I’m not from the UK but thought I’d add my experience.
My parents live next door to me and Mum was diagnosed with Alzheimers in 2013. Symptoms 2 yrs prior.
Things came to a head in 2016.
Dad wasnt coping, I wasn’t coping with both of them.
Mum had a carer coming in 3 x a week for showering and dressing, and she attended a day care 3 days a week.
Mum was constantly agitated and anxious, didnt recognise her home, couldnt always find the bathroom, didnt recognise Dad half the time, and she was starting to wander.
It was truly awful, yet my sister said “ Theres no way our Mum was going into care” and we would just have ti increase the care package.
I also worked 3 days. Mums issue was having someone there 24/7 to supervise her, as Dad was not enough. He had cognitive impairment himself.
Following, me with shingles and my husband needing major surgery my sister agreed to 2 weeks respite for Mum.
We saw a couple of care homes ( that was an experience!) decided on one and booked Mum in.
Long story short that was July 16 and there Mum stayed.
The care home has been fantastic for Mum. The stress and anxiety of living at home was taken away.
People to talk to, activities if she wanted, weekly mini van outings,
regular meals & drinks, nursing care on hand.
As Mums Alzheimers has progressed it hasnt always been a picnic, but having 24/7 care has been a blessing for Mum and for us.

Oh and you know what finally made my sister and her husband realise just how bad Mum had become ( as short visits here & there dont always show it)
they took Mum & Dad for 3 days to their holiday house to give me a break.
Mum constantly confused their house with their house back home. Was up half the night going in and out the bedrooms and waking them. Was hallucinating & delusional. When they returned after a 2 hr journey ( another saga) Mum had no idea she was at her own house and then asked my sister and BIL when they would be leaving to go to their holiday house.
Having no recollection of the car journey let alone just being there 3 days, they were staggered.

 

I found myself in a similar situation when my mother died in 2015 as she had been my father's prime carer. An army of ever changing carers filing into Dad's house each day was only going to unsettle him further (he was diagnosed in 2008 with vascular dementia) and as I worked and could not accommodate Dad living with me I had to move him into a residential home. Three years down the line I have no regrets; his dementia has continued to take hold but he has previously developed relationships in the home and familiarity which are sustaining him now where he is at the point of almost not being able to communicate at all. The previous knowledge of his likes, what makes him happy is passed to new staff in the home, the other residents without dementia talk to him and look out for him and he is and has been constantly stimulated by the activities and coming and going on a day to day basis. When living in his own home he would sit and look at a blank television screen for hours unless stimulated externally.

 

I too have been worrying over this question. My mum is in rented sheltered housing and recently ive increased care visits to 5 x week. They are brilliant carers and are great with mum gradually assisting with some personal care so can eventually assist with showering. Mum does sit most of the day with radio on and dozing or looking out window at comings and goings as situated near main entrance. Often she says she's fed up and far from home but when I have tried to engage her in something e.g. dementia cafe she seemed quite fearful and didnt want to join in. Mind you although can be chatty she has never been one for joining in at all. She can still make herself a cup of tea and toast. I see her 3 to 4 times a week as well. I did mention care homes as my MIL is now in one but she just shrugs her shoulders. So beyond making her own choice. But part of me feels if shes well cared for ,while she has some savings to pay for it maybe best to leave her in flat. Sometimes she doesn't recognise it as her home. Think I'm waiting for something to happen to show me now's the time to move her to a home. It is hard to know for sure.

 

First up I think you can effectively ignore those family members who have strong opinions but don't and won't actually step up to help with the care. Secondly, remember that you are not alone with this dilemma, people are struggling with it up and down the country every day. My own mother is currently in a care home recuperating from a bad fall and I am agonising about whether now is the time for this decision to be made. One thing to bear in mind is that social withdrawal is very common in people with dementia, probably due to a simple inability to cope with following conversations etc. My mum appeared to be 'lonely' when she was living at home and often complained about it. But most of her friends and relatives are dead and she was losing confidence in dealing with other people that she didn't know well. I am hoping that she will settle in the care home and get to know the staff and other residents and this might be a better outcome in the long run than just relying on me day in and day out.

 

Without wishing to appear over cynical, are objections to the care home anything to do with the inheritance melting away in care home fees? Assuming she'd be self funded of course, because from experience this is fairly often the case.

We've had only positive experiences of several care homes (more than one relative with dementia) and I certainly think that by a certain stage of dementia, when 24/7 care and supervision is needed, or the person is often anxious or frightened when left alone even for short periods (or both), a good care home is the best option.
Live-in care is the other option, but 24/7 care will nearly always mean at least 2 on shifts, it can work out rather more expensive than a nice care home, and given that new faces will be inevitable now and then (time off and holidays) it's probably more suited to people without dementia.

 

Hi @Scotty235 I gave up work last year to look after dad every day because he could not manage alone. He was also diagnosed with cancer and no treatment was offered only palliative treatment, so I decided that I would look after dad and make things as nice for him as possible for whatever time he had left.

It all went well until January this year when dad had a 3 week stay in hospital with pneumonia. When he came home it was evident that his dementia was so much worse and he now can't be left alone so it is 24/7 now.

Having carers in for dad would not really help because one of us is always there (usually me) and as dad is compliant and very happy it is really quite easy for me to get him up and dressed and so on. Washing is a bit of a problem and I am surprised at how long one can get by with having an occasional quick shloosh and still not smell but I suppose his low level of activity helps there.

Looking back it would have been so much easier and better for everyone (well, better for me) if I had got dad straight into a care home straight from the hospital. He would have been settled now and probably happy but instead he is settled back into his own home and happy there. I was under pressure from family to have him back to his own home and lots of promises were made but of course it is mostly me again dealing with all of this.

So now here I am basically waiting for the next illness or crisis that will set dad back again and then it will be a care home.

Dad can well afford to pay for his own care and I personally think that it would be money well spent. Not everyone agrees with this though.

 

It’s such a big decision isn’t it, darned if you do or don’t. My mum with mild dementia had 3 falls at home resulting in fractures each time, 1 was her hip which she miraculously recovered from. She had 6 weeks of social care funding after each event & then she paid for her own carers coming in 3 x a day plus my visits & I used to cook & freeze her meals etc. She was extremely frail and her mobility very limited. It just wasn’t enough in the end & she certainly was isolated. She set fire to her herself while using the cooker & I discovered her 1 day with a badly bruised face - she said she couldn’t remember how it had happened. I was lucky in that she agreed that things changing & she no longer felt able to cope at home. She lived more than 20 miles away from me - a sibling who didn’t visit or help so I found a wonderful care home near me. There was something going on every single day there & the residents could join in as they wished or take a back seat. That home was the best move & not long before my mum died, she said to me that all the staff really did care & that she was pleased she was there. The brother didn’t want her to go into a home but he wasn’t doing a ‘tap’ towards helping or caring for his mum, but thank god I had POA & he didn’t. I don’t regret my decision at all because I did my best at the time. Good luck along this difficult path.

 

I think it would easier it there was a sure financial safety net. A friend who thought they had a a good nest egg is finding the cost of the care home a real burden plus the 'extras' over which she has little or any control.

 

But it won he a problem as the writer has POA AliceA

 

Hello, this is my first post on here to. Just wanted to agree with you on the strapped for cash scenario. I care for my mum and work full-time. The situation is getting harder plus where mum lives is a black spot for carers to go in twice a day. Currently her POC is still out to brokerage and its getting quite frustrating finding takers. I also have the difficulty of deciding when it may be time to think about a care home. Mum like many others on here is very independent, but as the disease takes over its obvious that she is not coping as she did a year ago. Unfortunately she refused to allow us to have LPA for health and wellbeing after dad died, which at the same time was our only chance as she still had capacity, and we can't afford taking it to the court of protection now. I have resolved like others on here that it will take a crisis for the situation to change.

 

Hi there

When my MIL lived on her own she was socially isolated and very rarely went out except to get her shopping. Over time she became confused and we started to notice that she wasn't really coping at home. Mentally we really noticed a change in her last August and in September she had her first assessment with the Memory Clinic. She was diagnosed with Vascular Dementia and Alzheimer's in December. We live abroad but are POA for her health and finances and have been since 2015. It was a crisis that really brought her to the attention of the professionals. Before that she was living under the radar never visiting the GP and basically needing some support but being fiercely independent refused to discuss any kind of home help.

She was uncontactable for a few days back in February and my husband rang and rang but she didn't reply. We ended up getting a neighbour to call the Police and break into her home. She was taken by ambulance to hospital with various problems and stayed there for a month before the hospital social worker said she needed 24 hour care and would go to a care home for a six week placement. She is now there permanently. We had to find her a care home very quickly from abroad. I found a couple of places and rang them up. I picked one really on the basis of reviews online from families and how the managers sounded on the 'phone! It is a home specialising in dementia care. I have to say it was the best decision we made. She is so happy there. There are activities and lots of people around she can talk to if she wants to. They have three meals a day. She was eating next to nothing living alone and even though now she still eats very little, there are people there to encourage her to eat. The staff are kind and caring and they update us regularly on how she is doing. We visited the home in April and went in everyday and were impressed. I think the home environment was wrong for her as she became unable to cope with the house and garden and her self-care went downhill. She needed people to look after her. She also complained of being lonely. That's no longer the case and her old neighbours go in and see her too which is nice. So all in all if your Mum needs the help and support then it's the right decision and there are some good homes out there. Good luck with your decision.

 

I'm in a similar situation with family and the dilemma of what the best course of action is. My brother won't help and my sister struggles emotionally, which leaves me. Very difficult for anyone who has comapassion for their loved ones. I think many of us face a similar outcome in the end -sadly

 

Hi,
Do you have a dementia society in your area that provide 'sitters' who go in for 2 hours a day to provide not only company for your Mum but to do different things with her like reading, music etc anything that your Mum likes doing? I believe they can also take clients out if they are fully mobile.

 

After we finally put my FiL into a care home (he'd lived with us for about a year) I got no end of flak (mostly behind my back) from his younger sister (no dementia) for being cruel, too selfish to look after him, etc. She just didn't want to know that I'd been near breaking point.

She had insisted on him being placed in a care home near her - she lived in a S coast seaside town where CHs were plentiful, and the best we found happened to be very close to her flat.

So she started bringing him over every day for tea - for a very short while! After she stopped, he took to going by himself, and the next thing you know, she's on the phone to me wailing that she can't cope, he's driving her mad, she can't watch Countdown!
She did have the grace - eventually - to apologise, albeit grudgingly, for what she'd said to/about me, re selfishness.

Like so many people, she'd had absolutely no idea of what dementia can mean in practice.

 

I would say if you ask this question then you are close to thinking that a care home is best for your mum’s care.
I thought about this long & hard as I lived away from my mum & although I visited a few times a week. It became apparent that her care package needed to be increased every so often & that she wasn’t coping especially at night. We had a series of falls as well & earlier she remembered to press the alarm call button on her wrist, her later falls meant she didn’t remember her wrist button & banged for help on the window.

It wasn’t safe for her to cook either. As is often the case, it took a crisis for her to be admitted to a care home. She was ok with her care package & 4 calls a day but she was lonely but wouldn’t go to a day care centre or anything else. It was actually very hard to get my mum out of the house.

My mum ended up in hospital with a chest infection just before Christmas 2017, wasn’t discharged safely in my view & within 5 minutes of being home suffered a massive seizure & went straight back into hospital - she had more seizures which really affected lots of her faculties & at the end of March 2018, we had a best interests meeting where it was decided she would need a care home setting for her needs & a nursing care home.

I do believe being in the care home prolonged my mum’s life. She did make some friends & she did join in the activities which seemed a miracle. I think if my mum has gone back home then she would not have coped & would have passed away in a matter of months. As it was, she was a year in her care home & then went into hospital with her 3rd concurrent infection which snowballed & resulting in her passing away in March 2019. I’m not sure she was ever happy in her later life but at least in the care home, she was warm, looked after, had food & drink. I couldn’t have looked after my mum any better for sure with work commitments & living arrangements plus carers.

 

I have found all of these posts really helpful. I have an elderly frail aunt who lives on her own. Her neighbour pops in to check on her and my dad who is 90 yrs old visits regularly - he is her main career. But he is also the main Carer to my mother who has vascular dementia ( middle stages) . I live 300 miles away and support on the phone and do a weekly on line shop for her.

Like everyone else - my frustration is that my aunt refuses all offers of help and she has refused to leave her home .

My question is - how do I start to look for a home and how do I find out if my relative can afford to pay for it? I know that she had a social worker but she refuses to meet with them or agree to any offers of help.

The situation cannot go on with my dad caring for his sister as my mothers health declines and he ages .

I feel completely useless and unable to help. Like many others have said - I used to try to interfere or step in or make arrangements but it always ended in arguments or upset and I have backed off .

My instincts are that she would be cared for in a home but morally can you really make someone move?

I would really appreciate your replies ?

Thankyou

 

Sorry to hear about your Aunt. Unless you have Power of Attorney you cannot really get involved in her finances / her care if she objects, until a crisis develops e.g. your aunt has a fall or other serious incident. You can alert SS but you say she does not want to interact with them and they won't force her to unless a crisis occurs where it becomes evident she cannot cope and does not have the capacity to make decisions.

 

I wonder if perhaps you could arrange for social services to conduct a care needs assessment for your Mum and a carer assessment for your Dad, if they are not already receiving help from social services. Your Dad can't carry on for long as sole carer for two people at the age of 90 without needing help. If social services get involved with your parents then it would put your Aunt back on their 'radar' if your Dad explains how he is caring for her too. As above, if she has mental capacity then social services are unlikely to do anything much if she refuses help, but it might trigger at least some sort of check on her to see whether she is at risk from harm, which she may well be if your Dad gets to the point where he can't carry on. As difficult as it is, perhaps it's best to concentrate on getting your parents as much help and support as possible so that some of the burden is lifted from your Dad.

 

Sometimes the decision is made for you. I have been caring for my mother at home, but with repeated falls, the issue of her safety is arising now, and I feel it can't be long till she has to go. I suppose the matter of safety is paramount. Is the person safe in their house all the time?