Good afternoon everyone. My mother is due to be discharged from the rehabilitation ward of our local hospital after a stay of nearly four months following her recovery from sepsis (a miracle in itself). However, as well as having Alzheimer's, the sepsis has compromised her mobility even further, and she is now doubly incontinent. My father fondly thinks that he will be able to cope with this, alongside three carer visits per day (as she had prior to being so ill). She can no longer just use a walking stick, she needs to use a frame or be in her wheelchair. She has not really eaten for over eight weeks, declining most meals, and only consenting to eat a few more mouthfuls when my father is present at mealtimes. I've never seen her so thin, frankly, but she just doesn't seem to feel hunger at all, and isn't remotely bothered by all her favourite treats - chocolates, biscuits, cakes - that have been given to her by friends and family during her hospital stay. Her fluid intake has reduced drastically, and both of these things have obviously caused the hospital, and all of us, huge concern. However, her planned discharge date is next Wednesday, 14th December. My father flatly refuses to agree to any of the revised care plans that have been drawn up - two carers, four times a day, additional grab rails and suchlike. He insists that she's "far more mobile" than she was, she's eating better (anything more than nothing could be counted as "better"!!) and that he can cope with the double incontinence. He says that any more than three carer visits will be "far too intrusive". I will state now that he is 86 next Friday. My mother is 78. In desperation yesterday, because he was still insisting that no one, but no one, was going to be fitting a grab rail for her to be able to actually get into their bungalow, I telephoned the occupational therapist who has been trying his hardest to persuade my parents that the revised measures are vital. My sister and I have one other major concern about the bungalow - the bathroom is totally inaccessible for our mother. Father has applied for a grant to have it upgraded and adapted, but thus far, no works have actually been carried out. However, he insists that, until her illness, the carers used to give my mother a full body wash, and that this is "fine". This is what the OT told me on the phone yesterday. Father also managed to imply to the OT that, days before her illness, my mother was volunteering for a local charity, and generally doing loads of things that she was incapable of even then! The "volunteering" is at a local industrial museum, and she was only able to sit at the Reception desk and welcome people, nothing more. My father was the one messing around with oily old engines and taking school parties around. My sister and I think that he has been trying to convince everyone (she and myself included) that Mother is right back to what she was prior to her illness, and we think that this is because he thinks that the professionals want to put her in a home. I totally "get" that he wouldn't want this - they've been married 55 years, after all - but we know that he will not cope with her as she is now. The only solution to this impasse seems to be to allow him to try and get on with it, and just wait for the day it all goes horribly wrong in some way. We are just so worried, but he's being SO stubborn, more than I've ever known him to be, and my sister and I don't seem to be able to even make him reconsider, or think again. I don't expect anyone to come up with a solution to this, it is just really good to be able to type it all out to a group who will absolutely understand me! Any suggestions, though, will be very gratefully received, and I apologise for the long post. Thank you - Catherine xxx
Worried my dad won't cope with my mum
- Thread starter hollysmum
- Start date
Hello Catherine. What a worry for you. It is so awful just waiting for the crisis that you know is going to happen. You could write to the head of Adult Services saying that your mum is "a vulnerable person at risk" and outlining the problems. TBH, though, if your dad doesnt agree to any more help, then SS cannot force the issue. Once she comes home and your dad discovers how much harder it is, you could point him in the direction of contacting SS for a revised care plan and you can certainly contact the OH at a later time.
Unfortunately if your dad wont budge, I suspect that this may indeed be the outcome
Unfortunately if your dad wont budge, I suspect that this may indeed be the outcome
Is there someone from your Mum (or Dad's surgery) - the GP or a nurse or whatever - whom your Dad trusts who could breezily pop in a day after your Mum gets home ... and be ready to respond sensitively to any issues raised with offers of acceptable help? It's heartwarming the number of times my parents' doctors and nurses have been "on the way to another appointment and thought [they'd] just pop in to say "hello".
I too had this when dad was ill.
Both were 82 and been married 62 years. Mum was adamant that she would care for dad.
We ( her children) could see over time mum was getting more and more tired !!
Dad was double incontinent, had multiple falls ( ended up in hospital loads )
He was not eating properly, whatever mum cooked he turned his nose up at it.
Finally mum agreed to carers twice a day. But they were not always very good !!
Would turn up, ask dad " would you like to go to bed / get up ?? "
Dad would say no, then they left !! Sometimes didn't even turn up !!
Dad would fall far more than was documented as he then beg mum not to ring ambulance. Dad was 6 foot tall and a lot heavier than mum, she is only 5 feet tall and not strong !!
I knew I was loosing my lovely dad, but if this carried on would lose mum too.
Their GP, who they had for more than 30 years was the one who finally said to mum
" this can not continue, he has to go into care " it was for the best, even though we were all heartbroken.
Dad lasted 3 weeks, he developed pneumonia.
This had gone on for nearly 3 years, start to finish.
Your dad, would he listen to GP ?? Try and speak to GP , who could then have a chat with your dad, and make it clear your mum won't be going anywhere without his consent.
Take any help from any sources provided and explain to your dad that these are necessary to keep her well.
It's awful you have my total sympathy.
Your stuck at the moment at what is best for both.
My poor mum now has so much pain from helping dad up off the floor many times in her shoulders and back.
Now my mum has been diagnosed this year and it starts again !!! Hate this disease !!!
Both were 82 and been married 62 years. Mum was adamant that she would care for dad.
We ( her children) could see over time mum was getting more and more tired !!
Dad was double incontinent, had multiple falls ( ended up in hospital loads )
He was not eating properly, whatever mum cooked he turned his nose up at it.
Finally mum agreed to carers twice a day. But they were not always very good !!
Would turn up, ask dad " would you like to go to bed / get up ?? "
Dad would say no, then they left !! Sometimes didn't even turn up !!
Dad would fall far more than was documented as he then beg mum not to ring ambulance. Dad was 6 foot tall and a lot heavier than mum, she is only 5 feet tall and not strong !!
I knew I was loosing my lovely dad, but if this carried on would lose mum too.
Their GP, who they had for more than 30 years was the one who finally said to mum
" this can not continue, he has to go into care " it was for the best, even though we were all heartbroken.
Dad lasted 3 weeks, he developed pneumonia.
This had gone on for nearly 3 years, start to finish.
Your dad, would he listen to GP ?? Try and speak to GP , who could then have a chat with your dad, and make it clear your mum won't be going anywhere without his consent.
Take any help from any sources provided and explain to your dad that these are necessary to keep her well.
It's awful you have my total sympathy.
Your stuck at the moment at what is best for both.
My poor mum now has so much pain from helping dad up off the floor many times in her shoulders and back.
Now my mum has been diagnosed this year and it starts again !!! Hate this disease !!!
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Hollysmum.
Some one has to spell it out to your father, that mum will not be coming home, until the house is made safe for her, and a care package to look after them both is agreed and in place.
In order for him to do the best for her, then he has to accept help to help her.
He ain't goner like it.
But at the end of the day, unless mum is safe, she won't be allowed back. (He will not have any say, and indeed his attitude will make things worse.)
Officialdom have to "pussy foot" around, so's not to upset anyone.
Close family, or friends, can tell it, how it is.
Good luck
Bod
Some one has to spell it out to your father, that mum will not be coming home, until the house is made safe for her, and a care package to look after them both is agreed and in place.
In order for him to do the best for her, then he has to accept help to help her.
He ain't goner like it.
But at the end of the day, unless mum is safe, she won't be allowed back. (He will not have any say, and indeed his attitude will make things worse.)
Officialdom have to "pussy foot" around, so's not to upset anyone.
Close family, or friends, can tell it, how it is.
Good luck
Bod
Hello Hollysmum (& Margi29),
this all sounds far too familiar (although Dad was the main carer and Mum had AZ) then Dad ran himself into the ground looking after her (and hiding it from us) and he ended up in hospital.
We promised faithfully that we would never ever let either of them go into a care/nursing home. We had our fingers and toes crossed. It was enough to put their minds at ease, whilst we got the care organised. And whilst they are still currently at home, we do not feel bound by that "promise" to the extent that we would jeopardise their well being... it was a very necessary "love lie"
We initially got carers in by saying it was the only way Dad could come home and they'd just need the help for a short time...
Once the carers had been there for a fortnight, Dad realised what a great help they were and was happy to keep them on, even increasing their visits. I've probably blanked out some of the arguments
Then it became apparent that Dad also had Dementia and we brought a 24 hour live-in care in for a "couple of weeks" - she's still there today almost 2 years later...
The irony is, that they both convince themselves that they are in a care home and "want to go home" fairly regularly...
It is indeed a very cruel disease
Thinking of you both, rgds, Elizabeth
this all sounds far too familiar (although Dad was the main carer and Mum had AZ) then Dad ran himself into the ground looking after her (and hiding it from us) and he ended up in hospital.
We promised faithfully that we would never ever let either of them go into a care/nursing home. We had our fingers and toes crossed. It was enough to put their minds at ease, whilst we got the care organised. And whilst they are still currently at home, we do not feel bound by that "promise" to the extent that we would jeopardise their well being... it was a very necessary "love lie"
We initially got carers in by saying it was the only way Dad could come home and they'd just need the help for a short time...
Once the carers had been there for a fortnight, Dad realised what a great help they were and was happy to keep them on, even increasing their visits. I've probably blanked out some of the arguments
Then it became apparent that Dad also had Dementia and we brought a 24 hour live-in care in for a "couple of weeks" - she's still there today almost 2 years later...
The irony is, that they both convince themselves that they are in a care home and "want to go home" fairly regularly...
It is indeed a very cruel disease
Thinking of you both, rgds, Elizabeth
Thank you all so much for your replies - I knew I wouldn't be alone! Margi29 - my heart goes out to you, having to deal with this for a second time.
I have wondered if this is a "control" thing with my father, and that he doesn't want to feel that their lives are being taken over? I had the poor OT back on the phone to me yesterday afternoon, clearly quite frazzled after only just managing to get Father to agree to a single grab rail! My sister and I can't quite work out why he was so against having two, one each side of the step. This is so unlike my mild-mannered, cheerful and easy-going dad, and I know that it's partly because he is terrified of losing Mother, having come so close when she contracted the sepsis back in August. My sister has pleaded with him to just "go with the flow" in respect of the hospital's recommendations for care and equipment, I've pleaded with him, but no, it has to be his way or not at all. We know that he wants to have the same carers as she had before she went into hospital, but of course, this can't be guaranteed. I've been told that Adult Services have been notified, and that the social worker will be arranging for the Community Health team to visit once Mother is back at home, so she will be on their radar, so to speak. As regards the GP - our surgery is in a right old state at the moment, and my parents (and me, too) don't have an allocated GP, however, there is one GP left there who has dealt with my mother in the recent past, and I believe that they would trust her, should it be necessary to get someone on board.
My husband and I are going to visit Mother this evening, so we'll see if we can glean anything further - she had a mental capacity test late last week, and we've been waiting on the results.
Thank you all again for your sympathy and understanding, and very wise words. Catherine xxxx
I have wondered if this is a "control" thing with my father, and that he doesn't want to feel that their lives are being taken over? I had the poor OT back on the phone to me yesterday afternoon, clearly quite frazzled after only just managing to get Father to agree to a single grab rail! My sister and I can't quite work out why he was so against having two, one each side of the step. This is so unlike my mild-mannered, cheerful and easy-going dad, and I know that it's partly because he is terrified of losing Mother, having come so close when she contracted the sepsis back in August. My sister has pleaded with him to just "go with the flow" in respect of the hospital's recommendations for care and equipment, I've pleaded with him, but no, it has to be his way or not at all. We know that he wants to have the same carers as she had before she went into hospital, but of course, this can't be guaranteed. I've been told that Adult Services have been notified, and that the social worker will be arranging for the Community Health team to visit once Mother is back at home, so she will be on their radar, so to speak. As regards the GP - our surgery is in a right old state at the moment, and my parents (and me, too) don't have an allocated GP, however, there is one GP left there who has dealt with my mother in the recent past, and I believe that they would trust her, should it be necessary to get someone on board.
My husband and I are going to visit Mother this evening, so we'll see if we can glean anything further - she had a mental capacity test late last week, and we've been waiting on the results.
Thank you all again for your sympathy and understanding, and very wise words. Catherine xxxx
Hello Hollysmum (& Margi29),
this all sounds far too familiar (although Dad was the main carer and Mum had AZ) then Dad ran himself into the ground looking after her (and hiding it from us) and he ended up in hospital.
We promised faithfully that we would never ever let either of them go into a care/nursing home. We had our fingers and toes crossed. It was enough to put their minds at ease, whilst we got the care organised. And whilst they are still currently at home, we do not feel bound by that "promise" to the extent that we would jeopardise their well being... it was a very necessary "love lie"
We initially got carers in by saying it was the only way Dad could come home and they'd just need the help for a short time...
Once the carers had been there for a fortnight, Dad realised what a great help they were and was happy to keep them on, even increasing their visits. I've probably blanked out some of the arguments
Then it became apparent that Dad also had Dementia and we brought a 24 hour live-in care in for a "couple of weeks" - she's still there today almost 2 years later...
The irony is, that they both convince themselves that they are in a care home and "want to go home" fairly regularly...
It is indeed a very cruel disease
Thinking of you both, rgds, Elizabeth
Thank you Elizabeth.
Dad always said from his early 60s " please don't put me in a home " but am afraid for us to keep mum well that was not possible. Mum was gutted that she had to let him go.
How lovely that you have got your mum and dad together, in their own home.
Mum always said " I won't be a burden to you, put me in a home " but we have moved her out of her old house and she is in sheltered housing now.
Warden control, me and sister 5 mins away, mum says she loves it there, so all good at moment.
We keep a close eye on her. Have learned the hard way not to contradict her, or loose our temper when she asks same repeated questions and when we have the obscure made up stories that pop up we just try and go with the flow.
Best wishes
Hi
On subject of mental capacity test, mum had one July and scored 22 out of 30. Had one again couple weeks ago and scored 21 out of 30.
They can tell you when test done results straight away.
Mum never ever knows what day it is !!! Constantly asks me !!
Actually had second test at her home. She was frightened at the clinic I took her to for first test, so arranged for nurse to do ( by GP ) at mums home.
The nurse did test, asked mum what day it was?? Mum, no prompting " Monday " and told him exact date as well !!
Nearly fell off my chair with shock
Hello Catherine,
like you, I think Mum & Dad's initial resistance was a feeling of losing control, along with a feeling of intrusion - which if I'm honest I can completely understand.
When I put myself in their shoes, I know I'd be just as resistant (hubby has strict orders to buy me a one way ticket to Switzerland!)
We did find that "advice" from the Doctor (who they knew quite well - but not a long term relationship) was always received more positively than anything from the family. So if your Mum's new-ish Dr has their respect, I'd recommend building a relationship with her.
I have written several letters to Mum & Dad's GP and emails to their Consultants and have had several 'phone conversations with them. I always thank them for all their continuing support (!) and then ask them for more
Margi29, you made me smile with your tale about your Mum's memory test. It's strange how all the stops can sometimes be pulled out.
When Dad's consultant came to their home once to do a memory test on Dad, Mum was in the room. Dad was struggling with "Which town do you live in?" even when the consultant gave him multiple choices and Mum, trying to be helpful, pipes up with "Of course, we don't live here" - bless.
rgds, Elizabeth.
like you, I think Mum & Dad's initial resistance was a feeling of losing control, along with a feeling of intrusion - which if I'm honest I can completely understand.
When I put myself in their shoes, I know I'd be just as resistant (hubby has strict orders to buy me a one way ticket to Switzerland!)
We did find that "advice" from the Doctor (who they knew quite well - but not a long term relationship) was always received more positively than anything from the family. So if your Mum's new-ish Dr has their respect, I'd recommend building a relationship with her.
I have written several letters to Mum & Dad's GP and emails to their Consultants and have had several 'phone conversations with them. I always thank them for all their continuing support (!) and then ask them for more
Margi29, you made me smile with your tale about your Mum's memory test. It's strange how all the stops can sometimes be pulled out.
When Dad's consultant came to their home once to do a memory test on Dad, Mum was in the room. Dad was struggling with "Which town do you live in?" even when the consultant gave him multiple choices and Mum, trying to be helpful, pipes up with "Of course, we don't live here" - bless.
rgds, Elizabeth.
Hello Catherine,
like you, I think Mum & Dad's initial resistance was a feeling of losing control, along with a feeling of intrusion - which if I'm honest I can completely understand.
When I put myself in their shoes, I know I'd be just as resistant (hubby has strict orders to buy me a one way ticket to Switzerland!)
We did find that "advice" from the Doctor (who they knew quite well - but not a long term relationship) was always received more positively than anything from the family. So if your Mum's new-ish Dr has their respect, I'd recommend building a relationship with her.
I have written several letters to Mum & Dad's GP and emails to their Consultants and have had several 'phone conversations with them. I always thank them for all their continuing support (!) and then ask them for more
Margi29, you made me smile with your tale about your Mum's memory test. It's strange how all the stops can sometimes be pulled out.
When Dad's consultant came to their home once to do a memory test on Dad, Mum was in the room. Dad was struggling with "Which town do you live in?" even when the consultant gave him multiple choices and Mum, trying to be helpful, pipes up with "Of course, we don't live here" - bless.
rgds, Elizabeth.
Yes Elizabeth
Memory tests can be quite educational !!
Back five years ago when dad had memory tests, my mum was sat with me and dad while consultant asked dad questions.
Bless him, dad not a clue on most questions and my mum kept answering for him !!
I had to intervene, and say " mum, you are not in a quiz " mum loves the quiz show the chase. I personally think she has a soft spot for Bradley !!
Now my poor mum is due more memory tests in new year.
