Trying not to panic - routine help required

[Tintackedsea]

I’m trying not to panic. I would appreciate help thinking up a good routine. Apologies for the length. I’ve tried to split it up.

Background:
My dad was my mother’s primary carer. I did all their cooking, shopping, healthcare appointments and admin and some of the cleaning. He helped her with everything else and was with her most of the time. Dad got cancer and I (along with my siblings) nursed him at home until he passed away last week. My siblings have returned to their homes (100s of miles away). They are supportive from afar but my brother works off shore and is about to become a dad and my sister has preschool children and lives two flights away. They used up all their leave to help with dad.

Her Situation:
She has had Alzheimer’s for a few years and needs support getting washed, dressed, all meals. She needs someone to help her to bed and to stay overnight because she’s terrified of the dark. She is usually continent and reasonably cheerful. She ok-ish during the day and enjoys being given wee jobs like dusting to do but needs supervision. From about 5pm she stops knowing who anyone is, where she lives, what’s happening. Her mood darkens and she can be cross and fearful. She has declined significantly since dad became ill and more so since he died.

My situation:
I live next door. I have three primary children and a stressful ft job. I’m currently off work on bereavement leave but will need to return soon. My husband is supportive but also works.

Carers:
She has carers 3x 15 minutes. They come at 10.30, 5.30 and 7.30. She’s afraid of the evening carers and very resentful of them being there. If I can hold her off from getting dressed the morning carers will help with washing and dressing but it’s quite late to start the day. She likes the morning ladies. I’ve approached a private carer but not heard back. The council carers tell me there’s not much out there.

Friends and family:
She has a good friend who comes to take her out an afternoon a week which she loves as long as it’s not to any dementia related event or place. Other people with memory issues upset her. At dad’s funeral various family offered to sit with her sometimes.

Future:
There are no places in the local care homes and anecdotal reports suggest that isn’t going to change plus it’s over £2k a week. Social work aren’t returning my calls. We live very rurally. It is likely that I will care for her until she becomes physically ill/dies.

Questions:
How do I set up a routine that allows us to manage?
Are there templates or planning tools I can use?
What should I get the carers to do? These times are not useful for her current routine and I don’t know what to use them for.
What tips do you have for helping me help her?
How do I get her to accept care?
What can I get my siblings to do?
How do I manage my own mental health because currently I feel overwhelmed and ill?
Are there benefits I or she can access?

Sending supportive thoughts and will try for practical ideas in the norming. I sorry for your loss and hope you get to sleep tonight at least.

I'm so sorry. This sounds incredibly challenging for you, just as you are also dealing with your own grief.

Have you & your siblings visited all the local care homes and asked to go onto the waiting list for any you like.

I'm with my own mum who proudly told me she got dad up to help with her tablets at 5am this morning. A 10.30 visit wouldn't work for her either. What time does your mum usually want to get going in the morning? Again, keep requesting visits at times which suit you & your mum until slots become available.

Keep ringing social services. Use the phrase 'carer breakdown' ( for yourself) and say that it's an unsafe situation and you need an urgent care package review, a Care Act Assessment. 15 min visits are much too short. If the carers were arranged via the council they have an obligation to review the care package. It's not just up to you to work out a good routine, they should be helping you ( this used to be my job). Social services are massively overstretched so if they think ' oh, the daughter is managing things' they'll prioritise others. There might be other dementia services in your area that they should be telling you about. Getting worse at tea time is called 'sundowning' and is quite common. In the meantime take up any offers of help from friends etc ..pin them down to days/times.

I don’t know about elderly care medication so forgive these potentially stupid questions:

Does her medication wear off at 5pm or something?

Could she be put to bed with a sleeping pill to get her through the night so she doesn’t have to be awake and scared? Or accompanied overnight.

My condolences for the loss of your father.

About the situation of your mother, perhaps there are available places in care homes further away? It seems like she needs a lot of care.

There is such a thing as crisis care. This is a crisis. Keep calling social services. And keep calling your siblings. Share the mental load.

If there is one certain thing in this, it is that there will be spaces in care homes in the future. In the meantime, they might want to place her further away. Could she be near one of your siblings?

Sounds really tricky. How much space do you have at home? Could she actually live with you so not alone at night. You could then either sell her property or rent it out and use the money to fund having a carer with her covering all the hours that you or other friends are not around. If it was someone with a car they could go out for drives/ coffee and cake etc .
This may not work if she cannot recall she has moved as she might get distressed with other people living in her home.
Are Your houses physically joined together? Could you create a door through so she does not feel alone.
It will be hard to continue to manage this as the dementia process progresses and there is likely to be a noticeable steep decline with your dad gone as he would have covered a lot of her deficit for a while now. Does she have enough funds to afford a live in carer as that is probably the ideal but most people cannot afford it.

@RentalWoesNotFun 'Sundowning' is a phenomenon which is often experienced by those with Alzheimers, where they become inceasingly confused and agitated towards the end of the day - it's not medication wearing off.

Well, there is a fairly clear clash between her needs and the support available.

if your siblings have used up all their leave and in addition live/work a long way away then there will be limited amounts they can do.

caring for someone with Alzheimer’s is a pretty 24/7 job so even if you want to do it, you can’t because you have three kids and a full time job.

if she or you have money then you can get private carers although they are much harder to come by in rural areas.

if you can’t afford private carers then I’d suggest getting onto Social services to try to up the visits to 4 a day.

again, if you or she has the money then you can look at care homes. If you don’t have the money and you feel a care home would be the right place (and honestly it does sound like she is at that stage) then you’ll need to get social services to assess her.

I’m so sorry you’re going through this OP. I agree that SS will step in if they see it is a crisis. My father has dementia and mum is full time carer. She was hospitalised in April with heart problems and despite ss not wanting anything to do with us previously, they were amazing when things fell apart for us and we couldn’t have got through that time without them. Make sure they know you’re not able to cope. That will be the trigger for help - there are no medals for bravery in this situation. Good luck x

Constantly remind SS that you have a FT job and job capacity to take on her care.

Does she have a buzzer/ telealarm? If not, it's a quick to sort thing which can make a big difference

...FT job and NO capacity...

You need to prioritise your DC, sorry but that probably means residential care for DM even if some distance away. Your own children need a functioning mother who is there for them, has time for them, and is not constantly thinking about GM next door.
It is very sad but there comes a time when it is impossible for family members to cope.

Are you in Scotland? Think that your mum is entitled to 4 carer visits a day. Keep phoning social services. I recently phoned to discuss carers for an elderly aunt and uncle and they were helpful. Problem is maybe shortages of carers if you are rural. You certainly can’t do this on your own.

You can’t do this on your own, it’s too much and not fair on you or your family.

If SS don’t answer the phone do they have a crisis/emergency number? Can you contact your MSP or local councillor about SS failure to respond? Emphasise that the situation has changed now she lives alone and that you’re not available.

I commented on your earlier thread as well, and I'm so sorry to hear that your father has now died. I hope it was a peaceful end.

To reiterate what I said before, I think the prospect of caring for your mum at home with you sounds exceptionally hard, and will have a massive impact on you and your children. If I were in your position (and, as I mentioned on the other thread, I'm perpetually scared that I will be), then I just couldn't take this on. I don't know the answer, but all I can think of is to keep hounding SS while you're still off work and repeatedly insisting that you cannot take on your mum's care. (Your siblings can perhaps also help with the hounding?). Have you seen your mum's GP? Could they provide any pointers or help apply some pressure on SS? I don't know how rurally you live, but could you try to cast your net wider in terms of looking for care homes? That's only really helpful if your mum can afford to fund it, however, as you don't know yet whether SS would fund residential care. Would selling or renting her house fund this?

I'm so sorry, I both can and can't imagine how hard this time must be.

Your family come first. SIL ended up on antidepressants living next door to PIL as they aged. Not a life I’d want for my adult DC.
I would step back and make plans for a care home. The home may have to be sold but no better use of someone’s assets towards the end of life. Today is the best she will ever be.

Thank you for all your replies. I really appreciate the time you have taken.

I finally managed to get hold of social work and we are meeting tomorrow. She reiterated in the email that there are literally zero places in the care home. There is an option to access a few weeks of respite (which I think she would hate and would confuse her terribly) but beyond that are no other options. It’s carers who come at crazy times and there’s me. I need a plan for right now not for the possibility of a care home far into the future.

I’ve had a bit of a set to with the GP because they want her off their books. I’m on the point of writing to the health board to complain. Totally useless in terms of support and, frankly, unkind and unprofessional.

She has improved a bit the last couple of days. I’ve been staying overnight and running back and forth between our houses during the day to check on her then we’ve all been eating dinner together. I think she likes the company. Dad’s illness was hard so this feels lighter in some ways.

I think we might get cameras. Does anyone have recommendations?

I’m a self employed carer and 3 x 15 minutes is definitely not sufficient. It isn’t sufficient for anyone in reality. I refuse to do less than an hour for virtually all clients as less than that simply isn’t enough.
Can you arrange private care for her. Advertise locally, local notice boards and Facebook groups are good places to start as is the local church.
I would agree that it’s not uncommon for evenings to be tricky periods. My advice would be to try and arrange private carers a minimum of 1x 1hr and 3 x 30 mins daily. More if you can afford to. Cameras are a good idea. As is having a call/fall alarm if she doesn’t have one.

@Tintackedsea I think she likes the company. That sentence jumped off the page for me in your last post. She may like the company but your own family most likely also like your company and they need you. Your DM NEEDS either carers on a more permanent basis or a nursing home. Care homes being mentioned are all well and good but many cannot cater for higher needs and you do not want to have to find she settles in a care home but that they cannot cater for later nursing requirements.

Awfully difficult situation for you on top of dealing with a bereavement. Do take care of yourself where you can.

Can you try your local FB group? I needed something similar for my Mum, and had lots of responses from private carers, people who would come and do a bit of cleaning and be company for an afternoon, to recommendations for local care providers (there was one called Home Instead, I think, which cropped up regularly - they are a chain. Not cheap, but reliable).

As well as all the excellent advice from PP, may I suggest a visiting rota for your far flung siblings. They cannot leave this to you and whilst they may have used up their annual leave surely they have weekends available? Each sibling should schedule one weekend a month to stay with your mum and give you complete respite so can you recharge and spend time with your own family/friends/interests.

I’ve messaged a few possible carers and cleaners. There’s very little available. No agencies or anything. Very rural and remote.

The social worker confirmed that the needs based care home list has had people with much less capacity on it for over a year. Mum won’t be getting in for a long time.

She’s still only getting three points of care. These times are fixed and can’t be altered for the foreseeable future. This is my plan:

7.30 - washed and dressed - me
8 - breakfast - husband
11 - lunch - carer
5 - tea and biscuit?? Something else?- carer
6.30/7pm - dinner - with family
7.30 - dinner? Wash? Something else? - carer
9.30 - bed - me

I think I can get a pal to take her out one day a week and befriender charity one day a week.

My siblings are not shirking but they really can’t be here very often.

Places come up in care homes all the time, there is constant churn as (apart from the obvious reason places come up) people go in and out for respite care, others may go in temporarily to recuperate after time in hospital.

You have to be 'that' person. Ring every day, get a name of an individual if you can, and nag nag nag. It's awful and draining but quite honestly nothing else works.

If the GP wants her off their books they should help you to find a place in a care home!

Try and see if there is local carers group as they can be very helpful.

Are there any age concern groups locally? Many rural areas have dementia friendly parishes is there anything like this near you?
Have you seen the older people mental health team about her sundowning? There's medication that could help.
have you applied for attendance allowance and blue badge?
could she have her wash at the 5pm visit and then warm drink/biscuit/pudding at 7.30 (they could also get things ready for the next day) she might be less upset that way round having less pressure being put on her to do something when she's tired and a sweet treat might help her relax with the situation