Home or care home

[Kjn]

I wish we could've cared for dad as we thought we would be able to, as it stands his aggression, not knowing where he is, who he is, who we are and mum being so frightened along with other problems , dad was admitted to hospital on 1 August and is still there as we desperately try to find a care home place let alone one than can cope , dementia/alz is not about forgetfulness and memories for everyone, it destroys the pwd and those caring ,it breaks so many hearts as the cruel thing it is.

My dads been moved to a different room after 2months in the sm hospital he is in as they are starting building work which they thought may disrupt /distress him .
The move itself has done that.
Its so sad to watch.

 

[HillyBilly]

Hi Tin,
The social services was suggesting my father pay the £800+ a week, I live two miles from my father, and am the eldest of five, my eldest brother was the one who said I was the best person to care for my father full time, with their help.

Hi Marmar.
Your brother
You've given up your job basically to be an unpaid carer for your father at the behest of your brother????
Do you have a family/home of your own?
What will happen if, one day, you become ill or have a crisis of your own and you're unable to be at your father's house that day or for several days?
Who looks after your father during the night? If SS have suggested either a care home or a live-in carer then your father must have quite demanding care needs, even now, because there is also the option of "carers' visits", two or three times per day eg to help with showering, meals, meds etc.

 

[BR_ANA]

Hi ana,
I spend all day everyday with my father, and my other three siblings come and stay weekends, I am not judging carers that have made the decision to put their loved ones in care homes, I hope I can care for my father as long as I can in his own home, in reply to all who have commented, to my post, social services gave me the option of putting my father in a care home, or having a live in carer for £800+ pounds for a week, my father paying for this himself, this was in march of this year, and although my father needs reminding to shower and eat properly, and he repeats himself often, I feel my father isn't bad enough to leave his own home, hence my post mentioning why so quick to put in a care home. I am sorry for not explaining properly my reason for my post, I am sorry for offending so many, it wasn't my intention, I know everyone's circumstances are different, my intention wasn't to judge any carers decision to put their loved one in a care home. My father has good and bad days, at the moment things are good, maybe it is my way of trying to shut out the thought that one day I may need to make the decision of a care home, but I hope I can be like my mother in law and care for my father in his own home until the end, this disease is so cruel, and we wouldn't allow an animal to suffer, I hope, my father will pass away peacefully in his own familiar surroundings.

Marmar

I hope you can care for him at home.

It is good that you have weekend for you.

About the thought that maybe one day CH would be needed: maybe it is time to listen to your fears. Write down them and see if they are reasonable or not.

 

[Caroleca]

Dearest mar mar...as soon as I read your post I knew many would feel offended....I did at first but then realized this is not a decision you made all by yourself. I agree 100 percent with Hillybilly...how dare your brother decide you were the "best one" for looking after dad. I'm not sure what kind of work you were doing but I am sure that your father would not want you to give up you job to be a full time carer. If you don't like your job and want to give it up...that would be another story. I feel that you have no idea what is in store for you and I wish you all the best with your fathers care. But I must say I do sense in your post that you were looking to "justify" your decision. It's going to be a long and tough road and you would be best to stay on tp for support...I believe you will need it. My mom has been in care for 3 years now and believe me..my dad struggles with this every day....he also visits her and stays with her all day for most days. Believe me...if there was any way of keeping her at home....we would have done it....long story...but just like others it is probably the worst decision to have to make ...agonizing actually. I wish you all the success with looking after dad full time...let us all know how you are doing. Lots of great information and discussion on tp. And welcome.
Carole

 

[Marmar]

And I'm guessing no one pays you £800 a week for your caring? It's always great when someone elects you to do a job they don't want to do themselves. "Really, you're so good at that!" What a cheek your brother has. Did Social Services also have other ideas like day care or respite for you, or was that the extent of their involvement? Is your father self-funding? Is he getting Attendance Allowance and are you getting Carers Allowance at least?

You do know you have a right to a carers assessment for yourself? And that while it's good of you to want to keep your father at home as long as possible, no one can force you or should guilt-trip you into caring on your own, least of all your brother. Did SS just make a suggestion regarding the possibility of a care home or did they assess him as needing one? Because trust me, they don't do that lightly, especially if they might have to pay towards it.

Rereading your post, I think you're sounding out what's best for you and your father, so please take comfort from the fact that a care home is not always the worst option, and you should not break yourself in half just to avoid it. There are people who positively thrive in a care home environment. Granted, others don't, but we're all individuals, and we all need proper support. I care for my OH at home but I could not do it without his day care centre and sitters from Age UK. I would not have a life without them, and my OH loves his Day Centre. The people there are wonderful.

Hi beate,
Thank you for your encouraging reply, my father gets attendance allowance, I don't get carers allowance, as my father gets direct payments and pays me to look after him as he won't have anyone else, i have given up my full time job to do this, I have had a carers assessment and they surgested my father go to a day centre, it took a lot of persuading my father to go and see the day centre which he did, but every time that day came for him to go he didn't want to go, this was causing more stress to myself, which I explained to the day centre manager, but the response I got from her was all doom and gloom, my reply was what do you want me to do deceive him in going, which she replied no, so what was I suppose to do, for myself to get respite, have not heard anything since from social services, so am plodding along at the moment.
Social services suggested a care home So I could continue working, but my father does not want to go in a care home and I know this would stress him out, he still knows who I am, although by the end of the day he thinks I am a home helper.
I am trying to be positive, and hope I can care for my father in his home as long as possible, I understand it is not for everyone, my father in law who was 75 stayed in his own home to the end, with his wife careing for him along with carers, and maybe I was looking for others who have also done the same thing.
No intension of judging others who are carding for there loved ones in care homes.

 

[Marmar]

Dearest mar mar...as soon as I read your post I knew many would feel offended....I did at first but then realized this is not a decision you made all by yourself. I agree 100 percent with Hillybilly...how dare your brother decide you were the "best one" for looking after dad. I'm not sure what kind of work you were doing but I am sure that your father would not want you to give up you job to be a full time carer. If you don't like your job and want to give it up...that would be another story. I feel that you have no idea what is in store for you and I wish you all the best with your fathers care. But I must say I do sense in your post that you were looking to "justify" your decision. It's going to be a long and tough road and you would be best to stay on tp for support...I believe you will need it. My mom has been in care for 3 years now and believe me..my dad struggles with this every day....he also visits her and stays with her all day for most days. Believe me...if there was any way of keeping her at home....we would have done it....long story...but just like others it is probably the worst decision to have to make ...agonizing actually. I wish you all the success with looking after dad full time...let us all know how you are doing. Lots of great information and discussion on tp. And welcome.
Carole

Thank you Carole, for you encouraging reply, you are right I don't want to make the decision, of putting my father in a care home, and have already said this to my brother that if it came to it he will have to come and see to it.
My father was happy for me to give up my job to care for him, I worked in fashion and design. I use to see to him before going to work, and after work, but it became too tiring and when my father had doctors or hospital appointments, my employer wasn't very sympathetic for me to have the time off. my brother knowing i only live two miles away, said I was the best person to care for our father.
Which I don't mind doing, but it can be lonely at times, and I sometimes wish I had my life back, like my other siblings, but as I am the eldest, and I was the one to look after my other four siblings when they were young while my mother and father were at work.
It is down to me again.

 

[Chemmy]

Thank you Carole, for you encouraging reply, you are right I don't want to make the decision, of putting my father in a care home, and have already said this to my brother that if it came to it he will have to come and see to it.
My father was happy for me to give up my job to care for him, I worked in fashion and design. I use to see to him before going to work, and after work, but it became too tiring and when my father had doctors or hospital appointments, my employer wasn't very sympathetic for me to have the time off. my brother knowing i only live two miles away, said I was the best person to care for our father.
Which I don't mind doing, but it can be lonely at times, and I sometimes wish I had my life back, like my other siblings, but as I am the eldest, and I was the one to look after my other four siblings when they were young while my mother and father were at work.
It is down to me again.

If you are happy to do it, without resentment, then that is fine. However, you should perhaps have some sort of a plan in place for what will happen when your father is no longer around. Giving up a job to become a carer when you are of working age can have severe financial implications in later life.

If your siblings end up living off comfortable pensions and you are struggling to make ends meet, things may look a little different.

 

[love.dad.but..]

Hi beate,
Thank you for your encouraging reply, my father gets attendance allowance, I don't get carers allowance, as my father gets direct payments and pays me to look after him as he won't have anyone else, i have given up my full time job to do this, I have had a carers assessment and they surgested my father go to a day centre, it took a lot of persuading my father to go and see the day centre which he did, but every time that day came for him to go he didn't want to go, this was causing more stress to myself, which I explained to the day centre manager, but the response I got from her was all doom and gloom, my reply was what do you want me to do deceive him in going, which she replied no, so what was I suppose to do, for myself to get respite, have not heard anything since from social services, so am plodding along at the moment.
Social services suggested a care home So I could continue working, but my father does not want to go in a care home and I know this would stress him out, he still knows who I am, although by the end of the day he thinks I am a home helper.
I am trying to be positive, and hope I can care for my father in his home as long as possible, I understand it is not for everyone, my father in law who was 75 stayed in his own home to the end, with his wife careing for him along with carers, and maybe I was looking for others who have also done the same thing.
No intension of judging others who are carding for there loved ones in care homes.

I too couldn't get Dad to the Alzheimer's society day centre after 2 visits but instead of your experience the staff were totally supportive and person centred recognising of course that it would be detrimental to dad to continue. One thing that struck me....we have all felt that the pwd has enough clarity early on to let you know they could make certain decisions on care etc but for many pwd the illness makes them very self centred they can't help it and this was certainly the case with my dad. So of course your dad is not going to want or accept willingly any changes. However if your dad is in moderate stage maybe you feel that is what he thinks but he doesn't now have the mental capacity to think about the implications for you just that so long as he feels looked after then that must be ok. Think about what your dad would have said to you pre dementia about this scenario....dedicating your next few years to an illness that is progressive, giving up your job and most likely as things worsen your social life, even with support a carer can become isolated and worn out...that was how I looked at it and my mum and dad would certainly not have wanted that for me. Contrary to the way you wrote your first post I can now see from your other posts that like us who have had to agonise over the care home decision your situation also is problematic for you. I would just say also all of us who have loved ones in a care home are still carers we still do things for the pwd the care just changes and the at home worries are replaced by monitoring of staff and care etc. I think your family have unfairly opted out. Just because you can and are willing doesn't mean you should have the lions share of care.

 

[Caroleca]

I too couldn't get Dad to the Alzheimer's society day centre after 2 visits but instead of your experience the staff were totally supportive and person centred recognising of course that it would be detrimental to dad to continue. One thing that struck me....we have all felt that the pwd has enough clarity early on to let you know they could make certain decisions on care etc but for many pwd the illness makes them very self centred they can't help it and this was certainly the case with my dad. So of course your dad is not going to want or accept willingly any changes. However if your dad is in moderate stage maybe you feel that is what he thinks but he doesn't now have the mental capacity to think about the implications for you just that so long as he feels looked after then that must be ok. Think about what your dad would have said to you pre dementia about this scenario....dedicating your next few years to an illness that is progressive, giving up your job and most likely as things worsen your social life, even with support a carer can become isolated and worn out...that was how I looked at it and my mum and dad would certainly not have wanted that for me. Contrary to the way you wrote your first post I can now see from your other posts that like us who have had to agonise over the care home decision your situation also is problematic for you. I would just say also all of us who have loved ones in a care home are still carers we still do things for the pwd the care just changes and the at home worries are replaced by monitoring of staff and care etc. I think your family have unfairly opted out. Just because you can and are willing doesn't mean you should have the lions share of care.

I agree...exactly. Making you the "oldest" child have the lions share seems very unfair to me. Just because you physically lived the closest to your dad doesn't mean or equal that you should be the main caregiver. I still believe that somehow you also know that and I think your first original post was more about that than being insensitive. If anyone is insensitive..it would be your brother in my opinion.

As love.dad.but said in her post...your father would not want you to give up your career...unless he was completely selfish. He does not have the means to make decisions on his own...that is why he needed looking after....it's the dementia.

I am sorry that you originally came off as being insensitive....I think that now is far from the case. Good luck with your plan...just make sure you look after yourself and make a plan as others have said...you will need the breaks as a full time caregiver.

Don't forget...mayrters don't get medals at the end of the day! Take care of yourself.

 

[Tin]

Marmar, the curse of the first born daughter, whether we want to or not, we seem to be first in line for caring. In my case and probably yours, I am 3rd generation in doing this, I know my grandmother looked after great grandmother and initially my aunt [mum's older sister] looked after my grandmother till she was diagnosed with cancer and then my mum took over, the care responsibility leaping over her 2 older brothers and now me looking after my mum. No resentment from me, I am cocky and self obsessed enough to want to do this! The next generation of 'daughters' have a completely different view in that it is not something they would immediately take on and there is no expectation for them to take on this role.

 

[love.dad.but..]

Marmar, the curse of the first born daughter, whether we want to or not, we seem to be first in line for caring. In my case and probably yours, I am 3rd generation in doing this, I know my grandmother looked after great grandmother and initially my aunt [mum's older sister] looked after my grandmother till she was diagnosed with cancer and then my mum took over, the care responsibility leaping over her 2 older brothers and now me looking after my mum. No resentment from me, I am cocky and self obsessed enough to want to do this! The next generation of 'daughters' have a completely different view in that it is not something they would immediately take on and there is no expectation for them to take on this role.

Not necessarily the oldest, I am the middle of 3 daughters, geographically by far the closest but other 2 sisters have opted out and visit dad only occasionally. I think it has more to do with our character in wanting to try to do the right thing for our pwd straight from the start, in my case when mum died suddenly at home and my dear dad could not be left to fend for himself because he wasn't capable. The siblings who are able to step away without giving us carer children any thought and or how hard it must be for us clearly have a selfish streak which sadly some siblings seem to be born with or it develops when The going gets tough!

 

[Greyone]

MARMAR . I think you are a very brave person. Caring for a loved one with Alz is a responsibility, but if you're up to it then good luck to you. Its often very difficult to judge when someone is ready for long term care. If you are able to look after him full time then you may be in a better position than if you are going to work. My sister and I looked after our mum part time, then she had carers but was ok on a day to day basis. The our social worked added in a safe and well check so she was not alone all afternoon. I was honestly and extremely grateful to out social worker for making the push for long term care when my mum had a uti, two weeks in bed and then a fall walking around in her stockings at night.

My best suggestion is to take all that is offered to you in terms of support so you can maintain your life and sanity.

Also , my mother improved dramatically when she went into long term care. She never needed a stick, she was always mobile and chatty until she had a fall after 8 months. But for us it was the right time. If your father is mobile safe in the show and walking around the house then I think you'll be ok for a while.

 

[Hair Twiddler]

No resentment from me, I am cocky and self obsessed enough to want to do this! The next generation of 'daughters' have a completely different view in that it is not something they would immediately take on and there is no expectation for them to take on this role.

Not easy is it? - by any ones measure.
I have very recently come to the conclusion that my best efforts caring for my mum is not enough any more.
I have spoken with my son and daughter (still teenagers) and instructed them, to not, under any circumstances, take me into their home and their lives, ever.
No matter what I might say in later years.
What I tell them now is what matters. I love them both very much and I am sorry that caring for their grandmother has deprived them of so much of me.

 

[Witzend]

I have said the same to my daughters - I would never, ever, want them to give up their lives to care for me, so they have strict instructions to find me a good care home should the situation ever arise, God forbid.
They know all too well what we had to cope with over so many years of both FiL and my mother with dementia.
I have also put this in my Living Will, so no matter what I might say later, it's there in compos-mentis black and white.

 

[Georgina63]

I've said the same thing to my son and daughter-in-law. No matter what happens, do not move me to live with you. I made them both promise this, they have their own lives and family. Every six months I remind them again what my wishes are to ensure they both know it now in case I too get dementia or Alzheimers - I do not want them to worry and think they are doing the right or wrong thing. The right thing for me - put me in care which are my own wishes.

I love my mum so much, have no support from a sibling 5/10 minutes away and I'm alone. I take the abuse, aggression, accusations etc. There has occasionally been a violent streak, only when this becomes full blown and she is physical, will I consider a care home for her. Of course there could be other things that may occur, but until such time she's home alone and weight is fine and is managing.

On a brighter note, my son who is a Doctor, said 'gee mum, I'll have to ensure I am earning a decent salary to ensure you can be looked after in a private care home'. To which his wife and I laughed.

I'm with you on that one Cardifflady, I plan to write a living will. My kids are teenagers and I want them to know in time that I would not want them looking after me and certainly not living with them. My folks are well cared for in a home now, I couldn't offer them that level of care in my home, or support them remaining in theirs. It's very hard when their true wishes are not understood (the closest is understanding that Mum and Dad wanted to stay together, but beyond that by the time we needed to make decisions, the dementia has taken over). Sorry you are on your own in this, I also have a sibling who has been consistently unpleasant throughout this, unfortunately not totally invisible!! Your son sounds lovely. Gx

 

[Georgina63]

I have said the same to my daughters - I would never, ever, want them to give up their lives to care for me, so they have strict instructions to find me a good care home should the situation ever arise, God forbid.
They know all too well what we had to cope with over so many years of both FiL and my mother with dementia.
I have also put this in my Living Will, so no matter what I might say later, it's there in compos-mentis black and white.

Hi Witzend, our posts crossed and I read with interest about your living will. I plan to do similar - how did you go about it?

 

[Greyone]

I cant imagine what your brother was thinking to say that. he sounds like he's taking the cowards way out, knowing how much you love your father. But this is no time for that. Do both of you have LPA or deputyship or just you. That will effect who makes some of the decisions and whether your parents made a will. there are so many things like that to think about but I wont intrude.
Maybe if he spends time with his father he'll soften. I do so hope he had good relations with your father. But I think the most important task is to understand how your brother feels. Maybe he is just being a coward and running away or maybe he's just not as brave as you are.

Whenever I can I always say that it is nearly impossible to know when the right time for a home is. It can be truly dreadful to have to go through problems like illness and wandering. One thing you can guarantee is there will always be plenty of people here to offer advice and insights to most problems you'll encounter. So good luck.

 

[Marmar]

I cant imagine what your brother was thinking to say that. he sounds like he's taking the cowards way out, knowing how much you love your father. But this is no time for that. Do both of you have LPA or deputyship or just you. That will effect who makes some of the decisions and whether your parents made a will. there are so many things like that to think about but I wont intrude.
Maybe if he spends time with his father he'll soften. I do so hope he had good relations with your father. But I think the most important task is to understand how your brother feels. Maybe he is just being a coward and running away or maybe he's just not as brave as you are.

Whenever I can I always say that it is nearly impossible to know when the right time for a home is. It can be truly dreadful to have to go through problems like illness and wandering. One thing you can guarantee is there will always be plenty of people here to offer advice and insights to most problems you'll encounter. So good luck.

Thank you greyone, for your advice, my bother and myself have LPA financial and welfare, my father has also made a will and a wishes statement, which states he wishes to remain in his own home.My brother wanted me to look after our father because his father in law has dementia, and he fell in his own home, and broke a rib, even though he had carers four times a day he was left on the floor for 5 hours.
He spent nearly two months in hospital with a punctured lung from the Broken rib.
When he was well enough, he had to go into a care home which he was unhappy about, my brother said they just leave him in his room drugged up to keep him out of harms way, and my brother didn't want this for our father.
As I only live two miles away my brother thought if I was willing I would be the best person to care with their help at weekends. My other four siblings live over 100 miles away, and although weekend visits was working at the beginning, it is now dwindling off.

 

[Margi29]

Thank you greyone, for your advice, my bother and myself have LPA financial and welfare, my father has also made a will and a wishes statement, which states he wishes to remain in his own home.My brother wanted me to look after our father because his father in law has dementia, and he fell in his own home, and broke a rib, even though he had carers four times a day he was left on the floor for 5 hours.
He spent nearly two months in hospital with a punctured lung from the Broken rib.
When he was well enough, he had to go into a care home which he was unhappy about, my brother said they just leave him in his room drugged up to keep him out of harms way, and my brother didn't want this for our father.
As I only live two miles away my brother thought if I was willing I would be the best person to care with their help at weekends. My other four siblings live over 100 miles away, and although weekend visits was working at the beginning, it is now dwindling off.

Hi Marmar I know from experience it's very hard when all responsibilities of care are on you. We have family who live 100 mile away also ( who think visits to mum are enough once every three month !!! ) we moved mum near to us as she has got worse and will try our best to keep her from a ch. But as time goes on we know that it's a possibility mum will go into a ch. you need time for you, if you get ill then that's not good. We lost dad in the end to this and my poor mum ended up a shadow of herself. She has both ad and vascular dementia. Take care, my heart goes out to anybody whose family member is suffering with this.

 

[fizzie]

Dear Marmar
As others have said you do need a break and you do need a life too. I cared for my Mother at home but like others I could not have done it without the lunch club/day centre and some respite hours from my carers assessment. My Ma didn't want to go to the lunch club initially either BUT I had to say to her that she must - if she wanted to live at home then there had to be some compromise on both sides and so she must go to give me a break and allow me (my choice) to work. I did have to force the issue but in the end it meant I could support her at home until she died which was what she wanted and actually she did get used to going - she enjoyed the bus (transport) journey and then it became like a second home. She would never have 'chosen' to go but it was necessary.
I hope you find a way around this. keep posting, lots of support on here whatever you decide xx