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Mother keeping live-in carer awake at night

NickyK

New member
Nov 24, 2020
5
0
Hi All, my mother is 93 and has been living independently with my 97 yr old father. She was diagnosed with Alzheimers over a year ago, but was coping really well until she had a fall and broke her hip at the end of September. They did a half hip replacement and physically she has recovered quite well, but her alzheimers has now progressed considerably. She now needs 24/7 care and we have just employed a live in carer, who is amazing, but I don't know how she is still standing. Mum is up 5/6 times a night for a wee (No UTI) and then thinks 430 am is time to get up. She has severe arthritis in her knees , is a massive falls risk and is incontinent. Care is so tricky. I work full time and have twins who are about to do their GCSES, my 89yr old uncle lives with us and has his own needs, my father doesn't want her in a care home, he doesn't want to go into a care home either and the cost of caring for them at home (as I'm sure you all know) is eye watering. Hoping to get some advice on sleeping (to help the lovely carer) and funding, to help my poor parents dwindling funds!

Nx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,815
0
Yorkshire
hello @NickyK
a warm welcome to DTP
gosh you have a lot on your plate
have you applied for Attendance Allowance, as your mum sounds to qualify for the higher level
Attendance Allowance - GOV.UK (www.gov.uk)
when that is in place, you can contact the Council about a disregard of Council Tax in respect of your mother (not sure how the presence of a live-in carer affects that)
there's also carer's allowance
Carer's Allowance - GOV.UK (www.gov.uk)
and some Utility companies have schemes for vulnerable adults

I'm sorry to say that having the person with dementia up so much in the night is what often leads to a move into residential care, as it becomes impossible for one person to provide the level of support needed ... I appreciate that your dad doesn't want this, sometimes need takes over from wants
it sounds as though you may need 2 live-in carers, which will be expensive
this may explain finances ... the fees for any care should be paid from the person's finances only, and the Local Authority may contribute but will generally only fund up to 4 home care visits a day,not live-in care ... though home care visits might take some strain off the carer, you and your dad
Paying for care and support in England | Alzheimer's Society
 

Rosettastone57

Registered User
Oct 27, 2016
1,452
0
There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point. Your mother needs a whole team looking after her 24/7 in a care home setting. Your situation is simply not tenable without 2 live in carers which will probably be more expensive than a care home. I'm sure that's not what you want to hear.
 

jugglingmum

Registered User
Jan 5, 2014
5,993
0
Chester
There is only one of you and you've got a lot on your plate. You can only spread yourself so thinly. GSCEs this year in my experience are requiring a lot more parental input - we don't know if they'll be cancelled and teacher assessed (in England) so every mock exam and school assessment counts - therefore we have made this a big priority in our house this year.

You get to a point where a PWD/elderly parents needs are more important than their wants.

I explained this to my husband this year re his mum (my MIL) and it was a bit of a lightbulb moment. In his mum's case his sister wants a live in carer and neither us or her friends think this would work (friends are hands on we are 3.5 hours away sister in law is in US).

You can't physically be there, and a live in carer is meant to sleep and have 2 hours off. It sounds like you are self funding, so this means at least you won't have to wait until social sevices find a care home for you, but being honest, your mum needs to be in a care home ASAP, you somehow need to sort this out. It isn't easy. Whilst live in care can work well for frail elderly I personally think it is always doomed to fail if dementia is in the mix.
 

canary

Registered User
Feb 25, 2014
14,631
0
South coast
Unfortunately, it is very common for people with dementia to not sleep at night. Usually, this is not because of insomnia, but because their body clock is broken and they think it is day time, when its actually the wee small hours of the morning! You could try talking to her GP about sleeping tablets, but often doctors are unwilling to give then if there is a falls risk as sleeping tablets make you more unsteady. They also dont always work and the person with dementia still wakes up at night and is wandering around confused and unsteady.

Live-in care is often seen as a magic wand, but it often doesnt work because dementia gets to the stage where it is too much for one person. TBH, Id be surprised if the carer stays on much longer. It is also (as you have discovered) extremely expensive and Social Services will not fund it - the maximum they will fund for care at home is 3 or 4 visits a day (nothing overnight), so once your parents money runs out the live-in care would have to stop anyway.

No-one wants to move into a care home and I can understand your dads resistance, but I think this is what your mum needs - and eventually needs outweigh wants.
 

lollyc

Registered User
Sep 9, 2020
162
0
Hi All, my mother is 93 and has been living independently with my 97 yr old father. She was diagnosed with Alzheimers over a year ago, but was coping really well until she had a fall and broke her hip at the end of September. They did a half hip replacement and physically she has recovered quite well, but her alzheimers has now progressed considerably. She now needs 24/7 care and we have just employed a live in carer, who is amazing, but I don't know how she is still standing. Mum is up 5/6 times a night for a wee (No UTI) and then thinks 430 am is time to get up. She has severe arthritis in her knees , is a massive falls risk and is incontinent. Care is so tricky. I work full time and have twins who are about to do their GCSES, my 89yr old uncle lives with us and has his own needs, my father doesn't want her in a care home, he doesn't want to go into a care home either and the cost of caring for them at home (as I'm sure you all know) is eye watering. Hoping to get some advice on sleeping (to help the lovely carer) and funding, to help my poor parents dwindling funds!

Nx
My Mum used to be exactly the same - up 5 or 6 times a night to go to the loo - and I found it very wearing. I'm afraid we resorted to drugs (for Mum, not me!) and that has helped enormously.
I firmly believe that Mum wasn't waking up wanting to go to the loo, rather woke up, and then decided she might as well go as she was awake. There is a trade off against a potentially increased fall risk, but I always felt that getting up half a dozen times a night was already adding to her risks. Speak to her GP .
 

NickyK

New member
Nov 24, 2020
5
0
Thank you all so much for your responses. We do think that she probably needs to be in a home, but as always, things are never simple. The main issue is my father, who would hate being in a home himself and hate being without her if she went alone (although she drives him mad!) but at the moment Covid is obviously on all our minds. I am thinking that we will have to make the decision after Christmas. So, if the carer can last until then, that would be great.

She is on memantine and metrazipine, neither of which seem to make much difference. Yesterday she started on a diuretic to try and get her to wee during the afternoon and not at night, didn't make much difference last night.
 

NickyK

New member
Nov 24, 2020
5
0
My Mum used to be exactly the same - up 5 or 6 times a night to go to the loo - and I found it very wearing. I'm afraid we resorted to drugs (for Mum, not me!) and that has helped enormously.
I firmly believe that Mum wasn't waking up wanting to go to the loo, rather woke up, and then decided she might as well go as she was awake. There is a trade off against a potentially increased fall risk, but I always felt that getting up half a dozen times a night was already adding to her risks. Speak to her GP .

Lollyc - could I ask what drugs your mum is on ? There seem to be several approaches, with the fall risk being the main concern of sedatives. Interesting to know which drug route your mum has gone down!
 

NickyK

New member
Nov 24, 2020
5
0
There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. You have now reached that point. Your mother needs a whole team looking after her 24/7 in a care home setting. Your situation is simply not tenable without 2 live in carers which will probably be more expensive than a care home. I'm sure that's not what you want to hear.
It's not what we want to hear, but probably is what we need to hear. As you all know, care involves guilt and the feeling that we are 'abandoning' her in a care home, especially when we can't visit, is horrible. On her own it would be easier, but having to consider my mentally alert father makes it all that much harder.
 

Thethirdmrsc

Registered User
Apr 4, 2018
258
0
Hi @NickyK my OH was on Mertazapine but that sort of wore off, and also made him spit a lot, yuck! But didn’t help him sleep. He is now on memantine, but is still up sometimes 8-9 times a night, because as others mentioned, he wakes up and forgets he has been to the loo so assumes he needs to go again, or he has a dream that he has wet the bed. It is wearing, but he is calmer, so it’s a compromise. My Doc has just prescribed Tomazapam, so I am hoping this will help, and I also give him occasional diazepam if he gets too agitated in the night. I never knew there were so many drugs!
 

jennifer1967

Registered User
Mar 15, 2020
2,288
0
Southampton
a carer cant be up a lot of the night and expect to be able to carry on. carer may make mistakes or very easily become ill herself as her immunity goes down due to tiredness. what happens if she became ill and had to take time off. who would look after your mum then? it will be hard on your dad and if you are not self-funding, then he wont get the money to support a care home place. it can work with both going to the same home. then was a wife last week on the news who couldnt live without her husband[ who had dementia] so moved in with him. she didnt have dementia just couldnt live without him. its worth considering
 

lollyc

Registered User
Sep 9, 2020
162
0
Lollyc - could I ask what drugs your mum is on ? There seem to be several approaches, with the fall risk being the main concern of sedatives. Interesting to know which drug route your mum has gone down!
She takes Mirtazapine 30mg, Quetiapine 25mg, plus Lorazepam 1mg, if required. We also tried Zopiclone and Amytryptiline. Some made her quite dopey in the morning, and at that point she was going to clubs etc., where she needed to be up and ready fairly early. That's not a problem any longer, as we can't go anywhere!
 

NickyK

New member
Nov 24, 2020
5
0
She takes Mirtazapine 30mg, Quetiapine 25mg, plus Lorazepam 1mg, if required. We also tried Zopiclone and Amytryptiline. Some made her quite dopey in the morning, and at that point she was going to clubs etc., where she needed to be up and ready fairly early. That's not a problem any longer, as we can't go anywhere!
Thank you! That's really helpful.
 

Bod

Registered User
Aug 30, 2013
1,389
0
Beware Zopiclone!
It is only a short term medication, use for less than 14 days.
The idea is to encourage sleepyness, not to make sleep.
A person can fight off the effects, so it does not work, raising the dose, will cause falls, and make the person very drowsy the next morning.
Our GP had prescribed it for FiL, long term, hence the warning, took us a time to realise what the problem was.

Bod
 

love.dad.but..

Registered User
Jan 16, 2014
4,748
0
Kent
My experience for dad in his care home was exactly as @Bod describes and I pushed for it to be stopped immediately as dad was having increasing falls causing facial injuries and that falls is a risk associated with zoplicone and dementia. That is one of the reasons when I looked after night time pacing dad in his home his gp was reluctant to prescribe anything which I accepted. Even though I had health power of attorney and wasn't informed the home asked the GP to prescribe but it made no difference he still didn't sleep and was at higher risk of more falls which were already starting, common for some with dementia
 

Brizzle

Registered User
Mar 1, 2019
18
0
There is a lot of information on this forum about whether social services will fund “live in care”. Most people seem to suggest that there is a blanket approach that no more than “ so many day visits “ will be funded. After paying privately for nearly a year for 24 hour live in care and reaching the higher threshold savings limit social services have agreed to help fund my mother’s future care at home. Yes we have had to change care provider due to budgets but my mother is sill able ,for the time being at least, to stay in her own home. Social services have a “duty of care” to each individual and if it is clear that a move to a residential care home would have a negative impact on your loved ones mental and physical wellbeing they should do everything within their powers to make sure that your loved one remains at home. Just trying to put things into true perspective, do not be put off by “negative” comments about your chances of getting funded live in care when funded live in care is the morally right choice that social services should make. Do not be bullied by social services if you truly know your loved one would suffer detrimentally by moving to a care home ... remember first and foremost they have a duty of care to do what is RIGHT for the individual.
 

Banjomansmate

Registered User
Jan 13, 2019
2,555
0
Dorset
SS talked about “live in care” for The Banjoman but
a) there was no room for anybody to stay in his flat
b) he could well be up and about half the night
c) he was already getting stroppy with the carers coming in to get him ready for bed and would have hated somebody there full time........
so the family all agreed that we didn’t like that idea.

As far as I could work out it would have been far more expensive than residential care anyway.
 

canary

Registered User
Feb 25, 2014
14,631
0
South coast
Hello @ Bizzle and welcome to DTP.
Im glad you have found care that suits your mother

After paying privately for nearly a year for 24 hour live in care and reaching the higher threshold savings limit social services have agreed to help fund my mother’s future care at home

I noticed the bit that I have put into bold.
Yes, you can purchase care over and above the ammount that Social Services will fund and you can certainly use Local Authority funding towards live in care, but unless there are very exceptional circumstances (which I expect will become more and more rare as the Local Authority has less funding) Social Services will not fully fund 24 hr live-in care.
 

Rosettastone57

Registered User
Oct 27, 2016
1,452
0
There is a lot of information on this forum about whether social services will fund “live in care”. Most people seem to suggest that there is a blanket approach that no more than “ so many day visits “ will be funded. After paying privately for nearly a year for 24 hour live in care and reaching the higher threshold savings limit social services have agreed to help fund my mother’s future care at home. Yes we have had to change care provider due to budgets but my mother is sill able ,for the time being at least, to stay in her own home. Social services have a “duty of care” to each individual and if it is clear that a move to a residential care home would have a negative impact on your loved ones mental and physical wellbeing they should do everything within their powers to make sure that your loved one remains at home. Just trying to put things into true perspective, do not be put off by “negative” comments about your chances of getting funded live in care when funded live in care is the morally right choice that social services should make. Do not be bullied by social services if you truly know your loved one would suffer detrimentally by moving to a care home ... remember first and foremost they have a duty of care to do what is RIGHT for the individual.
Members are posting on here with information about their own experiences. I'm afraid that social services will not fully fund 24 hr live in care, which was my experience with my mother in law who lived in an outer London borough .
 

Sarasa

Volunteer Host
Apr 13, 2018
2,506
0
Hi @Brizzle and welcome to Dementia Talking Point. This is a very supportive and helpful community, and I hope you find it useful.
I'm really pleased that social services have agreed to continue to support your mother living at home, but this is not an option that would be right for everyone, and there are plenty of examples here where people have enquired about twenty-four hour care to be told that isn't something their social services department funds.
Yes it would be great if every person got exactly the care they needed from social services, but live in care at home doesn't suit everyone for a variety of reasons. It would have been a disaster for my mother for instance.
If you do think someone has said something on this forum that you feel is misinformation please use the report button, so it can be looked at.
 

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