• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Should my mum be in a home?

MumwithLBD

New member
Apr 2, 2021
3
0
Hi there, my mum is 71 and was diagnosed with Lewy Body in January.

Of course I’m sure this would have been building up for years but it all happened very fast due to delirium from a UTI. Our first trip to a&e was October then we had a diagnosis of LBD by end of Jan. Mum has 2/3 of the main symptoms of LB - she does not have the sleep disorder.

So far the cognitive side of the LB is rapidly declining and mums anxiety and depression are disabling for her so she cannot be alone and has 24/7 carers living with her in her home.

All of the advice we are given is that you should keep people at home for as long as possible and that a care home is a last resort. The CPN says that people can rapidly deteriorate in a care home environment. Believe me I want the absolute best for mum and I value the opinion of the professional but I can’t help but think they are wrong and that a home would be much better for mum.

I say this because when I visit mum she just does not seem happy at home all the time with one carer. They don’t do anything...I know it’s lockdown no one can do anything...but even so they are just in a small flat with one bathroom and no outside space watching tv all day. With the LBD mum well formed delusions, so she thinks the carers are stealing from her and everyone’s tricking her for money. She doesn’t understand that she’s the only one taking the meds and wearing the patch...she thinks she’s in an experiment.

My thoughts are that mum would be much happier and distracted from these delusions if she were around other people with dementia she could talk to and have activities or more space to roam around.

Whenever I mention it to the CPN she just says that mum is no where near needing to be in a home and that it’s a last resort. But to me that doesn’t make sense as what if mum were not able to afford to have a 24/7 private carer....she would 100% be put in a home by the NHS. Surely the answer is that either a private live in carer or a home is the same same in terms of 24/7 care which is what mum needs.

Eventually mum will have to go into a home as when the Parkinson’s side of the LB she will have troubles with movement so this will happened eventually it’s just if we make the move sooner that the professionals believe is necessary.

We are not able to visit any homes at the moment due to covid but my hope is mum will settle into one nicely and have the day to day anxiety’s and worries taken away simply by being in a likeminded environment, friendship, activities and of course clinical care from a team of people.

I guess the advice I’m looking for is peoples experiences with care homes and dementia? Is it wrong to think that a care home is the best place for mum even though the professional advice is she isn’t ready to go?

Thanks so much for everyone’s time. I honestly have spent hours on these forums in the recent months I have found it a huge source of support and information.

x x
 

kindred

Registered User
Apr 8, 2018
2,617
0
Hi there, my mum is 71 and was diagnosed with Lewy Body in January.

Of course I’m sure this would have been building up for years but it all happened very fast due to delirium from a UTI. Our first trip to a&e was October then we had a diagnosis of LBD by end of Jan. Mum has 2/3 of the main symptoms of LB - she does not have the sleep disorder.

So far the cognitive side of the LB is rapidly declining and mums anxiety and depression are disabling for her so she cannot be alone and has 24/7 carers living with her in her home.

All of the advice we are given is that you should keep people at home for as long as possible and that a care home is a last resort. The CPN says that people can rapidly deteriorate in a care home environment. Believe me I want the absolute best for mum and I value the opinion of the professional but I can’t help but think they are wrong and that a home would be much better for mum.

I say this because when I visit mum she just does not seem happy at home all the time with one carer. They don’t do anything...I know it’s lockdown no one can do anything...but even so they are just in a small flat with one bathroom and no outside space watching tv all day. With the LBD mum well formed delusions, so she thinks the carers are stealing from her and everyone’s tricking her for money. She doesn’t understand that she’s the only one taking the meds and wearing the patch...she thinks she’s in an experiment.

My thoughts are that mum would be much happier and distracted from these delusions if she were around other people with dementia she could talk to and have activities or more space to roam around.

Whenever I mention it to the CPN she just says that mum is no where near needing to be in a home and that it’s a last resort. But to me that doesn’t make sense as what if mum were not able to afford to have a 24/7 private carer....she would 100% be put in a home by the NHS. Surely the answer is that either a private live in carer or a home is the same same in terms of 24/7 care which is what mum needs.

Eventually mum will have to go into a home as when the Parkinson’s side of the LB she will have troubles with movement so this will happened eventually it’s just if we make the move sooner that the professionals believe is necessary.

We are not able to visit any homes at the moment due to covid but my hope is mum will settle into one nicely and have the day to day anxiety’s and worries taken away simply by being in a likeminded environment, friendship, activities and of course clinical care from a team of people.

I guess the advice I’m looking for is peoples experiences with care homes and dementia? Is it wrong to think that a care home is the best place for mum even though the professional advice is she isn’t ready to go?

Thanks so much for everyone’s time. I honestly have spent hours on these forums in the recent months I have found it a huge source of support and information.

x x
Welcome and good to hear from you. My husband thrived in his nursing home, he loved the social life, the laughter, music, conversation. He was admitted from hospital with severe dementia. He kept saying to me I am so happy here. I now volunteer in this nursing home and so often see residents come here and blossom. The company and activities seem to be so loved. Warmest. Kindred
 

Rosettastone57

Registered User
Oct 27, 2016
1,489
0
I don't actually agree with the CPN. There are many posts on here where loved ones have gone into care and thrived. My mother in law was in care after having carers in for 3 years and she was infinitely better in residential care. She was no longer so anxious, the delusions almost disappeared and she had a whole team supervising her. She was self funding and we never involved social services, or the GP, my husband just organised the move from her being in hospital. He just knew the time had come for care. It was the best decision we made for her and for the family
 

Sarasa

Volunteer Host
Apr 13, 2018
2,797
0
Hi @MumwithLBD and welcome to Dementia Talking Point. This is a very friendly and supportive place and you'll get lots of support and advice here.
I too think your mum may well be better in a care home. Things are tricky with the moment, not only with viewing possible homes, but with visiting if your mum moved to one. On the other hand there would be more company, and even with Covid restrictions homes have activities that your mother might enjoy more that sitting in front of the TV. Over the next few months restrictions should ease which will make it all a lot easier
Maybe contact a few homes, a lot have video tours that might help, and see if there is somewhere that might be suitable. I started looking a couple of years before I actually moved mum to into care.
Your mum might decline, but not everybody does. She may well take a while to settle, my mother did, but if she moved soon she'll be more able to enjoy what is on offer.
 

Palerider

Registered User
Aug 9, 2015
2,445
0
North West
Hi there, my mum is 71 and was diagnosed with Lewy Body in January.

Of course I’m sure this would have been building up for years but it all happened very fast due to delirium from a UTI. Our first trip to a&e was October then we had a diagnosis of LBD by end of Jan. Mum has 2/3 of the main symptoms of LB - she does not have the sleep disorder.

So far the cognitive side of the LB is rapidly declining and mums anxiety and depression are disabling for her so she cannot be alone and has 24/7 carers living with her in her home.

All of the advice we are given is that you should keep people at home for as long as possible and that a care home is a last resort. The CPN says that people can rapidly deteriorate in a care home environment. Believe me I want the absolute best for mum and I value the opinion of the professional but I can’t help but think they are wrong and that a home would be much better for mum.

I say this because when I visit mum she just does not seem happy at home all the time with one carer. They don’t do anything...I know it’s lockdown no one can do anything...but even so they are just in a small flat with one bathroom and no outside space watching tv all day. With the LBD mum well formed delusions, so she thinks the carers are stealing from her and everyone’s tricking her for money. She doesn’t understand that she’s the only one taking the meds and wearing the patch...she thinks she’s in an experiment.

My thoughts are that mum would be much happier and distracted from these delusions if she were around other people with dementia she could talk to and have activities or more space to roam around.

Whenever I mention it to the CPN she just says that mum is no where near needing to be in a home and that it’s a last resort. But to me that doesn’t make sense as what if mum were not able to afford to have a 24/7 private carer....she would 100% be put in a home by the NHS. Surely the answer is that either a private live in carer or a home is the same same in terms of 24/7 care which is what mum needs.

Eventually mum will have to go into a home as when the Parkinson’s side of the LB she will have troubles with movement so this will happened eventually it’s just if we make the move sooner that the professionals believe is necessary.

We are not able to visit any homes at the moment due to covid but my hope is mum will settle into one nicely and have the day to day anxiety’s and worries taken away simply by being in a likeminded environment, friendship, activities and of course clinical care from a team of people.

I guess the advice I’m looking for is peoples experiences with care homes and dementia? Is it wrong to think that a care home is the best place for mum even though the professional advice is she isn’t ready to go?

Thanks so much for everyone’s time. I honestly have spent hours on these forums in the recent months I have found it a huge source of support and information.

x x
I think many will tell you similar stories of how dementia changes situations at home. My mum asked to remain home and I did this for as long as I could manage on my own. Mum was fine for many years until it was clear her dementia progressed. I think whatever the situation (and I say this from personal experience) placing someone into care with the promise of keeping them at home is hard. But the reality is that at some point the needs of the person with dementia will exceed what can be delivered at home. Some families manage to come together to support remaining at home, but others may struggle with this even with support and good intentions. I can undertand professionals saying not yet or they are not ready as the move can be distressing if there is still a clear awareness of home. I waited until mum declared herself and she had lost knwoing where her real home was, plus there were other issues at the time. Soon though I had to put mum into care despite all the feedback from the agencies, in the end they agreed it was time. Mum settled in fairly well, but the other side of the coin of course is living with the guilt of carrying out the act. There is nothing wrong with waiting until a time you feel is right, but with that comes the ever increasing burden of worry and anxiety that they are safe, reassured and have people around them 24/7.
 

lemonbalm

Registered User
May 21, 2018
1,383
0
Hello @MumwithLBD

You know your mum better than anyone. I would say when you feel it's time, it's probably time. The link below is very useful for searching for care-homes using various criteria and there is also a lot of good information at the bottom of the main page about how to choose a care home, what to ask and so on. It's a good resource, even if you are not quite ready:

 

Jayess

New member
Apr 1, 2021
1
0
I am completely new to this forum but reading the replies to the original post has helped and reassured me. For almost 5 years my sister and I have taken it in turns to stay with my mum and help her keep her in her own home. She wandered out late one night at the beginning of January and neighbours rang me. I live nearest to mum but it is 17 miles away. I took her to live with me but her dementia has now made it very difficult and I have been getting up at least once every night sometimes up to seven times and felt exhausted. Mum no longer recognised me or where she was and often felt anxious in spite of everything I was willing to sacrifice. I am 65 and mum is 95. A small stroke resulted in a hospital admission and my sister and I made the heart breaking decision that residential care would be best. Reading the posts I think this is best. As I type this mum will have just left hospital and will be settling into her new home. Thank you for this original thread and the posts made. I'm coming to terms with all this and I agree that something inside you let's you know it's the right time. Thanks and best wishes it's heart breaking to make these decisions and care so much I really understand
 

MaNaAk

Registered User
Jun 19, 2016
3,973
0
Essex
I thought dad seemed better in his care home I had to put him there as I couldn't do anymore for him. He had several falls and two escapes and so I don't entirely agree with the CPN especially if your mum needs a carer 24/7.

MaNaAk
 

MumwithLBD

New member
Apr 2, 2021
3
0
Thank you so much for the replies it means the world to me to know I’m not alone in how I feel.

After I posted this message I had a call from the live in carer. Although she said she was still coping ok I could sense that it’s very draining emotionally for her. And that’s coming from someone who’s being paid a lot of money to care for mum. We did discuss mum doing some respite in a home in July (when the restrictions are lifted) and the carer seemed to think this was a good idea too and that maybe mum would want to stay.

I also bought it up with mum, I said that some work needs to be done on the flat so would be best for her to do a short stay in a home and said it would be like going to a hotel for a few weeks. Mum seemed ok with this but her main worry was that she doesn’t want to be ‘locked away and forgotten about’. But the right home I imagine goes above and beyond to distract, stimulate and do activities with their residents so she won’t ever feel like that hopefully

It’s interesting how everyone has replied with you just kinda know when it’s time to go into a home. But I am glad that I tried with the live in care first as I know it’s not worked and it’s time to move to a care home. I’m sure it will have it’s ups and downs too and perhaps the first place won’t be the forever place.

On a separate note I just wanted to vent at how crazy expensive care is! Why should care be a privilege to rich people, everyone deserves quality care it’s so sad. You work your whole life to pay off a mortgage then it all goes to a care home. I can’t ever imagine being able to afford it without owning a property outright!

My next step is to research homes. I’ve done a bit, we are based in London so not much outside space but there seems to be a nice one in Kingston that have dementia training with all the staff. Perhaps I need to look further out of London but I feel it’s better she’s closer to family.

Its a cruel illness. It’s so sad to grieve the loss of who my mum was even though she’s still here. It’s a total honour to look after her and I’ll make mistakes I’m sure but all I want is for her to be comfortable and to know there are more happy times to come and no reason we can’t still laugh together.
 

JC51

Registered User
Jan 5, 2021
112
0
I totally agree with you, especially the crazy cost of care homes. My wife has LBD with Alzheimer’s ( mixed dementia) the sleep pattern is mind blowing when it starts. My OH has no idea of time of day, I have to tell her “ it’s morning , afternoon or night. Sleeping most of the day and up 4/5/6 times at night is draining. I’ve learned to grab a couple of hours during the day to counteract the disturbed nights. I dread the day a care home will be needed, and the savings disappear. How can £1400/£1700 a week be justified.
 

Lorna44

Registered User
Jul 16, 2016
219
0
Surrey
I looked into live in care at home for mum, but it just wasn't realistic, money wise.
I live around the same area as you and eventually mum went into a EMI home in Sutton, specialising in Parkinsons & challenging behaviour. Not the Cheapest place but the best fit for mum & her condition. Lovely place with a small outside garden.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,353
0
High Peak
It's interesting that the live in carer is showing the strain. Looking after someone with dementia is incredibly hard for one person which is where care homes really come into their own. If your mum was there, she'd get a fresh-on-shift carer greeting her cheerily in the middle of the night, not someone sleep deprived who's had to get up for the seventh time. There would always be other people to talk to, different places to sit with different views from the windows, corridors to wander safely, maybe a garden.

If you have LPA and your mum will be self-funding you can make the decision yourself.
 

MumwithLBD

New member
Apr 2, 2021
3
0
Money wise it’s slightly cheaper having a live in carer than a care home atm. But obviously we have to pay for house bills and food on top. Moving to a home would streamline the costs (assuming there’s no hidden costs - other than the ones they state eg physio, newspapers etc).

We have 2 carers, one Mon-Fri then a weekend carer but it is still mentally very challenging for those 5 days. I do agree that in a home the staff are on shift work therefore will be much better rested and up to the various behaviour challenges as an when they happen.

I do have moments of guilt where I wonder if I’m doing this because it’s better for me mum is in a home...as then I don’t have to worry. But this isn’t about me and having read everyone’s replies I feel more confident I’m doing it for the right reasons.

I have LPA but not POH, I believe LPA is enough to be put into a home even if she doesn’t want to go.

I know this as we had that problem in January. Found a home in Blackheath near my sister, we did the tour and the assessment virtually but mum said she couldn’t possibly do the 2 weeks isolation and that she would refuse. So the head nurse was like sorry we can’t take your mum, she doesn’t want to go and if social services decide that she’s capable of making the decision to stay at home with the live in carers then you can’t really make her come here. I don’t think at that stage we had the actual LBD diagnosis and we didn’t have LPA.

Things are different now though and it’s clear mum needs 24/7 care.

I blame covid for stealing the last year of my mum as I knew her. I also blame covid for maybe speeding up the illness as mum was alone in her home for a year, she was so lonely and depressed and she never recovered from it. Now I’m struggling to decide when the right time to go into a home is because of all these covid restrictions! I’m really hoping June 21st means I can go visit some places as I just cannot imagine making such a big decision on a home without going there...it’s like buying a house online it’s just weird, you need to get a vibe of the staff and the people there!
 

Rosettastone57

Registered User
Oct 27, 2016
1,489
0
Hi @MumwithLBD , my husband and I were in a similar position with my mother in law who refused point blank to go into care. This was all pre covid ,but my mother in law refused to even leave her home, not even to visit our house. She had carers three times a day which worked quite well initially, but this situation became untenable particularly at night. She became a high falls risk, was hallucinating and extremely anxious at night and had faecal incontinence in the mix. My husband recognised she needed to go into care, but was not prepared to dupe her to get her there. We never involved social services so we just waited for a crisis. She became ill and went into hospital and we began the search for the home. She was self funding and she eventually went into care straight from hospital, never actually going back home. Once there she was clean, fed and well cared for. My husband's relationship also improved with his mother. He was no longer a carer waiting for the next phone call from her to sort out a crisis, but her son, with less resentment having to deal with her.
 

TH@cro

New member
Apr 6, 2021
2
0
Out of interest when the time comes how does it all work. If the person can only pay for care for a limited period but has a home to sell. Do the council pay while the house is sold and then you have to pay them back or does the care home itself allow you "credit" secured against the property?

If you are self funding how do you ensure that what the council will pay will cover the costs if you live long enough to spend all your funds? Is there a nationally set amount or does it vary from council to council?

Is there much difference in standard when it comes to the care the council will support compared with more expensive private care? Is it worth taking the risk and going for something more expensive? The risk being of course living long enough to have to be moved if and when the council might have to start funding the care? or is the difference so little in general that its not worth risking the trauma of a second move.

I am happy for every last penny of my Mum's money to be spent if it means she gets a more pleasant experience. Equally i am sure there is value in moving as little as possible.
 

Louise7

Volunteer Host
Mar 25, 2016
2,989
0
Hello @TH@cro Assuming your mum lives in England, if she has more than £23,250 she will be expected to pay all of her care home fees. If her house has not been sold before her savings drop to that amount you can request a financial assessment by the local authority and they can disregard the property as capital for a period of up to12 weeks to allow time for it to be sold. They will pay the care home fees during this period but only up to their maximum amount (this amount does not have to be repaid). This figure varies depending on the local authority but (from experience) is invariably quite a lot less than most care homes actually charge.

If the property is not sold after 12 weeks then you can apply for a deferred payment charge agreement. This would mean that the local authority place a charge on the property with land registry and 'loan' the cost of the care home fees up to a certain amount, including interest and arrangement fees. The amount loaned would be determined by individual local authorities - they provide a contract stating how much they are prepared to pay. The amount paid the local authority spend on care home fees would need to be repaid when the property is sold or your mum passed away.

The local authority are obliged to offer at least one placement which is within their budget and meets the persons care needs so choice of home is likely to be very limited. Some care homes will accept a lower local authority rate if a self-funder runs out of funds and becomes dependant on the local authority to pay their care home fees, others won't. If looking for a home ask if they also accept residents at the local authority rate, to prevent a possible move when the funds run out. A more expensive home with lots of extras included may not necessarily provide better care than a less expensive one.

Hope that has helped, and you might find this factsheet helpful too:

 

Rosettastone57

Registered User
Oct 27, 2016
1,489
0
Out of interest when the time comes how does it all work. If the person can only pay for care for a limited period but has a home to sell. Do the council pay while the house is sold and then you have to pay them back or does the care home itself allow you "credit" secured against the property?

If you are self funding how do you ensure that what the council will pay will cover the costs if you live long enough to spend all your funds? Is there a nationally set amount or does it vary from council to council?

Is there much difference in standard when it comes to the care the council will support compared with more expensive private care? Is it worth taking the risk and going for something more expensive? The risk being of course living long enough to have to be moved if and when the council might have to start funding the care? or is the difference so little in general that its not worth risking the trauma of a second move.

I am happy for every last penny of my Mum's money to be spent if it means she gets a more pleasant experience. Equally i am sure there is value in moving as little as possible.
One of the questions I asked the care home before my mother in law was accepted was if her money ran out, would she still be able to stay. She had 18 months of fees in savings then her property would have to be sold. The care home told me that the local authority wouldn't meet her fees £1300 per week in total but if she had been a long term resident then she would be ok to stay. As it were this was never tested as my mother in law passed away before that stage was reached.
 

northumbrian_k

Registered User
Mar 2, 2017
1,148
0
Newcastle
It is an important question @Rosettastone57 When I was visiting potential homes for my wife (long before Covid) I always asked whether they accepted the Local Authority rate or whether there would be need for a third party top up when my wife's self-funding period ended. Unsurprisingly, the homes that were all top show and designed to appeal to 'discerning' relatives, prided themselves on being like hotels and (in some cases) had a free bar were the ones that didn't accept the LA rate. The care home in which my wife seems contented has no extra amenities, has a far more realistic rate and provides proper person-centred care. Moving from a situation where she was self-funding to getting the LA involved was made simple because the home accepts what the LA is prepared to pay without need for further top-up.
 

Mandy76

Registered User
Jul 25, 2019
46
0
Sorry to hear about what you are going through. My mother also has LBD but is already in a care home. She developed this illness literally overnight, and went from being normal to being taken into the psychiatric ward of the local hospital in the space of 7.5 months.

Whenever the nurse from the memory clinic visited the house, she always said that my mother was no where near being ready for a care home - this was because my mother went into 'hostess mode' whenever someone visited, so she could pass herself off as fairly normal. But within a short space of time, it became clear that my father could not look after her at home because she got trapped in a state of constant delusion, believing him to be an impostor trying to kill her.

The morning that she was hospitalised, she was howling and crying and would not get out of bed - she thought my dad was a strange man and was terrified. He called the memory clinic and they sent two nurses to the house to collect her and she was taken to hospital and admitted straight onto the psychiatric ward. She was in hospital for 6 months before being transferred to a care home.

The hospital arranged it via social services, we didn't get to visit it beforehand due to covid, but luckily it is a decent place and we have other people we know who have family there, so they could tell us that it was fine.

I would not say that my mother has enjoyed herself in the home, but she was in such a terrible state before she was hospitalised, so she is better than she was. There is no where in the world that you could put her that she would be happy with - it's just the nature of her illness - she is very anxious and restless, always saying she wants to go home. But she means back to 1960 to when she was living with her parents and siblings.

At least she is not sitting there in terror believing that she has been kidnapped anymore, and the pressure of that situation is removed from my father, as he was suffering terribly too with what she was putting him through. He was under constant verbal attack and had to hide about 20 times a day so that she couldn't see him and think he was the kidnapper/imposter/dead relative.

You will have gathered from other posts in this forum that the authorities are reluctant to agree that someone needs residential care - we would never have gotten it if we hadn't had her hospitalised first so they could see what she was really like.
 

Frank24

Registered User
Feb 13, 2018
106
0
I had homecare for my Mum for a long time - and it is difficult and fraught at times. Lockdown absolutely made the pressures too much for the carers I had and Mum was getting worse. I feel better selfishly that she is now in a home.
POA means you can make that decision - I think you can demonstrate that you have tried other avenues. Additionally this is a progressive disease... so you have to think about how you would cope if your mothers situation worsened. For example my Mum is not immobile. I could not have coped with dealing with 2 carers living in at the same time and the hoists and things when I was giving back up care for breaks. My mum accepts that she lives there now although all of this is harder to do in Covid Times. Wishing the best of luck getting in sorted and coming to peace with your decision.
I know when i see pictures of my Mum laughing with the other residents watching telly I feel reassured that I made the right move as I think she is more stimulated than the home care situation.
 

Staff online

Forum statistics

Threads
118,829
Messages
1,739,760
Members
69,635
Latest member
Dom62