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Is it time for a care home ?

Ruth32

New member
Oct 29, 2021
6
0
Mum got diagnosed with Alzheimer's in August and has declined rapidly, that quickly that we now a full time live in carer which she isn't happy about.

She lives in a retirement complex and the staff and the live in carer are starting to struggle with certain situations. The main thing is now the lack of sleeping. She is up all night, most nights and is totally confused regarding night and day. She sometimes phones me around 5 times through the night and the record the other night was phoning my brother 20 times between 2am and 4am. The complex has put a sensor on her door, so they get notified when she tries to leave, this also bleeps very loudly and notifies the live in carer. She is trying to get out more and more in the middle of the night and the carer is getting very little sleep. I have had 10 messages from the carer since 5am this morning saying she tried to get out 3 times last night.

We are trying our hardest to keep mum at home as she can still do so much herself, we have set up a taxi account so she can still go and visit friends and get herself about without having to worry about cash etc. She still socialises at events held at the complex but they are finding mum difficult with other residents and are getting complaints - mum has lost some of her filters and can upset people with what she says.

I get zillions of phone calls from her asking me to save her, to live with her, for her to live with me and feel so guilty but it really isn't practical where I live to support mum with what she needs. I also work full time. Mum does have another assessment in early January so we are waiting to hear what they say. It is a shock how she has decline so quickly. The other thing is that we have an EPA so are not in charge of her health and welfare. Do I need to get the social services involved if the memory clinic think it is time to move mum into a care home, or the live-in care can't continue because of lack of sleep ?

Many thanks for reading and any feedback is really welcome.

Ruth
 

Jessbow

Registered User
Mar 1, 2013
3,795
0
West Hertfordshire
It does sound as though it would be a good idea. Care homes have stff on 24/7 so someone that wanted to be up in the night wouldnt be problem in the right setting.

How resistant would she be, do you think?

If she'd be self funding, you dont have to get anyones permission.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,006
0
Kent
Hello @Ruth32

It sounds as if your mum still likes social interaction if she enjoys visiting friends and already lives in a retirement complex.

The problems arise when she loses insight and her social skills as you say are not filtered.

Don`t you think residential care might be the solution?

Your mum is half way there by living where she does and residential care would provide staff on duty 24/7 to smooth out areas of confusion.
 

karenbow

Registered User
May 24, 2021
66
0
hi ruth this is really difficult for you - it sounds as if you have been doing everything you can to keep your mum at home,and this is what most of us have wanted to do ,the problem comes when the condition deteriorates and has an impact on the people trying to care for your mum ie yourself, family carers etc- it does become unbelievably hard and sometimes we have to make decisions we really do not want to do -it may b easier for your mum to enter residential care or nursing care as she already has a live in carer and it may not seem much different to her- the only thing that is a concern is that your mum enjoys socialising , still goes out etc and you would need to find a care home that does not restrict the things your mum enjoys doing and some homes are reluctant to take people with alzheimers- i really feel for you in this situation- i had to make the same decision myself although my mum was very late stage ,bed bound , no cognition whatsoever and mum needed 24/7 nursing care she was only in her care home for 4 months before she passed away it is heartbreaking but keep thinking it through , talk it over with family- you will come to the right decision because you have been and are continuing to do you best
 

Sarasa

Volunteer Host
Apr 13, 2018
4,179
0
Hi @Ruth32, it does sound like a care home might be the best solution. My mum was also pretty capable of doing day to day things when I moved her into care, too capable in a way as it was her going drinking with random men in the local pub and bringing at least one of them home which made me decide she was no longer safe living alone. If your mum is upsetting other residents in the complex you may find she is asked to leave anyway.
Have a look at a few care homes, they are not all the same. Mum's first care home had tons of stuff on including trips out, art classes, visiting singers. Mum and I got involved in an amazing flash mob dance the home was part of. So being in a home doesn't mean just sitting in a chair doing nothing. Of course covid restrictions will have curtailed some activities but a good home will still have stuff on. Mum is past all that now, and though her new home does do things, she is beyond getting involved in them.
This might be a useful site to look at https://www.carehome.co.uk/
 

Ruth32

New member
Oct 29, 2021
6
0
Thank you so much for your replies. My gut instinct does say a care home is best, but I know mum would be beside herself if I suggested it, but I also know eventually and it is looking like sooner rather than later that this will happen. I really can't believe the speed at which this has progressed. Mum will definitely be anti care homes, she is still anti live in care and basically ignores the carer that is living with her.

I think I am taking the cowards way out and waiting for the next assessment from the memory clinic. They will be doing a placement assessment too - I think. Mum is self-funding and I am slightly confused on what would happen if she refused to do a move to a care home, I am 100% sure she will refuse.

I have just got off the phone to the complex and have now heard that the person who lives above her is complaining about the sensor going off in the night and is disturbing the resident above, which I fully understand, but we can't take the sensor off as it is for safety.

Also her carer has handed in her notice and is leaving on the 29th December, so now have a new carer to introduce, but I can see this going downhill because of the nightly wandering. I am also waiting for an appointment with doctor because I am wondering whether sleeping tablets could help.

Will start looking at care homes and I'm happy to hear there are homes out there with plenty of activities, because I think this is what she needs. Interaction and things to keep her occupied during the day, so she will sleep at night. At the moment the carer does nothing with her except sees that she is safe and cooks and cleans. I am not blaming her because as I said mum basically ignores that she is there.

Thanks again.
 

Violet Jane

Registered User
Aug 23, 2021
585
0
Most live-in care contracts stipulate that the the carer may not be woken more than twice a night. If someone is up all night or repeatedly you will need to engage / employ a 'waking night' carer in addition to the live-in carer. That is a very expensive option and a care home would almost certainly be considerably cheaper. It's difficult because your mother is quite capable in some ways but requires 24 hour supervision which can only be provided by live-in carers or a care home.

It sounds as if your mother will be required to leave her retirement complex anyway assuming that there is a clause in the contract which can require this.

If your mother has lost capacity to make decisions about her living arrangements then the decision will be made for her by her attorney for health and welfare or SS.
 

lollyc

Registered User
Sep 9, 2020
673
0
Thank you so much for your replies. My gut instinct does say a care home is best, but I know mum would be beside herself if I suggested it, but I also know eventually and it is looking like sooner rather than later that this will happen. I really can't believe the speed at which this has progressed. Mum will definitely be anti care homes, she is still anti live in care and basically ignores the carer that is living with her.

I think I am taking the cowards way out and waiting for the next assessment from the memory clinic. They will be doing a placement assessment too - I think. Mum is self-funding and I am slightly confused on what would happen if she refused to do a move to a care home, I am 100% sure she will refuse.

I have just got off the phone to the complex and have now heard that the person who lives above her is complaining about the sensor going off in the night and is disturbing the resident above, which I fully understand, but we can't take the sensor off as it is for safety.

Also her carer has handed in her notice and is leaving on the 29th December, so now have a new carer to introduce, but I can see this going downhill because of the nightly wandering. I am also waiting for an appointment with doctor because I am wondering whether sleeping tablets could help.

Will start looking at care homes and I'm happy to hear there are homes out there with plenty of activities, because I think this is what she needs. Interaction and things to keep her occupied during the day, so she will sleep at night. At the moment the carer does nothing with her except sees that she is safe and cooks and cleans. I am not blaming her because as I said mum basically ignores that she is there.

Thanks again.
If the doctor will speak to you, then I think the idea of some sort of sleeping / anti anxiety medication may well help in the short term. My mother went through a stage of waking up 6 or 7 times a night, so I can understand why the carer couldn't cope. She is now on Mirtazipine, Quetiapine ( and Lorazepam on an as / when basis) and sleeps through the night 90% of the time. Be warned the doctor will be reluctant because of the possible increased falls risk. For me, she was already at risk of falling by getting up so frequently, so I was willng to take that chance. She is also on various heart tablets, all of which have dizziness / light headedness as side effects, so I felt they were being difficult because not sleeping wasn't a "proper illness".
 

Jessbow

Registered User
Mar 1, 2013
3,795
0
West Hertfordshire
0Given that the carer is leaving I think i'd get moving on the looking for somewhere, soon afer christmas. Clearly she needs to be somewhere, even for a short respite stay, ( which can perhps become peminent.)


Assisted living will only work for so long, much as she needs to be safe, her follow residents need quiet enjoyment of their homes
 

MaNaAk

Registered User
Jun 19, 2016
5,986
0
Essex
Thank you so much for your replies. My gut instinct does say a care home is best, but I know mum would be beside herself if I suggested it, but I also know eventually and it is looking like sooner rather than later that this will happen. I really can't believe the speed at which this has progressed. Mum will definitely be anti care homes, she is still anti live in care and basically ignores the carer that is living with her.

I think I am taking the cowards way out and waiting for the next assessment from the memory clinic. They will be doing a placement assessment too - I think. Mum is self-funding and I am slightly confused on what would happen if she refused to do a move to a care home, I am 100% sure she will refuse.

I have just got off the phone to the complex and have now heard that the person who lives above her is complaining about the sensor going off in the night and is disturbing the resident above, which I fully understand, but we can't take the sensor off as it is for safety.

Also her carer has handed in her notice and is leaving on the 29th December, so now have a new carer to introduce, but I can see this going downhill because of the nightly wandering. I am also waiting for an appointment with doctor because I am wondering whether sleeping tablets could help.

Will start looking at care homes and I'm happy to hear there are homes out there with plenty of activities, because I think this is what she needs. Interaction and things to keep her occupied during the day, so she will sleep at night. At the moment the carer does nothing with her except sees that she is safe and cooks and cleans. I am not blaming her because as I said mum basically ignores that she is there.

Thanks again.
I also agree that a care home is the best option. I lived with dad and cared for him until I couldn't care for him anymore. He had two weeks respite in a care home and then he went back in permanently. When he went in for respite I didn't tell him it was a care home. Dad I had to spin love lies which is what you'll have to do this made it much simpler when he went in permanently.

Good luck

MaNaAk
 

MartinWL

Registered User
Jun 12, 2020
1,451
0
There is another thread about the legal position when you have EPA. You do not make medical decisions but where she lives is as much a financial decision as anything given that a care home is not free. If I remember rightly the EPA is for property and affairs - and affairs is quite a wide ranging term. So I would assume that you have all the authority you need as controller of the purse strings and I doubt that anyone will challenge you.
 

Ruth32

New member
Oct 29, 2021
6
0
Thanks all, well things have progressed rapidly again to the extent of the doctor saying she needs emergency EMI respite care and the social services being involved. I feel so bad and guilty but we now have to put mum into somewhere we haven't chosen temporarily as of tomorrow. I know it is best for her but what a time for this to happen.

Mum the other night attacked her carer with her walking stick, tried to climb out of her bedroom window and threatened to jump off the balcony. This was her first night of taking a sleeping tablet, and it obviously didn't work.

The carer walked out yesterday morning, poor lady just couldn't cope with the lack of sleep and aggression. My brother went to stay with her overnight last night and she did sleep for about 5 hours and is calm. I am travelling there today, I live around 6 hrs away.

My next question, is a little advice of what to say to mum, if anything. The care home said we can just take her in for a cup of tea and then we just say we are having a look around and leave without her knowing. I feel just awful and would prefer to try and explain to mum that the doctor says she needs some temporary extra help but I also know that will end in tears and screams. Any ideas anyone ? Next week I will be hunting for a more permanent placement nearer to both my brother and I.

Many thanks
 

thistlejak

Registered User
Jun 6, 2020
150
0
Sorry to hear of your situation.
With regards to taking your mum tomorrow I would go with the suggestion made by the care home. They have lots of experience settling people in and trying to explain to your mum won't achieve anything but upset for everyone - and you will still have to leave her there anyway.
It is hard when it is an emergency placement but it wouldn't be happening if it wasn't absolutely necessary.
There will be lots going on in the home for christmas to distract her. Has it been suggested that you don't visit her for a little while to enable her to settle?
 

canary

Registered User
Feb 25, 2014
16,776
0
South coast
I wouldnt try and explain to your mum - she would not understand and it would only further distress her. I would go with what the care home suggests.

Im sorry it has come to this, but sometimes it takes a crisis to force the issue. A live-in carer is no longer sufficient and your mum now needs a whole team of people to look after her, so please ditch the guilt. I do hope she settles soon.
xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
11,304
0
Yorkshire
hi @Ruth32
go with the suggestion from the care home ... to me it's a good sign that they have said this as it shows they understand the situation and seem prepared to support your mum through her introduction to the home

maybe write a few cards to your mum so that the staff can show/read them to her at times as they think she needs reassurance or possibly information ... one could include the explanation you wrote in one post, others could say little more than you are thinking of her and will see her soon (be vague) and anything in between .... that way she will have something that tells her she is definitely important to you and you will visit when it's possible
 

Sarasa

Volunteer Host
Apr 13, 2018
4,179
0
Hi @Ruth32 , I hope your journey to your mum's was straightforward and she is as OK as she can be when you get there.
I agree with everyone else about not telling her what is happening. Just say you're going out to a nice place for a cup of tea. If packing her bag means she'll see you doing it maybe go back to her place and do it after she's in the home and then just drop it off.
Moving mum to a care home was probably the most difficult thing I've ever done, and I felt awful lying to her, a care home was the best place for her, and it sounds as though it is what your mum needs now too.
 

Buckeroo

Registered User
Apr 16, 2020
30
0
Hi Everyone - I've not posted for ages. We have reached a crisis point (was always told it comes eventually) and after much sole searching and indecision my brother and I know that a care home for our parents is the best support for what time remains for them. Father 94 of sound mind but nearly blind, can't hear without aids and very wobbly on his feet (often falls and can't get up), lives with our mother 86 with worsening dementia, laboured walking, confusion, aggression and related agitation - and they are not a match made in heaven so she verbally attacks him daily. She still thinks she's running the home and providing food etc etc - but of course is not. We are. She can barely get herself up and dressed and is starting to forget to eat. Complains of every ailment constantly and is in tears often but will not engage in any activity we try to encourage so is bored and unstimulated. They are like a hand grenade with the pin out. No communication between them but they live in the same house.

I've found a really wonderful care home close by; with nursing also; lots going on to entertain and engage.

So assessment this Sunday with a view to them moving for "respite care" next Friday. I'm dreading it. I know its the best action and we've not taken this decision lightly and researched and visited many places to find the right one. Our father would go now - keen to get away from our mother and all the hassle, but she is adamant there is nothing wrong with her and currently very angry, constantly asking why she wasn't consulted! We have of course talked to them both but dementia memory against us. She says she will not go.

Cannot imagine how we are going to achieve this. Both in separate rooms on different floors as both have very different needs and care requirements.

Sorry to rabbit but has anyone got any suggestions/advice on how we can make this painless for all concerned but mostly for our parents who are very set in their ways and haven't seen much of the world so suddenly plucking them from their home of 30 yrs is going to be so hard for them. They fight constantly and no stimulation whatsoever. Our mother would seriously kick off if more people came to her house. And our father's health is deteriorating due to our mother's actions towards him. We have no choice, very sadly.

We've looked at the issue from all angles and a suitable care home is only option.

Can anyone offer any advice about how to handle this? It will be much appreciated. Dementia is the most horrible disease and I'm thinking of you all who are struggling. Its a nightmare.

Thank you hugely to anyone who reads this. I find it so comforting to have this support.
 

lemonbalm

Registered User
May 21, 2018
1,798
0
Hello @Buckeroo

I remember your previous posts and wondered how things were going.

Well done for making the decision to move your parents into a care home. It’s a really difficult thing to go through but I am sure lots of members will be along with practical advice to make the move easier. My mum’s move into a care home went very badly, to be honest, but she was surprisingly distracted with a meal, at which point I slipped away, so arranging to arrive shortly before a mealtime might be a good idea. The staff will be well used to getting people in, so should know what to do and will have their own advice for you.

Are you able to get your parents’ rooms ready well beforehand? Having clothes and some familiar belongings there already would be good, and some welcoming flowers for your mum’s room may help. The sight of suitcases etc may be distressing for your mum on the day, so the more you can do in advance the better I think.

How are you planning to transport your parents? Does the home have any transport available? Is anyone helping you?

I’m wondering if you could actually move your Dad in first and then take your mum a few days later “to visit” …..
 

Sarasa

Volunteer Host
Apr 13, 2018
4,179
0
Hi @Buckeroo , how many of you will be involved in moving them? I found it tricky moving mum on my own, if I’d had two parents with different needs it would have been impossible. My husband manage moving his mother better because his sister went on ahead to the home to get her room sorted and husband and mother in law went for a scenic drive and turned up and hour or two later. The home were very good. Her room was arranged in as similar a manner as her old bedroom as possible and they had a cup of her favourite Earl Grey tea for her when she arrived.

When my mum was assessed for her care home I didn't tell her what it was, just said it was some friends of mine that happened to be in her area visiting. Difficult when your father is aware of the need to move and your mother is not, but maybe you can sell it to her as a break while something is done to the house, or that the doctor wants her to go and build up her strength.

As @lemonbalm suggested I too wonder if you could move your dad first and then move your mum in as part of a 'visit'.

I's probably best not to discuss it too much until it all happens, if you can.

Good luck with it all. Moving mum into care is probably the hardest thing I've ever done, but I'm so glad I didn't leave her at home until we had a really serious crisis.
 

Valpiana

Registered User
Sep 16, 2019
402
0
Hello, I moved my OH to a care home last week. It was a heartbreaking decision but without a doubt the correct one. I did it before we reached a crisis although I don't think we were far off as I was exhausted.
I planned it like a military operation! Everything he needed was labelled and taken up beforehand. I took his favourite chair cover so it would look familiar. The room is quite small so I couldn't arrange it to be like home but he seems happy with it.
The home said not to visit for a week but my OH knows who I am so I couldn't do that. We have both shed lots of tears and even though it's not ideal it is the right choice for both of us.
On the day I said that we were going for a walk ( my OH has no mobility problems) and he was quite happy to go. I told him beforehand what was happening and explained the Doctor had told me I needed a rest . He does think it's a temporary respite stay but as he doesn't have any concept of time I can continue saying I still need a rest.
The staff said to drop him off before lunch as that is a good distraction and that was a good idea.
I know he is safe ,warm,well fed and looked after by lovely staff so I am beginning to relax and enjoy spending time with him instead of being an exhausted angry carer.
Good luck, it's probably going to be the most difficult decision you will ever have to make but you will find a way to make it work.