Best Care For Dad With Dementia

[LOLWRIGHT]

Hello Everyone,.
I really could use some advise here. My 87 year old Step father has heavy on set dementia. He is currently in respite care in a very nice Care home. My mum who has had many health problems herself and has struggled so much in the last couple of years had a massive breakdown. As Step dads condition rapidly going down hill. Absolutely No mobility now. Brain function at an all time minimum. We had him placed in a very nice care home so mum could recover from her breakdown. Mum is a 70 year old beautiful lady who is a 10 year survivor of pancreatic cancer. She gets bouts of being in bed for few days every couple of months with stomach issues.

The step children are pushing my mother to get my step father back in the family home. Their rational is that it would be best for their father to come and pass away in the family home, this would entail modifications on the house. Care workers coming and going 4 times per day. 2 care workers at a time. They cant really give exact definitive times on when they will come....within 1 hour of so of set time. We would need specialists beds and equipment. Also as my step father is double incontinent it would mean that if he goes to number 1 or number 2 and the care workers have just left, he would have to sit there for may be up to 4 or 5 hours at a time, soiled, and to my mind at serious risk of infection, bed sores etc. He also even at the home tries to get out of bed or off the chair and falls down, So again this would mean having to call 111 or 999 depending on how bad it was.

So basically I don't think my mother would be able to cope, she wants to do the best thing for her husband as loves him dearly. She is being made to feel she should do this by the step children and being emotionally blackmailed into it. I DO NOT believe ultimately that this is the best care package for my step dad. Also I think she is being pressured into this, they are trying to say with all the support it will be more than manageable. I as her son obviously am very concerned it will be far too much strain, stress etc.

I would really appreciate comments from people who are going through the same type scenario … These things are always so so hard. I just need some advise.. And really appreciate any input and help in this regard..
Many thanks
L

 

[Beate]

Call their bluff - if it's so important for their Dad to be in a home with loved ones around him, why don't they take him in and make all those modifications to their own homes? Surely they love him enough?

Has anyone got POA?

 

[Shedrech]

hello @LOLWRIGHT
a warm welcome to TP
thank goodness your mum has you to look out for her
and you are being considerate of your step father's needs too
from what you describe it is time for him to have 24hour care, and as you have assessed unless there is a team of live-in carers, that is very difficult to provide at home
besides which, your mum has the right to have her health and welfare considered equally
if she says she can no longer cope, that has to be taken seriously - and as his spouse she must be listened to
is it possible for you to take over contact with her step-children so they are not talking with her directly - you seem as though you would deal with them reasonably

 

[Duggies-girl]

Hello Everyone,.
I really could use some advise here. My 87 year old Step father has heavy on set dementia. He is currently in respite care in a very nice Care home. My mum who has had many health problems herself and has struggled so much in the last couple of years had a massive breakdown. As Step dads condition rapidly going down hill. Absolutely No mobility now. Brain function at an all time minimum. We had him placed in a very nice care home so mum could recover from her breakdown. Mum is a 70 year old beautiful lady who is a 10 year survivor of pancreatic cancer. She gets bouts of being in bed for few days every couple of months with stomach issues.

The step children are pushing my mother to get my step father back in the family home. Their rational is that it would be best for their father to come and pass away in the family home, this would entail modifications on the house. Care workers coming and going 4 times per day. 2 care workers at a time. They cant really give exact definitive times on when they will come....within 1 hour of so of set time. We would need specialists beds and equipment. Also as my step father is double incontinent it would mean that if he goes to number 1 or number 2 and the care workers have just left, he would have to sit there for may be up to 4 or 5 hours at a time, soiled, and to my mind at serious risk of infection, bed sores etc. He also even at the home tries to get out of bed or off the chair and falls down, So again this would mean having to call 111 or 999 depending on how bad it was.

So basically I don't think my mother would be able to cope, she wants to do the best thing for her husband as loves him dearly. She is being made to feel she should do this by the step children and being emotionally blackmailed into it. I DO NOT believe ultimately that this is the best care package for my step dad. Also I think she is being pressured into this, they are trying to say with all the support it will be more than manageable. I as her son obviously am very concerned it will be far too much strain, stress etc.

I would really appreciate comments from people who are going through the same type scenario … These things are always so so hard. I just need some advise.. And really appreciate any input and help in this regard..
Many thanks
L

No no no. What would be the point in all of that upheaval and who would benefit. Nobody as far as I can see. Certainly not your mum or step dad. Don't even consider it. Stand firm on this.

 

[love.dad.but..]

Absolutely not. Your mum's health is of equal importance and she will be on her own the remaining hours in the day dealing any challenges his decline will bring. To be honest I think the step children are whether intentionally or not being selfish in not considering the impact this would have on your mum and her welfare. Your step dad is receiving appropriate care now where his needs are being managed by a team 24 hours .. what would the benefit be to him to move him back if he has settled. If his dementia understanding has declined as you describe it will not be important to him to return home for end of life as his care home becomes his familiar comfortable surroundings...this is more about what they want rather than what may be best interests for your step dad and suggests they are in denial of just how hard it is one person even with carers visiting to cope especially someone like your mum who has her own health concerns which stress could exacerbate.

 

[Shedrech]

hi @LOLWRIGHT
the question about LPOAs is a good one
if your mum has these and is his sole Attorney, then decisions are hers (I am assuming her husband is considered to no longer have capacity to make decisions about his affairs himself)
if there are joint Attorneys, they must agree on decisions, or your mum could ask for a 'best interests' meeting to be arranged (talk with the care home manager and social worker or CPN) - or joint&several Attorneys when your mum can act alone, though it's better if Attorneys agree - this will depend on how the LPOAs were set up
if there zre no LPOAs, then it's probably too late to set these up znd it would be wise for your mum to apply to be her husband's deputy to be able to manage his financial affairs on his behalf

 

[Scriv]

Have you a Social Worker involved? It might be worthwhile to arrange a Best Interests Meeting - including the care staff at the home where he currently is? My relative had similar needs as your step father and I really do not think that his needs would be met at all at home even with carers coming in.
From experience again, carers come at the wrong time and for no fault of their own, it can't be arranged for them to coincide with your stepfather's continence issues. And your mum will not be able to handle that either.

 

[Witzend]

Yes, tell them to go ahead - IF they are prepared to move in and take over the 24 hour care their dad will need apart from carer visits - for as long as it takes.

It is grossly inconsiderate to expect your mother to do this again, when she found it far too much before. So often it's those who won't be doing much or all of the care who want to call the shots.

If your mother finds it hard to stand up to them, and is at all likely to feel 'guilted' into agreeing, then IMO you absolutely must do so on her behalf. When 24/7 care is needed, esp. in the sort of circs you describe, a good care home is the best place to provide it without anyone becoming utterly exhausted.

I have to say that the nasty cynic in me is wondering whether there is a financial motive here - it's not so uncommon when relatives who can't or won't do much of the caring argue for home rather than care home. Is he self funded?

 

[LOLWRIGHT]

Call their bluff - if it's so important for their Dad to be in a home with loved ones around him, why don't they take him in and make all those modifications to their own homes? Surely they love him enough?

Has anyone got POA?

Call their bluff - if it's so important for their Dad to be in a home with loved ones around him, why don't they take him in and make all those modifications to their own homes? Surely they love him enough?

Has anyone got POA?

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L

​

 

[LOLWRIGHT]

hello @LOLWRIGHT
a warm welcome to TP
thank goodness your mum has you to look out for her
and you are being considerate of your step father's needs too
from what you describe it is time for him to have 24hour care, and as you have assessed unless there is a team of live-in carers, that is very difficult to provide at home
besides which, your mum has the right to have her health and welfare considered equally
if she says she can no longer cope, that has to be taken seriously - and as his spouse she must be listened to
is it possible for you to take over contact with her step-children so they are not talking with her directly - you seem as though you would deal with them reasonably

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L
​

 

[LOLWRIGHT]

No no no. What would be the point in all of that upheaval and who would benefit. Nobody as far as I can see. Certainly not your mum or step dad. Don't even consider it. Stand firm on this.

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L
​

 

[LOLWRIGHT]

Absolutely not. Your mum's health is of equal importance and she will be on her own the remaining hours in the day dealing any challenges his decline will bring. To be honest I think the step children are whether intentionally or not being selfish in not considering the impact this would have on your mum and her welfare. Your step dad is receiving appropriate care now where his needs are being managed by a team 24 hours .. what would the benefit be to him to move him back if he has settled. If his dementia understanding has declined as you describe it will not be important to him to return home for end of life as his care home becomes his familiar comfortable surroundings...this is more about what they want rather than what may be best interests for your step dad and suggests they are in denial of just how hard it is one person even with carers visiting to cope especially someone like your mum who has her own health concerns which stress could exacerbate.

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L
​

 

[LOLWRIGHT]

hi @LOLWRIGHT
the question about LPOAs is a good one
if your mum has these and is his sole Attorney, then decisions are hers (I am assuming her husband is considered to no longer have capacity to make decisions about his affairs himself)
if there are joint Attorneys, they must agree on decisions, or your mum could ask for a 'best interests' meeting to be arranged (talk with the care home manager and social worker or CPN) - or joint&several Attorneys when your mum can act alone, though it's better if Attorneys agree - this will depend on how the LPOAs were set up
if there zre no LPOAs, then it's probably too late to set these up znd it would be wise for your mum to apply to be her husband's deputy to be able to manage his financial affairs on his behalf

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L
​

 

[LOLWRIGHT]

Yes, tell them to go ahead - IF they are prepared to move in and take over the 24 hour care their dad will need apart from carer visits - for as long as it takes.

It is grossly inconsiderate to expect your mother to do this again, when she found it far too much before. So often it's those who won't be doing much or all of the care who want to call the shots.

If your mother finds it hard to stand up to them, and is at all likely to feel 'guilted' into agreeing, then IMO you absolutely must do so on her behalf. When 24/7 care is needed, esp. in the sort of circs you describe, a good care home is the best place to provide it without anyone becoming utterly exhausted.

I have to say that the nasty cynic in me is wondering whether there is a financial motive here - it's not so uncommon when relatives who can't or won't do much of the caring argue for home rather than care home. Is he self funded?

Hi,

Thanks so much for your kind replies I totally agree with you. Im doing a group answer to all of your comments so far...

The thing is he is so far gone, he wont actually know where he is regardless, familiar surroundings wont be that way anymore anyway. As far as the step children taking him in there is no chance of that for multiple reasons. There is no way the step sons wife would allow it. The step daughter likes to direct and try to get everyone else to do everything without too much commitment back basically.

In terms of POA there is a financial POA which is for both siblings and my mother. It took the step son 14 months to put that in place as wanted to do it all himself, not involve legals which is all part of the control and poss a financial saving. So in that time my mum had to take Dad back and forward to the bank, in wheel chair, in rain, sometimes no parking etc. I know it takes a number of days, may be couple weeks to sort this out....May give you a little idea what I am up against here..

Its so tough as mum has wanted to try, she has been told by the step children that this is what you do if you truly love someone and that this is what everyone would do. Its pure emotional manipulation and as the care package is so much more inferior and leaves dad exposed on so many fronts, plus also them knowing the stress of all this on my mother would probably finish her...Leaves me to one conclusion......There is a very large differential financially versus the £1000 Plus per week its costing....Versus the home help scenario. I sincerely believe this is to try to retain as much liquid in the estate as possible, and secondary is all the other consequences..Their fathers quality of care, my mothers health, all of it. There are lots of other things that have led me to that conclusion but too much to go into...

Walking into walls here as they have made my mother feel totally guilty. So much so she was actually really considering this as a viable option and has been going through the evaluations, social workers, occupational therapists. The son seems to be able to get to these people and manipulate them even, We have had occupational therapist turn round to my mother very sternly and say "well you have got to try" and being very forceful with her....The list goes on and on....

I really appreciate all of your feedback, and know that everyone on here is going through their own versions of this...Feels so good to be able to open up and hear opinion on this..

Thanks so much.
L
​

 

[Beate]

A group answer only needs to be posted once, not six times, LOL. But glad we could help somehow. I hope your mother stays strong.

 

[Witzend]

As I said, you will have to stand up to all these people very firmly on your mother's behalf. Emotional bullying/blackmail in these sorts of circs is IMO unforgivable.
And as you say, given the state the poor man is in, he probably won't be aware of where he is anyway. And in any case, merely moving him at this stage could be very distressing for him.
All best wishes.

 

[LOLWRIGHT]

A group answer only needs to be posted once, not six times, LOL. But glad we could help somehow. I hope your mother stays strong.

Noted, wanted to be respectful and to reply to all...thanks

 

[love.dad.but..]

Unbelievable and inexcusably thoughtless for your stepdad and especially your mum...the act of true love is to recognise the kindest thing is to make the very hard decision of a care or nursing home because it is what the person with dementia needs not what family want.

'We have to try...' your mum has and it didn't work out and actually..no...nobody even a spouse has to care for another.

I am so cross on your mum's behalf. She is lucky to have you able to stand up to the stepchildren.

 

[LOLWRIGHT]

Unbelievable and inexcusably thoughtless for your stepdad and especially your mum...the act of true love is to recognise the kindest thing is to make the very hard decision of a care or nursing home because it is what the person with dementia needs not what family want.

'We have to try...' your mum has and it didn't work out and actually..no...nobody even a spouse has to care for another.

I am so cross on your mum's behalf. She is lucky to have you able to stand up to the stepchildren.

Thank you so much. She is the most caring, loving person you could ever know, and this is killing her a little bit each day,.,
Thanks for kind words....

 

[LOLWRIGHT]

Hi,.

Thanks for that, you are on the correct page,. yes self funded, substantial estate etc.
Nothing cynical about it..
thank you for your thoughts..
Best to you
L