Care home or 'care in our home'??

[ejay7]

I have cared for my 78 year old mum for the past ten years or so. In the past few years, I was visiting her daily and doing everything for her. I did all I could to ensure her safety by having Carelink installed, mobility aids etc, but her condition has worsened in the past year and she has had 4 falls. She wasn't wearing her Carelink alarm pendant and probably wouldn't have remembered what it was for if she had been! The last fall resulted in her going into hospital for 3 weeks. This did her mental health no good at all and her deterioration was rapid and shocking. My sister and I decided ( after much inner turmoil) that 24 hour care in a home was the best choice. On the Social Worker's assurance that Mum would qualify for Continuous Healthcare Funding, we got her a place in a good home. We have now been told that Mum does not qualify and we are stuck with over £620 a month Top Up Fees! The savings will run out in 17 months and Mum will have to go into a cheaper Bupa Care Home. I visited one nearby and it was appalling. My partner says we can have Mum come to live with us and we will adapt. But we have a five year old daughter too and although she adores her Grandma, I am scared that my time will be swallowed up again with caring for my Mum and she will be affected. I am shocked at myself for hesitating to care for my mum. It IS hard work, but she's my Mum! I am filled with guilt and indecision

 

[sah]

Hi ejay7

I know it's really tough...and an awful choice...but I would always say that we should put our children first-especially one so young. My dad insisted that I put him in care for his last year-not AD though-as he did not want the children to remember him ill and struggling; so they saw him once he'd been washed/dressed/toileted and had some lovely last months.

The other point is -as I care at home for my husband with AD-you may soon burn out. I find it hard with my son still at home-he finds it tough-but he's 21 and can get out and have a life. A five year old won't be able to escape-and your mum will surely be getting harder to manage.

Don't feel guilty; you have done all you can and more. It's hard to accept where we are with this. Not all care homes are poor-there are some really good ones out there. Maybe use the 17 months to a) appeal the decision and b) look for good alternatives. But there is nothing wrong with putting your own family first; I'm sure your mum-when well-would have wished that.

Sending hugs.Sah.

 

[deedee1]

My mum lives with me, my husband and our 12 year old son she's lived with us for 10 years suffering from vascular dementia for the last 6 years, I love my mum but would I do it again...NO!!! sounds harsh I know but our lives are taken over we can't come and go as we please everything revolves around mum does it affect my son...of course its not a normal childhood is it, although my son is excellent with his nan. Whatever you decide to do it will be hard but take it from someone who knows you will be giving up your life. We have some great times with mum but the bad times are so hard.
Dee x

 

[Austinsmum]

I’m in full agreement with Sah. My mum (AD) lives with us and she’s driving our children away. They are grown up admittedly but one is passing through after 7 years away working - it’s been lovely to spend time together again but she can’t bear being stared at constantly and having her things moved, lost, fiddled with by mum so she’s planning on leaving prematurely

 

[crazyfish]

Hi,
you have already received some good advice on how to proceed.
Any decision will be tough but you know that you will have done your best so don't feel any guilt whatever your future decisions are.
As usual you have been misinformed by the SS .
A SW CANNOT give any assurances as to CHC only the NHS can do this.
I don't suppose anything was put in writing !
Who has told you that you mum wouldn't qualify?
Did you go through a full MDT assessment for CHC if so what scores did your mum attain in each domain and did you have any input in that assessment?
If you have had an assessment then of course you can go down the appeals route.
If funding has been refused.
Be careful not to sign anything.
Check everything out before agreeing to anything.
Get good advice and read the National Framework this is the document the NHS must abide by.
Get EVERYTHING in writing.
Stay strong .
MICK

 

[Rooley]

Don't Do It...!

I can only speak from my own experience but it's just too much to expect to cope with a young family and the needs of an adult with VasD.

My Mum is in hospital at the moment but she's been with us for 5.5 years and rapidly declined in the last 6 months.

I've had to say that she cannot come home to us which is heartbreaking but I cannot cope with her needs, the needs of my family (youngest has just turned 6) and working full time. I have no life outside of caring for the needs of my Mum. She wouldn't want this, I wouldn't want it for my kids for sure and believe she feels the same.

She's not medically stable to come home today, and Social Services are involved to do an assessment but for the sake of all of us, and for all the reasons already written in the other replies, the time has come for us to get a better level of care for mum, and reclaim some of our lives back.

This might seem harsh, and I love my dear little ol Mum very much, but I wouldn't have her come live with me if I had the choice again. As Mum's VasD progressed she was seen as my problem and therefore I got zero assistance... plenty of sympathetic looks and people telling me how tired I looked, but nothing practical from the system she's paid into all of her life.

It will break you... put a strain on your relationships and leave you with a resentful taste in your mouth.

Like I say... just my experience maybe...

 

[Wolfsgirl]

Rooley this is such a sad story and you should never have had to suffer so much and feel like this about your Mum. I hope you all recover and begin to build new happy memories of time spent without all the angst and stress x

I can only speak from my own experience but it's just too much to expect to cope with a young family and the needs of an adult with VasD.

My Mum is in hospital at the moment but she's been with us for 5.5 years and rapidly declined in the last 6 months.

I've had to say that she cannot come home to us which is heartbreaking but I cannot cope with her needs, the needs of my family (youngest has just turned 6) and working full time. I have no life outside of caring for the needs of my Mum. She wouldn't want this, I wouldn't want it for my kids for sure and believe she feels the same.

She's not medically stable to come home today, and Social Services are involved to do an assessment but for the sake of all of us, and for all the reasons already written in the other replies, the time has come for us to get a better level of care for mum, and reclaim some of our lives back.

This might seem harsh, and I love my dear little ol Mum very much, but I wouldn't have her come live with me if I had the choice again. As Mum's VasD progressed she was seen as my problem and therefore I got zero assistance... plenty of sympathetic looks and people telling me how tired I looked, but nothing practical from the system she's paid into all of her life.

It will break you... put a strain on your relationships and leave you with a resentful taste in your mouth.

Like I say... just my experience maybe...

 

[Wolfsgirl]

Ejay I hope you take the advice offered as I believe it is well intentioned and Rooley's story demonstrates this truth.

Would you honestly want your little girl looking after you like this? I do hope everything works out well x

I have cared for my 78 year old mum for the past ten years or so. In the past few years, I was visiting her daily and doing everything for her. I did all I could to ensure her safety by having Carelink installed, mobility aids etc, but her condition has worsened in the past year and she has had 4 falls. She wasn't wearing her Carelink alarm pendant and probably wouldn't have remembered what it was for if she had been! The last fall resulted in her going into hospital for 3 weeks. This did her mental health no good at all and her deterioration was rapid and shocking. My sister and I decided ( after much inner turmoil) that 24 hour care in a home was the best choice. On the Social Worker's assurance that Mum would qualify for Continuous Healthcare Funding, we got her a place in a good home. We have now been told that Mum does not qualify and we are stuck with over £620 a month Top Up Fees! The savings will run out in 17 months and Mum will have to go into a cheaper Bupa Care Home. I visited one nearby and it was appalling. My partner says we can have Mum come to live with us and we will adapt. But we have a five year old daughter too and although she adores her Grandma, I am scared that my time will be swallowed up again with caring for my Mum and she will be affected. I am shocked at myself for hesitating to care for my mum. It IS hard work, but she's my Mum! I am filled with guilt and indecision

 

[Misty activity]

Top up

Sorry to hear about your predicament, I'm a deputy manager of a care home and when money runs out we take our residents at funded rate. You should speak to the home manager and explain you cannot afford the top up. If she's any kind of caring person she will have empathy and drop the top up.

 

[ejay7]

Thankyou all for replying. I am listening to what you say, knowing that you all are talking from experience. But, I am also battling from the perspective of being a Christian (albeit a new and struggling one!).
Crazyfish? No, we didn't get anything in writing, but the SW said it when both my sister and I met her in the hospital ward. In fact she said on more than one occasion "don't worry about the money running out. It won't come to that". She also implied that she would organize the assessment of needs, but after waiting weeks we asked her, only to be told that we had to ask the Care home Manager to get the ball rolling. In the meantime I had been Googling and had a pretty clear idea that something was wrong. The Manager asked for the Assessment but basically the District Nurse came back and said having looked at Mum's record, she had no nursing needs and so didn't qualify. Simple as that. I am going to ask for a different SW and I will write a letter of complaint also. It's hard to believe that during the nightmare of placing our Mum into Care, we have been so horribly misled!

 

[ejay7]

Top up

Sorry to hear about your predicament, I'm a deputy manager of a care home and when money runs out we take our residents at funded rate. You should speak to the home manager and explain you cannot afford the top up. If she's any kind of caring person she will have empathy and drop the top up.

This is interesting, Misty Activity! I will investigate tomorrow!!

 

[crazyfish]

Thankyou all for replying. I am listening to what you say, knowing that you all are talking from experience. But, I am also battling from the perspective of being a Christian (albeit a new and struggling one!).
Crazyfish? No, we didn't get anything in writing, but the SW said it when both my sister and I met her in the hospital ward. In fact she said on more than one occasion "don't worry about the money running out. It won't come to that". She also implied that she would organize the assessment of needs, but after waiting weeks we asked her, only to be told that we had to ask the Care home Manager to get the ball rolling. In the meantime I had been Googling and had a pretty clear idea that something was wrong. The Manager asked for the Assessment but basically the District Nurse came back and said having looked at Mum's record, she had no nursing needs and so didn't qualify. Simple as that. I am going to ask for a different SW and I will write a letter of complaint also. It's hard to believe that during the nightmare of placing our Mum into Care, we have been so horribly misled!

ejay7,
you are not alone at being misled there are many others in the same position.
Once upon a time you could rely on people in authority to tell you the truth and provide reliable information so that you could make an informed judgement.
Not anymore.
Everyone has their own agenda.
The District nurse has given her opinion but it is just her personal opinion.
It carries no weight.
If you feel that your mother is ill you are entitled by law to insist on an assessment for CHC to be carried out.
If the CH won't help ask her GP.
If once the checklist is completed they still say she wouldn't qualify you can still insist on a full assessment being carried out.
Then you can go from there once you get a result.
Don't be bullied by anyone from the NHS or SS many of them don't understand CHC .
Remember that the core principal of the NHS is that every British citizen is entitled to FREE NHS care at the point of need regardless of their ability to pay.
This is your mums statutory right.
Unfortunately the NHS try to get out of their responsibilities to the sick and elderly by any means possible.
This whole situation is shambolic and immoral and unfortunately you have now found yourself along with thousands of others caught up in this mess.
Just keep asking questions and checking the answers.
MICK

 

[Budgie15]

My penny's worth...

Hi Ejay. I have only recent moved my dad into a CH. he and my mum were living with us and I have two children - 9 and 7 yrs. sadly dad was becoming more and more verbally aggressive, which was originally aimed at mum, but then he started on my husband, then our dogs, me and even my son. After two nights of him being up all night, I called the Ch for some emergency respite and have subsequently managed to get him a permanent place there. It is very hard to do, but our children were trying to stay out of the house as much as possible, which just isn't right. I have to say that since he's been in care, he's seems to be a lot happier and a lot less aggressive. I cannot provide him with the dedicated care that he gets in the home, and that alone keeps me in the knowledge that it was the right decision. Mum is still living with us, which means life can still be difficult, but at least my children seem to be a lot more relaxed and happy in their own home, which is just so important for them.
I feel for you and your predicament, but you will know the right answer for you and yours - good luck with your decision. Xxx

 

[boxer]

Ejay it sounds like you've done a very good job caring for your Mum and I know what you mean by feelings of sadness and guilt but if you (or a member of family or friend) can visit your Mum every day in her care home then hopefully this will ease this for you.

As the eldest of 3 sisters I'm in the horrible position of having to let my sisters (and Mum) know anytime now that I can't go through having to sit with my Dad in the future and that we have to face up to the time has come for him to be looked after 24 hours.

My Dad is 85 next week and has had Alzheimers for 6 years. In that time my Mum has looked after him in the home. 18 months ago my Mum had breast cancer and between us 3 sisters we were there for her and my Dad but it was hard work. Of course we all have our own families, work and stuff. If my Mum isn't around then my Dad is ten times worse but when my Mum was in hospital with everything (sometimes weeks) then it was physically and emotionally draining and the effects came out in me 6 months later with skin conditions and hair loss. I know it sounds selfish but I felt as if I'd aged 10 years in that time. I have 3 children myself (eldest 20) and also am a registered childminder with parents coming in everyday very early.

My Mum has just found out she has to go for more tests as the docs have found something. I am devestated for my Mum but also am just thinking ahead if she would have to go in hospital again etc. My Mum (bless her) doesn't seem to comprehend the effect it has on us daughters and has vehemently said she would never put my Dad into a home.

My husband has been my rock in all this and he's made me realise that of course somebody would visit my Dad everyday if he had to go into a care home There are his three daughters and 12 grandchildren very nearby who all love him very much.

Will be going with Mum to the hospital this Thursday to find out more, but will be having to force myself to bring the eventualities up with my sisters.

 

[ejay7]

ejay7,
you are not alone at being misled there are many others in the same position.
Once upon a time you could rely on people in authority to tell you the truth and provide reliable information so that you could make an informed judgement.
Not anymore.
Everyone has their own agenda.
The District nurse has given her opinion but it is just her personal opinion.
It carries no weight.
If you feel that your mother is ill you are entitled by law to insist on an assessment for CHC to be carried out.
If the CH won't help ask her GP.
If once the checklist is completed they still say she wouldn't qualify you can still insist on a full assessment being carried out.
Then you can go from there once you get a result.
Don't be bullied by anyone from the NHS or SS many of them don't understand CHC .
Remember that the core principal of the NHS is that every British citizen is entitled to FREE NHS care at the point of need regardless of their ability to pay.
This is your mums statutory right.
Unfortunately the NHS try to get out of their responsibilities to the sick and elderly by any means possible.
This whole situation is shambolic and immoral and unfortunately you have now found yourself along with thousands of others caught up in this mess.
Just keep asking questions and checking the answers.
MICK

I must say, Mick, you have hit the nail right on the head. Its a sad world we live in today where it does seem like "everyone has their own agenda".
In a selfish way I am also peed off that just when I think the weight is lifting (of practical care, not emotional strain so much), I am bracing myself for another battle of sorts with the 'Care Sector'. This reminds me of another issue I came across this week..I wasn't able to visit my mum for about 6 days as I had Gastroenteritis. I'll point out that I have previously noticed my Mum's hair being greasy and wheeling her to her room to wash it myself. Anyway, when I was fit to visit my mum two days ago, I was SHOCKED at her appearance; hair thick with grease from root to tip! I whisked her off to wash her hair immediately. When I complained, I was told that hair is washed during the once-a-week shower. "What? It's costing over half a thousand pounds for my mum to live here each week and you don't wash her hair in between if it needs it?What about dignity?" I asked, only to be told by the Senior Carer to speak to the Manager. She also had the nerve to fire back at me "why don't you do it?". ERM! I do and I am but I expected more from such an expensive service!
Sorry to rant...the more I think about the whole thing the more infuriated I become..ALSO! I noticed at the same time that Mum's feet and ankles were very excessively swollen and yet they had put her socks on which had left massive indentations around her legs (isn't that dangerous?). I removed all socks from her room and when I told Senior Carer she questioned me again! Grrrrrr!

 

[ejay7]

Boxer and Budgie 15 (and all who I haven't commented individually on), I really do empathize with you. It's such a difficult time for so many of us. But as its been said, our parents in younger days would have been horrified to think that the day would come when they would be the cause of such worry to us. I am certain that they would all have hoped we would take care of ourselves and ours. We are all trying our best. We all have the best interests of our loved ones at heart and are ensuring that they are safe, well fed and secure. That counts for a lot x

 

[happisoo]

I just wanted to say Ejay that on no account take put your mum before your 5 year old - and I say this with experience of having my mum at home for 4 years with us and we realised that we had come to the end of our tether and sad as it is it was a fact we had to face. It is distressing and my heart goes out to you and your sorrow but it will be the right thing to do. Blessings and hugs xx

 

[Rooley]

Rooley this is such a sad story and you should never have had to suffer so much and feel like this about your Mum. I hope you all recover and begin to build new happy memories of time spent without all the angst and stress x

Thanks Wolfsgirl, it's a difficult situation made worse because the financial aspect for us. Mum would be a self funder, hasn't put and LPA in place and I'm now starting the 6-8 month process for a Deputyship because she's not got the mental capacity to do the LPA now, or make good quality decisions around her care.

We will recover, but in the first instance I have to now make sure that I make the choices that are best for Mum for the time we all have left with her.

Mum's needs have been put before everyone else's. Now I have to turn it around and balance it better and having her home to live with us is no longer the solution.

Ejay, try not to wrestle with your conscience, or your religious views. This is a question of what is the best option of care for your Mum, without bringing anyone else who cares down in the process.

I'm loving Crazyfish's reply... spot on Crazyfish!

 

[ejay7]

Thanks Wolfsgirl, it's a difficult situation made worse because the financial aspect for us. Mum would be a self funder, hasn't put and LPA in place and I'm now starting the 6-8 month process for a Deputyship because she's not got the mental capacity to do the LPA now, or make good quality decisions around her care.

We will recover, but in the first instance I have to now make sure that I make the choices that are best for Mum for the time we all have left with her.

Mum's needs have been put before everyone else's. Now I have to turn it around and balance it better and having her home to live with us is no longer the solution.

Ejay, try not to wrestle with your conscience, or your religious views. This is a question of what is the best option of care for your Mum, without bringing anyone else who cares down in the process.

I'm loving Crazyfish's reply... spot on Crazyfish!

Rooley, thankyou. You're right and I need to stop this tunnel vision. Do you know, my partner, myself and our daughter have never had a holiday together? This year we are going with my family, on a four day cottage holiday (courtesy of my lovely sister!). Can't tell you how much this means to us. Life is precious for ALL of us, isn't it?

 

[jan1962]

I must say, Mick, you have hit the nail right on the head. Its a sad world we live in today where it does seem like "everyone has their own agenda".
In a selfish way I am also peed off that just when I think the weight is lifting (of practical care, not emotional strain so much), I am bracing myself for another battle of sorts with the 'Care Sector'. This reminds me of another issue I came across this week..I wasn't able to visit my mum for about 6 days as I had Gastroenteritis. I'll point out that I have previously noticed my Mum's hair being greasy and wheeling her to her room to wash it myself. Anyway, when I was fit to visit my mum two days ago, I was SHOCKED at her appearance; hair thick with grease from root to tip! I whisked her off to wash her hair immediately. When I complained, I was told that hair is washed during the once-a-week shower. "What? It's costing over half a thousand pounds for my mum to live here each week and you don't wash her hair in between if it needs it?What about dignity?" I asked, only to be told by the Senior Carer to speak to the Manager. She also had the nerve to fire back at me "why don't you do it?". ERM! I do and I am but I expected more from such an expensive service!
Sorry to rant...the more I think about the whole thing the more infuriated I become..ALSO! I noticed at the same time that Mum's feet and ankles were very excessively swollen and yet they had put her socks on which had left massive indentations around her legs (isn't that dangerous?). I removed all socks from her room and when I told Senior Carer she questioned me again! Grrrrrr!

Reading this has made my heart beat real fast.
I worked in a care home for a good few years as a Senior Care Assistant
and at no time would i suggest a residents family member wash any ones hair.
This gives the job sector we work in a bad name.
If at any time a client needed any personal care i made sure it was carried out by
a care assistant and i was not afraid to carry any task out that needed doing.
Please do not let that care assistants attatude cloud your thoughts of what a good care giver can be. there are a good few of us out there.

jan1962