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What to do for the best for mother

Bunty2410

Registered User
Apr 28, 2020
39
My mum is 87 and was diagnosed with mixed dementia about 3 months ago having refused a referral in 2016 to a memory clinic.
She lives in a rural area 2 hours away from both myself and my sister and always said that living 2 hours away was close enough. She has refused to move closer and over the last couple of years declined offers to move in with my family. Coinciding with the Pandemic Carers started going in twice a day to support taking of medication ( she stated she was taking her drugs but evidence indicated otherwise) she has had an admission with urinary sepsis after we found her lying in the bath for 15 hours. This episode knocked her for six. We’ve had diagnosis of her Alzheimers and Vacular dementia via phone then being told of this at her kitchen table. 4 weeks ago she was found by the paper boy lying on her drive having sustained a fractured hip resulting in 2 1/2 weeks in hospital. We Now have Carers 4 times a day and an awake Carer at night. We’ve moved the bedroom downstairs etc. She is a shadow of her former stubborn, fiercely independent self. We’ve had 2 phone calls this weekend from the Carers about broken hearing aids and the second yesterday evening that she wouldn’t let the Carers in the house ( she’d put a key in the door). My sister and I drove up to find her asleep in the chair “ oh what are you doing here?” having no recollection of the evenings events. She can’t do anything for herself this being compounded by being frame dependent.
I am tying myself knots deciding what to do. She’s always maintained she’d stay in her home & not want to go into care I made the promise that I would respect this which in retrospect was not wise. I don’t want to go home to live with her (I’d become a prisoner with her) although my husband has said he’d do this, My son has moved back home from London since Covid and is working from home and would find it emotionally difficult to see his grandmother deteriorate on a day to day basis and to place her in a home even though near us would be a broken promise. Any words of wisdom please?
 

Rosettastone57

Registered User
Oct 27, 2016
1,352
Hi @Bunty2410 welcome to the forum. I'm sure you will get lots of advice here, but on reading your post, my initial thoughts are that your mum needs to be in residential care. There comes a point where the needs of the person with dementia outweigh what they want to happen. I think you have now reached that point. I'm sure that is not what you want to hear, but your mum would benefit from a whole team 24/7 looking after her, where she would be safe. My mother in law had mixed dementia and my husband always said she wouldn't go into a home, but it got to the stage where she was a high falls risk and could do nothing for herself. Eventually she went into hospital and into a care home. All the scenarios you are describing, the falls, the lack of cooperation with carers, being frame dependent, lack of recollections, broken hearing aids , all point to a safe environment, in a care home setting. It's not when the carers are there, that is the problem, its when they are not.
 

lemonbalm

Registered User
May 21, 2018
582
Hello @Bunty2410 . Welcome to the tied in knots club, where stubborn parents and guilty consciences abound. I think you already know deep down that your mum really needs 24 hour care and will only really be safe in a care home. Better a broken promise than a broken mum. I also promised my mum years ago not to put her in a care home. She has now been in a specialist dementia home for two years, although most of the time she thinks she is in a pub. To be honest, it's not always gone smoothly but I know that she is well looked after, in a safe environment with staff who genuinely care for her. I wonder if you could try respite and tell your mum that it's just while she recovers/gets better/gets stronger or persuade her that it's a bit of a holiday and take it from there? At least think about it. It's a hard decision, so keep posting for support and advice. If your mum would be self funding, perhaps take a look at https://www.carehome.co.uk/ if you haven't already, just to put some feelers out. My mum was self funding and social services were never involved but I understand that everyone is entitled to a social services assessment if your mum hasn't already had one.
 

lemonbalm

Registered User
May 21, 2018
582
it is a very difficult thing to do @Bunty2410 . However, there are many members on here who found their loved one really thrived in residential care, often against all expectations. Keep posting and we'll do our best to help you through, whatever you decide. There is always support for you here.
 

MrsChristmas

Registered User
Jun 1, 2015
178
Agree with Lemonbalm and Rosetta about knowing ‘deep down’ it’s the right decision and you’ve already answered your own question.

I’m at the same stage as you where my mum is probably in the later stages now and has just started being in continent. Shes feircly independent and has fought us every step of the way to not have care at all which is admirable but taken it’s toll me. I live next as her carer, living on my own with no support.

Mum should have gone into care a year ago but there was no support from SS or my brother and I’ve bern left to soldier on my own. I’m now moving away so SS have choice but to step in.

Dont get to that point do it so Mum has time to get used it and you can visit as her daughter not her carer.

Just my thoughts
 

Bunty2410

Registered User
Apr 28, 2020
39
Agree with Lemonbalm and Rosetta about knowing ‘deep down’ it’s the right decision and you’ve already answered your own question.

I’m at the same stage as you where my mum is probably in the later stages now and has just started being in continent. Shes feircly independent and has fought us every step of the way to not have care at all which is admirable but taken it’s toll me. I live next as her carer, living on my own with no support.

Mum should have gone into care a year ago but there was no support from SS or my brother and I’ve bern left to soldier on my own. I’m now moving away so SS have choice but to step in.

Dont get to that point do it so Mum has time to get used it and you can visit as her daughter not her carer.

Just my thoughts
Thank you Mrs Christmas
 

Palerider

Registered User
Aug 9, 2015
1,946
North West
Hmm difficult for you having made a promise @Bunty2410 -but in the world of dementia we learn quickly not to make them. I always agreed with mum that I would keep her at home as per her wish, but despite trying really hard, even moving in with her in the end it became impossible as I also work full-time. Thats not to say it was all bad, we had four good years and mum was ok until she took a series of declines, and very quickly at that.

The problem as others have pointed out is that the care needs of someone with progression of their dementia change and what was once workable becomes unworkable and these changes continue, requiring more and more dependency on others. Your mum lives two hours away and is refusing help and unable to recognise the growing issues she has on her own (common in dementia). Even if you lived with her you would still be faced with some difficulties as one person wouldn't be able to cope on their own as the condition becomes worse. I don't know if you have prior experience, but caring for someone with dementia as they advance requires more than just being there to help -it becomes all consuming, as you will find on many threads on here, often leaving people emotionally and physically drained amongst other issues. Good intentions can end up being regrets.

There is no right or wrong way forward, but (and there is always a but), think very carefully before comitting to well intended moving in. Its sounds like your mum would be better in a care home, and I know how that feels, but in hindsight after dealing with my own mum, it was the right thing to do in the end. Its a very tough and emotional decision to make, but unless there are good and workable alternatives, it might be the best way forward.
 

Jale

Registered User
Jul 9, 2018
489
I promised my Mum that she would never go into a home and sadly had to go back on my word. I won't bore you with the reasons/events that led to that but Mum has been in a nursing home now for nearly 2 years, and the relief of knowing that her needs are met and most importantly knowing that she is safe is huge. Mum thinks that she is in a hospital and that the carers are nurses and we have done nothing to try and change that, and things have not always been easy at times but I know deep down that it was the right decision - I still have the guilt monster visit but try to ignore him!

From reading your post I think it is time for your Mum's safety that the time has come for you to seriously think about care/nursing homes. Best wishes
 

Tee25

New member
Apr 29, 2020
6
My Mum went into a care home in March following a blood transfusion and having other tests done.She has gone downhill quickly.I have to move her to another home now as she can't care for her any more now with her bahaviour.How did you get the diagnosis?I am so worried where i won't be able to view another home or pack her things up.I need to tell her the news aswell.
 

Bunty2410

Registered User
Apr 28, 2020
39
My Mum went into a care home in March following a blood transfusion and having other tests done.She has gone downhill quickly.I have to move her to another home now as she can't care for her any more now with her bahaviour.How did you get the diagnosis?I am so worried where i won't be able to view another home or pack her things up.I need to tell her the news aswell.
She was admitted in 2016 for a chest infection, it was standard practice then to do a mini memory test which flagged up a problem so she was referred to a memory clinic, but when it came to it she declined to go. As she declined I insisted that she be rereferred and the rest as they say is history. If you have concerns ask to discuss them with her GP, do you have POA for heath and wellbeing?
 

MartinWL

Registered User
Jun 12, 2020
238
I agree with the others who have posted here that residential care is the best solution. It may have been unwise to promise not to put her in a home but I expect you also promised to take care of her so there is a conflict. My mother is in a care home and takes every opportunity to say she wants to go back to her own home but she would be at high risk at home even with a lot of carer support because she has a record of falls causing injury, combined with several other medical conditions. There is a big complication of how my father (dementia patient) could handle her homecoming although he wants it too but does understand that he could not cope with her care. Like all the others here I have the guilt issue but at the end of the day I know she is safe and professionally looked after in the care home, and that tends to overcome the other doubts.
 

Bunty2410

Registered User
Apr 28, 2020
39
I am seriously considering moving my mother into our home, if I can give her at least 6 months of time spent with her family then I can live with myself when the time comes when I transfer her care to others. ( I am not totally self sacrificial as I will have a morning Carer to assist her with personal care and a cleaning lady)
do any of you have any experience of this relating to legal transparency? My sister and I have both POAs and can can act jointly or severally. I am acutely aware of my responsibilities to act in my mothers best interests but also my accountably to my sister who has less to do for my mother and her extensive affairs but still has a say.
Do I need to get a document drawn up re: my mothers financial contribution to the household expenditure?
 

Sarasa

Registered User
Apr 13, 2018
1,704
hi @Bunty2410 , I would think long and hard before committing to have your mother come and live with you. Could you arrange for her to come for a fortnight to see how it goes? If it seems to work you could then put all the financial and legal stuff in place. It's just that your mother seems to have a lot of care needs and even with carers coming in a lot of the responsibility will be on your shoulders and it could get very tough very quickly. What do other members of your family think?
When my mother was getting unsafe at home my husband made it very clear he didn't want her moving in with us. I was fine with that as I knew that I just didn't have the patience to cope with her demands, I struggled visiting her at home twice a week as it was. Also our house is very small and it would have meant a major re-organisation to make it work. Instead we moved mum to care home near us. She was far from happy about it, but as well as being unsafe at home, she was unhappy there too. At least she is safe now (well as safe as she can be in these troubling times).
I have a file with all the financial stuff and I inform my brother when I make decisions. We both have POA, but he's always been more hands off than me, and is now seriously ill so isn't able to help much anyway. An example when I sold mum's flat I did it using the POA. My brother emailed the solicitor to say he agreed to my actions, but took no further part in organising it all.
I'm sure others who have moved a parent in with them will have some useful advice.
 

Bunty2410

Registered User
Apr 28, 2020
39
hi @Bunty2410 , I would think long and hard before committing to have your mother come and live with you. Could you arrange for her to come for a fortnight to see how it goes? If it seems to work you could then put all the financial and legal stuff in place. It's just that your mother seems to have a lot of care needs and even with carers coming in a lot of the responsibility will be on your shoulders and it could get very tough very quickly. What do other members of your family think?
When my mother was getting unsafe at home my husband made it very clear he didn't want her moving in with us. I was fine with that as I knew that I just didn't have the patience to cope with her demands, I struggled visiting her at home twice a week as it was. Also our house is very small and it would have meant a major re-organisation to make it work. Instead we moved mum to care home near us. She was far from happy about it, but as well as being unsafe at home, she was unhappy there too. At least she is safe now (well as safe as she can be in these troubling times).
I have a file with all the financial stuff and I inform my brother when I make decisions. We both have POA, but he's always been more hands off than me, and is now seriously ill so isn't able to help much anyway. An example when I sold mum's flat I did it using the POA. My brother emailed the solicitor to say he agreed to my actions, but took no further part in organising it all.
I'm sure others who have moved a parent in with them will have some useful advice.
I saw her yesterday physically she has improved. Cognatively still a pickle but still her. she lives in a big house that is locked doesn’t go outside and only sees carers. Not much of an existence. If she comes to me she’s with family and can sit in the garden, can’t say I’m not apprehensive though
 

Soroptimist

Registered User
Jun 10, 2018
64
Hi @Bunty2410
I think it depends on the individual, as personality makes a difference and so does the way in which the dementia progresses. I have no regrets about getting my mum in a home when we did, as we were all running ragged around her. When she was still at home we had people to take her out for a few hours a day, which worked well for a few months. But it got to the stage where she was anxious and cross most of the time, even with us helping her do things she wanted to do. It wasn't an option for her to live with me as she needed someone with her 24/7, so I would have needed to become a 24/7 carer, which is an impossible job I was not willing to take on. Staying at her home for as long as she did made it possible for her to potter around her garden and have familiar things around. My sadness is that she has declined at the care home quite quickly. But we did the absolute maximum we could to keep her life as normal as possible for as long as possible. She is now safe, and we are all much healthier not having to worry about her so much, and it is a good care home with a lovely garden and chickens.
Only you can judge whether it will work at your home with your mum. Maybe it would work with a number of carers to support you. Bear in mind that this disease only gets worse, unfortunately. But I think it is a massive red herring to think about promises made when the person had capacity. You can only deal with the situation that is now, and make your best choice. I wish you all the best.
 

canary

Registered User
Feb 25, 2014
13,420
South coast
My mum wanted to come and live with me and tried to make me promise that i would never put her in a home.

She came and spent a long weekend with us and it was enough to show me that i could never make it work. The moods swings were horrendous, she wanted me to just sit with her all the time and wouldnt let me get on with anything, but it was the night-times that were the killer - she woke me up every half an hour throughout the night because she could hear "noises in the kitchen" (there were none).

Eventually, mummoved into a care home and after she had settled was happy there! She made friends, joined in the activities and I could take out for short trips during the day. I never thought it would happen, but she got much more stimulus that I could have given her at home and there was always someone around she could sit and talk to - even in the middle of the night!

It is very easy to "slide" into careing and even though you may say you will only do it for 6 months, these things have a habit of becoming permanent.
 

Sirena

Registered User
Feb 27, 2018
2,287
I agree with posters who have said it would be a good idea to have your mother live with you for a week to see how it goes. I think it may well be a lot harder than you hope. It's only by actually living with someone that you discover the day to day issues they have. Although it seems like the best option for her, that may not be the case.

My mother said she wanted to stay at home, but there came a point when it was no longer possible, even with carers in for 6 hours a day. I moved her to a care home over two years ago, and within a few weeks she told me how much she loves it. Her quality of life is far better than she could have achieved either in her own home or in mine. If you find the right care home, it can work very well.
 

Bunty2410

Registered User
Apr 28, 2020
39
Thank you all for your input. I’m going to have her here for a trial stay and go from there. I’ll keep you posted🤞🏻
 

Bunty2410

Registered User
Apr 28, 2020
39
I agree with posters who have said it would be a good idea to have your mother live with you for a week to see how it goes. I think it may well be a lot harder than you hope. It's only by actually living with someone that you discover the day to day issues they have. Although it seems like the best option for her, that may not be the case.

My mother said she wanted to stay at home, but there came a point when it was no longer possible, even with carers in for 6 hours a day. I moved her to a care home over two years ago, and within a few weeks she told me how much she loves it. Her quality of life is far better than she could have achieved either in her own home or in mine. If you find the right care home, it can work very well.