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Advice needed on possible move to care home

LunaJ

Registered User
Mar 24, 2021
29
0
My Mother was diagnosed with Alzheimer's about a year ago. She lives alone, I visit daily and do virtually everything for her apart from personal care, and I'm really struggling to know how to proceed from here.

She thinks there's nothing wrong with her, and refuses all attempts to provide help, stimulation or social interaction. She refuses clubs, lunches, day care, respite care and is violently opposed to a care home, saying this would finish her off.

She's never been a social person and has always found it difficult to engage with people, so I'm not surprised she refuses all the interactions. On the flip side, she complains incessantly about being bored, isolated and lonely. She can't manage her previous hobbies of knitting, sewing and reading, and everything else I've tried to engage her with has not worked either - simple jigsaws, magazines, colouring, simple puzzles etc. There's literally nothing I can find to engage her with.

Her eating has been awful, and combined with her loneliness, social services have been putting in a carer for 2 hours a day for a social visit, and to encourage food/liquids. This often consists of my Mother taking to her bed during the visit, still refusing food/liquid and asking the carer to sit in the sitting room until it's time to go. I thought she might get used to it, but six weeks in she complains more than ever about the carers (they're lovely by the way). It doesn't feel like it's helping much other than giving me some comfort that at least she's being checked upon.

I've just been through an awful spell with her over the past 10 days or so, of her not getting out of bed at all, barely eating and just staring blankly into space declaring she has nothing to live for (she's still very capable of getting up and conversing). She also refused any TV on over this period. I think this may be depression, and resulted in me calling out her GP, who is arranging for a blood test. If that's clear, she's going to refer her to the Doctor in charge of her case for possible depression medication. The GP has also assessed my Mother as not having capacity now.

My major quandary at this point is mounting safety concerns. Not eating, unsteady on her feet, no ability to respond to any emergencies, leaving her main door unlocked overnight at times, electric fires on all night potentially too close to soft furnishings among a host of other things. Twice in the last week I've watched her try to make a phone call and she's not been able to, so I don't think she'd be able to call for help if she even had the presence of mind to. She has door alarms in case of wandering at night, I've been called out 3 nights in the past week when she's left the house. At times in the evenings, she seems unaware of where she is, and it feels very much like leaving a young child alone at home. I feel that she has very little quality of life at home (apart from me she only sees one neighbour regularly), but she disagrees, this is still living independently in her mind.

As she is someone utterly and violently opposed to a care home, at what point does the balance tip where the safety concerns outweigh everything else? I worry about the safety aspects, on the other hand I hate the thought of depriving her of her last bit of freedom too soon.

And if she is suffering from depression already, is this likely to completely tip her over the edge to the point she'll never come back from it?

Has anyone else made the move with someone who hates social settings and the mention of care homes, and how did it pan out?

I'm so racked with guilt at even the thought of moving her to a care home that my anxiety is constantly through the roof.

Apologies for the long post,
Thanks.
 

nae sporran

Volunteer Host
Oct 29, 2014
9,148
0
Bristol
Hullo and welcome, @LunaJ.
There's a few warning signs in there that I would draw to the attention of Adult Social Services and request an urgent care needs review if I was in your position. My partner is in care, which is a decision that circumstances took out of my hand. She barely interacts with anyone except carers, but is safe and getting the care she needs. That is the most important part to consider for your mum, though the guilt and the feelings that go with it are understandable.
 

canary

Registered User
Feb 25, 2014
18,848
0
South coast
My mum was a very independent lady too. She lived for a long time "independently" with dementia, but eventually she could not remember how to use the phone or TV remote, was not eating or drinking properly because she could not remember how to make herself something to eat or even a cup of tea and was going out at night dressed only in nightwear and banging on random peoples doors because she was lost. She too would not accept carers - she wouldnt allow them over the doorstep and half the time wouldnt let me in either! She fought tooth and nail against moving into a care home, begged me (with tears) not to put her into a home and tried to make me promise that I never would. I didnt make that promise as I already knew this was the only option, but it took a crisis to get her there.

Eventually mum had a TIA and ended up in hospital. She moved from there to her care home and lived there for the rest of her life. For the first 6 weeks mum was constantly "packing to go home" - by which she mean that she had pinched a black plastic bin bag and put a few random items of clothing and a few other things (one shoe, a couple of pairs of pants, the top half of her PJs, a hat and a load of tissues) in it. Eventually she settled and amazed me by making friends and joining in with activities, which I would never have believed that she would do. She positively thrived there - regular food and medication did her the world of good, the simple routine and nothing being expected of her gave her security and people always being around, day and night, reassured her. Near the end she said to me "they all love me in here" and she was right - they did.
 

Rosettastone57

Registered User
Oct 27, 2016
1,744
0
There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. In my opinion, you have now reached that point. Everything you are describing screams 24/7 supervision, which inevitably means a care home .

My mother in law was like your mother, thought there was nothing wrong with her. She had carers three times a day but refused personal care and for three years, she sort of washed but her hair was never washed throughout that time . She point blank refused to go into care so we waited for a crisis. She refused to even leave her own home. Eventually she became ill and went into hospital and we organised a care home for her. She went straight into care from the hospital, she was self funding, so we just organised it without any discussion with her.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,446
0
Newcastle
What is the point of 'freedom' when life has become so diminished that all normal activities become impossible and safety is compromised? Everything that you have described @LunaJ suggests that you have reached the point where needs outweigh everything else. It may not be easy to achieve but it sounds very much like the time for a care home has arrived.

It is impossible to say in advance how a person will react to the reality - rather than the idea - of a care home. If asked, my wife would have expressed horror at the idea of moving into a home. I did not ask her but went ahead with it anyway. She is now safe, settled and content, with all the needs that I found impossible to meet now dealt with properly. For her the loss of 'freedom' has led to an improvement in her quality of life.

You will never know unless you try.
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
There are no ifs or buts in this. How will the guilt monster feel if you don't put her in a care home? Worse I suspect. Your concience should be clear if you do the best you can to look after her and as every other poster here has said doing the best you can for her means a care home. From what you tell us she is unsafe at home and seriously so. Waiting until she sets the house on fire really isn't an option.
 

obywon

Registered User
Mar 9, 2022
15
0
My Mother was diagnosed with Alzheimer's about a year ago. She lives alone, I visit daily and do virtually everything for her apart from personal care, and I'm really struggling to know how to proceed from here.

She thinks there's nothing wrong with her, and refuses all attempts to provide help, stimulation or social interaction. She refuses clubs, lunches, day care, respite care and is violently opposed to a care home, saying this would finish her off.

She's never been a social person and has always found it difficult to engage with people, so I'm not surprised she refuses all the interactions. On the flip side, she complains incessantly about being bored, isolated and lonely. She can't manage her previous hobbies of knitting, sewing and reading, and everything else I've tried to engage her with has not worked either - simple jigsaws, magazines, colouring, simple puzzles etc. There's literally nothing I can find to engage her with.

Her eating has been awful, and combined with her loneliness, social services have been putting in a carer for 2 hours a day for a social visit, and to encourage food/liquids. This often consists of my Mother taking to her bed during the visit, still refusing food/liquid and asking the carer to sit in the sitting room until it's time to go. I thought she might get used to it, but six weeks in she complains more than ever about the carers (they're lovely by the way). It doesn't feel like it's helping much other than giving me some comfort that at least she's being checked upon.

I've just been through an awful spell with her over the past 10 days or so, of her not getting out of bed at all, barely eating and just staring blankly into space declaring she has nothing to live for (she's still very capable of getting up and conversing). She also refused any TV on over this period. I think this may be depression, and resulted in me calling out her GP, who is arranging for a blood test. If that's clear, she's going to refer her to the Doctor in charge of her case for possible depression medication. The GP has also assessed my Mother as not having capacity now.

My major quandary at this point is mounting safety concerns. Not eating, unsteady on her feet, no ability to respond to any emergencies, leaving her main door unlocked overnight at times, electric fires on all night potentially too close to soft furnishings among a host of other things. Twice in the last week I've watched her try to make a phone call and she's not been able to, so I don't think she'd be able to call for help if she even had the presence of mind to. She has door alarms in case of wandering at night, I've been called out 3 nights in the past week when she's left the house. At times in the evenings, she seems unaware of where she is, and it feels very much like leaving a young child alone at home. I feel that she has very little quality of life at home (apart from me she only sees one neighbour regularly), but she disagrees, this is still living independently in her mind.

As she is someone utterly and violently opposed to a care home, at what point does the balance tip where the safety concerns outweigh everything else? I worry about the safety aspects, on the other hand I hate the thought of depriving her of her last bit of freedom too soon.

And if she is suffering from depression already, is this likely to completely tip her over the edge to the point she'll never come back from it?

Has anyone else made the move with someone who hates social settings and the mention of care homes, and how did it pan out?

I'm so racked with guilt at even the thought of moving her to a care home that my anxiety is constantly through the roof.

Apologies for the long post,
Thanks.
i am going through the same thing as a son /carer for my mum.....and the guilt of even thinking about it makes me feel awful even though i have alone, looked after her for the past 6 yrs.....so i will waitto see what answers come back on the question you have asked.
 

Sarasa

Volunteer Host
Apr 13, 2018
5,018
0
Nottinghamshire
Hi @obywon and a very warm welcome to Dementia Talking Point. There often comes a time when no matter what you do to try and keep a loved one safe at home it all becomes too much no matter what extra support you put in place. Some people do manage to keep their loved ones at home but that is quite rare. Certainly when the sort of behaviour that @LunaJ mentions starts happening it becomes very difficult.
Please don't feel guilty if you do decide to move your mothers to care homes. You will still be their loving child, you'll just have other people supporting you.
 

Bracks48

Registered User
Jun 18, 2016
38
0
I am going through something similar, although my mum has 4 carers a day she thinks she is ok and carers are for my stepfather who passed away in Jan 2021. She complains of boredom although wo t engage in anything with me and her club which she loved closed down. She lives alone, bathroom and bedroom upstair, puts gas fire on during the night and leaves door unlocked at times - all a risk. She is currently in hospital (3rd admission in 12 weeks) due to pneumonia which results in a fall. I have now been advised by the frailty nurse and doctor that it is time I considered 24 hour care. I have now made the reluctant decision that is what is going to happen. When she is due for discharge she will go to a community hospital until a care home which I prefer becomes available. She is quite accepting of this because the doctor has suggested it, she would not discuss it when I suggested it. It is very difficult decision to make, however I was becoming her 5th carer of the day and look forward to visiting her as a daughter now. I hope you find a solution x
 

GillP

Registered User
Aug 11, 2021
1,721
0
Well this is timely. My husband goes to a care home tomorrow. I have tried so hard to keep him with me but I can no longer give him all of the care he needs. So reluctantly and with guilt the time has come. I have told him he is going for rehab. I hope to become his wife again.

I have not posted much about our situation just odd bits after his recent time in hospital but will eventually bore you all with the full story.

@LunaJ , it sounds like it’s very much time to think of your needs. You will be no good to anyone if you go under with the stress of it. As for guilt, well for some reason we do feel it. We ought not to because we have done and continue to do what we think is the best for all.
 

LunaJ

Registered User
Mar 24, 2021
29
0
Thank you everyone for your words of wisdom. Sometimes you need an outside perspective to try and make sense of things. I know absolutely that my Mother's not safe most of the time, but the anti social aspect of her personality in a care setting and potential depression scare the life out of me. I know how miserable she'll be.

When I got to her house this morning, she'd left her outside door unlocked all night again, and also left her fridge door open all night. I had to dump all the fridge contents. She was wearing a jumper, socks and boots. No pants/trousers and I think was getting ready to leave the house. I gave her pants and trousers to put on, but she sat on the edge of the bed for 90 minutes and made no attempt at them. I eventually had to virtually put them on for her. She's never had trouble dressing before, this seems a very sudden departure from her normal abilities. Is this usual, or likely to be a temporary blip?

Her care manager is going to see her tomorrow, I'll likely get some feedback thereafter.

Thank you all.
 

thistlejak

Registered User
Jun 6, 2020
273
0
MIL was very similar to your mum - if you can get her into care on whatever pretence before a crisis it is better for everyone. We had to wait for the crisis with MIL- she was sectioned after threatening a paramedic with a knife and trying to climb out of the bathroom window!
She was very anti social but has been in her nursing home for 2 years now and still thinks that she is on holiday. One of the senior staff calls her -to her face -my favourite grumpy person which makes her laugh.
If she needs to be there there really is no alternative and you never know she might like it.
 

Sarasa

Volunteer Host
Apr 13, 2018
5,018
0
Nottinghamshire
One of the reasons my husband’s younger brother and sister were so against their mother going into care for a long time was because they felt she liked her own company and was always rather nervous among people she didn’t know. When a move into care became the only safe option the family found a home that was very homely and they made her room as much like her one at home as possible. She’s settled in well, and even mixes with some of the other residents, so your mum may surprise you.
 

Banjomansmate

Registered User
Jan 13, 2019
4,140
0
Dorset
If someone in a care home doesn’t want to mix with other people they don’t have to. The only time The Banjoman was made to go downstairs was when he kept trying to stand up and walk off when he was no longer able to, then he was taken down to the lounge area so that staff members could keep an eye on him.
For his first few months in residential care I nearly always saw him up in his room. They would take his meals up to him if he preferred to stay up there. Staff would pop in to talk to him, the entertainment lady spent time with him. He spent the evenings and nights walking around the place until after 1.00.a.m. and then the night staff made him sandwiches and tea etc.
 

Originally

Registered User
Jun 25, 2022
32
0
My mum was a very independent lady too. She lived for a long time "independently" with dementia, but eventually she could not remember how to use the phone or TV remote, was not eating or drinking properly because she could not remember how to make herself something to eat or even a cup of tea and was going out at night dressed only in nightwear and banging on random peoples doors because she was lost. She too would not accept carers - she wouldnt allow them over the doorstep and half the time wouldnt let me in either! She fought tooth and nail against moving into a care home, begged me (with tears) not to put her into a home and tried to make me promise that I never would. I didnt make that promise as I already knew this was the only option, but it took a crisis to get her there.

Eventually mum had a TIA and ended up in hospital. She moved from there to her care home and lived there for the rest of her life. For the first 6 weeks mum was constantly "packing to go home" - by which she mean that she had pinched a black plastic bin bag and put a few random items of clothing and a few other things (one shoe, a couple of pairs of pants, the top half of her PJs, a hat and a load of tissues) in it. Eventually she settled and amazed me by making friends and joining in with activities, which I would never have believed that she would do. She positively thrived there - regular food and medication did her the world of good, the simple routine and nothing being expected of her gave her security and people always being around, day and night, reassured her. Near the end she said to me "they all love me in here" and she was right - they did.
I so hope that this will be true for my Mum. We moved her to a care home on Thursday which she was initially excited about as she will be close to me rather than 3 hours away but from the minute we arrived she has wanted to go home. She is packing to leave and wheeling her case around looking for a bus or taxi. So sad. Dementia Connect and the home have said to stay away for a couple of days to see how she fares as she does engage with the staff and can be distracted but I know that she is anxious in the extreme and feel I have aban her. Doi just have to be strong and insistent? Her dementia is not so bad that she has forgotten her home of 61 years just that she is only safe and secure when I am there and I can’t be all the time. Any advice really welcome.
 

canary

Registered User
Feb 25, 2014
18,848
0
South coast
Hi @Originally - yes what you describe is just what mum was like at the beginning, and she was like this for about six weeks.
I didnt visit for about a week and then when I did, I didnt stay very long. I found that saying goodbye to her was a trigger point for her to get upset and want to come with me, so on advice from people on her I didnt say goodbye - left my bag and coat in the managers office, so that there were no visual cues when I was leaving, timed it so that I left when she had something to distract her (usually dinner) and made some excuse to leave - "oh look mum, your dinner is here! I must go to the loo and Ill be back soon" - and then I just left. It seemed mean, but it avoided her getting upset.

The other thing that helped was being upbeat and cheerful when I visited. People with dementia are extremely good at reading body language and tend to mirror your emotions. So if I was upset, mum would be too; if I was angry or fearful, so would she be; but if I was cheerful it lifted her mood.

I didnt feel cheerful, of course, especially the first time I visited. You have put on the act of a life-time. Staple on a bright smile and be very positive about everything - what a lovely room, such a nice view (even if its over the car-park!), what lovely coloured curtains, how useful having an en suite... You get the idea. I also used to bring mums favourite sweets with me as a present that I could produce if I saw her bottom lip quivering, or I didnt like the way the conversation was going!

Keep telling yourself that it will get better. Your head knows that this is the best place, but it hasnt reached your heart yet. It will take time for both of you to adjust.
((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))
 

Originally

Registered User
Jun 25, 2022
32
0
Thank you so much for your helpful advice. All things I sort of know I should be doing but really hard when you are cracking up too! I don’t know if I can hold out for 6 days let alone 6 weeks! I’m taking my husband with me today to get the tv working and I’ll wash her hair as a distraction from a full on chat. Shame it’s raining as sitting in the garden would have been nice. The staff say she is eating in the dining room and does engage with them but she just misses home so much. Trouble is she forgets how bored, lonely and incapable of looking after herself she was. In some ways it would be easier if her dementia was worse but I guess I won’t think that when it is. 😢
 

canary

Registered User
Feb 25, 2014
18,848
0
South coast
In some ways it would be easier if her dementia was worse but I guess I won’t think that when it is.
I think your mum has probably moved into the care home at about the right time. If you leave it too late it is much harder for them to adjust and sometimes they never really settle at all. At this stage they can still learn the routines and interact with the staff and other residents.

Cut yourself some slack. She has only been in there a couple of days and she is already interacting with the staff and eating in the dinning room. You dont have to visit every day. Im sure you feel that you aught to, that she will feel abandoned etc etc, but honestly, she is unlikely to feel that and if you are upset when you visit, then she will be upset too.. Visiting her will only remind her of home at the moment, so maybe step back a little to help her settle.
 

Originally

Registered User
Jun 25, 2022
32
0
I can really tell that you have lived this. Thanks for sharing your hard won wisdom.
One day at a time I guess and a thicker skin for me. Never was good at play acting but best hone my skills!