Full time carers, how do you cope?

[Annamalina]

Hi
I have been looking after my 83 yo
Mum with Alzheimer’s full time since 2022 . Since rapid deterioration started 4 weeks ago it has been 27/7 care for me. I have a sitter who started 3 weeks ago and helps me 10 hours a week, one long day a week, this is my respite from local authorities. I am on my own 6 days a week and find it really difficult especially when my mum is psychotic and i can’t even leave the house or do other chores like shopping and cooking. I have always managed to look after myself: fitness, walks and other meditating activities. Until 4 weeks ago it was possible to do a bit of everything to be healthy both physically and mentally , as it was safe to leave mum in the house for up to 2 hours. Not any more. I am struggling to have any “me” time at the moment and it is ruining my mental health. Due to my mum’s complex health needs ( psychotic episodes every day, hence 1:1 24/7 care) any respite away from home is not possible. Local authorities keep saying they understand how hard it is but no practical solution .. everything takes ages to look at! I have already told them and memory clinic people I am not coping on my own and don’t know for how long I can last. Are there any carers here in a similar situation? How do you cope under such stress and pressure? I have lost hope that I can get more help from LA to continue caring after my mum and it makes me very sad and frustrated.

 

[Grannie G]

Hello @Annamalina

I think you are being taken advantage of by the services.

What would happen to your mother if you were taken ill, hospitalised, or simply refused to be responsible for her care, which, by the way, is your right.

Perhaps you can tell the memory clinic people and your LA you refuse to take full time responsibility for your mother from now on, and they must make alternative provision for her.

Try not to feel too guilty about this. Once your mother is in residential care you will be able to visit her while others have the responsibility for her care.

 

[Annamalina]

If I fall ill or taken to hospital my mum will be moved to residential care, I am aware of it. It is my choice to look after her and until recently I have been managing very well. I thought I would continue looking after her as long as I can provide adequate care and I still can, I just find it hard to live under so much stress with such little help from other services. My dad is in a care home and until recently we used to spend 2-3 days a week visiting him there. He doesn’t have dementia but most of the residents do and I know what their life is like. Most of the time they sit in the big room watching TV or if the weather is nice in summer only they can sit outside, that’s it. My mum doesn’t speak English and requires daily walks in any weather. She will be deprived of that and she won’t be able to take part in any activities. With her challenging behaviour she will probably be sedated and left in her room sleeping all day and night. No way she will be getting 1:1 care in a care home. Communication is so important for patients with dementia and my mum won’t even be able to communicate with anyone. I cannot imagine a life like this for her at least now when she can still have some quality of life at home. I just wanted to hear from somebody who have found themselves in a similar situation and still coping and managing.

 

[Cking]

Hello @Annamalina

I think you are being taken advantage of by the services.

What would happen to your mother if you were taken ill, hospitalised, or simply refused to be responsible for her care, which, by the way, is your right.

Perhaps you can tell the memory clinic people and your LA you refuse to take full time responsibility for your mother from now on, and they must make alternative provision for her.

Try not to feel too guilty about this. Once your mother is in residential care you will be able to visit her while others have the responsibility for her care.

Hello
How is that possible as it cost so much money who’s is just not affordable I also take care of my mother in law here in Maryland and it’s so strenuous and she also is gettin nasty and urines on the floor in bathroom etc etc where is the help no one here can help u less you put our lives in a facility which is anywhere from 4 to 5 thousand a month we are lost

 

[Neveradullday!]

Hi @Annamalina - I think I'm in a similar situation to you.
I care for my mum in her home, it's been 24/7 for 3 and a half years now.

I think being really committed helps me a lot. I just know if she went in a home she'd hate it, she's quite a private person and sitting with other dementia sufferers wouldn't be her cup of tea. Of course she may get used to it eventually, just like a prisoner gets used to prison, but I just had to give it a go. She actually asked me a few months ago "I won't have to go to prison will I?" (she meant into care).

Of course if I couldn't cope then it would have to be a home, but we're doing fine. And it's not as if I'll be destitute either BTW. But I'm pleased I'm saving her approx £1500 a week.

You mention your own fitness - I too have looked after myself for many years. We have a walk most days, which we love to do, usually we're out about 90 minutes - it breaks up the day. I'll probably be getting a car too, in the near future.
I also have a couple of weights that I use. During the covid lockdowns people had to be inventive to keep fit - one way was using the stairs, which I've adopted! I walk or run up the stairs 30 to 50 times most days.

Contact with other people is limited of course, thankfully we've got this forum - I've also started posting on Facebook which I never did before.
I know I'm doing the right thing for us both at the moment - that makes a big difference.

Here's a photo from a couple of summers ago of her on our walk.

 

[Angel55]

If I fall ill or taken to hospital my mum will be moved to residential care, I am aware of it. It is my choice to look after her and until recently I have been managing very well. I thought I would continue looking after her as long as I can provide adequate care and I still can, I just find it hard to live under so much stress with such little help from other services. My dad is in a care home and until recently we used to spend 2-3 days a week visiting him there. He doesn’t have dementia but most of the residents do and I know what their life is like. Most of the time they sit in the big room watching TV or if the weather is nice in summer only they can sit outside, that’s it. My mum doesn’t speak English and requires daily walks in any weather. She will be deprived of that and she won’t be able to take part in any activities. With her challenging behaviour she will probably be sedated and left in her room sleeping all day and night. No way she will be getting 1:1 care in a care home. Communication is so important for patients with dementia and my mum won’t even be able to communicate with anyone. I cannot imagine a life like this for her at least now when she can still have some quality of life at home. I just wanted to hear from somebody who have found themselves in a similar situation and still coping and managing.

💗 Hello

I understand. There are lots of variations of caring on the forum. I am sure a few more people will come along and share those experiences with you too.

I don't much like the care home environments myself and you are right not a lot of places have the 1 to 1 caring that a home environment with a loved one with or without additional carers but if you are wanting too carry on then keep advocating for yourself with determined persistence to get the extra help and support you do need. No-one on their own can keep going for 24hrs a day six days a week with just 10hrs of block help indefinitely , you will just burn yourself out xx

 

[canary]

I am struggling to have any “me” time at the moment and it is ruining my mental health. Due to my mum’s complex health needs ( psychotic episodes every day, hence 1:1 24/7 care) any respite away from home is not possible. Local authorities keep saying they understand how hard it is but no practical solution .. everything takes ages to look at! I have already told them and memory clinic people I am not coping on my own and don’t know for how long I can last. Are there any carers here in a similar situation? How do you cope under such stress and pressure? I have lost hope that I can get more help from LA to continue caring after my mum and it makes me very sad and frustrated.

The trouble is, that SS are only looking at your mums situation - you are not their client and they are not looking at your situation or the toll it is taking on you. All the while you are plugging the gaps and meeting your mums needs, they will just let you get on with it.

I was looking after my OH on my own with no help and SS were not interested until I reached carer breakdown, then they got involved and now I have carers coming in to get him washed and dressed and he has regular respite. I also have a Home Help from Age UK to help with housework/laundry and a gardener, and OH has regular visits from the District Nurses, podiatrist, hairdresser etc. You have to delegate as much work as possible because there are simply not enough hours in the day for one person to do everything. There are times when I feel like a housekeeper directing staff and that my home is not my own, but its the price I pay for keeping OH at home. When all of this is not enough, then OH would have to move to a care home because I couldnt afford live in care and there isnt room for someone anyway

 

[Seabream]

I don't know what the answer is, Annamalina but I wanted to say that I hope you get through this and I wish you well. It's a heartbreaking situation and you sound to ve a loving daughter

 

[JackReacher]

I wish I could offer a magic solution, I really do. But you are trapped within a situation where your love and concern whilst very noble, are also crippling you.
Before things get impossible for you, perhaps you need to look at the care home options, letting your Local Authority know that you are struggling. They have all sorts of priorities that affect their decision making and sadly, until anyone cries out for help or they feel someone is in danger, nothing much changes. You need to sit down with them and with the right person. Sometimes its obvious that the person you are chatting with has zero interest and is just ticking a box. Is there a local group that you can visit and seek their advice? They will be able to offer you sound advice and also run all kinds of daytime activities, so you will not feel alone and deserted.
My wife went into care over a year ago and each day has its tears and sadness as I miss her so very much. But she deteriorated into delusions and eventually they sectioned her and that was that. It has left me feeling so very guilty, that I should have kept quiet and just coped, that I betrayed and deserted her.
I sit here in a lovely big house with just the dog for company. I still run a business and am active and fit at 74 (Yikes!) and colleagues do not know of the personal sadness. But my worries are little compared to some.
There are some great care homes and it can be surprising to see how some residents quickly settle in. A care home setting is where its heading and so do get chatting to your local dementia centre.
I have rambled on too long, but I do wish you some sunshine in your day and I hope you don't forget to look after yourself as well as Mum, Jack

 

[Annamalina]

Hello
How is that possible as it cost so much money who’s is just not affordable I also take care of my mother in law here in Maryland and it’s so strenuous and she also is gettin nasty and urines on the floor in bathroom etc etc where is the help no one here can help u less you put our lives in a facility which is anywhere from 4 to 5 thousand a month we are lost

In the uk most people have to pay for their residential care once their financial assessment is done. If you do not have enough savings to cover full costs you can get help from local authorities. There are lots of care homes where we live and their fees vary from £800 to £2000 per week. It is very expensive!

 

[Annamalina]

Hi @Annamalina - I think I'm in a similar situation to you.
I care for my mum in her home, it's been 24/7 for 3 and a half years now.

I think being really committed helps me a lot. I just know if she went in a home she'd hate it, she's quite a private person and sitting with other dementia sufferers wouldn't be her cup of tea. Of course she may get used to it eventually, just like a prisoner gets used to prison, but I just had to give it a go. She actually asked me a few months ago "I won't have to go to prison will I?" (she meant into care).

Of course if I couldn't cope then it would have to be a home, but we're doing fine. And it's not as if I'll be destitute either BTW. But I'm pleased I'm saving her approx £1500 a week.

You mention your own fitness - I too have looked after myself for many years. We have a walk most days, which we love to do, usually we're out about 90 minutes - it breaks up the day. I'll probably be getting a car too, in the near future.
I also have a couple of weights that I use. During the covid lockdowns people had to be inventive to keep fit - one way was using the stairs, which I've adopted! I walk or run up the stairs 30 to 50 times most days.

Contact with other people is limited of course, thankfully we've got this forum - I've also started posting on Facebook which I never did before.
I know I'm doing the right thing for us both at the moment - that makes a big difference.

Here's a photo from a couple of summers ago of her on our walk.
View attachment 70862

Thank you for your support and a lovely picture of your mum. We live in very beautiful countryside and I take my mum out every day unless she refuses to go. Our neighbours are very understanding and always speak to my mum and allow her to pat their dogs. It has definitely contributed to her good physical health but her mental health has unfortunately suddenly been consumed by the disease hence such a complicated situation. I am an extremely committed and it does help me too. I now call myself a psycho nurse 😁 and just do my job no matter how hard it can be. Also every day I wake up and hope her episodes will be easier to deal with ( she is on anti-anxiety medication) and it helps me to carry on and stay positive. I have been told such rapid deterioration if it doesn’t cause other physical problems and she goes to hospital can last days, months or years. I can definitely last days or a few more months but not years. Just now I have to take days and sometimes hours as they come.

 

[SoniaR]

Hello, I am a carer for my husband 24/7 but these last few weeks when I was unwell have been very difficult. I feel burnout is around the corner, and I think it is for you too. i also helped my mum when she had dementia, although I didn’t live with her. I think your opinion of care homes is not my experience.

My mum went into a care home for nearly 2 years and she loved it there. She made friends and really liked the carers. I used to visit her several times a week and there was always some sort of activity going on which you could join in with or not. You’re choice. Afternoons were quieter as residents do need a rest. In that time I got to know the manager and all the carers and they were so friendly and welcoming. Mum smiled more, she was very well fed and no longer lonely. With most care homes you can visit anytime. Just because your loved one is there doesn’t mean you never see them. You can get involved in their care (very welcome) or help with activities and make suggestions. My brother raised funds to pay for an Elvis tribute artist to visit the home. That went down very well, the day room was packed! For your sake please do not distregard a care home and you can still be a part of your mums life. 💗

 

[Annamalina]

Hi @Annamalina - I think I'm in a similar situation to you.
I care for my mum in her home, it's been 24/7 for 3 and a half years now.

I think being really committed helps me a lot. I just know if she went in a home she'd hate it, she's quite a private person and sitting with other dementia sufferers wouldn't be her cup of tea. Of course she may get used to it eventually, just like a prisoner gets used to prison, but I just had to give it a go. She actually asked me a few months ago "I won't have to go to prison will I?" (she meant into care).

Of course if I couldn't cope then it would have to be a home, but we're doing fine. And it's not as if I'll be destitute either BTW. But I'm pleased I'm saving her approx £1500 a week.

You mention your own fitness - I too have looked after myself for many years. We have a walk most days, which we love to do, usually we're out about 90 minutes - it breaks up the day. I'll probably be getting a car too, in the near future.
I also have a couple of weights that I use. During the covid lockdowns people had to be inventive to keep fit - one way was using the stairs, which I've adopted! I walk or run up the stairs 30 to 50 times most days.

Contact with other people is limited of course, thankfully we've got this forum - I've also started posting on Facebook which I never did before.
I know I'm doing the right thing for us both at the moment - that makes a big difference.

Here's a photo from a couple of summers ago of her on our walk.
View attachment 70862

Thank you for your support and a lovely picture of your mum. We live in very beautiful countryside and I take my mum out every day unless she refuses to go. Our neighbours are very understanding and always speak to my mum and allow her to pat their dogs. It has definitely contributed to her good physical health but her mental health has unfortunately suddenly been consumed by the disease hence such a complicated situation. I am an extremely committed and it does help me too. I now call myself a psycho nurse 😁 and just do my job no matter how hard it can be. Also every day I wake up and hope her episodes will be easier to deal with ( she is on anti-anxiety medication) and it helps me to carry on and stay positive. I have been told such rapid deterioration if it doesn’t cause other physical problems and she goes to hospital can last days, months or years. I can definitely last days or a few months but not years. Just now I have to take data and sometimes hours as they come

Hello, I am a carer for my husband 24/7 but these last few weeks when I was unwell have been very difficult. I feel burnout is around the corner, and I think it is for you too. i also helped my mum when she had dementia, although I didn’t live with her. I think your opinion of care homes is not my experience.

My mum went into a care home for nearly 2 years and she loved it there. She made friends and really liked the carers. I used to visit her several times a week and there was always some sort of activity going on which you could join in with or not. You’re choice. Afternoons were quieter as residents do need a rest. In that time I got to know the manager and all the carers and they were so friendly and welcoming. Mum smiled more, she was very well fed and no longer lonely. With most care homes you can visit anytime. Just because your loved one is there doesn’t mean you never see them. You can get involved in their care (very welcome) or help with activities and make suggestions. My brother raised funds to pay for an Elvis tribute artist to visit the home. That went down very well, the day room was packed! For your sake please do not distregard a care home and you can still be a part of your mums life. 💗

Thank you for sharing your experience. Yes, I agree and know that for some people a residential place can bring lots of happiness and content. Unfortunately, I have spent too much time in my dad’s care home in last 14 months and know their routine. I am not saying it is bad but it is not very mentally and physically stimulating for patients like my mum. Most of the residents look calm, quiet and content but my mum is not like that and requires 1:1 attention. Unless we pay extra money for 1:1 carer who can speak her language it won’t work for her, on the contrary it will make her more depressed and angry. When we are there all care staff love my mum and are friendly but unfortunately she doesn’t understand a word they say. She won’t be able to communicate with anyone and she is still very communicative and independent when she is not psychotic. I believe this is our main issue- a language barrier for her. Once she looses an ability to communicate and recognise me it won’t matter but now all she needs is somebody she can talk to or somebody she can spend her days with. As I am her care giver I have unfortunately become a trigger for her psychotic episodes and can’t make her happy most of the time.

 

[Annamalina]

The trouble is, that SS are only looking at your mums situation - you are not their client and they are not looking at your situation or the toll it is taking on you. All the while you are plugging the gaps and meeting your mums needs, they will just let you get on with it.

I was looking after my OH on my own with no help and SS were not interested until I reached carer breakdown, then they got involved and now I have carers coming in to get him washed and dressed and he has regular respite. I also have a Home Help from Age UK to help with housework/laundry and a gardener, and OH has regular visits from the District Nurses, podiatrist, hairdresser etc. You have to delegate as much work as possible because there are simply not enough hours in the day for one person to do everything. There are times when I feel like a housekeeper directing staff and that my home is not my own, but it’s the price I pay for keeping OH at home. When all of this is not enough, then OH would have to move to a care home because I couldnt afford live in care and there isnt room for someone anyway

Thank you for your time to reply to my post. I do realise carers are not SS clients. On the contrary, we create more work for them by complaining, demanding and asking for help and support when it becomes tough. I looked after both of my parents for one year until my dad became severely disable and had to go into care. Then I continued to look after mum for another year and never asked for help. Since December I have been asking for help and received just 10 hours of respite per week. Since the original assessment in December my mum’s health has deteriorated and now I am asking for another assessment for both of us. SS don’t like it - I am too demanding, mum is too demanding. Even though I am saving them lots of money it is easier for them to offer us a care home. Once my mum is in care she will eventually become somebody else’s responsibility. SS are too busy to think and do outside the box. My mum’s social worker has good intentions but she doesn’t make any decisions.

 

[Annamalina]

I wish I could offer a magic solution, I really do. But you are trapped within a situation where your love and concern whilst very noble, are also crippling you.
Before things get impossible for you, perhaps you need to look at the care home options, letting your Local Authority know that you are struggling. They have all sorts of priorities that affect their decision making and sadly, until anyone cries out for help or they feel someone is in danger, nothing much changes. You need to sit down with them and with the right person. Sometimes its obvious that the person you are chatting with has zero interest and is just ticking a box. Is there a local group that you can visit and seek their advice? They will be able to offer you sound advice and also run all kinds of daytime activities, so you will not feel alone and deserted.
My wife went into care over a year ago and each day has its tears and sadness as I miss her so very much. But she deteriorated into delusions and eventually they sectioned her and that was that. It has left me feeling so very guilty, that I should have kept quiet and just coped, that I betrayed and deserted her.
I sit here in a lovely big house with just the dog for company. I still run a business and am active and fit at 74 (Yikes!) and colleagues do not know of the personal sadness. But my worries are little compared to some.
There are some great care homes and it can be surprising to see how some residents quickly settle in. A care home setting is where its heading and so do get chatting to your local dementia centre.
I have rambled on too long, but I do wish you some sunshine in your day and I hope you don't forget to look after yourself as well as Mum, Jack

Thank you for your support and thank you for sharing your story 🙏 quite often I think this horrible disease is taking my mum away from me and is winning. If the medication she is on won’t help she might end up in hospital and might never be discharged back home. When I think about it it breaks my heart and I feel really helpless. I want to try and do all I can to help her before I say “ i cannot do it any more. Alzheimer’s has won” meanwhile I will do my best to look after myself when I can.

 

[Alisongs]

Hello
How is that possible as it cost so much money who’s is just not affordable I also take care of my mother in law here in Maryland and it’s so strenuous and she also is gettin nasty and urines on the floor in bathroom etc etc where is the help no one here can help u less you put our lives in a facility which is anywhere from 4 to 5 thousand a month we are lost

UK care does not come under our National Health Service unless there is an definite ongoing medical need. Eg My husband has diabetes type 1 which is deemed self managed' here. He can't do it himself as he now has increasing moderately severe dementia, and has been deemed no capacity for medical decisions that keep him alive. So the choice is pay for nursing home care 2000 pounds sterling per week (2500+dollars) and the NHS might pay towards the medical element, until you're more or less broke, when the local authority will pay a limited amount that may need top upd. Or DIY home care 247 365 with limited support from the NHS and local authorities. There is no such thing as care insurance and paying for help is about 30 pounds sterling (33+ dollars) per hour via a care agency. No tax deductible! Carers working for a care agency are largely on mimimum wage (approx 12 pounds sterling or 16 dollars per hour). It is very rare to get someone suitable, cheaper and privately.

 

[SoniaR]

Anna, I totally understand about the language barrier. My mum was Italian and came to the U.K. in the 50s. As her dementia progressed, she reverted to her mother tongue more and more. This often happens with dementia. However, she was still able to communicate with the carers a little.
My aunt also developed dementia but unfortunately she became aggressive and violent when placed in a care home and the care home wanted her gone. Her 2 children took it in turns to care for in her home but they just couldn’t cope. They then decided to try 24 hr care in the home, with her children visiting a lot, and she tolerated that well and was much more relaxed in her own home. She died a few months later. My aunt was always a formidable, bossy woman so not easy to care for. Mum was a calmer, gentler person and caring for her was easier in a way. I do feel for you so much, and I hope things are more manageable for you, but I know it’s hard. Sonia

 

[Annamalina]

Anna, I totally understand about the language barrier. My mum was Italian and came to the U.K. in the 50s. As her dementia progressed, she reverted to her mother tongue more and more. This often happens with dementia. However, she was still able to communicate with the carers a little.
My aunt also developed dementia but unfortunately she became aggressive and violent when placed in a care home and the care home wanted her gone. Her 2 children took it in turns to care for in her home but they just couldn’t cope. They then decided to try 24 hr care in the home, with her children visiting a lot, and she tolerated that well and was much more relaxed in her own home. She died a few months later. My aunt was always a formidable, bossy woman so not easy to care for. Mum was a calmer, gentler person and caring for her was easier in a way. I do feel for you so much, and I hope things are more manageable for you, but I know it’s hard. Sonia

Thank you, Sonia, for your kind words of support. Yes, I have heard about patients reverting to their mother tongue once their condition starts progressing. My mum has never spoken English and has only been in the UK since 2022. As she doesn’t remember visiting me and my family here during last 20 years it is still a foreign country with a foreign language for her. She feels lonely, isolated and misses her own flat and her friends every day even though she is looked after well and is surrounded by lots of love in my house. It’s just this horrible disease! I have had a better day today - no violent episodes from my mum. She has been sleeping most of the day and I have managed to do quite a few things at home including a short walk while my husband kept an eye on her. It feels like a day off compared to my typical day at home! I just hope that she will eventually calm down ( it’s week number 5) and our life will be less stressful and more manageable.

 

[Annamalina]

Updates on my situation.. gained: attention from psychiatrists and SS, lost: my mum keeps deteriorating every day.. I have been on the phone to SS several times a week trying to get more help with my mum since she is deteriorating every day and I am on duty 24/7 with only 10 hours of help from our sitter. She is going to carry out a new assessment next week on Tuesday! ( no urgency ) My mum has been having episodes every day sometimes twice a day. She has become more agitated and aggressive (mainly verbally) towards myself, my visiting daughter and my husband. She hardly eats or drinks as she is paranoid about being poisoned. Her psychiatrist wants to add anti-psychotics to her medication and somebody should be in touch with me tomorrow re it. I believe it will be a community nurse who is supposed to monitor my mum’s health. Actually she is to come and visit us once a week but so far not a single visit in 5 weeks. Our SW and myself are now questioning why they are delaying my mum’s hospitalisation since she has started showing physical deterioration ( hardly eating or drinking) and there is no progress with her current medication plan, on the contrary the situation is becoming more and more unpredictable. Our SW has promised to get in touch with the clinic and clarify what their plans are. I am worrying that considering my mum’s frailty at the moment anti-psychotics can have the opposite effect. I wonder if such medication can be prescribed over the phone without thorough medical examination? And then my mum will be monitored by a nurse ( hopefully) once a week? Shouldn’t it administer in a hospital under supervision of professionals. I agree she needs it but I have quite a few reservations about safety. Feeling more hopeful today but still very exhausted mentally and emotionally.

 

[Alisongs]

🧡💛❤️💚💙💜🖤🤎