Saying Hi finally.

SuperFab

Registered User
Jun 20, 2023
14
0
Hi there.
Finally plucking up the courage to say hi. I've been a member of the forum for a while and find it an invaluable resource.

I've had caring responsibilities for both my parents - I'm their son. They live(d) in Nottingham, I live Berkshire/Hampshire border.
Dad was a Parkinson's sufferer and slowly developing Alzheimers; Mum was his carer. In September '22 Mum had a stroke and a further fall February '23 and has since developed Mixed Dementia.
Since then I have been coming up every Saturday and staying 4 days a week. Plus responsible for all the logistical back end responsibilites - finances, managing relationship with social services, care company, nursing home etc.

Dad had a fall in March last year and long story short ended up in a nursing home from September last year. I visited him every day I'm up here as well as supporting Mum.

Mum (85 years old) has developed significant apathy and literally doesn't move all day so her mobility has declined alot, but I've been managing it by getting carers to get her to move to kitchen to choose food at meal times plus also physio visits twice a week which is expensive at £70/visit.
She also has a very bad memory and can often not finish a sentence because she can't remember what she meant to say. She still recognises people very easily.
But her apathy is so bad, she won't ever change TV channel/volume. Or even switch the TV on or off. I have to instruct the carers down to minutae instructions eg at breakfast leave TV on ITV and volume 33 so she can watch This Morning.
If her hearing aids aren't in, she won't say, and if the battery runs out she won't say.
She eats very little and managing her weight has been a battle including use of Fortisip. But we were getting there and I managed to get her weight up from 8st 5lbs to 9st 4lbs. Although it does feel we have entered a new chapter now as she approximately 6 weeks ago, suddenly stopped eating and ate much less. For no reason.
Although it's been difficult and my life has been completely turned upside down, we had been managing with the 'structure' I had in place and were doing 'ok' in the scheme of things.
However unfortunately 5 weeks ago Dad passed away just about to turn 88 - he had become very fragile.
I thought Mum was ok - she was quite philosophical about it - 'we knew it was going to happen at some point'.
But since the funeral two weeks ago, things have deteriorated quite significantly and Mum is literally not eating. That combined with 2 days in bed last week - she didn't want to get up - has resulted in her becoming very weak to the point where she now cannot come down the stairs and often sits half way down which causes problems with getting her up again.
This is despite the physio visits.
I feel we are entering a new chapter now, and I either have to get a stairlift in, or alternatively think about a care home. One of Mum's friends is in a local nursing home and loves it. i'm thinking now Dad is no longer here (even though he hadn't been home for over a year after his fall, his passing is still psychologically huge), maybe this environment might be good for her if she is in nice place and her friend is here.
The food situation is getting very bad now, and whereas before it felt like playing a game of chess that I was winning, Mum won't even have the Fortisip now.

I'm lost now if I'm honest.
I don't know how things will manifest. I feel like I'm out of fight now with my Mum. It's gone next level. I'm preparing myself for a rapid deterioration. If things were how they were two months ago, staying at home potentially for a while would still be an option. But I'm not longer sure.
I mean if you're 85, and have lost your spouse, and you are aware of how physically and cognitively you are declining, how can you not think 'what else is there'?
Anway, if anyone has similar experiences they could share that might help. It would be appreciated.

Take care.
 

Knitandpurl

Registered User
Aug 9, 2021
953
0
Lincolnshire
Hi there.
Finally plucking up the courage to say hi. I've been a member of the forum for a while and find it an invaluable resource.

I've had caring responsibilities for both my parents - I'm their son. They live(d) in Nottingham, I live Berkshire/Hampshire border.
Dad was a Parkinson's sufferer and slowly developing Alzheimers; Mum was his carer. In September '22 Mum had a stroke and a further fall February '23 and has since developed Mixed Dementia.
Since then I have been coming up every Saturday and staying 4 days a week. Plus responsible for all the logistical back end responsibilites - finances, managing relationship with social services, care company, nursing home etc.

Dad had a fall in March last year and long story short ended up in a nursing home from September last year. I visited him every day I'm up here as well as supporting Mum.

Mum (85 years old) has developed significant apathy and literally doesn't move all day so her mobility has declined alot, but I've been managing it by getting carers to get her to move to kitchen to choose food at meal times plus also physio visits twice a week which is expensive at £70/visit.
She also has a very bad memory and can often not finish a sentence because she can't remember what she meant to say. She still recognises people very easily.
But her apathy is so bad, she won't ever change TV channel/volume. Or even switch the TV on or off. I have to instruct the carers down to minutae instructions eg at breakfast leave TV on ITV and volume 33 so she can watch This Morning.
If her hearing aids aren't in, she won't say, and if the battery runs out she won't say.
She eats very little and managing her weight has been a battle including use of Fortisip. But we were getting there and I managed to get her weight up from 8st 5lbs to 9st 4lbs. Although it does feel we have entered a new chapter now as she approximately 6 weeks ago, suddenly stopped eating and ate much less. For no reason.
Although it's been difficult and my life has been completely turned upside down, we had been managing with the 'structure' I had in place and were doing 'ok' in the scheme of things.
However unfortunately 5 weeks ago Dad passed away just about to turn 88 - he had become very fragile.
I thought Mum was ok - she was quite philosophical about it - 'we knew it was going to happen at some point'.
But since the funeral two weeks ago, things have deteriorated quite significantly and Mum is literally not eating. That combined with 2 days in bed last week - she didn't want to get up - has resulted in her becoming very weak to the point where she now cannot come down the stairs and often sits half way down which causes problems with getting her up again.
This is despite the physio visits.
I feel we are entering a new chapter now, and I either have to get a stairlift in, or alternatively think about a care home. One of Mum's friends is in a local nursing home and loves it. i'm thinking now Dad is no longer here (even though he hadn't been home for over a year after his fall, his passing is still psychologically huge), maybe this environment might be good for her if she is in nice place and her friend is here.
The food situation is getting very bad now, and whereas before it felt like playing a game of chess that I was winning, Mum won't even have the Fortisip now.

I'm lost now if I'm honest.
I don't know how things will manifest. I feel like I'm out of fight now with my Mum. It's gone next level. I'm preparing myself for a rapid deterioration. If things were how they were two months ago, staying at home potentially for a while would still be an option. But I'm not longer sure.
I mean if you're 85, and have lost your spouse, and you are aware of how physically and cognitively you are declining, how can you not think 'what else is there'?
Anway, if anyone has similar experiences they could share that might help. It would be appreciated.

Take care.
So sorry @SuperFab to read your struggles and for the loss of your Dad. You have done a wonderful job caring for them both. I think maybe it is time to move your Mum to a Care Home. It sounds as if it is only your wonderful care that has kept her going so long, not wanting to eat, and then not eating are signs of late stage dementia, I think the 24 hour help in a Home would help her, and you. And you never know the extra stimulation might even bring about an improvement. My Mum loved her Home and was happy there, after initially hating it and refusing to leave her room.
 

Banjomansmate

Registered User
Jan 13, 2019
5,791
0
Dorset
It is unlikely that a reputable stair lift supplier will agree to fit one for someone with dementia. Your option of a good Care Home sounds like the most sensible thing to do.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,508
0
Nottinghamshire
Glad the forum has been of help @SuperFab, and glad you posted.
I agree with the other posters that I think now is the time for a care home for your mum. The main decision will be do you want her to stay in Nottingham or move nearer you. I think that depends on who else is likely to visit your mum and perhaps also on finances. I used to live in South-West London and mum was in a care home nearby, so I could visit regularly. Three years ago I moved to Nottinghamshire and decided to move mum to a home here. She had no one else than me that visited and I was worried about getting to her in time if there was a crisis. The two care homes were very similar, but the one up here much cheaper, which meant her money was lasting longer. Maybe see if you can get her into the home with her friend to start with and then see how thing go?
 

jennifer1967

Registered User
Mar 15, 2020
25,684
0
Southampton
Hi there.
Finally plucking up the courage to say hi. I've been a member of the forum for a while and find it an invaluable resource.

I've had caring responsibilities for both my parents - I'm their son. They live(d) in Nottingham, I live Berkshire/Hampshire border.
Dad was a Parkinson's sufferer and slowly developing Alzheimers; Mum was his carer. In September '22 Mum had a stroke and a further fall February '23 and has since developed Mixed Dementia.
Since then I have been coming up every Saturday and staying 4 days a week. Plus responsible for all the logistical back end responsibilites - finances, managing relationship with social services, care company, nursing home etc.

Dad had a fall in March last year and long story short ended up in a nursing home from September last year. I visited him every day I'm up here as well as supporting Mum.

Mum (85 years old) has developed significant apathy and literally doesn't move all day so her mobility has declined alot, but I've been managing it by getting carers to get her to move to kitchen to choose food at meal times plus also physio visits twice a week which is expensive at £70/visit.
She also has a very bad memory and can often not finish a sentence because she can't remember what she meant to say. She still recognises people very easily.
But her apathy is so bad, she won't ever change TV channel/volume. Or even switch the TV on or off. I have to instruct the carers down to minutae instructions eg at breakfast leave TV on ITV and volume 33 so she can watch This Morning.
If her hearing aids aren't in, she won't say, and if the battery runs out she won't say.
She eats very little and managing her weight has been a battle including use of Fortisip. But we were getting there and I managed to get her weight up from 8st 5lbs to 9st 4lbs. Although it does feel we have entered a new chapter now as she approximately 6 weeks ago, suddenly stopped eating and ate much less. For no reason.
Although it's been difficult and my life has been completely turned upside down, we had been managing with the 'structure' I had in place and were doing 'ok' in the scheme of things.
However unfortunately 5 weeks ago Dad passed away just about to turn 88 - he had become very fragile.
I thought Mum was ok - she was quite philosophical about it - 'we knew it was going to happen at some point'.
But since the funeral two weeks ago, things have deteriorated quite significantly and Mum is literally not eating. That combined with 2 days in bed last week - she didn't want to get up - has resulted in her becoming very weak to the point where she now cannot come down the stairs and often sits half way down which causes problems with getting her up again.
This is despite the physio visits.
I feel we are entering a new chapter now, and I either have to get a stairlift in, or alternatively think about a care home. One of Mum's friends is in a local nursing home and loves it. i'm thinking now Dad is no longer here (even though he hadn't been home for over a year after his fall, his passing is still psychologically huge), maybe this environment might be good for her if she is in nice place and her friend is here.
The food situation is getting very bad now, and whereas before it felt like playing a game of chess that I was winning, Mum won't even have the Fortisip now.

I'm lost now if I'm honest.
I don't know how things will manifest. I feel like I'm out of fight now with my Mum. It's gone next level. I'm preparing myself for a rapid deterioration. If things were how they were two months ago, staying at home potentially for a while would still be an option. But I'm not longer sure.
I mean if you're 85, and have lost your spouse, and you are aware of how physically and cognitively you are declining, how can you not think 'what else is there'?
Anway, if anyone has similar experiences they could share that might help. It would be appreciated.

Take care.
i would stop the physio to be honest. i dont think she is getting any benefit and £140 a week is a lot of money when not working. i would suggest care home. looks like her husband death has accelerated her dementia. could you do respite with a view to permanent?
 

SherwoodSue

Registered User
Jun 18, 2022
777
0
i would stop the physio to be honest. i dont think she is getting any benefit and £140 a week is a lot of money when not working. i would suggest care home. looks like her husband death has accelerated her dementia. could you do respite with a view to permanent?
Yes. I agree stop the physio. I can remember making that decision for my mum. Totally agree with the huge apathy symptom. I don’t think mum even cried when dad died. A real dementia flatness.
I push fluids on my mum. Nag for chest clearances to help her oxygen levels but will ease off doing so very soon. I don’t want to be mums chief nag. I want to be her daughter. I think like me you have done so much but time to see when deficits are no longer reversible and let others fulfill the need for care.
 

SuperFab

Registered User
Jun 20, 2023
14
0
So sorry @SuperFab to read your struggles and for the loss of your Dad. You have done a wonderful job caring for them both. I think maybe it is time to move your Mum to a Care Home. It sounds as if it is only your wonderful care that has kept her going so long, not wanting to eat, and then not eating are signs of late stage dementia, I think the 24 hour help in a Home would help her, and you. And you never know the extra stimulation might even bring about an improvement. My Mum loved her Home and was happy there, after initially hating it and refusing to leave her room.
Hi @Knitandpurl
Thank you for the response. It looks like we might be headed that way. Physio came over and recognised the significant change in her in the past few weeks - and seems to think the descending stairs issue is cognitive more than anything.
A different physio is going in Friday with a different pair of eyes (the physio's are husband and wife team who have been seeing my mother for while - the wife for over a year and who has a connection with her too).

Part of me feels this might be Mum grieving as well so still not 100% decided. First step is to take Mum to visit her friend in her nursing home (which her friend really enjoys) and take it from there.
I'm potentially happy to have a stairlift temporarily as an immediate next step.
Yesterday literally zero eating though - and there doesn't appear to be any acknowledgement of the importance of eating impacting weight, energy, strength etc. Just a nod, and then back to 'normal'.
 

SuperFab

Registered User
Jun 20, 2023
14
0
It is unlikely that a reputable stair lift supplier will agree to fit one for someone with dementia. Your option of a good Care Home sounds like the most sensible thing to do.
Hi @Banjomansmate
My mother is of a stage where she would not try and venture using a stair lift herself.
She only gets up when coaxed. Does nothing of her own accord (getting up, TV channel, volume etc) so there would be no risk.
 

SuperFab

Registered User
Jun 20, 2023
14
0
Glad the forum has been of help @SuperFab, and glad you posted.
I agree with the other posters that I think now is the time for a care home for your mum. The main decision will be do you want her to stay in Nottingham or move nearer you. I think that depends on who else is likely to visit your mum and perhaps also on finances. I used to live in South-West London and mum was in a care home nearby, so I could visit regularly. Three years ago I moved to Nottinghamshire and decided to move mum to a home here. She had no one else than me that visited and I was worried about getting to her in time if there was a crisis. The two care homes were very similar, but the one up here much cheaper, which meant her money was lasting longer. Maybe see if you can get her into the home with her friend to start with and then see how thing go?
Hi @Sarasa
Thanks for the reply. I have thought about this. Whilst it would be more convenient to me to move her south, I think the benefit would be much greater remaining in her home town:
1) My half sister and nieces would still be able to visit. They still bring life into her life
2) If the nursing home I'm thinking of is a 'go' - it houses one of her friends which would be a benefit. That friend is also visited regularly by another of what was her social group. So the 3 of them could get together which would be nice.
3) Cost - as you say. My parents house in Nottingham is valued less relative to the south. It also has an equity release charge on it which reduces available funds further. That combined with higher fees down south means the funds won't stretch as far.
So it makes economic, and social sense to keep her up north.
I'm ok with continuing to totally disrupt my life to accommodate this for the time being - I see a likely way forward of me buying the house and moving north temporarily to free up funds (friends have said they would put me up during the week for a night so I can still work in London without exhorbitant cost which would allow me to still maintain friendships), and give me a base up north to visit.
I'd do the house up - it is in need of repair and hopefully sell at a higher price which would still then allow me to buy down south when 'this is over'.

So many logistical decisions...
 

SuperFab

Registered User
Jun 20, 2023
14
0
i would stop the physio to be honest. i dont think she is getting any benefit and £140 a week is a lot of money when not working. i would suggest care home. looks like her husband death has accelerated her dementia. could you do respite with a view to permanent?
Likely agreed - although this could be grief we are seeing. I'm moving more to that view though especially after physio visit yesterday and their prognosis.
 

SuperFab

Registered User
Jun 20, 2023
14
0
Yes. I agree stop the physio. I can remember making that decision for my mum. Totally agree with the huge apathy symptom. I don’t think mum even cried when dad died. A real dementia flatness.
I push fluids on my mum. Nag for chest clearances to help her oxygen levels but will ease off doing so very soon. I don’t want to be mums chief nag. I want to be her daughter. I think like me you have done so much but time to see when deficits are no longer reversible and let others fulfill the need for care.
Thanks @SherwoodSue
It's interesting isn't it - you think home must be where the heart is until it absolutely isn't, and that a care/nursing home is the death knell (it was for my Dad unfortunately - long story, but I can view it objectively), but there are many stories of people being happy in a care home - my mother's friend very much a case in point (and your story too).
So...you never know...I'm hoping the visit to see her friend really opens her eyes to the possibility.
Thanks.
 

Knitandpurl

Registered User
Aug 9, 2021
953
0
Lincolnshire
Visit to friend, suggestion of ‘holiday’ with the friend and hopefully move forward from there, get her settled in before the nights draw in and maybe raise sundowning issues. Would be great her having friend in the Home and visiting. 🤞🙏