Active discussions

Please or to access all these features

Talk
Elderly parents
Original poster

Trying not to panic - routine help required

35 replies

Tintackedsea · 24/08/2025 21:57

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?

OP posts:
New posts on this thread. Refresh page
ByQuaintAzureWasp · 27/08/2025 14:04

Have you applied for attendance allowance? You should. Has she been assessed? She should be. Pay for as much professional support as you can. Good luck

P00hsticks · 27/08/2025 14:03

What about colouring books ? They'e no longer the preserve of children - you can get some quite sophisticated ones for adults these days. We have a lady with dementia who comes along with a friend to our arts and crafts group and she enjoys colouring in a book of Kew Garden flowers (and occasionally going completely off-piste with regard to the example picture on the opposite page!)

Original poster
Tintackedsea · 27/08/2025 13:57

Does anyone have any ideas for how to occupy people with Alzheimer’s beyond the tv? I give her wee household tasks when I’m there and we go out for a stroll or to pull up a few weeds in the garden but what can she do when I’m not there?

in reference to points raised up thread: -

There’s a nursing home for people with ill health which my mother doesn’t have. Other than Alzheimer’s she’s fine. The places come up there fairly regularly (sadly for obvious reasons).

The care home is full. There are no places. There are people with less capacity than mam who have been waiting over a year. If I weren’t here my mother would be left to sit in her house with three points of care and no other support. That’s just the reality.

The carers are all lovely, kind ladies. We are incredibly lucky. They helped me nurse my dad at home until he passed away. They have genuine care for my family. The experiences they have had of people in other situations would make you weep. I can’t abandon my mother to prove a point to social services.

OP posts:
EmotionalBlackmail · 26/08/2025 19:33

SS are being useless. Care homes, for
obvious reasons, have constant turnover of places. If you’d broken your leg, been in a car accident, had to go away with work or been abducted by aliens they’d have to find her a place in a care home.

They're either not looking far enough or refusing to pay the costs of all but a few homes .

NecklessMumster · 26/08/2025 18:47

Social Services have a duty of care though. If they have assessed her as having care needs then under the Care Act they have to meet them. Which can include you, but what if you weren't there? Or become ill? I suppose they'd place her out of county/local area, which is no good for you. Ask for a Carers Assessment for yourself. Any Age Concern or Carers UK coverage? I agree respite can cause more confusion and not always helpful. SS could also give your mum a direct payment to arrange her own care which you could use to pay privately, if you can find it. I hope the meeting is productive.

JulyM85 · 26/08/2025 14:50

This reply has been withdrawn

Withdrawn by MNHQ

stayathomegardener · 26/08/2025 14:46

My Mother’s brilliant dementia care home is £1k a week in Cheshire, was a wait to get in though.

Viviennemary · 26/08/2025 14:45

In the circumstances you describe it will be very hard to give her the support she needs to stay in her own home. Either get some extra help in during the day or if that doesnt work it will have to be a care home. You can't go on shouldering this on your own.

Wateringinaheatwave · 26/08/2025 14:44

Is there any chance of live in care?

Wishiwasatailor · 26/08/2025 14:41

Can someone go with her to the dementia groups the first few times? My granny was adamant that she didn't want to go. I went with her for the first few weeks the first few times she said she didn't want to go. By the 3rd week she was very happy and settled and would be very happy once we got there.

Wishiwasatailor · 26/08/2025 14:35

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

TonTonMacoute · 26/08/2025 14:32

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.

Original poster
Tintackedsea · 26/08/2025 14:22

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.

OP posts:
BrunchBarBandit · 26/08/2025 07:41

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.

FeatheryFlorence · 26/08/2025 07:37

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).

BlueLegume · 26/08/2025 07:25

@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.

sosorryimnotsorry · 26/08/2025 01:22

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.

Original poster
Tintackedsea · 26/08/2025 00:31

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?

OP posts:
DemonsandMosquitoes · 25/08/2025 09:05

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.

girlfromthesouthcountry · 25/08/2025 08:19

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.

EmotionalBlackmail · 25/08/2025 08:19

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.

StrongTea · 25/08/2025 07:38

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.

Redburnett · 25/08/2025 07:24

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.

Dearover · 24/08/2025 23:01

...FT job and NO capacity...

Dearover · 24/08/2025 22:51

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

Swipe left for the next trending thread