Is it time for care home

Jentleyoga

Registered User
Apr 10, 2017
1
0
My mum has vascular dementia ( numerous TIAs plus mobility issues)on the verge of late stage. I care for her in my home with the support of my partner in the evenings. When is it time to say enough is enough. I am really struggling with all the emotions - anger frustration trapped exhaustion anxiety etc etc. We do have some help with cleaning and have just started having a sitter on a wednesday night.
When is the right time to consider a nursing home (she would hate it) Or do I get extra care in . Is there anyone I can talk to about options. She has no regular medical support - I feel like they have written her off. Thank you
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Hi @Jentleyoga
When is a care Home needed?
When care usually supplied by one or two is not enough
My husband had to go into emergency respite when I was ill, when I said ok he can come home the care Home staff said don’t be silly it’s taking all of us to look after him, you cannot do this on your own.
No one wants this but sometimes it has to be so.
 

Tin

Registered User
May 18, 2014
4,820
0
UK
Sounds like you are getting very close to making that decision, is the dementia causing a rift between you and your partner? that would make me look at care homes, but I do not have a partner, just mum and I and a lot of support from friends. I can only think that on here would be one place to discuss options.

My own journey with dementia is ongoing and I have asked myself the same question, but at the moment I am coping. Thinking ahead I have decided that when the time comes I will try extra help in my home. It has been hard, but what has made it easier for me is that mum is most nights, finally sleeping through and her manic restlessness has calmed down, although she is still restless and her mobility can cause falls.. She is no longer taking any specific medication, but we have regular visits to gp for various other things.

So all fine at the moment, but who knows, next week may be the time I get extra help and the care home will be my last option. Our limits and how far we carry on varies, a friend of mine has decided to place her father in a care home because of his incontinence, she felt that she could not carry on.
 

yak55

Registered User
Jun 15, 2015
616
0
My mum has vascular dementia ( numerous TIAs plus mobility issues)on the verge of late stage. I care for her in my home with the support of my partner in the evenings. When is it time to say enough is enough. I am really struggling with all the emotions - anger frustration trapped exhaustion anxiety etc etc. We do have some help with cleaning and have just started having a sitter on a wednesday night.
When is the right time to consider a nursing home (she would hate it) Or do I get extra care in . Is there anyone I can talk to about options. She has no regular medical support - I feel like they have written her off. Thank you
All I can tell you is from my experience and I hope it helps you.
We looked after my mum after my dad died last August in our home, myself and later on on retirement, my husband.
It was difficult, more difficult than we could ever have imagined.
We became different people and our relationship changed from husband and wife to carers 24/7.
We were exhausted.
Mum was becoming bored and needed outside interests. These came in the form of day care at a nearby care home.
My mum, who never really mixed or went to clubs etc, loved it.
My mum who was claustrophobic gladly got on the mini bus that collected her and fetched her back.
Sadly, for us that was not enough. Whatever we did we had to be back in time for her return. The nights were terrible and it was just one long round of focusing on Mum, but not Mum as she was. Mum has Alzheimer's and Alzheimer's has my mum.
Four weeks ago mum went into the care home where the day centre is. We told her she was going on holiday (love lie) and for the first ten days she was fine although not sleeping still. The care home have been brilliant, they've sorted out mums meds and for the last week she has been sleeping, she is on a tablet to help her anxiety, not a sleeping tablet. She looks well and rested. After the ten days she did get tearful on visits and wanted to come home but that passed. She joins in with all of the activities and there are photos to prove it. Yes, she wanders but that is the nature of the beast. She's safe, warm and fed. She asks where my dad is, when is she coming home etc and this is where my love lies come into play.
My mum always said to me over the years that she never wanted to go into home and I promised her she wouldn't. Circumstances change. She is on holiday and she's happy as she can be. If we had carried on all three of us we would have all become ill and then be no good to anyone.
I'm not saying it's easy, it's not and the guilt and worry is always there but all you can do is your best.
You have a right to your life too. Good luck x
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
It is often said here on TP that each carer has their line in the sand when they reach the point of not managing, coping or wanting to do it anymore. Sometimes it is because of carer breakdown, a change in challenging behaviour or the increasing needs of the pwd not being met no matter how willing the carer is to continue or simply a sudden crisis. Sometimes it is when the question is having to be asked that the time has arrived. For me with my dad..it was a combination of circumstances and his challenges. I lived with dad for 10 months after mum died suddenly, he was up pacing all night, tried live in carers which was unsuccessful and very patient OH was diagnosed with an incurable illness requiring treatment and my support. So I had arrived very reluctantly at the time for 24/7 expertise for dad in a nursing home.
 

Perfectdaughter

Registered User
Sep 25, 2014
29
0
London
[QUOTE=When is the right time to consider a nursing home (she would hate it) Or do I get extra care in . Is there anyone I can talk to about options. She has no regular medical support - I feel like they have written her off. Thank you.

TP is a good place to talk about options if you cannot get support from your GP or local health/social services.

Everyone’s experience of dementia is different and you know your mother best. My father is in his 90s, with vascular dementia and Alzheimers. I have tried to keep him in his own home (what he wanted) for as long as possible. His GP drew up an ‘anticipatory care plan’ for my father and registered him with the local hospice at home palliative care team, but made it very clear to me that he is not responsible for ‘social care’. For the past two years my father has been looked after by wonderful live-in carers (we are self funded) but this year his dementia has taken a big step down. The carers are coping but on the bad days it is a struggle and I worry about what will happen if either of the carers leaves. Last month I reluctantly started to consider nursing homes and have found a good place. This has reassured me, but I don’t feel ready to commit him to the upheaval from all that is familiar, at least not yet. I am currently looking with his carers at the interim option of bringing in extra care help to support them in keeping him at home for a bit longer. The nursing home will be the insurance policy for when, as you say, 'enough is enough'.

I wish you well with your decision. It is difficult.
 

Dorsetgirl

New member
Mar 5, 2018
2
0
Hi @Jentleyoga

I fully appreciate that everyone's experience and circumstances are different but I hope by telling you mine it goes some way to making you feel a bit better about your decision. I also send you all my best wishes as I know what an incredibly hard time this is. This is my first time back on the Talking Point site since before my mum went into a care home (two years ago now). I had to stop participating in this site because I was so overwhelmed with negative emotions and I felt so ashamed and embarrassed to be feeling such anger and resentment for someone I loved so much (my mum) so I wanted to go away and hide those feelings despite the incredible love and support this site gives. Essentially my three sisters and I had been trying to cope with mum's descent into dementia and, as a family, we had always sworn that we'd never put her in a home. My beloved mum, who had been such a wonderful mum, became so difficult to deal with that it brought myself and my three strong sisters to our knees. We felt depressed, overwhelmed and I have to confess even suicidal. We struggled on for ages and even began to have arguments amongst ourselves which was previously unheard of. I felt my sisters didn't understand my feelings and it nearly broke us all apart. Eventually, two years ago, we bit the bullet and found a care home for mum and, whilst it was heart-breaking initially, we haven't looked back. I can honestly say that mum has faired really well in the home. I'm not denying there were (and still are) times when she says she doesn't want to be there BUT on the whole (and I really mean this) she is much happier because of the routine and security and above all dignity of living in a safe environment. Overall it's a wonderful place but we are still very hands on as a family and make sure mum has everything she needs etc etc. If possible, and no disrespect intended, I think it's a good idea to always keep an eye on the home and the care that is being given. My sisters and I would never ever have thought that a care home would end up being the best place for our beloved mum but I can truly say that is the case. My sisters and I have got our lives and our sanity back and pretty much just about saved ourselves from all having a nervous breakdown. To this day I still suffer from anxiety attacks and I can burst into tears at any given moment but that is largely due to the fact that I love and miss my mum so much (that is, I miss the mum she used to be). So, I would like to say to you that even though you think your mum would hate it and even though it may take her a little while to settle in I can honestly say that my mum has ultimately faired better than when we were trying to look after her. We were so exhausted by her behaviour etc that it was hard to love her. Now she gets four devoted daughters who visit her virtually seven days a week and we know she is safe. Dementia is a cruel, cruel disease and has caused so much grief in our family but us girls can now say to ourselves that we think we have done the best for our mum who we love with all our hearts. Good luck and please know that any feelings of despair, grief etc etc are all just part of this very difficult journey. I wish you the very best. xx
 

Dorsetgirl

New member
Mar 5, 2018
2
0
My mum has vascular dementia ( numerous TIAs plus mobility issues)on the verge of late stage. I care for her in my home with the support of my partner in the evenings. When is it time to say enough is enough. I am really struggling with all the emotions - anger frustration trapped exhaustion anxiety etc etc. We do have some help with cleaning and have just started having a sitter on a wednesday night.
When is the right time to consider a nursing home (she would hate it) Or do I get extra care in . Is there anyone I can talk to about options. She has no regular medical support - I feel like they have written her off. Thank you
All I can tell you is from my experience and I hope it helps you.
We looked after my mum after my dad died last August in our home, myself and later on on retirement, my husband.
It was difficult, more difficult than we could ever have imagined.
We became different people and our relationship changed from husband and wife to carers 24/7.
We were exhausted.
Mum was becoming bored and needed outside interests. These came in the form of day care at a nearby care home.
My mum, who never really mixed or went to clubs etc, loved it.
My mum who was claustrophobic gladly got on the mini bus that collected her and fetched her back.
Sadly, for us that was not enough. Whatever we did we had to be back in time for her return. The nights were terrible and it was just one long round of focusing on Mum, but not Mum as she was. Mum has Alzheimer's and Alzheimer's has my mum.
Four weeks ago mum went into the care home where the day centre is. We told her she was going on holiday (love lie) and for the first ten days she was fine although not sleeping still. The care home have been brilliant, they've sorted out mums meds and for the last week she has been sleeping, she is on a tablet to help her anxiety, not a sleeping tablet. She looks well and rested. After the ten days she did get tearful on visits and wanted to come home but that passed. She joins in with all of the activities and there are photos to prove it. Yes, she wanders but that is the nature of the beast. She's safe, warm and fed. She asks where my dad is, when is she coming home etc and this is where my love lies come into play.
My mum always said to me over the years that she never wanted to go into home and I promised her she wouldn't. Circumstances change. She is on holiday and she's happy as she can be. If we had carried on all three of us we would have all become ill and then be no good to anyone.
I'm not saying it's easy, it's not and the guilt and worry is always there but all you can do is your best.
You have a right to your life too. Good luck x

I've just replied to @Jentleyoga and then I read your reply. My family's situation sounds a bit similar to yours and I wanted to send you much love and best wishes and to say that you have done the best by your mum. "Love lies" are necessary at times and they come from love so they must be ok! Caring for a parent with Alzheimers has been the most difficult thing I've ever had to do, it very nearly broke me. My mum still (two years of being in a care home) wants to come home with us at times but largely she is very happy there. I had to come to terms with the fact that a person with Alzheimers isn't always happy no matter where they are so as long as they are safe, cared for and treated with dignity, all that comes before "happiness". All the best x
 

yak55

Registered User
Jun 15, 2015
616
0
I've just replied to @Jentleyoga and then I read your reply. My family's situation sounds a bit similar to yours and I wanted to send you much love and best wishes and to say that you have done the best by your mum. "Love lies" are necessary at times and they come from love so they must be ok! Caring for a parent with Alzheimers has been the most difficult thing I've ever had to do, it very nearly broke me. My mum still (two years of being in a care home) wants to come home with us at times but largely she is very happy there. I had to come to terms with the fact that a person with Alzheimers isn't always happy no matter where they are so as long as they are safe, cared for and treated with dignity, all that comes before "happiness". All the best x
Thank you and you are so right, we do what we do because we love them x
 

father ted

Registered User
Aug 16, 2010
734
0
London
jentleyoga,

When I first started posting on here someone said to me when you ask the question 'when is the time to consider residential care' it is the time to look into it.

Briefly, my Mum was diagnosed 8 years ago and came to live with me, my husband and two children then. After a sticky start all was well for the next few years but bit by bit things became harder. After 7 years I knew something had to give. I cared full time for my disabled daughter who also lives at home and my Mum's increasing demands mean't I had no time to myself. I would put my daughter to bed and help Mum get undressed and help her into bed and come downstairs for an hour or so just to unwind or watch TV but before I had even gone back up to go to bed I would be called for something or another and this would go on throughout the night at hourly intervals. If Mum called it would wake my husband, who had to go to work in the morning but he would offer to go into Mum but I knew she would not like this so I would always go. Towards the end of Mum's time at home with us I was averaging about 3 hours sleep a night. I was sad, tearful, resentful and moody.
I started to visit local homes and found one. Fortunately Mum on the day put up no resistance.
She has been there 8 weeks. She now sleeps through the night and so do I.
She eats better and so do I.
She is happier and so am I.
She has company all day and I have started a couple of courses and meet up with friends.
Whilst Mum was here we did have sitters so me and husband could go out but it was always plugging gaps and even if I enjoyed a night out, once I returned home I knew I would be up and down all night so even extra care does not always provide the amount of respite you need.
 

Alibaba80

Registered User
Aug 4, 2017
49
0
Somerset
I feel for you all and find your stories invaluable knowledge. I think I am a way off considering a care home for my mum as she’s only just been diagnosed. The one thing I worry about the most is that you all say you cared for your loved ones before considering a home. I live 180 miles away from my Mum and that isn’t going to change. Moving her closer isn’t an option as I don’t think that would be good for either of us. We have never had a good relationship and although I visit as often as I can it is only once a month at best. So I wonder whether we will need to think of a care home sooner than I would if I lived nearby.
 

DeMartin

Registered User
Jul 4, 2017
711
0
Kent
I feel for you all and find your stories invaluable knowledge. I think I am a way off considering a care home for my mum as she’s only just been diagnosed. The one thing I worry about the most is that you all say you cared for your loved ones before considering a home. I live 180 miles away from my Mum and that isn’t going to change. Moving her closer isn’t an option as I don’t think that would be good for either of us. We have never had a good relationship and although I visit as often as I can it is only once a month at best. So I wonder whether we will need to think of a care home sooner than I would if I lived nearby.
There is no harm in looking around for a local to you home, believe me, doing it in a rush because of a crisis is terribly hard.
Unless you want to travel 180 miles why not nearer you, you can visit as often or as little as you choose, and should your mum fall or suffer another mishap, nearer is easier.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Alibaba, I have also done caring for someone in earlier stages from a diet, but in my case only 100 miles. I was also never close to my mother and went long periods of time (months) without speaking to her or seeing her-until dementia happened. Then it was more frequent trips, then a crisis, and a move into a care home. Now she is a 15 minute drive from me and it's MUCH easier to manage.

I am not saying this is what you will experience, of course, as this is a different journey for everyone and we can't predict the future. If and when the time should come when the physical distance is too much for you, and/or she needs a different living arrangement, then you can consider what would be best for you and for her.

Best wishes.
 

Kazzy2016

Registered User
Mar 5, 2017
42
0
East Anglia
I can say from experience that the decision to use a care home is one of the hardest things you will ever do; admitting that you can no longer cope is also a massively difficult step to take.
Guilt eats away at you afterwards -the "what if I had done things different..."

I am just starting the road back to some semblance of a normai life, I howl over anything and get incredibly guilty.
Everyone has a different final stage of how far we can look after our loved ones - our PWD. The cost to carers mentally and physically can be high and last a long time. Do not think its wrong to get to this stage. Remember to also take care of yourselves.
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
My mum should be going to a care home today. It was a hard decision in some respects but not so hard in others.

We have never had a close relationship either pre dementia & it has been very hard going too when she got diagnosed. She has not been very nice to me or other people so I have cared for her from a distance at times & visited when I can. Once or twice a week but even that wasn’t good enough for my mum. She also went through a stage where I had to block her number calling me as she would ring me constantly & I mean constantly & when I didn’t answer, she would leave nasty messages on my voicemail which I had to delete without listening to them.

We got Social Services in & upped her care package twice & then the crisis happened just before Christmas last year when she got admitted to hospital with a chest infection, then unsafely discharged, she got back home with a carer who luckily was there as my mum suffered a huge seizure & several TIA’s too which sent her straight back to hospital & she has been there ever since.

It would be out of the question to care for her at her bungalow as it would be far too small for us all to live there & we rent & have too little space anyway plus as both me & my fiancé are both self employed & it is chaotic at the best of times so we couldn’t care for my mum & work so we didn’t really have a choice.

Prior to her hospital admission, I would have said that my mum had some capacity but now I would agree with the social worker & nursing staff & agree that she doesn’t have capacity so this would make the decision for you in that in a care home she will be warm, safe, fed - it is a nursing care home so she has that extra factor for the future.

I’m sure she will hate me for putting her in there but it’s tough, she can’t manage at home on her own with the standard 4 x care calls a day & then left on her own at night for 12 hrs at a time. It is the best decision for her & her needs & that is what you need to think about.
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
I feel for you all and find your stories invaluable knowledge. I think I am a way off considering a care home for my mum as she’s only just been diagnosed. The one thing I worry about the most is that you all say you cared for your loved ones before considering a home. I live 180 miles away from my Mum and that isn’t going to change. Moving her closer isn’t an option as I don’t think that would be good for either of us. We have never had a good relationship and although I visit as often as I can it is only once a month at best. So I wonder whether we will need to think of a care home sooner than I would if I lived nearby.

I was a distant carer too and our house was totally unsuitable for mum to move in, so when she became unsafe at home (leaving gas on etc) really a care home near us was the only option. I was driving back and forth every week but even with carers visiting daily it wasn’t enough. We did look at local assisted living/sheltered housing etc but came to the conclusion that this would only work for a short time if at all. There is no reason why you have to take on the full-time caring role personally if it’s not practicable before considering a home. It wasn’t for me. It was so much better for both of us when she moved. Without the hassle of travelling back and trying to co-ordinate everything at a distance I had more time to spend with mum just being with her. She could also see her granddaughter and great grandson far more easily.

It’s interesting to hear about how others have managed the move and can help you consider your options, but everyone’s circumstances are different and only you can decide what will work for you. If the thought has entered your head then it’s the right time to start looking. Like many others on TP, I wish I’d done the move sooner; it would have saved us both a lot of anxiety and stress.
 
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Nandi

Registered User
Mar 20, 2018
28
0
Grimsby
My mum has vascular dementia ( numerous TIAs plus mobility issues)on the verge of late stage. I care for her in my home with the support of my partner in the evenings. When is it time to say enough is enough. I am really struggling with all the emotions - anger frustration trapped exhaustion anxiety etc etc. We do have some help with cleaning and have just started having a sitter on a wednesday night.
When is the right time to consider a nursing home (she would hate it) Or do I get extra care in . Is there anyone I can talk to about options. She has no regular medical support - I feel like they have written her off. Thank you
 

Nandi

Registered User
Mar 20, 2018
28
0
Grimsby
I hear what you are saying I am always anxious watching him all day and listening at night in case he gets up but still thinks he is fine would not yet go in home but have found I.e over driving
last year which was cancelled by me that eventually things are accepted just wait you will know when time is right
 

mjw1304

Registered User
Oct 9, 2017
34
0
We gave mum three months in a care home as we thought it would finish her off and she would hate it. Fast forward six months and she has a new lease of life and is happier than she's been for years. For mum it was a fantastic move and one we almost wish we had done sooner. Our relationship has also improved no end as I no longer feel cross and frustrated about things. Mum and I love each other dearly and she is almost 91 and we are making amazing happy memories xx