Not really coping

[Blondee]

This is the first time I’ve posted here but I just feel that I can no longer cope and I don’t know what to do.
My 92 year old mum was diagnosed almost 2 years ago. She lives with me and since diagnosis has been attending a day care centre one day a week. She started off getting picked up and dropped off by the centre minibus but became so confused by (we think) so many people being dropped off that she wouldn’t recognise home when she got there and would refuse to come in. We got round that by the bus taking her there and me going to pick her up which works ok. I work full time and to allow that, I’m able to work from home on the day she goes there. I make her breakfast before I go to work and I leave her a sandwich for lunch - that’s all she’s ever had for lunch - and I’m home in time to make dinner. I asked SW about respite and have been waiting for about a year.
Generally when I’m with her she’s happy and contented - full of fun really although constantly looking for long dead people, has no idea I’m her daughter or sometimes that she has one. More and more she is trying to go ‘home’ in the evening and is less and less able to find her way about the flat. She wakes early and can’t find her way to the bathroom etc. She’s beginning to have episodes where she can get angry with me and she is no longer able to get dressed or undressed without being helped. I have POA and the welfare powers are activated.
It’s when I’m not here that there really are problems. I’ve come home to find my freezer switched off and all the no longer frozen food had to be thrown out, she’s pulled all the drawers out of her chest and left them on the bed, all her clothes pulled out of her wardrobe and drawers and tied in bundles (packing to leave I assume). The electric kettle was put on the gas hob and melted the other day and one of my neighbours found her on the ground floor in her dressing gown the other day. We’re in a second floor flat. I frequently come home to find her dressed ready to go out. She’s managed to pull the lever top off my kitchen tap and numerous other things. I am unable to leave her for any time at and when I am on my way home I feel sick dreading what will have happened next. I left her for 30 minutes the other day to go to the dr and came back to find she’d been trying to do something in the kitchen and am still trying to clean it up.
A few weeks ago after SW telling me again that I’d just have to wait for respite I burst into tears and finally they allocated someone. I told her about being unsafe and I think it’s only a matter of time before she goes wandering. They offered home care which I (probably stupidly) said I think will only make matters worse. Mum always (even before dementia) gets agitated about people coming into the house and honestly how can I refuse to get her breakfast at 7am and tell her she’ll need to wait. Making her meals is the least of my problems. Anyway we’ve arranged for her trial respite stay for July (I just need to find a home) and then I apply for a rolling package.
But I’ve just hit a wall I can’t stop sobbing. Can’t do anything and my GP on Friday signed me off work for 4 weeks. I really think that my mum can’t be left on her own any more for any length of time and really think she needs to be in a care home for her sake and mine but I don’t know what to do.
I’m sorry this is such a ramble but I feel this is my life from now on and I can’t cope with it.

 

[kindred]

This is the first time I’ve posted here but I just feel that I can no longer cope and I don’t know what to do.
My 92 year old mum was diagnosed almost 2 years ago. She lives with me and since diagnosis has been attending a day care centre one day a week. She started off getting picked up and dropped off by the centre minibus but became so confused by (we think) so many people being dropped off that she wouldn’t recognise home when she got there and would refuse to come in. We got round that by the bus taking her there and me going to pick her up which works ok. I work full time and to allow that, I’m able to work from home on the day she goes there. I make her breakfast before I go to work and I leave her a sandwich for lunch - that’s all she’s ever had for lunch - and I’m home in time to make dinner. I asked SW about respite and have been waiting for about a year.
Generally when I’m with her she’s happy and contented - full of fun really although constantly looking for long dead people, has no idea I’m her daughter or sometimes that she has one. More and more she is trying to go ‘home’ in the evening and is less and less able to find her way about the flat. She wakes early and can’t find her way to the bathroom etc. She’s beginning to have episodes where she can get angry with me and she is no longer able to get dressed or undressed without being helped. I have POA and the welfare powers are activated.
It’s when I’m not here that there really are problems. I’ve come home to find my freezer switched off and all the no longer frozen food had to be thrown out, she’s pulled all the drawers out of her chest and left them on the bed, all her clothes pulled out of her wardrobe and drawers and tied in bundles (packing to leave I assume). The electric kettle was put on the gas hob and melted the other day and one of my neighbours found her on the ground floor in her dressing gown the other day. We’re in a second floor flat. I frequently come home to find her dressed ready to go out. She’s managed to pull the lever top off my kitchen tap and numerous other things. I am unable to leave her for any time at and when I am on my way home I feel sick dreading what will have happened next. I left her for 30 minutes the other day to go to the dr and came back to find she’d been trying to do something in the kitchen and am still trying to clean it up.
A few weeks ago after SW telling me again that I’d just have to wait for respite I burst into tears and finally they allocated someone. I told her about being unsafe and I think it’s only a matter of time before she goes wandering. They offered home care which I (probably stupidly) said I think will only make matters worse. Mum always (even before dementia) gets agitated about people coming into the house and honestly how can I refuse to get her breakfast at 7am and tell her she’ll need to wait. Making her meals is the least of my problems. Anyway we’ve arranged for her trial respite stay for July (I just need to find a home) and then I apply for a rolling package.
But I’ve just hit a wall I can’t stop sobbing. Can’t do anything and my GP on Friday signed me off work for 4 weeks. I really think that my mum can’t be left on her own any more for any length of time and really think she needs to be in a care home for her sake and mine but I don’t know what to do.
I’m sorry this is such a ramble but I feel this is my life from now on and I can’t cope with it.

My dear, I know, I really do. I've been there with my OH, coming home from work to find things like your mum. My OH tied knots in all the electrical cables, tried to flush pillows down the loo etc etc etc. On his hospital notes (we eventually had a crash, bad fall, he ended up in hospital where they wrote a best interests statement against him continuing to live at home), I read CARER BREAKDOWN. That's me. Four years of awful torment like you describe. It's endless shock and trauma for us really. I am so sorry for the way you are, so sorry. Please take time to look after yourself, I know that's a kind of hollow sentiment where us carers are concerned. The care home business worked out well for my OH. I was too broken physically and mentally to carry on and I do not want you in that position. Is there anyone close you can talk to, talk it through as much as you need?
Thank you for posting, please keep talking to us.

 

[Blondee]

Thank you kindred.
I think I’m resigned to mum going into a care home. She looked after my gran with dementia until she couldn’t do it any longer and I know she would agree with me. In fact in a rare moment of clarity about six months ago out of the blue she said to me “if this is too much for you then you need to put me in somewhere”
I now need to get SW to agree as she won’t be able to self fund for long.

 

[Hazara8]

This is the first time I’ve posted here but I just feel that I can no longer cope and I don’t know what to do.
My 92 year old mum was diagnosed almost 2 years ago. She lives with me and since diagnosis has been attending a day care centre one day a week. She started off getting picked up and dropped off by the centre minibus but became so confused by (we think) so many people being dropped off that she wouldn’t recognise home when she got there and would refuse to come in. We got round that by the bus taking her there and me going to pick her up which works ok. I work full time and to allow that, I’m able to work from home on the day she goes there. I make her breakfast before I go to work and I leave her a sandwich for lunch - that’s all she’s ever had for lunch - and I’m home in time to make dinner. I asked SW about respite and have been waiting for about a year.
Generally when I’m with her she’s happy and contented - full of fun really although constantly looking for long dead people, has no idea I’m her daughter or sometimes that she has one. More and more she is trying to go ‘home’ in the evening and is less and less able to find her way about the flat. She wakes early and can’t find her way to the bathroom etc. She’s beginning to have episodes where she can get angry with me and she is no longer able to get dressed or undressed without being helped. I have POA and the welfare powers are activated.
It’s when I’m not here that there really are problems. I’ve come home to find my freezer switched off and all the no longer frozen food had to be thrown out, she’s pulled all the drawers out of her chest and left them on the bed, all her clothes pulled out of her wardrobe and drawers and tied in bundles (packing to leave I assume). The electric kettle was put on the gas hob and melted the other day and one of my neighbours found her on the ground floor in her dressing gown the other day. We’re in a second floor flat. I frequently come home to find her dressed ready to go out. She’s managed to pull the lever top off my kitchen tap and numerous other things. I am unable to leave her for any time at and when I am on my way home I feel sick dreading what will have happened next. I left her for 30 minutes the other day to go to the dr and came back to find she’d been trying to do something in the kitchen and am still trying to clean it up.
A few weeks ago after SW telling me again that I’d just have to wait for respite I burst into tears and finally they allocated someone. I told her about being unsafe and I think it’s only a matter of time before she goes wandering. They offered home care which I (probably stupidly) said I think will only make matters worse. Mum always (even before dementia) gets agitated about people coming into the house and honestly how can I refuse to get her breakfast at 7am and tell her she’ll need to wait. Making her meals is the least of my problems. Anyway we’ve arranged for her trial respite stay for July (I just need to find a home) and then I apply for a rolling package.
But I’ve just hit a wall I can’t stop sobbing. Can’t do anything and my GP on Friday signed me off work for 4 weeks. I really think that my mum can’t be left on her own any more for any length of time and really think she needs to be in a care home for her sake and mine but I don’t know what to do.
I’m sorry this is such a ramble but I feel this is my life from now on and I can’t cope with it.

It is quite clear that your mother cannot be left alone. You do not want any traumatic outcome to add to an already fraught situation. It is generally suggested now (by the professional folk dealing with dementia as a whole) that one should act on this whole question of 'care', early on, before things become 'out of hand'. This is always a major and difficult decision. Finding the appropriate Home is paramount. A place where your mother indicates that she is 'comfortable' and can relate well to the Carers - all of whom MUST have dementia skills. This is so important. When people come into respite (into a Care facility) they do so with a mix of conditions and a specific personal history, all of which has to be carefully assessed. Apart from obvious things (food likes and dislikes, recreational preferences et al) the whole ambience of a place, the 'socialization' aspect (being with other people who present in varied ways) and the all important attention to any 'triggers' which can bring about upset or anxiety -- all of this is key to a 'settled' outcome. Of course one dearly wishes for the loved one to remain at home, because of that constant sense of control and care encapsulated in the consuming and deeply meaningful relationship, which is what a daughter and mother truly is. Therein lies the main stumbling block. The notion of any 'detachment' seems tantamount to betrayal, apart from the nagging realisation that in all honesty, the combined ethic of 'best interest' and 'personal care' (your own welfare) can truly overwhelm any clarity of thought or decision-making.

So the July 'respite' is under way. This gives time to plan and plan as meticulously as possible. But you have to take good care of yourself in this process, so if at all possible, take each day as it comes and try not to expect anything, i.e. do not 'live out' tomorrow or imagined scenarios, which do not exist. There is truth in enabling a mind-set which 'accepts' things as they are (not always easy, I know) and thus not experiencing constant disappointments or shocks, due to wishful thinking. This is hardly any consolation, but one can get a true perspective on this journey into dementia world and the depth of its import and potency, when you hear of a professional seasoned nurse, trained in psychiatric clinical care, who confesses to having undergone a 'learning curve' having spent two weeks caring for a mother afflicted with Alzheimer's. It can be the toughest role in any context, literally, especially when you are sole carer. You are only human. And you can allow tears to be shed and release the tension, nothing wrong in that. They are tears which express much more than those of laughter and joy, they express your humanity, because you CARE.

Day to day. And cherish the 'happy and contented' moments as they happen, for they cannot be cherished at any other time, in that very special way.

 

[nellbelles]

Hi @Blondee welcome to TP
It’s a hard decision to have to make, but once it becomes untenable for one person to manage the care on their own it has to be so.
You WILL still be caring but in a less pressurised way, and I hope in a much more normal daughter Mum relationship

 

[Blondee]

It is quite clear that your mother cannot be left alone. You do not want any traumatic outcome to add to an already fraught situation. It is generally suggested now (by the professional folk dealing with dementia as a whole) that one should act on this whole question of 'care', early on, before things become 'out of hand'. This is always a major and difficult decision. Finding the appropriate Home is paramount. A place where your mother indicates that she is 'comfortable' and can relate well to the Carers - all of whom MUST have dementia skills. This is so important. When people come into respite (into a Care facility) they do so with a mix of conditions and a specific personal history, all of which has to be carefully assessed. Apart from obvious things (food likes and dislikes, recreational preferences et al) the whole ambience of a place, the 'socialization' aspect (being with other people who present in varied ways) and the all important attention to any 'triggers' which can bring about upset or anxiety -- all of this is key to a 'settled' outcome. Of course one dearly wishes for the loved one to remain at home, because of that constant sense of control and care encapsulated in the consuming and deeply meaningful relationship, which is what a daughter and mother truly is. Therein lies the main stumbling block. The notion of any 'detachment' seems tantamount to betrayal, apart from the nagging realisation that in all honesty, the combined ethic of 'best interest' and 'personal care' (your own welfare) can truly overwhelm any clarity of thought or decision-making.

So the July 'respite' is under way. This gives time to plan and plan as meticulously as possible. But you have to take good care of yourself in this process, so if at all possible, take each day as it comes and try not to expect anything, i.e. do not 'live out' tomorrow or imagined scenarios, which do not exist. There is truth in enabling a mind-set which 'accepts' things as they are (not always easy, I know) and thus not experiencing constant disappointments or shocks, due to wishful thinking. This is hardly any consolation, but one can get a true perspective on this journey into dementia world and the depth of its import and potency, when you hear of a professional seasoned nurse, trained in psychiatric clinical care, who confesses to having undergone a 'learning curve' having spent two weeks caring for a mother afflicted with Alzheimer's. It can be the toughest role in any context, literally, especially when you are sole carer. You are only human. And you can allow tears to be shed and release the tension, nothing wrong in that. They are tears which express much more than those of laughter and joy, they express your humanity, because you CARE.

Day to day. And cherish the 'happy and contented' moments as they happen, for they cannot be cherished at any other time, in that very special way.

Thank you Hazara. I’m going to look at Care Homes this week.

 

[Grannie G]

It’s when I’m not here that there really are problems.

Hello @Blondee
This shows your mum needs care 24/7 otherwise she is at risk.

Your emotional state really does mean the full responsibility of caring is asking too much of you.

The fact your GP has signed you off for four weeks should help the SW to realise, with the best will in the world, you cannot be expected to provide full time care for your mother .

Once your mother is in residential care you will feel the weight of responsibility lifted and you will be then able to have much quality time with your mother, which is denied to you now because you are so stressed.

 

[Blondee]

Hi @Blondee welcome to TP
It’s a hard decision to have to make, but once it becomes untenable for one person to manage the care on their own it has to be so.
You WILL still be caring but in a less pressurised way, and I hope in a much more normal daughter Mum relationship

Thanks nellbelles. I know I’m making the right decision but now to get SW to agree

 

[Blondee]

Hello @Blondee
This shows your mum needs care 24/7 otherwise she is at risk.

Your emotional state really does mean the full responsibility of caring is asking too much of you.

The fact your GP has signed you off for four weeks should help the SW to realise, with the best will in the world, you cannot be expected to provide full time care for your mother .

Once your mother is in residential care you will feel the weight of responsibility lifted and you will be then able to have much quality time with your mother, which is denied to you now because you are so stressed.

Thank you Grannie G. I suppose I shot myself in the foot not asking for help at the start.

 

[Grannie G]

Thanks nellbelles. I know I’m making the right decision but now to get SW to agree

SW should agree because both you and your mother are at risk. Please use this language to help the SW realise how serious the situation is.

 

[Grannie G]

Thank you Grannie G. I suppose I shot myself in the foot not asking for help at the start.

We are all guilty of being in denial about the true nature of caring full time and the stress it puts on the emotional and physical well being of carers.

I also waited for a crisis situation, similar to the state you are now in and I know many other carers on this forum will identify with you.

It is because we only realise the need for residential care when there is no other option.

 

[Lily1]

You are doing the right thing. I had a carer melt down just before mum went into hospital in late January, followed then by two and a half months in a nursing home as it was obvious she couldn’t be at home safely then, that was after 6 weeks of trying to cope with acute delirium, no sleep and having to come out of work as she couldn’t be alone, even with that I was living on my nerves to keep her safe not to mention the emotional side. You are being a wonderful daughter as you’ve realised that your mum now needs constant care in order to be safe and as content as possible, you like me tried to continue until you simply can’t, not because of you but because your mum needs a team of support 24hours a day in order to keep her safe. Let the SW know you need this,to keep your mum safe, state that she’s not safe alone, that’s a safeguarding issue that the SW will recognise, also, let the SW know how you’ve had to come out of work too, the SW has a responsibility to help you and your mum. Do not feel guilty, do not think you are asking for a favour, you are asking for help which you deserve. You will feel yourself again once your mum is in respite and you will be able to enjoy spending time with your mum with the knowledge that she is safe. Sending virtual hugs! ( on a side note, in case it’s useful before the respite kicks in I found plug/socket/switch safety covers preventing electrical appliances to be used if I was out of the room in Amazon)

 

[Blondee]

You are doing the right thing. I had a carer melt down just before mum went into hospital in late January, followed then by two and a half months in a nursing home as it was obvious she couldn’t be at home safely then, that was after 6 weeks of trying to cope with acute delirium, no sleep and having to come out of work as she couldn’t be alone, even with that I was living on my nerves to keep her safe not to mention the emotional side. You are being a wonderful daughter as you’ve realised that your mum now needs constant care in order to be safe and as content as possible, you like me tried to continue until you simply can’t, not because of you but because your mum needs a team of support 24hours a day in order to keep her safe. Let the SW know you need this,to keep your mum safe, state that she’s not safe alone, that’s a safeguarding issue that the SW will recognise, also, let the SW know how you’ve had to come out of work too, the SW has a responsibility to help you and your mum. Do not feel guilty, do not think you are asking for a favour, you are asking for help which you deserve. You will feel yourself again once your mum is in respite and you will be able to enjoy spending time with your mum with the knowledge that she is safe. Sending virtual hugs! ( on a side note, in case it’s useful before the respite kicks in I found plug/socket/switch safety covers preventing electrical appliances to be used if I was out of the room in Amazon)

Thanks lily. It helps so much to know others understand. And I’ll definitely check out the safety covers

 

[Carolyn B]

I had pretty much the same experience as others. Although my mum's decline was very rapid. So I only had a couple of months of what you describe. But she simply could not be left. She was doing things that would have ended up with her being injured or worse.

I was off sick because I simply could not leave her. I have a very stressful job anyway and I work shifts.

What I found out was Social Services want to keep people at home as long as possible. Especially because she lived with me. We were offered carers, day centre, etc but that's no good in the early hours when she is up emptying cupboards. We were lucky enough to be able to pay for a care home. When I told the SW that' what we planning. She said "why?" I was quite taken aback I thought where do you want me to start !!!

I was just like you continually crying. Sleep deprivation. The pressure that I needed to get back to work. I had no life of my own. You need to tell the SW about the worst incidents. I had started keeping a diary prior to making the decision about a care home.

 

[Blondee]

I had pretty much the same experience as others. Although my mum's decline was very rapid. So I only had a couple of months of what you describe. But she simply could not be left. She was doing things that would have ended up with her being injured or worse.

I was off sick because I simply could not leave her. I have a very stressful job anyway and I work shifts.

What I found out was Social Services want to keep people at home as long as possible. Especially because she lived with me. We were offered carers, day centre, etc but that's no good in the early hours when she is up emptying cupboards. We were lucky enough to be able to pay for a care home. When I told the SW that' what we planning. She said "why?" I was quite taken aback I thought where do you want me to start !!!

I was just like you continually crying. Sleep deprivation. The pressure that I needed to get back to work. I had no life of my own. You need to tell the SW about the worst incidents. I had started keeping a diary prior to making the decision about a care home.

Thanks Carolyn. That’s what I’m afraid SW will say particularly because she lives with me. I have started keeping a diary.

 

[Blondee]

Just an update on where we are now.
I emailed mum’s SW and asked if I could speak with her without mum being there. She has just left (mum is at day care) and completely agreed that mum should have full time care. She said that even with the maximum care package they still couldnt meet her needs and while mum is still sociable she will be able to benefit from the company. So now the search for a care home begins.
Right now I just feel relief. I know that the guilt will kick in soon but I’m calmer than I’ve been for weeks if not months.

 

[Carolyn B]

Just an update on where we are now.
I emailed mum’s SW and asked if I could speak with her without mum being there. She has just left (mum is at day care) and completely agreed that mum should have full time care. She said that even with the maximum care package they still couldnt meet her needs and while mum is still sociable she will be able to benefit from the company. So now the search for a care home begins.
Right now I just feel relief. I know that the guilt will kick in soon but I’m calmer than I’ve been for weeks if not months.

I really felt so guilty but if she's safe then that's a bonus.

I just went on the internet. Made a list up of potential care homes. My criteria was dementia (obviously) and en-suite

I rang a few but they all just said come down so a few I just dropped in on them. All of them were welcoming. Quite a few have a top up fee. So social Services will pay their full amount then family/third party pay the rest. We are fully self-funding but the top up fee would be £75 a week. So should my mum's funds run out then I would have to pay that or she would move somewhere cheaper. Quite a lot of places quoted me this top up fee. I didn' know what it meant.

 

[Blondee]

I really felt so guilty but if she's safe then that's a bonus.

I just went on the internet. Made a list up of potential care homes. My criteria was dementia (obviously) and en-suite

I rang a few but they all just said come down so a few I just dropped in on them. All of them where welcoming. Quite a few have a top up fee. So social Services will pay their full amount then family/third party pay the rest. We are fully self-funding but the top up fee would be £75 a week. So should my mum's funds run out then I would have to pay that or she would move somewhere cheaper. Quite a lot of places quoted me this top up fee. I didn' know what it meant.

Thanks Carolyn.
I’ve just been on the internet and have the list that the SW sent me for a start and I’ve got some pointers from her. We are in Scotland so SW pay the personal care element then mum will self fund the rest plus any top up fee until her savings reduce then it’ll be a tariff income on her savings. I know it will be dreadful but I’ve seen how happy and contented she is while I’ve been with her this week compared with what she’s like when I get home from work so I know I’m doing the right thing.

 

[Carolyn B]

My mum would have just sat there all day like a zombie. Then emptied all the cupboards and goodness knows what else. I honesty feel despite the guilt it' the right decision for us.

 

[Sirena]

It's great that the social worker could see that your mother needs to go to a care home - they can often be slow to agree to this.

When you look at homes think of it in terms of how your mum will use it. My mother is self-funding (so far) and her care home is slightly shabby but very welcoming and friendly, and genuinely feels homely. Carers tend to stay a long time so there is a slow staff turnover, which is helpful.

There was the option of room only, or room with ensuite. My mother never had an ensuite at home, and as there are multiple bathrooms and she only has a shower/bath with a carer helping, an ensuite seemed pointless. The loo is literally next door to her room and she has a pressure mat by her bed so when she gets up in the night a carer goes to assist anyway. Room-only saves over £200 a week so it means she can self-fund for longer. Best of luck looking for the right care home, let us know how you get on.