I am so confused about what is the right thing to do for mum. She has had dementia for about 10 years and it is now fairly advanced, in that she has to be helped with toileting, is incontinent of urine, struggles with words and often gets confused about what things are, even her own fingers sometimes. A lot of the time she doesn't know who I am, although I'm with her six days a week, and she thinks I'm a care worker. However, I also see flashes of the mum I know. She can be funny and she's very observant. A year and a half ago, she was living in her own home but moved to an independent living scheme for people with dementia. She was however very ambivalent about this and, as it turned out, the place didn't live up to its promises. I won't go into details about the various things that have happened but now mum has to move out because her dementia is too advanced. At first the social worker insisted she had to go into a care home but this would mean two weeks of isolation. Mum currently has an apartment and when she had to isolate for two weeks there, she nearly went out of her mind. She is very mobile, likes to potter about and needs company. She simply can't entertain herself. She doesn't like watching tv much or even listening to music, which she loves, if she's by herself, and, like many with Alzheimers, she is very anxious and hates to be alone. I fought for a best interests meeting and asked about taking her back to her home, which is still there. But I really don't know if that is the best option, nor if I'll be able to cope with mum 24/7 by myself. I have little support, only my brother, who can't deal with much of mum's needs and who only spends a couple of hours a week with her. Her friends, I'm sorry to say, have mostly abandoned her, apart from one but she is dealing with her own daughter's cancer diagnoses. As well, mum's house is in quite an under-resourced area with not the best transport links and few amenities. And I don't drive. I'm also not at all sure she will even recognise the place. I am absolutely riddled with guilt about all of this and don't know if I am just being selfish even to consider a care home. On the one had mum likes me to be there, even when she doesn't know it's me. She thinks I'm a very kind care worker. She will stay in her apartment with me, albeit i have to try to distract/entertain her constantly. She will let me help her with toileting, including cleaning her up after using the loo, and I can get her settled in bed. On the other hand, mum seems quite attached to the care workers who come in to do her medication. She likes to see people coming in and out of the apartment and she especially likes to sit with the other tenants in the common area where they sometimes congregate. She loves company and is always asking 'what are we doing now?', as in what's the next activity going to be. I have already had to give up work and move to support mum and I feel a bit like I'm losing my identity. But, what I've seen of the care system makes me very reluctant to have her go into a care home. It could be that my fears are unfounded and we'll be fine if I move mum back home. Things always seem worse in our imaginations, right? If covid wasn't a factor, I could go and look at homes and mum wouldn't be subjected to two weeks of isolation (despite having both vaccines and having recovered from a very mild case of the virus and having a negative test). I also don't want to keep moving her. Any move will be very hard on her. So, if I take her home and it doesn't work out, she'll have to move again and vice versa. Sorry for such a long post. I am new to the site and I can see from previous posts that this guilt and confusion is par for the course when trying to support someone with dementia. I guess, at the heels of it, I'm asking will I be able to cope with mum by myself or, are care homes ever really ok?
Do I take mum home or should she go into a care home
- Thread starter Paulinemca
- Start date
Hello @Paulinemca
Like many of us these days, you are in a tough place. One thing I can say is that there isn't any need to feel selfish or guilty as you are doing your best.
Only you will know if you can manage if you don't take up the suggestion of residential care, however, it does seem that the suggestion was made for good reasons. There are cases on the forum wherein people have found that their loved ones have done very well in a care setting and I suppose that's due to the fact that a 24/7 team is on the case and there can be a social aspect of life in such a setting. Also, it's often quoted that the caring doesn't stop once a person goes in to residential care and, hopefully, that aspect of residential care will return.
Others will, no doubt, give the benefit of their experience and in the meantime it may help you to read the Society Factsheet that can be seen by clicking the 2nd line of the following link
Like many of us these days, you are in a tough place. One thing I can say is that there isn't any need to feel selfish or guilty as you are doing your best.
Only you will know if you can manage if you don't take up the suggestion of residential care, however, it does seem that the suggestion was made for good reasons. There are cases on the forum wherein people have found that their loved ones have done very well in a care setting and I suppose that's due to the fact that a 24/7 team is on the case and there can be a social aspect of life in such a setting. Also, it's often quoted that the caring doesn't stop once a person goes in to residential care and, hopefully, that aspect of residential care will return.
Others will, no doubt, give the benefit of their experience and in the meantime it may help you to read the Society Factsheet that can be seen by clicking the 2nd line of the following link
Hi @Paulinemca and welcome to Dementia Talking Point. This is a very friendly place and you'll get lots of support and advice here.
I think your mother would be much better off in a care home. There she would have lots of people to talk to, and lots of people to take care of her needs. I think if you took her home you would find it all too much within a couple of weeks.
The having to isolate sounds bad, but in the right home the carers will be popping in and out all the time so it won't be like solitary confinement. Home seem to be gradually loosening restrictions on visiting (well my mother's home is), so you'll be able to visit more freely as the months go on. More importantly you'll be able to be her daughter rather than a very frazzled carer.
I'm sure others will be along with their opinions very shortly, but in the meantime you could use the space bar at the top to search for other people's experiences of care at home versus care in a home.
I think your mother would be much better off in a care home. There she would have lots of people to talk to, and lots of people to take care of her needs. I think if you took her home you would find it all too much within a couple of weeks.
The having to isolate sounds bad, but in the right home the carers will be popping in and out all the time so it won't be like solitary confinement. Home seem to be gradually loosening restrictions on visiting (well my mother's home is), so you'll be able to visit more freely as the months go on. More importantly you'll be able to be her daughter rather than a very frazzled carer.
I'm sure others will be along with their opinions very shortly, but in the meantime you could use the space bar at the top to search for other people's experiences of care at home versus care in a home.
Welcome from me too @Paulinemca
I agree with @Sarasa that your mum would probably be better off in a carehome. My dad’s carehome was a lively place and there was always something going on. The carers were very good at keeping the residents occupied. When dad decided to spend time in his room he was checked on regularly. I know the quarantine period is not ideal but a good home should manage it well.
I imagine it would be exhausting for you to look after your mum by yourself and, as a naturally sociable person, she should do very well in a suitable carehome.
I agree with @Sarasa that your mum would probably be better off in a carehome. My dad’s carehome was a lively place and there was always something going on. The carers were very good at keeping the residents occupied. When dad decided to spend time in his room he was checked on regularly. I know the quarantine period is not ideal but a good home should manage it well.
I imagine it would be exhausting for you to look after your mum by yourself and, as a naturally sociable person, she should do very well in a suitable carehome.
I can only agree with other posters . Your mum needs 24/7 supervision with a whole team , who are not at the end of their tether with exhaustion. Please don't dismiss a care home option
Hi @Paulinemca Having just come back from visiting my wife in her care home I would back up the view that this may be your best option. You wonder if you could give her the support and care that she needs 24 hours of every day. The answer to that would inevitably be that you could not. I struggled to do so for my wife but recognised that I was losing the battle. Before she went into the home, constant washing of her hands and soaking of her sleeves led to contact dermatitis on her wrists. Now that she is cared for properly by a team all of that has gone. She is much calmer and more content, has plenty of company and we have regained a little of the relationship we had before I became her full time carer. Going to live in a care home is not a failure but is recognition that a person's needs have outgrown what can be provided for them in their own home. I hope that this helps in what is a difficult time for you.
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she sounds like an ideal candidate for a care home to me. I think she would actually quite like it. Would she really understand the difference from where she is now, if she enjoys the toddling off to community gatherings where she is now/has been?
2 weeks can seem like forever, but would soon pass..
Where is she now? What are your fears about a care home?
2 weeks can seem like forever, but would soon pass..
Where is she now? What are your fears about a care home?
Hi Pauline, I was in a very similar situation to you last year, I was looking after my mum who has mixed dementia , I was calling round 4 times aday I between carer visits, it was the start of lockdown in March. Main problem mum was wandering, going to all the places she used to before lockdown, Church, clubs dances etc, she had a very busy social life and it all stopped.
I'd reached the end of my tether and social services found her a place in respite care, originally for 3 weeks as I was returning to full time work in July and could not have coped with mum. This respite lasted 6 months, sorry to say I could see mum going downhill in the home, staff seemed lovely and caring, but she was looking dishevelled and very agitated, made worse by the fact we couldn't enter the home to see the home or her room. Staff told me she would refuse showers and baths and used to scream at them, this worried me as she is usually very compliant. She had no ensuite bathroom and I know she would hate that, she is a very private person and would hate to use public bathrooms. Mum was not incontinent when she went in the home but she was when she came out.
We had the option of making the home permanent, but after a lot of soul searching I decided she was not as advanced as the other residents (who she said were always shouting and arguing, mum had a very quiet life) I brought her home, I felt I had to try and that I would never forgive myself if I didn't try. I now stay with her full time tho I still have my own house 10 minutes away ( its my bolthole when I get free time) I now think mum has improved slightly though she is still incontinent and has a fear of the toilet, which I think resulted from the care home. Also mum , since dementia has a fear of men, and the care home had quite a few men.
I now take her out every day for drives, walks, take a little packed lunch, and a looking forward to the day when the church clubs and daycare start back up. Also want to take her on some little coach holidays and weekends away while she can still do it. I know there will come a time when she will have to go into care, that line in the sand is when she is immobile or gets aggressive ( at the moment she has not an aggressivebone in her ), doesn't know me or family, or starts waking in the night (at the moment she sleeps like a log) I manage to work part time, 15 hours, and carers sit with her 5 hours, 3 days a week. At the moment things are fine, we have some bad days when she is extremely agitated or we have a mess with incontinent accidents, but on the whole things are OK, and my mental health is not suffering YET lol.
Pauline, its a hard decision and only you can decide, you know your mum better than anyone, best of luck and God bless ❤
I'd reached the end of my tether and social services found her a place in respite care, originally for 3 weeks as I was returning to full time work in July and could not have coped with mum. This respite lasted 6 months, sorry to say I could see mum going downhill in the home, staff seemed lovely and caring, but she was looking dishevelled and very agitated, made worse by the fact we couldn't enter the home to see the home or her room. Staff told me she would refuse showers and baths and used to scream at them, this worried me as she is usually very compliant. She had no ensuite bathroom and I know she would hate that, she is a very private person and would hate to use public bathrooms. Mum was not incontinent when she went in the home but she was when she came out.
We had the option of making the home permanent, but after a lot of soul searching I decided she was not as advanced as the other residents (who she said were always shouting and arguing, mum had a very quiet life) I brought her home, I felt I had to try and that I would never forgive myself if I didn't try. I now stay with her full time tho I still have my own house 10 minutes away ( its my bolthole when I get free time) I now think mum has improved slightly though she is still incontinent and has a fear of the toilet, which I think resulted from the care home. Also mum , since dementia has a fear of men, and the care home had quite a few men.
I now take her out every day for drives, walks, take a little packed lunch, and a looking forward to the day when the church clubs and daycare start back up. Also want to take her on some little coach holidays and weekends away while she can still do it. I know there will come a time when she will have to go into care, that line in the sand is when she is immobile or gets aggressive ( at the moment she has not an aggressivebone in her ), doesn't know me or family, or starts waking in the night (at the moment she sleeps like a log) I manage to work part time, 15 hours, and carers sit with her 5 hours, 3 days a week. At the moment things are fine, we have some bad days when she is extremely agitated or we have a mess with incontinent accidents, but on the whole things are OK, and my mental health is not suffering YET lol.
Pauline, its a hard decision and only you can decide, you know your mum better than anyone, best of luck and God bless ❤
Hello @Paulinemca and welcome to DTP
I would recommend that you have a trial run of your mum staying with you. I wondered whether I would be able to look after mum in my home too and she came and stayed with me on a trial basis to see if it were doable. I lasted only a weekend. Granted that I also had my OH who was showing symptoms, but I had no idea how bad mum was until she stayed with me.
She wouldnt let me do cooking, or housework, or attend to OH - she just wanted me to sit with her and entertain her all day. She got into a muddle with her medication and wouldnt let me help, but worst of all, she woke me every hour because she could "hear noises in the kitchen" (there was nothing) and I had to get up and go down with her to show her that everything was fine. Eventually the stress of it all got to OH, he had a massive seizure and she had a total meltdown so that I honestly didnt know who to attend to first.
Eventually there was no choice, but mum had to move into a care home. It took a few weeks for her to settle, but after that she thrived. She loved having someone around to talk to - even in the middle of the night - and she joined in the activities, made friends with the staff and other residents and was happy. She once told me "everybody here loves me" and she was right, they did. Moving to a care home was the best thing that happened to mum.
I would recommend that you have a trial run of your mum staying with you. I wondered whether I would be able to look after mum in my home too and she came and stayed with me on a trial basis to see if it were doable. I lasted only a weekend. Granted that I also had my OH who was showing symptoms, but I had no idea how bad mum was until she stayed with me.
She wouldnt let me do cooking, or housework, or attend to OH - she just wanted me to sit with her and entertain her all day. She got into a muddle with her medication and wouldnt let me help, but worst of all, she woke me every hour because she could "hear noises in the kitchen" (there was nothing) and I had to get up and go down with her to show her that everything was fine. Eventually the stress of it all got to OH, he had a massive seizure and she had a total meltdown so that I honestly didnt know who to attend to first.
Eventually there was no choice, but mum had to move into a care home. It took a few weeks for her to settle, but after that she thrived. She loved having someone around to talk to - even in the middle of the night - and she joined in the activities, made friends with the staff and other residents and was happy. She once told me "everybody here loves me" and she was right, they did. Moving to a care home was the best thing that happened to mum.
Really thank you very much, everyone. It's so helpful to hear other perspectives.
I've read the factsheet, karaokepete, and it is helpful but I'm still very confused. The current restrictions are a major problem.
Sarasa and Bunpoots and Rosettastone57, that's what I think myself much of the time. But the isolation period is a sticking point for me. It won't matter how often staff pop in, mum will hate being cooped up in a strange room and she has the awareness to know that she is being kept there but not the cognitive ability to understand why.
Northumbrian_k, you've been through this awful decision making process. I'm really glad that the care home has worked so well for you and your wife and I hope that continues. You were living with her from the beginning of the disease through its progression and that must have been so hard. It's not that I think mum going into a care home is a failure, but the current situation with Civid makes it much less appealing and, as it was for you, i think it should be a lost resort.
Jessbow, i agree that mum does in some ways seem like a good candidate for a care home. I do sometimes think she might like it. But she has a weird mixed awareness, very confused in some ways but very aware in others. She would definitely know she had been moved. She's in a supported living ford. Its for people with dementia but not those as advanced as mum. it's is meant to be minimal support so I have increased my involvement as her needs have increased. My fears about a care home are that the 'care' provided seems so variable and with the current restrictions I cant get in to check the place out, nor will I be able to have much contact with mum if she is moved into one. Even if restrictions are lifted there's no guarantee they won't be reinstated.
Jessy, your situation is indeed quite similar and I guess I'm in the middle of the soul searching. One problem is that I don't drive. I wish I did because I know that mum, who loved her car, would enjoy days out like that. But she doesn't like getting the bus or even a taxi. She gets really anxious. I will also have to give up my Housing Association flat, which isn't ideal. Mum and I will also be a bit isolated if I bring her back to her home but i'm still waiting to hear what support package social services can provide. There are some other differences. Mum isn't very compliant with showers. She hates them in fact and it can be quite difficult to get her to even just do a body wash. Mum doesn't seem to sleep very well now and that could be a real problem, as I find it quite exhausting just trying to keep her calm/entertained/occupied, along with the need for constant vigilance and the constant cleaning and laundry etc. She's very incontinent at night, which I think is one of the things that wake her up. She is also very anxious at night and is afraid of someone coming in and hurting her. She was abused as a child, so I think this has come back to haunt her. She also doesn't recognise me a lot of the time but she knows I'm familiar and she likes me and thinks I'm a 'very good' care worker. My mental health is suffering a bit already but I do wonder if I'm just being a bit self-centered, tbh. There's definitely a part of me that wants my life back. I lost my job a couple of years ago partly because of trying to support mum, who wasn't living nearby and the public transport to her wasn't great. But she is ill, with this horrible disease and I also think we have to step up when faced with difficult situations, like you have done with your mum. If she was a child, I certainly wouldn't be thinking of putting her into a care home. I find it very difficult to know where the boundary between my needs and mum's should be. Your experience of the care home is exactly what I dread and, like you, I have to decide what decision I can live with. I am edging more and more towards the same decision as you. I maybe have to at least try taking her home and see if I can cope, if maybe she might even be more settled. Certainly, the Covid restrictions are making that seem the only real option. I'm amazed that you have managed to keep your sanity and work part-time as well as care for your mum. The whole situation, the legal stuff, the care stuff, medical issues has nearly put me round the bend. You sound like you've somehow managed to stay calm. Long may it continue. It's great that you're managing so well.
Canary, I don't know how you coped, frankly. I hope your OH is doing a lot better too now. And it's great that the care home has worked so well for your mum. I'm thinking that I have to at least try bringing mum home first, as you say, though there are issues with it as I will be giving up my flat. Your mum sounds a lot like mine. She wants attention all the time and it's hard to get things done when she is there. She also thinks she can still do things herself. Not sleeping is my main worry though and just her being lonely and unhappy with just the two of us. I mean, she'll be happy with that some of the time but I don't know how she will be without the activities and the other residents.
Don't know if it's just me but it has taken me hours to work out how to reply here! I kept getting a message about 10 posts, but hopefully this will work now. Thanks so much, again.
I've read the factsheet, karaokepete, and it is helpful but I'm still very confused. The current restrictions are a major problem.
Sarasa and Bunpoots and Rosettastone57, that's what I think myself much of the time. But the isolation period is a sticking point for me. It won't matter how often staff pop in, mum will hate being cooped up in a strange room and she has the awareness to know that she is being kept there but not the cognitive ability to understand why.
Northumbrian_k, you've been through this awful decision making process. I'm really glad that the care home has worked so well for you and your wife and I hope that continues. You were living with her from the beginning of the disease through its progression and that must have been so hard. It's not that I think mum going into a care home is a failure, but the current situation with Civid makes it much less appealing and, as it was for you, i think it should be a lost resort.
Jessbow, i agree that mum does in some ways seem like a good candidate for a care home. I do sometimes think she might like it. But she has a weird mixed awareness, very confused in some ways but very aware in others. She would definitely know she had been moved. She's in a supported living ford. Its for people with dementia but not those as advanced as mum. it's is meant to be minimal support so I have increased my involvement as her needs have increased. My fears about a care home are that the 'care' provided seems so variable and with the current restrictions I cant get in to check the place out, nor will I be able to have much contact with mum if she is moved into one. Even if restrictions are lifted there's no guarantee they won't be reinstated.
Jessy, your situation is indeed quite similar and I guess I'm in the middle of the soul searching. One problem is that I don't drive. I wish I did because I know that mum, who loved her car, would enjoy days out like that. But she doesn't like getting the bus or even a taxi. She gets really anxious. I will also have to give up my Housing Association flat, which isn't ideal. Mum and I will also be a bit isolated if I bring her back to her home but i'm still waiting to hear what support package social services can provide. There are some other differences. Mum isn't very compliant with showers. She hates them in fact and it can be quite difficult to get her to even just do a body wash. Mum doesn't seem to sleep very well now and that could be a real problem, as I find it quite exhausting just trying to keep her calm/entertained/occupied, along with the need for constant vigilance and the constant cleaning and laundry etc. She's very incontinent at night, which I think is one of the things that wake her up. She is also very anxious at night and is afraid of someone coming in and hurting her. She was abused as a child, so I think this has come back to haunt her. She also doesn't recognise me a lot of the time but she knows I'm familiar and she likes me and thinks I'm a 'very good' care worker. My mental health is suffering a bit already but I do wonder if I'm just being a bit self-centered, tbh. There's definitely a part of me that wants my life back. I lost my job a couple of years ago partly because of trying to support mum, who wasn't living nearby and the public transport to her wasn't great. But she is ill, with this horrible disease and I also think we have to step up when faced with difficult situations, like you have done with your mum. If she was a child, I certainly wouldn't be thinking of putting her into a care home. I find it very difficult to know where the boundary between my needs and mum's should be. Your experience of the care home is exactly what I dread and, like you, I have to decide what decision I can live with. I am edging more and more towards the same decision as you. I maybe have to at least try taking her home and see if I can cope, if maybe she might even be more settled. Certainly, the Covid restrictions are making that seem the only real option. I'm amazed that you have managed to keep your sanity and work part-time as well as care for your mum. The whole situation, the legal stuff, the care stuff, medical issues has nearly put me round the bend. You sound like you've somehow managed to stay calm. Long may it continue. It's great that you're managing so well.
Canary, I don't know how you coped, frankly. I hope your OH is doing a lot better too now. And it's great that the care home has worked so well for your mum. I'm thinking that I have to at least try bringing mum home first, as you say, though there are issues with it as I will be giving up my flat. Your mum sounds a lot like mine. She wants attention all the time and it's hard to get things done when she is there. She also thinks she can still do things herself. Not sleeping is my main worry though and just her being lonely and unhappy with just the two of us. I mean, she'll be happy with that some of the time but I don't know how she will be without the activities and the other residents.
Don't know if it's just me but it has taken me hours to work out how to reply here! I kept getting a message about 10 posts, but hopefully this will work now. Thanks so much, again.
Pauline, I have only been at mums 6 months, I could be tearing my hair out in the next 6 months, who knows lol. In a way the lockdown helped, I was off work, nothing was open, restaurants etc, couldn't go away for weekends etc. Now everything is opening slowly and we have the opportunity to go places I'll most probably feel more trapped.
Do you have to give up your flat? I was adamant about keeping my house even though its rented too, I'm still paying rent and bills on an empty house, but bills are lower because I'm not living there, its costing be nothing staying at mums so I figure it balances out. How i see it if I give up my home and mum goes into care I'll be homeless if we have to sell mums to pay for care.
Mum never used to sleep well, but now she takes mirtazapine and diazapam at bed time and it works, she doesn't wake for wees so sometimes the pad is overflowed and wets the bed, but I prefer to deal with that in mornings rather than be awake all night.
To be honest I found it more stressful before I lived at, going back and to, never having a minute, or getting phoncalls bmum is wandering in her dressing gown or up at church in the freezing cold at 6am. All that has stopped and I can keep an eye on her, had doors changed and now she can't open them. Luckily mum has a big house so I can 'get away from it all ' . I'm glad to drive as when mum is sundowning late afternoons I can take her for a drive, she loves being in the car. Regarding work, I've only started back this week as I'm a hairdresser, so will have to see how that goes, I got a call from the carer yesterday that mum was pacing up and down with her coat on, trying to get out, telling carer to get out of her house. So we'll see how things go.
Do you have to give up your flat? I was adamant about keeping my house even though its rented too, I'm still paying rent and bills on an empty house, but bills are lower because I'm not living there, its costing be nothing staying at mums so I figure it balances out. How i see it if I give up my home and mum goes into care I'll be homeless if we have to sell mums to pay for care.
Mum never used to sleep well, but now she takes mirtazapine and diazapam at bed time and it works, she doesn't wake for wees so sometimes the pad is overflowed and wets the bed, but I prefer to deal with that in mornings rather than be awake all night.
To be honest I found it more stressful before I lived at, going back and to, never having a minute, or getting phoncalls bmum is wandering in her dressing gown or up at church in the freezing cold at 6am. All that has stopped and I can keep an eye on her, had doors changed and now she can't open them. Luckily mum has a big house so I can 'get away from it all ' . I'm glad to drive as when mum is sundowning late afternoons I can take her for a drive, she loves being in the car. Regarding work, I've only started back this week as I'm a hairdresser, so will have to see how that goes, I got a call from the carer yesterday that mum was pacing up and down with her coat on, trying to get out, telling carer to get out of her house. So we'll see how things go.
I must say that there are a few things that worry me @Paulinemca
You have to think of you as well. It isnt just about your mum. You cant compare your mum to child - it is just not the same. She may need watching over like you would a child, but IMO caring for someone with dementia is much harder than dealing with a child, because someone with dementia has a very skewed perception of reality and whereas a child is learning and developing, someone with dementia is just going to get worse.
We all want to be strong enough to look after the person that we love, but often love is simply not enough. Dementia will take and take, chew you up and spit you out and still want more. Even the strongest man on earth will reach a point where the weights will be too heavy for him to lift. We as carers are no exception - there comes a point when we just cannot do it, however much we want to.
Which brings me to my final point. What is your escape plan?
When someone with dementia has a person living with them who is keeping them safe, Social Services will simply let them get on with it. The carer is not part of their remit. The carer might be destroying themselves looking after the person with dementia, but SS wont want to know. So you are unlikely to get much help from them. Where will you live, what will you do for work? Caring is easy to slide into and difficult to get out of.
This section is something that worries me a lot.
You have to think of you as well. It isnt just about your mum. You cant compare your mum to child - it is just not the same. She may need watching over like you would a child, but IMO caring for someone with dementia is much harder than dealing with a child, because someone with dementia has a very skewed perception of reality and whereas a child is learning and developing, someone with dementia is just going to get worse.
We all want to be strong enough to look after the person that we love, but often love is simply not enough. Dementia will take and take, chew you up and spit you out and still want more. Even the strongest man on earth will reach a point where the weights will be too heavy for him to lift. We as carers are no exception - there comes a point when we just cannot do it, however much we want to.
Which brings me to my final point. What is your escape plan?
When someone with dementia has a person living with them who is keeping them safe, Social Services will simply let them get on with it. The carer is not part of their remit. The carer might be destroying themselves looking after the person with dementia, but SS wont want to know. So you are unlikely to get much help from them. Where will you live, what will you do for work? Caring is easy to slide into and difficult to get out of.
Jessy, it's never straightforward is it. I could imagine mum doing exactly the same thing. She can be very indignant and stubborn with me and with carers. I'll check about the flat but in any case, it's miles from her house. Just because of the transport links, it'd take a couple of hours to go between the two. I am considering nighttime meds, like mirtazepine, as well. Yes, the easing of lockdown might make the commitment feel more restrictive for you. Juggling your own needs and feelings along with caring for someone with dementia is so hard. I just can't get my head straight about it. I swing from one decision to another and back constantly. At some point soon, I'll just have to stick to one and then deal with the consequences, good or bad. You're clearly doing a lot but managing to keep yourself steady for now. I hope things improve a little, maybe your mum will settle a bit more, or at least you get a period of relative stability before you're forced to make other decisions. It's not easy.
Canary and bunpoots. Thanks for this. I do get what you're saying. Especially, Canary, the bit about social services not caring if you destroy yourself so long as the dementia sufferers is ok. That has dawned on me over the past couple of years. We are utterly expendable to them. I will really take all this on board. It's finding the balance, and if course vivid has made things much more difficult. I've run out of time for now, but I appreciate your concern and I'll look at this again.
Just to add that you need to be very clear about what you hope to achieve and whether it is realistic. What would be the benefits for both your mum and you in giving up so much and putting your life on hold to become a full time carer? Could you really meet all of her care, social and other needs, not just as she is now but as things inevitably get worse? These are hard questions but they need to be answered. Whatever you decide there is no easy course of action and you'll always find support here.
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I'm afraid that for a person with dementia, it wouldn't matter where they were, they are going to be unhappy, it's the nature of the illness. I think you need to look at the bigger , long term picture. You need to have a line in the sand which you won't cross when it comes to caring . Everyone is different , for some, it's the start of the wandering, others it's double incontinence, or constantly being woken at night. Your needs are important too.
Two weeks isolation is negligible compared to an open ended caring job for the foreseeable future.
Hi Paulinemca, I'm not a professional nor very experienced but I can only say that I had a similar dilemma with my brother who was living alone, with daily care and becoming so very confused and not recognising everyday objects in his home. He is in full time care now and I can't tell you just how relieved I feel knowing he's being monitored 24.7. I live some 2/5 hours drive away. I too was concerned that he wouldn't adapt or accept care but it seems he has adjusted but maybe it's because his condition is advancing so fast that he often isn't really aware of what's going on around him. I visited him for the first time last Tuesday and he looked clean and tidy but wasn't very perky but that's the nature of the condition. You have to consider yourself and what the stress and worry of all of this is doing to you too. Maybe try her with a short stay in a care home? If she likes company it may just work for her. I'm sure you'll have some great advice on here. This site has been a great place to vent and to hear other peoples' opinions. Good luck.
Please consider the care home. I understand that you want to look after mum but it is very hard, very stressful and very draining. Your relationship as mum and daughter goes out the window. My mum goes in this Wednesday, yes I’m dreading it but I’m also relieved as I can’t do this anymore. I want the relationship back I had before I was her carer. She knows I’m her daughter but now it’s as if I’m bottom of the pecking order and everyone else who does nothing for her are more important. My heart is broken but I know it’s for the best. Anyone who chooses to look after a loved one is amazing in my eyes but there comes a time when you have to hand over the reins and live yourself xx
