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Elderly parents

Advice please: Elderly mil cannot carry on living with me

475 replies

joystir59 · 28/02/2021 18:36

Sorry if this is a bit long:
My DW died in July. Her mum had been living with us for some years at this point. There is another daughter who is very hands off and lives approx 200 miles away
Mil is 87, poor sight, poor hearing, bad mobility, not able to manage her own affairs or communicate without extensive help, struggles to use the shower. I support her with shopping, laundry and overseeing things like GP reviews. She hasn't left the house for years. She is reclusive and uncooperative, will not grant her surviving daughter LPA, hasn't written a will, doesn't like anyone coming in to provide care or support e.g. if I want to go away. She is scared of being left alone at night and not able to leave the house unaided.
I have decided that she cannot continue to live here and I'm not prepared to become her carer and give up my freedom. I also don't think her needs are being met, and this will get worse. I want her to go into a nursing or residential home near her other daughter so daughter can oversee her care.
I understand she will need a Care Needs Assessment. Does anyone know if this can be done here where she now lives but then be used by the local authority in her daughter's area? Does anyone know how difficult it is to get an assessment that a residential home is needed?).
Any advice on any aspect of the process gratefully received.

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CagneyNYPD · 04/03/2021 13:50

I have just caught up with your thread and wanted to add my support. You are absolutely doing the right thing for both yourself and your MIL. You need time and space to grieve and begin healing. Your mil needs proper care.

I'm so very sorry for your loss.

LondonJax · 04/03/2021 13:52

@joystir59 I wish you all the very best in trying to take care of MIL. Because that is exactly what you are doing (despite what some on here may think).

My DMum was diagnosed with Alzheimer's 7 years ago. At first my DSis's and I managed to help her in her own home as she was able to shop, cook and look after herself with a little help. We got Attendance Allowance for her which allowed us to get domestic help as mum's issue was she forgot to clean properly. We were assigned an Admiral's Nurse - marvellous help to us in getting benefits etc. Worth speaking to that organisation if you are coping with a relative with dementia. They even managed to get a blue badge for mum - and we know how hard they are to get!

Then, a few years later, she moved into an Extra Care sheltered home - as someone has already explained, these are flats for independent living but with helpers on site to cover medical needs or similar.
She had begun to forget to take her medications despite us putting them into boxes for her and her Alzheimer's made her eligible as a council tenant to the extra help.

She was there a year when I found her, at 9.30am, putting her dinner in the oven one day. Her on site carer - who used to come in three times a day to do her tablets for her as she was forgetting to take those - confirmed that she'd had breakfast at 7.30am. Her district nurse (mum was diabetic) confirmed that she'd seen her do this once before. We discovered she was eating all her meals before lunch time and nothing then until the morning - which made her diabetes worse.

Within a month or so she had started wandering. Thankfully the main doors were on a pressure pad device which she didn't know how to operate or she'd have been in the road at 4.30am (the time the carer called me).

So we upped the help. We got Wiltshire Farm Foods so that mum's carer could make her a meal whilst they did her medication and sit with her so she ate at the right time.

Six months later she had a massive fall and never returned to her flat. She was assessed and we realised she had, basically, got to the stage where everyone was doing everything for her. We, her daughters, would organise all her medication, get her shopping, give her a shower, do her washing and ironing. Her carers were microwaving her meals, making sandwiches and cups of tea and making sure she had her medication. The domestic helper was doing her cleaning and also making her cuppas as was the district nurse. Mum literally was just sitting in a chair until it was time to go to the Day Centre once a week - which was the highlight of her week. What she was missing was company. We were all keeping her alive but not giving her a life.

As a family we spent so much time 'doing' stuff for her that we forgot she was our mum. There wasn't a lot of time for chit chat. We arrived, did her shower, put her washing on or got the ironing done if another sister had done the washing the day before. We'd get her ready for appointments - I covered 27 individual appointments one year as she had so many different issues. But actually coming in, making a cuppa and spending a few hours chatting just didn't happen anymore. She needed so much doing for her.

The respite home she went into whilst decisions were being made called me one day and said they really thought full term care was the only way forward now. So Social Services got involved. I was ready to fight for mum's corner but the meeting lasted 30 minutes and mum was on the list for a care home place at that point.

Mum's care home (LA funded as she was a council tenant) was lovely. Mum settled the minute she walked in. Just to see her laughing with the staff when we came to visit was lovely and to actually be able to get a cuppa and sit and chat to her knowing someone else was doing all the 'stuff' that kept her going was a blessing. She spent two Christmases there and Christmas Day was wonderful. Three course meal, presents for every resident from the staff, visitors chatting to everyone and all the staff in Santa hats with Christmas songs being played and residents joining in. The care was fantastic and their patience was something to see. I couldn't have done half the things they did for my mum.

Mum died last year, just before the Covid lockdown began. But for the two years she was in that home we got a bit of our mum back. The stress on our shoulders was taken away. I was getting, before mum went in, phone calls at 3am as mum thought it was 3pm (a common dementia problem). I'd get calls if she had a fall and would be sitting on the floor with her and a carer at 4am waiting for an ambulance to come and assess if she could be moved. Meanwhile my DH was at home getting our DS ready for primary school and I'd be clock watching hoping I wasn't going to end up in A&E whilst DH phoned work, yet again, to say there was a problem and he couldn't get in.

When she was in her care home she had a couple of falls. We found out the next day as the care home staff dealt with it, ambulance called, no major damage and back into bed. The stress that fell away from me was unbelievable. I hadn't realised how badly I was coping towards the end, before she was accepted for residential care home.

For mum and for us a care home was the best option. It was a pleasure to be with our mum again where it was beginning to become a chore that we just did out of duty. We've got lovely memories of mum in her care home. The laughter we'd hear as one of the team said something 'cheeky' to her, the smile on her face when she saw us arrive, then the smile on her face when we left as she realised tea and cake was being served (so we often went without even a wave from her!)

Sometimes doing the right thing can involve doing the hard thing. I watched a very dear friend of ours work his way into the ground trying to care for his DW even with four carers and friends helping. When she died it was like watching a slab of wall being lifted off of him - he was so tired, so stressed with all the things he 'had' to do. We know someone through friends of ours who can't go out after work now as her mum, who lives with her, calls all the time if she isn't home by 6.30pm. It's not a way to live and it builds resentment when final years should be filled with love.

Sorry for the ramble but people often dismiss or belittle the idea that relationships can be saved by making these sorts of decisions.

Frazzled2207 · 04/03/2021 14:07

@joystir59

That was short and sweet. The person who came was from the Independent Living team, to try and persuade me to keep mil here. I refused everything she offered, so now mil will be referred to the Planned Care team and allocated a social worker with a view to mil being placed in residential care.
Ok well that’s a very good start. Well done for standing firm!!
Frazzled2207 · 04/03/2021 14:11

@LondonJax
Thanks for sharing your story.
We have just moved an elderly relative to a care home which was an arduous and stressful process. She’s only been there a fortnight but everyone is beginning to realise it was by far the best thing to do.

ImaginaryCat · 04/03/2021 14:17

I'd just like to pop on and balance the books a bit in terms of adult social care. There are always the standard SW bashing comments, and hatred towards the system.
Yes, it's chronically underfunded but my mum had a bloody amazing social worker assigned to her when she got her dementia diagnosis. That woman was my absolute rock and we worked together as a team, often doing a good cop bad cop routine to cajole my mother into accepting the help she needed.
She helped me navigate the process of applying for support and getting mum into a home.
Please don't immediately put your guard up and assume all SWs are demons and will do everything in their power to screw you over.
Start from a position of optimism and try to work with them.

joystir59 · 04/03/2021 14:40

I understand the process steps, that SS try to keep people in their own homes wherever possible, but as mil pointed out in this morning's meeting, this isn't her home. I'm not prepared to have adaptations and carers coming in and out, for someone who doesn't particularly care for me or for being here now her daughter has gone. Mil's priorities are to be safe looked after and comfortable SOMEWHERE and not feel beholden to me. We both want the same thing.

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joystir59 · 04/03/2021 14:42

I sense a positivity and almost relief in mil, due to me being very clear and honest whilst still making sure she is ok and has what she needs day to day.

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Frazzled2207 · 04/03/2021 14:47

Is very good news that mil is becoming cooperative

joystir59 · 04/03/2021 14:50

Anyone who suggests on here that I'm treating mil badly can fuck off. I care about her. I've cared about her all through DW's illness, turning myself inside out to protect her from awful truths when her daughter was in hospital having received (alone because of C19) a terminal diagnosis and DW and I didn't want to share the worst of all news with mil when I couldn't take her to see her daughter. You have no idea what we've been through. Yes, she has lost her dearest daughter but her first question to me within days was "what will happen to me?" And all she says since is "it's awful getting old". Well it isn't awful, it's a privelidge denied many.

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joystir59 · 04/03/2021 14:53

It feels extremely good that mil is in the social care system. Weight lifted somewhat already. Thank you for all the encouraging and kind posts, and for sharing your own experiences. It is very tough looking after people. I want and desperately need the space and freedom to focus on losing the love of my life, on feeling that and responding to that. And I feel her with me as I'm working my way through the dreadful roller coaster of emotions this process brings up.

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LadyEloise · 04/03/2021 15:03

joystir59
I wish you the space and time to grieve.
I am sure your dw died knowing you would do right for her difficult mother.
What a shame her dsis didn't help you.

joystir59 · 04/03/2021 15:32

@LadyEloise
Thank you! I think dsil is missing out- I think it's a shame she feels the need to distance herself from mil- her mum. It would be great if we could work together. It would have been very very good if said could have helped DW and I by giving mil respite sometimes,but she couldn't do it. She is not a bad person.

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joystir59 · 04/03/2021 15:32

*SIL not said

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ktp100 · 04/03/2021 15:32

How anyone can suggest you're behaving unfairly is literally beyond me!

This is not your Mother and she has a daughter who seems way less interested in her welfare than you do!

You never chose to be her carer, your wife did. I'm so sorry your DW isn't there for you both now, but that doesn't mean you have to step into her shoes. You do not owe anyone your life, nor is a life of caring for everyone.

Time for SIL to step up.

Clymene · 04/03/2021 15:34

It nearly killed my parents trying to care for my gran in her home because my dad was too soft to say it was too much for them. And of course, despite the fact it was my dad's mum, my mum took on the lion's share of the responsibility.

@LondonJax's experience really resonates

joystir59 · 04/03/2021 15:37

DW found her mum an enormous burden, but felt totally responsible for her. If DW had lived we would have had to face up to the fact that mil has increasing support needs that would be better served by a team in a residential setting.

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lydia2021 · 04/03/2021 15:45

I know it sounds harsh, but this is not your responsibility. You have to ask for a needs assessment for yourself and mil. So you need a social worker to come and see you both. This happened to my relative and the only way to have the elderly person live in sheltered housing or a care home was for the relative to evict the elderly person. This was overseen by the social worker. It took 6 weeks to get the allocated sheltered housing for the person. And a solicitor was appointed to handle the finances initially. Ask social services what other options you have and you are not prepared to be a carer for her. Stay strong.. good luck... and dont feel guilty..

joystir59 · 04/03/2021 15:54

I'm prepared to ring SS every day until they act to move mil out. It is now on record that she cannot stay here with me and that she needs residential care. She will be allocated a social worker now. I refused the offer of a carer's assessment because I don't want to be validated as her carer, I want her moved.

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ukgift2016 · 04/03/2021 16:05

Brilliant OP.

Glad you and MIL are getting the support you need. When she is allocated a social worker, they can start the ball rolling with the move etc.

AmberItsACertainty · 04/03/2021 16:16

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forrestgreen · 04/03/2021 16:36

Give them the time to act then give them the day she'll have leave.

AmberItsACertainty · 04/03/2021 16:40

@Notverygrownup

OP certainly no judgement from me here.

Just a thought. If your MIL ever needs to go into hospital, there will be a discharge team who have to assess whether it is safe for her to come home. If you inform them that it is not safe for her to do so, as you are not there all of the time, she would have a fresh assessment of her needs whilst in hospital and you may well find that she would then get a place in a home quicker - I certainly found it much easier to get things moving from the hospital when looking after my relatives. However, I had not realised that I needed to contact the hospital social work team and take the initiative to contact the discharge team to ensure that they knew the situation at home. (One wheelchair user had cheerfully told them that she could bath and shower herself and make her own way to the toilet. By chance I was passing and able to point to the wheelchair, and ask how she was meant to climb the stairs in it! They had taken her word that "she was fine"!)

Better still, in this situation OP you tell them she's homeless, she's not got permission to return to your home other than to collect her belongings and that you're not her carer at all. Because if she tells them you are her carer and she has a home, they'll believe her.
cptartapp · 04/03/2021 16:48

joystir
Remember MIL is responsible for her own well being, not you.
Her wants and needs do not trump yours. You have a lot of living left to do.

Roystonv · 04/03/2021 16:51

Londonjax
Thank you for posting this, two very good points made - the fact that caring can often deaden love and that care homes can be cheery and reaffirming places to be

joystir59 · 04/03/2021 16:56

Mil is as strong as an ox apart from very arthritic knees, so not much chance of hospitalisation. She has been vaccinated against Covid.

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