When do you know it’s the right time ??

[Charie1]

Mum was only diagnosed in April 2018 with AD but has deteriorated quickly since then. My sister and I have tried to manage caring for her between us but Mum spends too much time on her own. She lives in sheltered housing and her anxiety, confusion and distress has become so bad that in the last 3/4 weeks she has barely left her flat. We are in the process of arranging carers to go twice a day 5 days a week. My sister and I can only visit once a week each as we don’t live locally. In the last few days we have started to worry that the carers visits will not be sufficient.
We don’t want to think about the other option but when do you know it’s the right time to start looking at care homes ??? She told me today she’s had enough and can’t go on any longer !!

 

[Rosettastone57]

Mum was only diagnosed in April 2018 with AD but has deteriorated quickly since then. My sister and I have tried to manage caring for her between us but Mum spends too much time on her own. She lives in sheltered housing and her anxiety, confusion and distress has become so bad that in the last 3/4 weeks she has barely left her flat. We are in the process of arranging carers to go twice a day 5 days a week. My sister and I can only visit once a week each as we don’t live locally. In the last few days we have started to worry that the carers visits will not be sufficient.
We don’t want to think about the other option but when do you know it’s the right time to start looking at care homes ??? She told me today she’s had enough and can’t go on any longer !!

My mother-in-law had mixed dementia and had carers in 3 times a day for 3 years. She was self funding and on her own. The tipping point for more supervision which means alternative accommodation was when she could no longer remember where her bathroom was in her own home . By then, she was incontinent and didn't manage to get to the toilet in time. It was when she was simply unsafe in her own home and we were more concerned about what was happening when the carers weren't there

 

[MaNaAk]

I cared for dad for as long as I could before it became too much. I think you should start looking at care homes now. You could put your mum's name down for one or two but it doesn't mean you have to put her in a home until you are absolutely sure you are both pleased with the one you have chosen.

MaNaAk

 

[archiebald]

Hi Charlie 1 its a difficult time for you the stress and worry you will be having about it all will be awfull there is no easy answer is she able to cook wash and dress herself you say she is in sheltered housing do they not have any sort of social centre she could attend has she been assessed by social work they can or could get her into day centres she will deteriorate if on her own most of time and if she is not sleeping she will get more confused my mother in law was 76 when diagnosed with Alzh my Hubby and I both worked full time she lived 10 doors away so we were with her after work and weekends we did not stay overnite as we needed our sleep to go to work we hubby used to go in 6 am git her up then I would go in 8am get her washed dressed fed we got her in day club 4 days week from 10 till 2 so she was only 3 hours till one of us got home I phoned at least 3 times a day just to reassure her she was ok but we had to eventually go down CH route after 2 years as she was wandering she sadly passed away last year age 82 my hubby now has same condition he is 60 diagnosed at 57 I gave up work last year to be his full time carer I dont want to even think about CH I think I am in different position to you as I am with him 24/7 you cant just give up your work you can only do whats best for her and her safety and well being ..take care

 

[Sirena]

Is your mother self-funding, or will she need local authority funding? If the former, you have the choice of when she moves to a care home. If the latter, you have to wait for social services to decide it's necessary.

My mother (self funded) moved to a care home last February. She had carers at home for 18 months - twice a day, for a total of 6 hours a day. She was fine when they were there, but there was a very long time each day when they weren't. It worked well at first but for the last few months she was very anxious when she was alone, and she started wandering - leaving the house without a coat/bag, getting soaked in the rain, having to be brought home and comforted by neighbours. It was obvious she needed constant supervision so I moved her to a care home (that makes it sound easy - it wasn't, but it was doable).

To tell you the positive side to that - she loves it there. The staff are lovely and she has constant company and someone to reassure her and give any help she needs. A care home may seem a negative and drastic step, but it can work out very well.

 

[Juniorjunior]

From my reading of various post here on talking point it seems every one has a different trigger point for considering care home placement, some it is disturbed nights, agitation or aggression, incontinence or breakdown of caring arrangements.
I had always believed I would care for mum at home, very naively. Mum was fine until she wasn't and it happened quickly. I ended up.moving in in the space of one-day. Unfortunately my mum passed away but I was very close to making the heartbreaking decision that I couldn't continue to look after her after a relatively short period of time. I work full time and could have managed to be off for a short period but would have struggled return with mum still at home.
Options for care home placement are also dependent on funding routes. If not self funding speak to social services asap.
Nobody would choose cAre home as an option when fit and well but also nobody would choose dementia and all the anxieties that come with that for person with dementia ortheirloved ones.
May your decision come from love and clarity of need for your mum and you.

 

[elvismad]

I can only echo comments made by @Sirena -see my post 'trying to stay on top of it all'.
Once levels are anxiety are this high, it really is time for constant care. Again my mum only moved to her care home on 4th Jan but seems to be settling well.

 

[Grannie G]

Mum was only diagnosed in April 2018 with AD but has deteriorated quickly since then. My sister and I have tried to manage caring for her between us but Mum spends too much time on her own. She lives in sheltered housing and her anxiety, confusion and distress has become so bad that in the last 3/4 weeks she has barely left her flat. We are in the process of arranging carers to go twice a day 5 days a week. My sister and I can only visit once a week each as we don’t live locally. In the last few days we have started to worry that the carers visits will not be sufficient.
We don’t want to think about the other option but when do you know it’s the right time to start looking at care homes ??? She told me today she’s had enough and can’t go on any longer !!

Hello @Charie1
The whole of your post makes me feel your mother may feel happier, safer and more at ease in residential care.

I know my mother went into residential care at an earlier stage than my husband , simply because her behaviour and demeanour was so similar to your mother`s and I felt desperately sorry for her.

Even though my mother attended day care Monday - Friday she was still on her own all night, mornings and evenings. My husband and I were both working full time and still attended to her before and after work and at the weekends and it still wasn`t enough.

It`s all about meeting your mother`s needs. Do you feel her needs are being met? If not, maybe the time is now right.

Sad but realistic. Your mother is the best today as she will ever be . It`s a painful decision but in her best interests probably one which needs to be made.

 

[Champers]

I’m glad that someone else raised this one as I’m struggling with the same question.

Mother is 87, lives alone - I’m an only child 2 hours away. I have carers going in three times a week (Mon, Wed, Friday) for companionship and to ensure she bothers with food! She has a gardener on Tuesdays and also gets picked up and taken to the hairdresser on Thursdays. The only reason I mention the gardener is she loves to chat to him and make him endless cups of tea and the hairdressing trips out give her a change of scene and as she likes to look smart, help her self esteem.

She’s keeping herself smart, dresses appropriately, keeps the house clean and looks after her cat well.
She’s being assessed for vascular dementia as her short term memory is very poor (awaiting brain scan results) I order her food shopping online as she kept losing cash/debit cards and was buying anything on half price.

My concern is she regularly asks, “when am I going home?” “Whose house is this?” and often tells me that she thinks, “the people who live here must be away as I’ve not seen them for a while.”

Mother doesn’t seem to be a danger to herself and clearly is a lot happier in her own surroundings. Should I just maintain the status quo whilst everything is running ‘fairly’ smoothly?

 

[Sirena]

@Champers it does sound as if she's managing okay at the moment with the support she has.

I lived 2 and a half hours away and it was very difficult to get a true picture of how my mother was managing. I had to rely on the carers who saw her for several hours a day - but again, she was fine when they were there, the concern was when she was alone. In the end it was her neighbours who reported her anxiety and confusion (because she left the house and they had to take her home), and a friend who who told me she shouldn't be alone any more. I think you will know when the point comes - there will be increasing 'incidents' which concern you, whether it's falls, or setting off smoke alarms, or wandering. I also found speaking to my mother on the phone increasingly difficult, there was no chance of a conversation and often she could not even follow a request to hand the phone to the carer. By that point, it was evident she needed more supervision.

 

[Witzend]

To me it's when someone now needs more or,less 24/7 care and supervision - i.e someone there for them all day, all night, 365 days a year - and when that level of care can't be provided any other way.
To be honest it does sound as if you've reached that point.

 

[Allym]

Hi
we put B in a home 2 years ago, after when she wandered out of the house, got lost and we had to call the police for the 2nd time.
For us it was the best decision we made, we worry less as she has around the clock care, secure environment, and carers that know how to deal with her behaivour, they have taught us so much in how to deal with her anger when she starts having a "moment" as we call it,
We showed her all the homes we liked to make her feel like she was simply moving to a new house and it was solely her decision where she went.
since she has got considerably worse we are really glad we had already moved her, as to move her now would have been too much, especially with her continued anger and mood swings.

…. however, having said all this I need to make 2 points, B is currently self funded and in a fantastic care home which is not cheap paid for by the sale of her house, she was originally in a emergency care home paid for by the council for 4 months before all the financial stuff was sorted out, and this care home was not as good and they were not set up for dementia in the way Bs current home is. she deteriorated a lot in these 4 months whether this was the home and the change in environment or just the dementia and new meds kicking in we will never know. So finding the right care home is essential, and if you put them in too early then the money might run out quicker, we think we have approx. another 2 years before the money runs out, after this time we pray and hope we can stay in the same care home, but I highly doubt it. The only downside for us is that B is 60 and everyone else in the home is a lot older so she doesn't talk to anyone (although this is obviously mainly because of the dementia)

 

[Annier999]

Mum was only diagnosed in April 2018 with AD but has deteriorated quickly since then. My sister and I have tried to manage caring for her between us but Mum spends too much time on her own. She lives in sheltered housing and her anxiety, confusion and distress has become so bad that in the last 3/4 weeks she has barely left her flat. We are in the process of arranging carers to go twice a day 5 days a week. My sister and I can only visit once a week each as we don’t live locally. In the last few days we have started to worry that the carers visits will not be sufficient.
We don’t want to think about the other option but when do you know it’s the right time to start looking at care homes ??? She told me today she’s had enough and can’t go on any longer !!

Could you consider live-in care? Lots of companies offer this as an alternative to care homes.

 

[yak55]

Mum was only diagnosed in April 2018 with AD but has deteriorated quickly since then. My sister and I have tried to manage caring for her between us but Mum spends too much time on her own. She lives in sheltered housing and her anxiety, confusion and distress has become so bad that in the last 3/4 weeks she has barely left her flat. We are in the process of arranging carers to go twice a day 5 days a week. My sister and I can only visit once a week each as we don’t live locally. In the last few days we have started to worry that the carers visits will not be sufficient.
We don’t want to think about the other option but when do you know it’s the right time to start looking at care homes ??? She told me today she’s had enough and can’t go on any longer !!

Hi, my mum is in a care home and I know now that it was the right thing to do, believe me when I say that it broke my heart but it was the best thing for Mum, she is now safe and well cared for and is not alone.
I now have my mum back and enjoy my visits with her as her daughter not her carer.
I hope that helps ? x

 

[Charie1]

Thank you everyone for all your comments. Mum is self funding for now but with limited funds. I suppose all the comments have read confirmed what deep down I really knew. She spends most days on her own for most of the day and night. Although she still washes, cleans and cares for herself it’s the anxiety and distress she’s in on a daily basis that is our main concern. Because she’s only had her diagnosis since April last year we are still trying to get everything sorted. We need to get a social worker and start looking at CH asap.
Thanks again for your comments, it’s only people who have been or are in our situation that really understand. I only say this as we’ve had some very difficult conversations with friends and family who hardly ever see or speak to Mum but keep giving her “advice” !!!!

 

[Charie1]

Hi, my mum is in a care home and I know now that it was the right thing to do, believe me when I say that it broke my heart but it was the best thing for Mum, she is now safe and well cared for and is not alone.
I now have my mum back and enjoy my visits with her as her daughter not her carer.
I hope that helps ? x

Hi I think I know that’s what Mum needs too. She spends far too much time on her own but I guess I’m dreading making that decision. And yes all the comments have helped just by knowing my feelings are normal x

 

[Zola]

Hi. The decision can feel overwhelming and is so hard. My father was diagnosed 5 years ago and the decline has been quite gradual but much more in the last year. He was in sheltered accommodation with my mum and had excellent care. In addition he went to a day service twice weekly and had a befriender twice weekly. But in the end his anxiety was too much for mum to deal with and whatever support we put in place, it just was no5 enough.One of the best things we did was try respite first. It was hard to go through with it but gave us a really good picture of how things would be. When he returned home- within no time at all he had no recollection of having been away, so we knew we could do it again with no ill effects. He has now gone in permanently but the respite gave us a good insight into whether the home was right. We learnt lots! I realise that opportunities are very different depending on whether your mum is self funding. I so feel your pain of being so torn. That is exactly how I was only a short time ago but now he is there, I know it’s right- and my visits feel much more like quality time rather than dreading what he may be like. Good luck!

 

[yak55]

Hi I think I know that’s what Mum needs too. She spends far too much time on her own but I guess I’m dreading making that decision. And yes all the comments have helped just by knowing my feelings are normal x

It's so hard and I feel for you I truly do x