When is the right time for residential care? Is there ever a right time?

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
For me, the right time is when the person now needs 24/7 (or very nearly) care and supervision, and it can't realistically be provided any other way. When the person can't safely be left for any length of time, and/or becomes distressed or agitated if left alone.

It can be stressful and exhausting in the extreme to provide this sort of care at home, and IMO nobody should ever be made to feel bad or guilty if they don't feel willing or able to do it.
 

Swimbo

Registered User
May 8, 2016
1
0
Love is not enough

My mum has lived with me and my partner for 4 1/2 years now. I moved her 125 miles away. Mum is almost 87. We have good days and bad days. On the good days, I can cope. On the bad days (when we either have to talk a load of rubbish or she imagines things), I feel depressed and stressed out. I take her out socially, but she never remembers going. She thinks that she doesn't go anywhere! I also employ a carer to take her out twice a week (on a Tuesday to an over 50s afternoon and on a Friday, shopping for an hour). I am almost 60 myself and very aware that this could go on indefinitely. I am also aware that dementia might get to me.... who knows if and when? Lots of friends (and even strangers) say that it is time to look after myself and think about putting mum into residential care. However, this makes me feel so guilty and I know that she wouldn't want to go. The question is, how long do we carry on putting our lives on hold whilst life passes us by? Do I owe her another 10 years or so of my life, by which time I will be almost 70.... Apart from the dementia, she is very physically fit. The doctor checks her bloods, blood pressure, weight etc every 6 months and all are perfect. I now feel (sadly), that moving her in, was the worst decision that I have ever made because I feel so trapped.. Is anyone else in a similar situation? Any advice greatly appreciated.... I am an only child and have no family support whatsoever....

Munchkin, my situation is very similar to yours - I am an only child with no family. It is not my mother, but my husband who has (young-onset) dementia, and I recently made the very difficult decision to put him into care.

I have always thought that no one could care for my husband like I could, because no one loves him like I do - and to some extent, that's true. But I've learned that as this disease progresses, love is simply not enough. My husband needs care at a level I can't provide, however willing the spirit. It may be that your mother is reaching that time too.

You have had some wonderful advice here about starting to research homes. I would also suggest that. My advice would be to find local homes, go to see them, really drill down into their methods, their staffing levels, their plans for the future, their philosophy of care. Good managers are happy to answer all these questions. Check them out on CQC. Look for reviews. Tour the places and observe the residents and staff. See which places might be a good fit for your mother.

I suggest 'local', because that means you can continue to be an important part of your mother's life by visiting often and smoothing the transition. And (as I think someone in this thread suggested) you may find that it actually improves your relationship. A wonderful an unexpected side effect that has come out of my husband's last few months in the care home (which we refer to as our 'pied a terre' :)) is that after seven years of being my darling husband's carer, I now seem to be his wife again. Our visits are almost like dates - I really look forward to seeing him, and because I'm not permanently exhausted, he gets the best of me. I know where this disease inevitably leads, and I want to enjoy what time together we have left.

My heart goes out to you, Munchkin - this disease is so hard on those who love the person living with dementia. And I know your mum may not want to go (my experience of people with dementia is that they really don't like change) but you may find that she actually begins to thrive with constant company and attention.

In the end, of course, you must decide what is best for your mum and you. I know it's not easy. I wish you all the luck in the world. x
 

elizabet

Registered User
Mar 26, 2013
224
0
Southampton
Munchkin.
I can so feel empathy for your situation. The guilt feeling is a huge part of being a "child" looking after a parent. However,
you are entitled to your own life and enjoy some of your retirement years if you are in your 60s. I also am an only child and although my case is different from yours as my mum was living independently until it was obvious she was not coping, and after trying carers going into her house I got her into a care home. Once she was settled there I could enjoy time with her and it strengthened our re3lationship for the remaining months of her life.
Although you have some hours when your mum goes to her clubs etc i wonder if you have been able to have a complete break - a weeks holiday from looking after your Mum and whether you could possibly try her entering a care home for some respite care to give you the chance of a well earned holiday. Also she may like it and decide she may like to stay there . You have the opportunity to have a good look around and investigate all the care homes in your vicinity too before your Mum's conditions gets worse. Hope this is of some help.
Elizabet.
 

Clive T

Registered User
May 4, 2015
24
0
Worcestershire
My family are in that situation too. Mum's a bit over two years in to her Alzheimer's. I'm her main carer, living full-time with her since last autumn. The natural deterioration she's suffering makes things harder and harder. Things have been particularly tough on my brother, who has a debilitating physical illness, and my sister-in-law who collect her from the day centre, sometimes at great inconvenience to themselves. My partner, too, has shown incredible understanding and patience. I've always said that it's not just what I think, the effect everything's having on the rest of the family has to be taken into consideration too.

The only things that are certain are that she's never going to get better and is definitely going to get worse. The time will come when we just know that we've done all we can, and then we'll look at a care home for mum.

It's not a question of off-loading/dumping her. It's a matter of being realistic and honest. There will come a time when we simply cannot give her the level of care she needs. If we allow guilty feelings to keep her at home we actually would not be acting in her best interests.
 

Pammy1109

Registered User
Nov 8, 2015
2
0
Tenterden, Kent
The right time to choose a care home for your loved one...

I have been the sole carer for my 93 year old mum, who has Alzheimer's and Vasular Dementia, for the past 18 months. Just under 12 months ago I split from my partner, gave up my job and moved Ma and I into a rented bungalow which is perfect for us so that I could care properly for her.

Sadly I now feel unable to cope. It has been a heart wrenching decision. I am nearly 65 and my health is beginning to suffer. Although I have an older sister, she does nothing to help me care for Ma and our brother lives in Australia so cannot help even though he really cares and keeps in constant contact with me (which is more than my sister does!)

One thing that has now focused my mind on getting Ma into a decent care home is the fact that I've been told to have her accepted into a self funded place she needs to have a minimum of £100k in the bank!!!!

Putting Ma into care will mean I have to leave our home and rent somewhere for just me and I'll have to get a job as I won't be able to afford to live on just my pension. That's the thanks we get from the "powers that be" for caring for our loved ones
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
One thing that has now focused my mind on getting Ma into a decent care home is the fact that I've been told to have her accepted into a self funded place she needs to have a minimum of £100k in the bank!!!!

Putting Ma into care will mean I have to leave our home and rent somewhere for just me and I'll have to get a job as I won't be able to afford to live on just my pension. That's the thanks we get from the "powers that be" for caring for our loved ones

Hi Pammy. Welcome to TP.

Not sure who told you about the £100k 'requirement'. My mum was self-funding and none of the care homes I looked at ever asked any questions about her savings at all. I have heard since that some homes do ask these questions but please be reassured that there are plenty of excellent places that don't.

And by the way, I couldn't agree more with your last sentence. It does seem a poor recompense when you have potentially 'saved' the state a lot of money by caring. It is one of the reasons why I feel strongly that family members have to think about how the decisions they make affect them and their future lives as well as the needs of the PWD. You have sacrificed so much for your mum, too much perhaps.
 
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Pammy1109

Registered User
Nov 8, 2015
2
0
Tenterden, Kent
Hi Pammy. Welcome to TP.

Not sure who told you about the £100k 'requirement'. My mum was self-funding and none of the care homes I looked at ever asked any questions about her savings at all. I have heard since that some homes do ask these questions but please be reassured that there are plenty of excellent places that don't.

And by the way, I couldn't agree more with your last sentence. It does seem a poor recompense when you have potentially 'saved' the state a lot of money by caring. It is one of the reasons why I feel strongly that family members have to think about how the decisions they make affect them and their future lives as well as the needs of the PWD. You have sacrificed so much for your mum, too much perhaps.

Hi Pickles,

thank you!

Sometimes I feel so alone, especially right now... It was one of the homes I have approached (only two so far and they are the only one that have responded!) that told me Ma has to have a minimum f£100k in the bank, though wnen I said she doesn't have quite that much they said "ok that shouldn't be a problem!" It has cost quite a lot to keep her home with me what with the rent, daycare cost, living expenses and trips out every weekend to stop me and her going "stir crazy" so this has of course dwindled her monetary resources. I realy want a home that won't shove her out to a council run home when her money does run out and they are so expensive it won't take long for that to happen... I wish there was someone I could turn to to help me find the right home :-(

Love Pam
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
Hi Pickles,

thank you!

Sometimes I feel so alone, especially right now... It was one of the homes I have approached (only two so far and they are the only one that have responded!) that told me Ma has to have a minimum f£100k in the bank, though wnen I said she doesn't have quite that much they said "ok that shouldn't be a problem!" It has cost quite a lot to keep her home with me what with the rent, daycare cost, living expenses and trips out every weekend to stop me and her going "stir crazy" so this has of course dwindled her monetary resources. I realy want a home that won't shove her out to a council run home when her money does run out and they are so expensive it won't take long for that to happen... I wish there was someone I could turn to to help me find the right home :-(

Love Pam

My mum's home did tell me that if she had been self-funding for 3yrs or more then when her ££ ran out they guaranteed that they would accept the LA rate whatever it was. So she would never have been at risk of having to move for financial reasons. Sadly she died within a year, so we never had to put it to the test, but it's another question worth asking.

If she is settled well in a home, you also have a good case that it would be very detrimental to move her at a later date. But you never know what's coming along, so based on our experience I would choose the home that is the best fit now and let the future take care of itself. Her needs may change dramatically in a year's time...or they may not.
 

little shettie

Registered User
Nov 10, 2009
221
0
My situation is similar too. I have read all the comments with interest. I cared for both my parents long distance for 8 years. I'm not an only child, have 3 older brothers, but for all intents and purposes I am!! I do it all with little or no help from them. When Dad died 3 years ago, mum could not cope alone but she was not bad enough to go into care. So hubby and I moved her in with us. That was nearly 2 years ago. Mum's 95, is about 7 years into her AZ journey and physically has always been so fit and well. Never took any medication in her life apart from the Aricept after the AZ diagnosis. Mum took a turn for the worse a couple of months ago, her condition has been going steadily into decline for some time but then, she had a meltdown and I had a week of hell where I thought I would go crazy if I didn't get some respite for her. So for the first time ever, respite was arranged and we took mum in to the care home. Was so anxious as to how she'd react as she always said she would never accept going into a home. Basically said she'd die if we put her in one!! Mind you, she said that when we moved her out of her home into ours, and she didn't! Always one for the dramatic at these times!! Anyway, mum was fine, we left her there and actually breathed a sigh of relief at the feeling of freedom we felt. Sounds awful I know but we really did feel like we'd been released from some sort of prison sentence. Six hours later and we're getting a phone call from the home to say mum had fallen and broken her hip!! Now 5 weeks down the line, mum has had her hip operated on, spent 10 days in hospital and is now in an other care home which is looking after her very well. Its lovely, set in nice gardens with a river view, carers are so friendly and loving and we can come and go anytime of the day we like, which for me is a big plus. Mum is really ok in there, and hasn't asked to come home which I am so surprised at. She is in until 10th JUne, but I am really really debating whether it would be best for her to stay in there now. She is more confused, especially with all that's happened to her the last weeks and her mobility could be an issue as she's still struggling with more than a few steps. I felt rundown, old (I'm only 53) and my life was on hold. I love my mum dearly, she's been a wonderful mum to me but I honestly feel I'm at the end of my caring road. Now I feel free, relaxed, less stressed and more able to cope with day to day life. I had to give up my business to care for mum and claimed carers allowance which of course has stopped now shes in respite. So I have zero income at the moment! If mum stays in I can go back to work and back to my life. I always felt so guilty before but seeing how mum is has made me realise I'm important too and the only one will look out for me, is me!
 

looviloo

Registered User
May 3, 2015
463
0
Cheshire
I can relate to, and agree with, so much that's been said in this thread :-/.

There's just one point that occurred to me while reading all the posts though... but please bear in mind that my situation has been a bit different. Previously, dad was living independently with his needs increasing, and I was spending a lot of time running back and forth to help him. Then a fall meant he needed even more care and he moved into a care home. Since then I've been even busier and doing even MORE for him than I was before! The caring hasn't stopped. Just today I did some clothes shopping for him that he asked me for yesterday. Some days I've had dozens of phone calls from him, I now look after all of his finances, visit regularly and so on.

I guess I'm saying that while the guilt of moving a loved one into a care home is understandable, there is still some 'work' involved and the caring goes on. At least, that's what's happened in my case :). Just thought I'd share, as a different way of looking at things :).
 

jorgieporgie

Registered User
Mar 2, 2016
1,982
0
YORKSHIRE
Hi Munchkin,
So many of us can relate to you. I am an only child too and moved Mum in with me two years ago she has VD/AZ. The emotional rollercoaster is horrendous isn't it. Good days you think I will cope and not put them in care, but the bad days you wish you had.
Mum is 86 and I am 57 and you wonder how long this will go on for.
At times I think it was the worst thing I did having her move in with me, but she as been such a wonderful Mother bringing me up on her own as Mum and Dad got divorced whilst I was young, that I feel it is my duty to look after her.
The difference between looking after someone with dementia to just old age or a terminal illness is you can not predict how fast it will take over.
Do not feel guilty for thinking about putting Mum in care because we only want what is best for them and when looking after someone becomes to much and our own heath and welfare is deteriorating then it is time. I am sure I will think the same when the time is right. I pray every night that Mum passing in her sleep so I never have to make this decision, but sadly it is not in our hands. Big hugs sent to you.x
 

little shettie

Registered User
Nov 10, 2009
221
0
Hi Munchkin,
So many of us can relate to you. I am an only child too and moved Mum in with me two years ago she has VD/AZ. The emotional rollercoaster is horrendous isn't it. Good days you think I will cope and not put them in care, but the bad days you wish you had.
Mum is 86 and I am 57 and you wonder how long this will go on for.
At times I think it was the worst thing I did having her move in with me, but she as been such a wonderful Mother bringing me up on her own as Mum and Dad got divorced whilst I was young, that I feel it is my duty to look after her.
The difference between looking after someone with dementia to just old age or a terminal illness is you can not predict how fast it will take over.
Do not feel guilty for thinking about putting Mum in care because we only want what is best for them and when looking after someone becomes to much and our own heath and welfare is deteriorating then it is time. I am sure I will think the same when the time is right. I pray every night that Mum passing in her sleep so I never have to make this decision, but sadly it is not in our hands. Big hugs sent to you.x



So eloquently put jorgieporgie. I feel exactly the same as you. Hugs to you too xx
 

Rosie7

Registered User
Oct 30, 2014
36
0
My mum has lived with me and my partner for 4 1/2 years now. I moved her 125 miles away. Mum is almost 87. We have good days and bad days. On the good days, I can cope. On the bad days (when we either have to talk a load of rubbish or she imagines things), I feel depressed and stressed out. I take her out socially, but she never remembers going. She thinks that she doesn't go anywhere! I also employ a carer to take her out twice a week (on a Tuesday to an over 50s afternoon and on a Friday, shopping for an hour). I am almost 60 myself and very aware that this could go on indefinitely. I am also aware that dementia might get to me.... who knows if and when? Lots of friends (and even strangers) say that it is time to look after myself and think about putting mum into residential care. However, this makes me feel so guilty and I know that she wouldn't want to go. The question is, how long do we carry on putting our lives on hold whilst life passes us by? Do I owe her another 10 years or so of my life, by which time I will be almost 70.... Apart from the dementia, she is very physically fit. The doctor checks her bloods, blood pressure, weight etc every 6 months and all are perfect. I now feel (sadly), that moving her in, was the worst decision that I have ever made because I feel so trapped.. Is anyone else in a similar situation? Any advice greatly appreciated.... I am an only child and have no family support whatsoever....

Hi
I read your post and so much was familiar.Dad moved in with us 21/2 years ago.He's 83 and like your Mum quite fit.Also like your Mum he does not remember any of the things we do with him so as a consequence often feels bored.We are also getting very near to 60.I'm not an only child but am the main person dealing with Dad because of distance.We felt moving away from his home which was 3 hours away was the only thing we could do .At the moment I feel we can cope and just about have some life of our own.We have found a respite place which he has been to twice for short stays.We sell it as being a hotel with help.I think when we get to about 4 years where you are we will have to again .We will probably be retired then I still work part time at the moment.We would hope to be able to have a bit more freedom then.So don't feel guilty about looking for somewhere.My reply probably isn't much help but I really understand how you feel and wish you all the best.
 

Goingitalone

Registered User
Feb 11, 2010
1,684
0
I am sorry to resurrect this thread when this topic has probably been covered so many times before. I remember what an agonising decision this was when we were caring for Mum several years ago.

We are now at the point again with MIL and have been determined to keep her in her own home for as long as possible. But she is now peeing in the kitchen bin and pouring it down the kitchen sink, despite having a state of the art commode only feet away. She occasionally tries to wash out her incontinence pants and we find a sodden heap in the bathroom. She occasionally gets in a mess after using the toilet and forgets to wash her hands afterwards. We have been preparing all her meals for some time, getting her up and washed in the morning and putting her to bed (she would sit in front of a blaring TV if we didn't), it is getting increasingly difficult to keep her hygienic and safe.

We have recently introduced other carers to ensure that we could keep up with her needs long term and have worked on the premise that, as long as the wage bill doesn't exceed the probable costs of a care home, we could keep MIL at home indefinitely. But where do you draw the line?

The decision seems to be based on the ratio between her physical safety and mental well-being.

We have managed to find solutions for many of her limitations, making reminder cards for night time so that she stays upstairs when she sees the cards and pictures reminding her that Incontinence pants aren't washable. These have worked so far. I guess we have to make a card to remind her not to pee in the kitchen bin but she will find that embarrassing on a "good" day.

I fear we may not be far off from making the awful decision......and I really am dreading it.

My heart goes out to all of you in a similar situation. It is not easy.


Maggie
 
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