different types of care available.

It's common for example for people to ring up their local residential care home to ask for an assessment for a relative, when that relative actually needs nursing care and can't have their needs met in residential and vice versa.

Many places that say the can meet the needs of people with dementia actually only cater for the 'pleasantly confused' rather than anyone with more challenging needs.

I wouldn't worry too much though. Usually if they have agreed to come and assess it means that they feel they can most likely meet her needs. They have to complete an assessment before they will offer a place, so it's as much a formality as it is a useful information gathering exercise.

Aw Ralph - it is so hard to see dementia take a loved one from you.
Just try and remember, the staff in a good unit will get to know and care for her as she is now - they won't be grieving the person she was, and she WILL still have happy times, and sing and chat with them. They will be trained to deal with the (literal) shit, and can detach as professional carers, when you just see Mum if that makes sense.
They will be happy to update you whenever you want, the daily notes will record just about every minute of her day and you can look at them too.
You aren't failing her, you are doing the best you can, dementia is a truly horrible disease, and it does need more care than one person can provide.
Be kind to yourself

Oh I see, thank you. It's such a massive learning curve for me at the moment!

I don't think her needs are complex - she definitely needs dementia care as she is rather beyond simply confused, and her sudden loss of mobility is a major need - but other than type II diabetes she has no other medical needs.

It will be for the home to make sure they can meet her needs. You can get Dementia Residential and Dementia Nursing so it is important that they don't say they can accept someone who they are really not equipped to support. They will also consider how her needs may affect other residents- for example if your DM had quite high complex needs that required a lot more support then their usual resident, they will consider how many other residents also have similar needs and if they can cope with this.

The needs assessment will look at things which would be included in the care plan, will look at how much support she required with personal care, feeding, if she is compliant with meds, how her behaviour is managed, any anxiety etc etc

We are at this stage with my MIL but she is in a respite short term place currently awaiting permanent residential care. She will be LA funded as she has no money or own home. She has had 2 needs assessments so far from 2 different homes. One rejected her as they feel she needs nursing care. She currently has 30 minute one as she is at very high risk of falls. She does not remember that she cannot get up! The other want a top up fee so we are negotiating with them, as we would have to pay it. The LA may pay some of the top up as where she currently is is costing them much more!
At the assessments, staff from the home were present, we were at work. My friend does this for her job. They look at the needs and determine if they can meet those needs. Although my MIL is in the early stages of Alzheimer's she doesn't yet need a specialist place, but may do so soon.
OP, I would say, if she has a fall please get her to hospital via ambulance, don't take no for an answer. That way she can access respite very quickly as an interim measure. Actually my MIl has been there for 6 months whilst they tried to determine what was causing the falls. Now medics have decided she is not able to return home and also lacks capacity to make an informed decision.

Thanks PomBear. I've been keeping it together, I got a bit emotional taking her to the GP earlier this week when she struggled with the memory test, the grief of losing the mum I know suddenly struck me.

But I suspect the tension that is holding me up might collapse once she is safe with professionals, not limping by with me terrified every day!

I'm emetophobic and she's started doing this weird gulping/gagging/burping thing, which I assume is her swallow reflex starting to misfire. That sound fills me with horror.

If the home are any good they will want you there for the assessment anyway. They are there to assess what she needs in the way of care and help - if she has dementia and they are a dementia specialist then everything should be fine. The sort of things that can be an issue is if the person shows especially challenging behaviour (believe me, your mum sounds pretty normal, a bit of wandering and poor mobility are par for the course), or if the person has nursing/medical needs that they can’t meet.

You may well find that she thrives when she’s there - constant care should mean she is safer, may well eat and drink better, is less likely to hurt herself falling, experienced people will spot if she’s a bit poorly quicker, and she might enjoy the activities and interaction. To be frank, as someone who sees people with dementia living in residential care and people with dementia living alone or with elderly partners, I think care homes can be fantastically life enhancing.

Oh I think that too Purple - I think she will have a lovely time once settled in, she still has her sense of humour and everyone loves her! I want her to enjoy a bit of socialising again while she still has some spark in her. And she really comes alive around people who know how to handle the dementia and say the right things to keep her calm. She is a calm person anyway, and always a positive, cheerful person as well. She never complains, she's cracking funnies and flirting with paramedics even when she's on the floor!

What happens with the sudden loss of mobility, is it just the atrophy suddenly reaching that part of the brain? She says her legs don't feel like her own, and I can see she struggles to put one foot in front of the other - they won't do what she wants them to do.

No advice but for you, you come across as such a lovely caring daughter.

Sorry Soontobe and Fluffy, don't know why I didn't see your posts!

I feel reassured about the assessment and that she won't feel distressed by it, thank you. We have resisted hospital admission thus far because I had a care plan in place and a respite place arranged, we just had to survive a week - the GP listed many reasons why swerving hospital might be a better approach at the moment (care package would stop, care home might not assess whilst in hospital, dementia could escalate, hospital over an hour away from me, not to mention norovirus outbreak where she would have to go).

She is self funding - cash just over the threshold, plus value of the small property. The kicker is getting the property sold swiftly - she doesn't qualify for the 12 week disregard or a 6 month deferred payment, and the home will not allow fees to accrue on account. So if the property hasn't sold by the time mum has burnt through her cash in 5 months, we're screwed because I have to sign as guarantor. It's £5k a month.

We are in the queue for a local authority financial assessment, as she is already close to the threshold.

Please please do not feel guilty. The fact that you've increased care visits, arranged respite and a residential needs assessment is fantastic. And I don't mean to be controversial but the number one thing you've done right is acknowledge and accept it's time for her to live in a supportive environment while having done everything to support her at home.

I used to work as a commissioning manager for a county health service and it would break my heart that patients would max out on available home care and family would take the "max available" as "max needed" if that makes sense.

The needs assessment is to get to know your mum, see if their home is the right place for her (and make sure the family haven't fibbed about any challenging behaviour etc). From the sounds of things you have absolutely nothing to worry about and your mum should be happily ensconced in the next couple of weeks 💐

Ah Metallic now you gone made me cry.

Brilliant, thanks Trix - that's heartening! I spent the first few days wondering if I'd jumped the gun, but every day is a new challenge and I know its the right thing for her safety and comfort. The financial side is a worry, but none of that changes her actual needs does it. I'll cross that bridge if and when.

I'm so lucky that she isn't aggressive or difficult or agitated. She's super confused and walks terribly, but she's pretty easy otherwise! For now, anyway...