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New here - need to decide - care home or home care

YammaY

Registered User
Apr 23, 2022
12
0
Hi all, I'm a long term lingerer but first time poster here. I'd love to know other people's view of my situation.

Mum has been confused for a few years now but got a diagnosis of vascular dementia yesterday after a CT scan. She's been in hospital for a week after her confusion seriously stepped up and I rang 111 who said to take her to A&E (she'd also not take any medication for a week as we were using one of those automated alarmed pill boxes and unbeknownst to me she'd forgotten what it was for and took the batteries out of the 'annoying beepy thing'). They tried to get me to take her home but I had to dig my heels in for safe discharge/needs assessment/care plan and they've been great from then on. Shes now having visual hallucinations, thinks people have been in the house, doesnt think it's her house, wants to go back to the house she grew up in, is putting stuff in really odd places (bin in the freezer, freezer food in the cupboard, house phones hidden all over the place) hoarding things, thinks her remote controls are phones, not washing or brushing her teeth, wearing the same dirty clothes every day, believes that people from her youth have been coming in and moving things etc. Fortunately she can't drive and doesn't really wander (yet), but she leaves the front door wide open, isn't eating or drinking properly (has got into a habit of eating raw defrosted freezer food and is adamant that it doesn't need cooking). Due to distance I can only pop in once a week or once a fortnight, which I was previously doing to stock the pill dispenser and safety checks. Before the hospital visit she flat out refused any home help eg carers or meals on wheels and felt that her memory problems were just due to the trauma of dad dying 1.5 years ago (he was also concerned about her memory before he died).
Its taken me bloody ages to convince her to do financial power of attorney but we finally got it done in Nov, due to Covid delays it took ages to come back but I'd just registered it with the bank before her confusion stepped up.
Shes very anti-doctors (has been all of her life) so I'm amazed I even got her into hospital. She has literally refused to get into an ambulance before when thr GP has called one with concerns about her confusion.
The hospital social worker is due to do a mental capacity assessment but has mentioned to me that when she spoke to the ward staff they had said that they couldn't imagine mum living at home in her current state, even with carers. Respite care in a care home has been mentioned.
Due to tricky dynamics between me and my mum (who before her illness could be quite narcissistic and nasty to me) I made the decision a while ago that moving in with us isn't an option. Might sound callous, but I had to work very hard on my boundaries and attend quite a lot of therapy as an adult to retain a relationship with her. We also have a very small house thats in the midst of a renovation, with no scope to extend as its a small terrace, so its just not feasible. My brother has offered to move in with her but for various reasons, including her very clear refusal every time its mentioned, I'm not sure this will work. He also has his own personal family, financial and mental health circumstances that raise some reg flags there. She also didn't recognise him when I showed her a picture of him yesterday - probably because I've been more active in visiting and care. She seems to recognise my fiancé more (he comes with me on medication visits) and my brother has stated that he's not willing to be her main carer and will need to leave the house and go away at points for various things if he moves in.
When I went to visit her on the ward yesterday, although confused, she was actually happier than shes been in a while. She is loving talking to the nurses and other patients. She loves food regularly being delivered to her and she likes the company - even when confused she'll happily talk and joke with anyone. She had moments of realising that things aren't right with her brain and we spoke about how it might be nice for her to live around other people - at points she seemed quite keen on the idea but at other points she wanted to go home (although she's forgotten where home is and is often referring to her childhood home). She herself said, 'I don't know if I'd even recognise the house' and at one point when I explained that the doctors aren't sure that its safe for her to go home alone she said 'fair enough - where will I go now then?' Shes aware that she doesnt have many friends and asked how she can meet more people and make new friends.
From what I saw on the ward, I genuinely think she actually might be happier in a home as shes lonely. She wont accept help to get her out and socialise when she's at home but once she's in a place with other people already there she seems to thrive. Her personality seems to be, fortunately, becoming less confrontational and friendlier as a result of the dementia. Shes also kinder to me when staff are present and I actually really enjoyed my visit for once yesterday. She has sad moments when she realises dad is dead but in general, as long as there's someone there to talk to, she's fairly happy on the ward.
The issue is cost. We've spent our limited life savings on our house and both now run our own businesses - money is tight to say the least. Mum has savings and owns her house, but with the cost of care homes she'd be sorted for 5 years max. Shes fairly young (77) and apart from high blood pressure is in very good physical health, so she may well be around for much longer than 5 years with increasingly complex needs.
To add further complication, she had me in her 40s and we're potentially looking at starting a family ourselves, so money will be even tighter if we do. We just can't afford top up fees unless there's a financial miracle in 5 years time.
Do I try visiting carers at home, with the knowledge that her needs will increase and it will eventually fail, and wait for things to get worse before moving her to a home (but have more money left for a home when her needs increase) or do I move her into one now, at a time where she's potentially open to the idea and can enjoy the social aspect (and probably have a much better quality of life for the next 5 years) in the knowledge that money will run out and we'll be at the mercy of wherever the council want to place her afterwards?
I'm aware that having a social care needs assessment, with a hospital social worker who actually seems proactive and seems to care, is a real gift, so I dont want to waste this opportunity and get it wrong!
 

Bod

Registered User
Aug 30, 2013
1,576
0
Try to get the Hospital to discharge her direct to a Care Home, one that accepts Local Authority funding.
That will remove the blame from you, for her being in "care", it's the "Doctors" that said she should be there.

Bod
 

Starting on a journey

Registered User
Jul 9, 2019
918
0
I think care home is the only option. The brother scenario won’t work in my opinion. Don’t take her to your home either as that won’t work. I don’t think live in carers would work either, she needs a team to help her. I would put her in a care home ( doctors orders til she gets better) don’t try to anticipate the finances, 5 years is a long time, the whole funding regimen is changing in October 2023 so that may have an effect.
Look after yourself, your mums illness seems too much for one person to deal with
 

Rosettastone57

Registered User
Oct 27, 2016
1,744
0
Your mum needs a care home . My mother in law was like this when she went into care . She had carers in but she couldn't recognise her own bathroom in her own home, she was hallucinating, a high falls risk and was unsafe at night. She refused point blank to go into care and wouldn't leave her own home not even to visit her family. We waited for a crisis and she eventually went into hospital and we organised a care home for her. She was self funding and we had no involvement with social services whatsoever, we just arranged a care home ourselves .
 

canary

Registered User
Feb 25, 2014
18,843
0
South coast
Hello @YammaY and welcome to Talking Point.

Your mum sounds like she is at a similar stage to my mum when she ended up in hospital (in mums case after a TIA) and went from there straight to her care home (I called it a convalescent home). The only big difference is that mum was already wandering out at night dressed only in nightwear trying to find "home" and I think, in all honesty, that if your mum wants to go home, but doesnt know where home is then it wont be long before the same thing happens to her. In fact, I do wonder about that open door........

My mum would not even let carers over her doorstep and refused meals on wheels or even ready meals that only needed heating up. She really needed someone with her 24/7, but neither my brother nor I were in a position to do this. I think your mum also needs 24/7 care now - there are so many red flags already in what you say- and it doesnt sound to me like either you or your brother are in a position to do this. Also once someone has a relative staying with them, or are living with a relative, it is unbelievably hard to get them into a care home. It is so much easier to go from hospital. I would honestly resist any suggestion of family living with her.

With regards to the cost - care home fees come out of your mums assets. You will not be expected to contribute to them. If your mum has enough for 5 years this should not be an issue. If she does run out of cash then the Local Authority will pay her fees. Do not pay for top-ups once the LA starts paying - the LA is duty bound to find at least one care home that will meat her needs and will accept the LA rate. When you look at care homes, they are not all the same in the care they provide and the more expensive care homes are not necessarily the best. Often they spend money on things that look good in a brochure, but the person with dementia is unlikely to even notice. The care home mum was in was not at all fancy - it was rather shabby and old-fashioned - but the care was wonderful and mum was happy there. They would also accept the LA rate if someone had been self-funding for two years. You may find a care home that will do the same.
 

karenbow

Registered User
May 24, 2021
89
0
hi yamma ,all good advice given-i think my mum was probably more advanced but when dad died it was always my intention to have mum live with us- i have a supportive family ,enough room and really thought i could do it - how wrong i was and how i much admire my dad for how he coped when i wasn,t there - i looked after mum and dad everyday -doing everything for them and thought just looking after mum would be easier - dad died mum came straight to live with us 4 days later in hosp - vastly deteriorated , it broke my heart but i knew i could not cope even after doing it for just 4 days , the home care i was offered was no where near enough- like yourself i was told in hosp that mum could not be cared for at home- i was offered a visit twice a day am and pm, but when things happen you need more- all family working , trying to even change my mums nightwear was so difficult mum couldn,t move etc- after a stay in a rehabilitation ward i was told mum could come home by the social worker and it would be in 3 days time! i had to decide quickly , couldn,t view any care homes due to covid but i could see the future and how this would go- i was so lucky to find a care home 1 mile form me and as canary said with her mums it wasnt the glossy care home but the staff were very kind by this time mum really didn,t have any sense of anything - the most important thing was that we were close to each other- sorry for my tale but it is so similar to yours in many ways and the symptoms youve described mirror my mums almost exactly - if you can see that how your mum is now is going to easily triple in care needed possibly quite soon because nobody knows how this goes ,then you should in your heart know what to do - as said 5yrs of cost is more than you will need but i understand your concerns i was the same its difficultx
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
Absolutely clear here that a care home is the only solution. And that she may well enjoy living in one. Realistically not many people live in care homes for more than five years so that is a financial bridge to be crossed when you come to it, if you do.
 

YammaY

Registered User
Apr 23, 2022
12
0
Thanks all. I think deep down you're saying what I know is true. The things that hold me back are that shes not a wanderer, lives in a safe area with nice neighbours and shes mobile/doesn't have any falls... but I guess thats only a matter of time (and actually she has had a few falls, including down the stairs, but miraculously didn't seriously hurt herself...yet). I guess the neighbours might not be so nice when she deteriorates and starts doing weird things that affect them. Your answers are really appreciated - thanks xxx
 

thistlejak

Registered User
Jun 6, 2020
273
0
MIL lived in a safe area and the neighbours were great with her but she was not taking medication, eating or drinking properly, not washing herself or her hair, not putting on clean clothes and the bed sheets had been on the bed almost a year before she went into a care home. She was also very unhappy anxious and paranoid at home.
She is now well fed , clean , medicated correctly and content in her surroundings.
Being in a care home takes the 'stress of everyday life' away from your mum.
I would at least accept the discharge to assess bed - your mum sounds as though she would enjoy the company of a care home.
 

YammaY

Registered User
Apr 23, 2022
12
0
MIL lived in a safe area and the neighbours were great with her but she was not taking medication, eating or drinking properly, not washing herself or her hair, not putting on clean clothes and the bed sheets had been on the bed almost a year before she went into a care home. She was also very unhappy anxious and paranoid at home.
She is now well fed , clean , medicated correctly and content in her surroundings.
Being in a care home takes the 'stress of everyday life' away from your mum.
I would at least accept the discharge to assess bed - your mum sounds as though she would enjoy the company of a care home.
You could literally be describing my mum here. When I took her to hospital I had to stay over and I slept on the sofa under a blanket I found in a forgotten cupboard because the bedding in both her bedroom and the guest bedroom was so grim.
 

Violet Jane

Registered User
Aug 23, 2021
888
0
If your mother needs daily help but won’t accept visiting carers then I think that a care home is the only option. From what you have told us, your mother is not living with dignity (not washing herself, her clothes or her bedding) or safely (not eating properly and putting herself at risk by leaving the front door open). She will soon start to do other dangerous things eg wander, leave the cooker on.

If you really feel that your mother still derives benefits from living at home then you could investigate live-in care but there must be a big question mark over whether she would accept someone moving into her home given your experience of her attitude towards visiting carers.

As has been said above, it is easier to move a PWD straight to a care home from hospital than from his/her own home to a care home.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,399
0
High Peak
Definitely go for a care home The problem with caers coming in to help her at home is 1) that she may change her mind about agreeing to it and turn them away, and 2) there will be a lot of time between visits when she will be on her own and it sounds like she's far too confused to be left alone. (And don't underestimate the cost of having carers as she will have to pay for them! Not much less than a care home...)

Forget the brother option - he isn't committed and has no idea what he'd be letting himself in for.
 

canary

Registered User
Feb 25, 2014
18,843
0
South coast
I think one of the main reasons why people hesitate on a care home is because it seems such a huge step. I remember the first time someone suggested to me that I should be looking at care homes (a good couple of months before Mum ended up in hospital) and it caused a visceral sensation of horror - "No no, not mum! Not already?" I think that often we are not ready, even though the person with dementia is. Once mum had moved there and settled I could see that she was indeed ready and more than that, she was happy and thriving
 

YammaY

Registered User
Apr 23, 2022
12
0
I think one of the main reasons why people hesitate on a care home is because it seems such a huge step. I remember the first time someone suggested to me that I should be looking at care homes (a good couple of months before Mum ended up in hospital) and it caused a visceral sensation of horror - "No no, not mum! Not already?" I think that often we are not ready, even though the person with dementia is. Once mum had moved there and settled I could see that she was indeed ready and more than that, she was happy and thriving
Canary - you've hit the nail on the head. Its been such a shock.

I've spent the last few years since dad died sorting out ways to get her safe with her medication and food, sorting out financial power of attorney (she wouldn't sign the health/welfare one), trying in vain to get her to accept the idea of carers or meals on wheels or a cleaner... (but unable to just book them in as I'm already owed over 1k of my own money for food shops etc as she became unable to sign cheques and they bounced so I just decided to pay and wait for the power of attorney to be registered with OPG and the bank) that in my head it was a case of 'yes things are deteriorating but visiting care will fix it and I've now got POA and a needs assessment, I'm nearly there, I can book them in with her money and see how it goes...' that when the social worker mentioned a care home as an option I was totally blown away.

Glad in hindsight though as another (weekend/out of hours) social worker rang me today who wasn't anywhere near as good or as straight talking and I just requested that the normal one who's back tomorrow do the mental capacity assessment and get back to me.

Emotionally - I wasn't ready. I knew it would take a crisis for care home consideration but because she hadn't fallen or injured herself or left the gas on yet I didn't see this as the 'crisis.'

Theres this societal expectation as well that you just give up everything and do your absolute best to keep them at home, like this is the holy grail or magic cure when in reality sometimes maybe its just cruel to everyone involved. She was so good at masking it as well that I'm in shock that it's being recognised which is a huge relief but also weirdly difficult to deal with after feeling very on my own with it. I worry that the neighbours will think I'm cruel if I rehome her because they haven't seen the reality, but I've no idea why I even care. Ill also have to rehome her dog (tried having it here but it hates my dog and vice versa) so thats emotional as it was the thing keeping her going and I now have to admit that she cant look after it anymore. Thats likely to have to happen regardless of the outcome.

We'll see what tomorrow/this week brings. Hopefully she won't have a good day/hour and pull the wool over their eyes/pass the capacity assessment!
 

canary

Registered User
Feb 25, 2014
18,843
0
South coast
Theres this societal expectation as well that you just give up everything and do your absolute best to keep them at home, like this is the holy grail or magic cure when in reality sometimes maybe its just cruel to everyone involved.
oh yes, I know this well. It ranges from the NHS mantra that people are better off in their own homes, to the general population (who have no idea what dementia actually entails) viewing a care home as failure. It is lies all lies - dementia completely turns things on their head. Once someone cannot recognise their own home, what advantage is there in living there? Where is the dignity in living in squalor, not washing or changing their clothes and eating food that can make them ill? If day to day living and trying to run a home causes such huge anxiety and failure on their part surely it is better to be somewhere where there are no expectations and the PWD feels that there are no expectations too?

Mum moved into a care home because there wasnt any other option, but eventually I came to see it as a success and the best decision that I made for mum.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,399
0
High Peak
oh yes, I know this well. It ranges from the NHS mantra that people are better off in their own homes, to the general population (who have no idea what dementia actually entails) viewing a care home as failure. It is lies all lies - dementia completely turns things on their head. Once someone cannot recognise their own home, what advantage is there in living there? Where is the dignity in living in squalor, not washing or changing their clothes and eating food that can make them ill? If day to day living and trying to run a home causes such huge anxiety and failure on their part surely it is better to be somewhere where there are no expectations and the PWD feels that there are no expectations too?

Mum moved into a care home because there wasnt any other option, but eventually I came to see it as a success and the best decision that I made for mum.
100% true.
 

YammaY

Registered User
Apr 23, 2022
12
0
I just wanted to say thanks again. Posting on this forum has been so validating and comforting - like a big hug! Although I dont know any of you, it feels like I do through our shared experience. I cant tell you what a relief it is to have people not infer that I'm overreacting and acknowledge that its complex and tough. Just even writing down the reality of her needs has shown me that I've been minimising it and reading your experiences has shown me that I'm not alone and I'm not imagining it. I even felt guilty ringing 111 and taking her to hospital when her confusion advanced but now I know that its the best thing I could have done, as we have a diagnosis and reality is setting in/professionals are seeing what she's really like.
Thanks again for your kindness and for providing some home truths in a really clear and compassionate way. Its exactly what I needed. xxx
 

Mary U

New member
Apr 10, 2020
6
0
I just wanted to say thanks again. Posting on this forum has been so validating and comforting - like a big hug! Although I dont know any of you, it feels like I do through our shared experience. I cant tell you what a relief it is to have people not infer that I'm overreacting and acknowledge that its complex and tough. Just even writing down the reality of her needs has shown me that I've been minimising it and reading your experiences has shown me that I'm not alone and I'm not imagining it. I even felt guilty ringing 111 and taking her to hospital when her confusion advanced but now I know that its the best thing I could have done, as we have a diagnosis and reality is setting in/professionals are seeing what she's really like.
Thanks again for your kindness and for providing some home truths in a really clear and compassionate way. Its exactly what I needed. xxx
So good to know that the forum has been helpful. I agree with all the others. Though I often say that the default setting for someone with a loved one with dementia is guilt (should have done more/different/sooner etc) there comes a point where you have to let professionals take over, in order that you can be a daughter/ son or whatever, rather than being swallowed up in the role of carer. So true that often we don't see how bad things have become, or how deeply we are feeling it, until we write or say it all, together in one place. Good luck with the next step!
 

YammaY

Registered User
Apr 23, 2022
12
0
Finally had a call back from the social worker in the hospital discharge team and they've decided to try her going back home with visiting carers as thats mums preference. Not quite sure why they mentioned respite care to me if that's the case but never mind.
Its been confirmed through the capacity assessment that she doesnt have the capacity to look after herself independently but they want to give care at her home a go as (unsurprisingly) she was adamant that she wanted to return there. I dont anticipate it being successful for very long but Im too tired to fight the case for a care home right now, especially as I only have financial/property POA.
I'm going to take the opportunity to research and visit care homes for when the time inevitably comes. Im also going to take advantage of the fact that I'm now cleared to spend her money in her best interests and invest in some assistive technology, like another Alexa Show as that's worked well and means I can use the 'drop in' function. If anyone has any suggestions for good gadgets to use in this 'in-between' stage before she goes to a home then do let me know!
 

Fotoman

Registered User
Apr 26, 2022
13
0
I'm in this same situation but I have Power of Attorney for Health & Welfare and I am fighting it all the way for SS to consider a care home. Just a word of warning, once they get her home, there she will stay and it will take months to get her reassessed for a care home. They are taking the easy and cheapest way out. They call it Discharge to Assess; everyone who has been in this situation calls it Discharge to FORGET! Yes, she'll get carers coming in but in between she'll be left own her own for you provide care even though you are not obliged to do so.
Just try to keep on top of it.