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Too early for care home?

Rosettastone57

Registered User
Oct 27, 2016
1,395
Hi. thanks. Can i ask the same question i asked another poster please and sorry if its a stupid one. but what is it about the content of my post that makes the care home just around the corner.
Based on my personal experience with my mother in law, the escalating hallucinations you mentioned was one of the tipping points for her to go into care. You could start with carers which my mother in law had, but it got to the point where these visits weren't enough and she became agitated at night constantly phoning and disturbing the household. The delusions became such that police were called about strangers in her house. Of course your mother might not have the same behaviour. The carer visits were time constrained obviously and my mother in law couldn't be left for long periods. She needed 24/7 supervision in a care home setting.
 

Lynmax

Registered User
Nov 1, 2016
590
I agree with other posters . I think a care home is just around the corner . If you wait for a person with dementia to see your point of view or agree with you, you will wait forever. I never discussed the care home with my mother in law, I just arranged it. She was self funding and refused point blank to go into a home. So we waited for a crisis. She became ill and went into hospital and we arranged full time care for her. She went straight into the care home from hospital and never returned to her own home.
Exactly what we did, we were reaching the point where we could not support mum to live on her own any longer when lockdown began and Mum had a fall which needed hospital intervention. We made it clear to the doctors that it was unsafe for mum to be discharged to her home as we were not able to provide enough support. Luckily they agreed and Mum was finally discharged to a care home that we chose and at a Best Interest Meeting with SS, it was agreed that it would become permanent.

So, despite mums lack of understanding about her need for support, we were able to move her to the best place to keep her safe without any problems getting her to agree to the move - a short ambulance journey and that was it!
 

imthedaughter

Registered User
Apr 3, 2019
518
I was in a similar situation to you in 2018 when my dad had to move out of the family home. At that point we didn't know there was much wrong, although he said to me his brain wasn't working properly, I told him to go to the Dr if he was worried. I knew he was stressed about the move and would be trying to think of any excuse to not move but the house had been sold. At the time my younger brother was living with him so I took his view on it and he said dad was being difficult but wasn't unwell.

Dad was able to organise a move into assisted living, albeit not very well - we have lost all our family photos, items of sentimental value and almost all furniture as he only got one van to move and took mostly rubbish. We agreed that assisted living would be helpful as we felt it was too early for full time care. However I then started getting phone calls - dad tried to go back to the house, dad didn't pay the removal man, dad hadn't paid his rent, dad was wandering, dad has lost his car, dad can't use his mobile phone, dad has been banned from the canteen.

We went to see dad at Christmas and he was living out of bin bags with newspaper spread over the bed and in the bathroom on the floor, and the place was filthy. Not a total surprise as dad has always lived in chaos and never cleaned anything. He'd forgotten we were coming. My poor nephew was shocked. Social services assured me he was fine. I disagreed.
I sent in a care agency and the woman from it called me, horrified at dad's state of living and the fact he'd not eaten that day due to the canteen issue.

Shortly after that he was served an eviction notice by the assisted living facility and with no diagnosis he was taken into respite to do some tests.

I later found him a self funded place at the same home and moved him in. At the time dad was still going out and it felt like using a sledgehammer to crack a nut but dad of course has only got worse and only a little over a year later he has been assessed as needing the highest level of care by the local authority and diagnosed with mixed dementia.

Dad used to go out into town and to the shop and so on but now he's fully in his own world and shows little interest in going out except for when frantic with delusions about his car, which was crushed long ago.

That was long, sorry, but my experience is that it's hard to know how bad it truly is and in general it's easier to get into the home early, even earlier than you think is necessary and have the decline supervised, especially if like me you aren't close by. You can come and go at homes and they should aim to maintain independence as long as possible.
 

Sky1

Registered User
Aug 30, 2020
34
Thank you so much for your response. These 'long' posts are incredibly useful as it helps me (and others I'm sure) to think differently about where Mum is and where she may be soon.

I'm struggling with the variability across the day and days. I know that's part of the condition.

But it just means sometimes i think the thought of Mum going into residential care is premature (she does seems remarkably well and fully functioning and able to cope / live without the restrictions that i know she would / will hate)

and then other times, often within the same hour or day, I'm convinced she needs supervision for her safety.

For example, I spoke to her last evening and she has spent quite some time watching a man outside who she wondered if he was coming to see her / home for tea (there is no man).

Dr thinks Olanzapine might / will alleviate these symptoms - what's your / TP's view on this medication?

Does it help to the extent that Mum would be able to live independently?

Thanks again, SKy1


I was in a similar situation to you in 2018 when my dad had to move out of the family home. At that point we didn't know there was much wrong, although he said to me his brain wasn't working properly, I told him to go to the Dr if he was worried. I knew he was stressed about the move and would be trying to think of any excuse to not move but the house had been sold. At the time my younger brother was living with him so I took his view on it and he said dad was being difficult but wasn't unwell.

Dad was able to organise a move into assisted living, albeit not very well - we have lost all our family photos, items of sentimental value and almost all furniture as he only got one van to move and took mostly rubbish. We agreed that assisted living would be helpful as we felt it was too early for full time care. However I then started getting phone calls - dad tried to go back to the house, dad didn't pay the removal man, dad hadn't paid his rent, dad was wandering, dad has lost his car, dad can't use his mobile phone, dad has been banned from the canteen.

We went to see dad at Christmas and he was living out of bin bags with newspaper spread over the bed and in the bathroom on the floor, and the place was filthy. Not a total surprise as dad has always lived in chaos and never cleaned anything. He'd forgotten we were coming. My poor nephew was shocked. Social services assured me he was fine. I disagreed.
I sent in a care agency and the woman from it called me, horrified at dad's state of living and the fact he'd not eaten that day due to the canteen issue.

Shortly after that he was served an eviction notice by the assisted living facility and with no diagnosis he was taken into respite to do some tests.

I later found him a self funded place at the same home and moved him in. At the time dad was still going out and it felt like using a sledgehammer to crack a nut but dad of course has only got worse and only a little over a year later he has been assessed as needing the highest level of care by the local authority and diagnosed with mixed dementia.

Dad used to go out into town and to the shop and so on but now he's fully in his own world and shows little interest in going out except for when frantic with delusions about his car, which was crushed long ago.

That was long, sorry, but my experience is that it's hard to know how bad it truly is and in general it's easier to get into the home early, even earlier than you think is necessary and have the decline supervised, especially if like me you aren't close by. You can come and go at homes and they should aim to maintain independence as long as possible.
 

Sirena

Registered User
Feb 27, 2018
2,294
I think the main problem is that unless you live with the person, you are not aware of how badly things have gone awry, because they are able to conceal it. Generally they are keen to tell you they are coping fine, because they don't know that they aren't. It would be upsetting for all concerned if she moved to sheltered housing, only to need to have to quickly move on again to a care home.

You also need to fully investigate what help sheltered housing would offer. You say she is not eating properly, so she needs to be supervised at mealtimes (she probably also needs to be encouraged to drink enough so she isn't dehydrated). There is no alternative to in-person supervision, just 'reminding' them won't help in my experience.

Could you or a relative stay with your mum for a few days (or have her to stay with you) so you can see the real extent of the problems, and the exact sort of help she needs?
 

Sky1

Registered User
Aug 30, 2020
34
Thanks again Sirena.

I stayed with Mum for a few days earlier this week. The problems vary from hour to hour! Sometimes I'm sure she'll be OK in her own flat with support. Other times, i'm convinced she won't be.

Regarding food, Mum's been eating buffet type food and microwaved meals. ..... not ideal

BUT I've just coming off a call with her and she can't work the microwave now. Despite 45 mins of my explaining. I've said that we need to get some help for her, but she's said no that she can wait for me to help.

Having read many other posts on here, i know this is mild compared to the problems you are all having, but this is just so upsetting. Seeing / hearing your Mum drifting away and losing herself ...


I think the main problem is that unless you live with the person, you are not aware of how badly things have gone awry, because they are able to conceal it. Generally they are keen to tell you they are coping fine, because they don't know that they aren't. It would be upsetting for all concerned if she moved to sheltered housing, only to need to have to quickly move on again to a care home.

You also need to fully investigate what help sheltered housing would offer. You say she is not eating properly, so she needs to be supervised at mealtimes (she probably also needs to be encouraged to drink enough so she isn't dehydrated). There is no alternative to in-person supervision, just 'reminding' them won't help in my experience.

Could you or a relative stay with your mum for a few days (or have her to stay with you) so you can see the real extent of the problems, and the exact sort of help she needs?
 

Rosettastone57

Registered User
Oct 27, 2016
1,395
Hi @Sky1 you could try some outside help such as carers to at least prepare your mother some meals. I'm afraid the problem with the microwave is all too familiar to me. I arranged carers to come in at lunchtime to heat up meals in the microwave for my mother in law and to sit with her whilst she ate . The default answer to suggesting help is always going to be no. So I just organised it whether my mother in law liked it or not. We had no other family to help with mother in law and although my husband and I lived about 10 minutes away, we were never going to be hand on carers. Your mum will never understand the logic and reasoning of you not always being on hand to help. We had calls similar to the microwave as she lost the capacity to use the telephone or use the washing machine. Once one problem was solved it wasn't long before another one came up , we just felt we were firefighting eventually from one crisis to another. As I said in a previous post, she just couldn't be left on her own and needed prompting with every action from drinking and changing her clothes. The carers were hired to help with personal care but she refused this as she could wash herself of sorts. But her hair wasn't washed for 3 years whilst she was at home with carers. Of course, as far as she was concerned there was nothing wrong with her. My husband recognised that she needed to be in care , but he was not willing to dupe her out as she refused to point blank leave the house , not even to visit us.

We waited for a crisis which came in the heatwave of 2018 , when she became dehydrated and went into hospital. We arranged a care home from then and she went straight from hospital to the home, never returning to her own house.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
Sometimes I'm sure she'll be OK in her own flat with support. Other times, i'm convinced she won't be.
The thing is, if she is already at the stage where there are times when you know she wont be OK, these times are only going to get longer and more frequent.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,006
High Peak
The microwave problem will be followed by similar issues with the TV, cooker, phone, central heating, etc.

My mum bought umpteen new appliances because hers 'did not work' before we twigged what was happening. She blew up one microwave.

You've spent 45 mins on the phone trying to explain how to do it. (Been there, done that.) She didn't get it and she probably never will again. What if she puts something metal in there and sets it for an hour and a half? (Probably what my mum did.)

She's talking to a non-existent man outside the front door. What if she goes off with him or goes looking for him. To her he is very real.

Your mum is in danger in many ways now. Yes, she has good days (or shorter periods) and can mostly manage... But things are changing. Please put more care in place and/or start looking for a care home. (The trouble with carers at home is that they are not there at night and that's often when a person with dementia is at their most confused/lonely/anxious.) Put her name down - you don't have to take a place if it is offered too soon. Better to be ready for a crisis than have to find somewhere in an emergency. Your mum will never agree (after all, she probably thinks nothing is wrong with her) so don't put that into the equation. Your role is to keep her safe (if you can) and you can't be with her 24/7. It sounds like she needs that now, or will very soon.
 

Sky1

Registered User
Aug 30, 2020
34
Thank you @Jaded'n'faded - not an easy post to read, but thank you - needed saying.

From conversations I had with Mum's psych nurse last week, the Dr is planning to visit Mum tomorrow to discuss and / or assess things.

I'll then have a call with the Dr. I hope to get a fuller picture of diagnosis (type of dementia) and next steps.

i've made enquiries re carers visiting Mum at home and for residential home near me.

Thanks again

The microwave problem will be followed by similar issues with the TV, cooker, phone, central heating, etc.

My mum bought umpteen new appliances because hers 'did not work' before we twigged what was happening. She blew up one microwave.

You've spent 45 mins on the phone trying to explain how to do it. (Been there, done that.) She didn't get it and she probably never will again. What if she puts something metal in there and sets it for an hour and a half? (Probably what my mum did.)

She's talking to a non-existent man outside the front door. What if she goes off with him or goes looking for him. To her he is very real.

Your mum is in danger in many ways now. Yes, she has good days (or shorter periods) and can mostly manage... But things are changing. Please put more care in place and/or start looking for a care home. (The trouble with carers at home is that they are not there at night and that's often when a person with dementia is at their most confused/lonely/anxious.) Put her name down - you don't have to take a place if it is offered too soon. Better to be ready for a crisis than have to find somewhere in an emergency. Your mum will never agree (after all, she probably thinks nothing is wrong with her) so don't put that into the equation. Your role is to keep her safe (if you can) and you can't be with her 24/7. It sounds like she needs that now, or will very soon.
 

Sarasa

Registered User
Apr 13, 2018
2,002
Hi @Sky1, all this sounds so familiar. I had the microwave conversations too, and the problems with washing machines etc. In my mother's case I wasn't sure for a while if it was the dementia or her very poor eyesight that was causing the problems. As time went on, it became more and more obvious it was the dementia.
I'm glad you've got the doctor visiting and that you are starting to look at care homes. The whole covid situation makes things far more complicated as you won't be able to have a proper tour of places and when your mum is there visiting will be more restricted, at least for a while, but it sounds that you need to have a plan in place. My mum was fine till she wasn't, and when things unravel they can go pear shape very quickly.
 

Sky1

Registered User
Aug 30, 2020
34
Thanks again for your responses to my rookie questions.

A tough day yesterday. A day of variation in confusion and general state.

The medics think that Mum has Lewy Body Dementia. From the little I've read, it appears that fluctuation in symptoms is a feature of this type of dementia.

The biggest issue at the moment is the hallucinations and the Dr has prescribed Olanzapine. I've read conflicting comments about this medication and have expressed my concern to the Dr, but this is the recommendation.

The suggestion is that if the medication can alleviate the hallucinations, there'll be more good times/days than bad, at least for now.

It's the variation in Mum's condition that makes the thought of a move to residential care so difficult. Although, I know from your responses here and elsewhere on TP, that it's always difficult.
 

Louise7

Registered User
Mar 25, 2016
2,578
The biggest issue at the moment is the hallucinations and the Dr has prescribed Olanzapine. I've read conflicting comments about this medication and have expressed my concern to the Dr, but this is the recommendation.
@Sky1 Is it the mental health team who have assessed your mum and prescribed Olanzipine? If so then best to give it a try and see how it goes, and it can take some weeks for medication to start working. It is usually a case of trial & error to find the right medication and what doesn't work or causes adverse side effects in some people may work well for others. A few years ago mum (with alzheimer's) was prescribed Olanzipine by the GP but when the mental health team subsequently assessed her they stopped it and prescribed Mirtazapine instead, saying that Olanzipine wasn't something that they would have prescribed for mum. I hope that the medication helps your mum and that she becomes more settled.
 

Sky1

Registered User
Aug 30, 2020
34
Thanks for your reply @Louise7 and for the good wishes.

Yes, it's Mum's Mental Health Dr who has prescribed Olanzapine. Dr said it was low dose and, I think, that it would be short term. As you say, Dr also said that it would likely be trial and error.

Like in your Mum's case, I've read of a lot of people being switched from Olanzapine.

I hope your Mum's getting on well on the new medication.

Thanks again, Sky1

@Sky1 Is it the mental health team who have assessed your mum and prescribed Olanzipine? If so then best to give it a try and see how it goes, and it can take some weeks for medication to start working. It is usually a case of trial & error to find the right medication and what doesn't work or causes adverse side effects in some people may work well for others. A few years ago mum (with alzheimer's) was prescribed Olanzipine by the GP but when the mental health team subsequently assessed her they stopped it and prescribed Mirtazapine instead, saying that Olanzipine wasn't something that they would have prescribed for mum. I hope that the medication helps your mum and that she becomes more settled.
 

Sky1

Registered User
Aug 30, 2020
34
It seems the collective mind of TP was correct. Having spoken to the Dr today, it looks at if residential care is the best option, needed and therefore is coming very soon.

When it comes to my mind, it seems i was wrong. I must've misunderstood. LBD has not been diagnosed, it's just that Mum presents with some symptoms.

I feel stunned and fearful of the next week, few weeks and months.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
I feel stunned and fearful of the next week, few weeks and months.
Of course you are. Moving someone into residential care is a huge step and you will end up second guessing yourself and with not a little guilt.
It really is what your mum needs now, though, and if you continue posting we can help you through the process with support and advice.
xx
 

Sky1

Registered User
Aug 30, 2020
34
Thank you @canary

Reading around recent posts on TP, I am struck by the kindness and strength of this community. it really is something else.

Of course you are. Moving someone into residential care is a huge step and you will end up second guessing yourself and with not a little guilt.
It really is what your mum needs now, though, and if you continue posting we can help you through the process with support and advice.
xx
 

Sirena

Registered User
Feb 27, 2018
2,294
I understand how you feel, as you know many of us have been through the same process of moving a loved one to a care home. I had a feeling of 'has it really come to this' - my mother had been coping with carers at home which allowed a type of normality to continue. When she had to leave her home it was a blunt reminder of how ill she was. And it seemed like a huge mountain to climb - the entire logistics of it, as well as the emotional stresses of course.

We're all here to help whenever you need it.
 

Sarasa

Registered User
Apr 13, 2018
2,002
I felt very much the same @Sky1 . I couldn't believe that my feisty, extremely together mother really needed to be in a care home. She had days when she seemed OK, or at least OK when I spoke to her on the phone or popped over to see her, and then days when she certainly wasn't. In the end she just wasn't safe at home, and a care home was the only option.