I can’t do this anymore. At breaking point.

[SMBeach]

Dad is 81 and has Alzheimer’s. I live 500+ miles away and he has absolutely no family what so ever in Scotland popping in to help or keep an eye on him. He has no friends or neighbours popping in either. All ha has is 4 caters which are free in Scotland visit for half an hour each visit. Assessment was on the way back in March due to hospital contacting social services. I have all financial info asked for. But dad said he didn’t want to go into a home at that time so social services closed the case. Even though dads doctor has contacted them. Then the hospital. Now dad is desperate to go into a hime as he realises he can’t cope. In fact he’s in despair when on his own and also becoming increasingly frustrated that still after many weeks, no assessment has been done. He’s obsessed about going into a hime and constantly pressurising me asking when it’s going to happen. He will be self funding initially as has decent pensions and a house to sell plus a hood chunk of money in the bank. In Scotland you have to be assessed by social services first apparently. Not like kent, where you can go into a home and self fund and have the assessment and application for funding done whilst in the home. So he’s being expected to wait indefinitely at hime until the assessment happens, with no idea of timescale given to us and continue to deteriorate meantime.

He has incontinence and he struggles with this practically as well as mentally. Now he’s becoming nasty with me leaving numerous voice messages on my phone expecting me to sort everything out, which I’m already doing and it feels like a full time job, on top of an actual full time job and being single parent to 3 teens etc.

I never stop doing stuff for dad, including arranging house repairs/maintenance. Buying stuff for him to help him. Organising appointments/assessments/ looking up care homes. Doing all his finances, his food shopping. Managing his digital screen where I send messages etc to keep him informed. I’m exhausted. He calls anything up to 22 times a day at all hours. Luckily my phone is on silent. I feel like I am now going crazy. I’m getting so angry with him. I don’t like him. He’s always been opinionated. Thinking he’s right. He’s always been moody and angry. He’s always controlled how he speaks to a person to give the impression he wants to get across. He’s arrogant. Etc. and that’s before having Alzheimer’s.

I left him a message making it clear how he’d made me feel with one of his nasty voice messages and incessant calls while I was at work and I worded it carefully but factually as I’m starting to feel abused. He just got more angry at this and left a message telling me to ‘learn to control what I say to him’ etc. so I’ve not called him in 3 days now and he still continues to leave horrid messages. Probably getting worse because I’m not responding. I am not responsible for his happiness. I am not responsible for his lack of friendships or neighbourly visits. He has 4 cater visits organised by me yet he still calls me about every tiny little thing. If he gets a parcel from me he describes the parcel. The colour of the box. The approximate height, width and depth of the box. Every letter of every label in the box is spelled out in great detail including full stops. He tells me how heavy or light it is and can I let him know what’s in it. Instead of just opening it to find out, he leaves a 5 minute voice message with all this detail.

Social services are still doing nothing. They’ve had a lady off sick. Who has just signed off sick again. They’d told me she was on holiday which I felt couldn’t be true as several weeks have gone by now.

I dint want dad at home alone any longer. He has nothing to occupy his mind and no company. He’s desperately lonely and I can tell that he feels he is “on his way out”. He tells me he can’t do this anymore.

I just don’t know how I can get him into a care home without having to wait for social services to do their assessment first.

 

[Grannie G]

I left him a message making it clear how he’d made me feel with one of his nasty voice messages and incessant calls while I was at work and I worded it carefully but factually as I’m starting to feel abused.

This is what you tell Social Services @SMBeach

 

[Izzy]

I’m sorry to read about your dad’s situation @SMBeach.

It might be useful to contact the Age Uk Scotland helpline

Helpline | Age Scotland

Our helpline is a free, confidential phone service for older people, their carers and families in Scotland.

www.ageuk.org.uk

..or the Alzheimer Scotland helpline -

24 hour Freephone Dementia Helpline | Alzheimer Scotland

Emotional support and signposting advice, available 24 hours, everyday of the year.

www.alzscot.org

 

[Izzy]

There is also a Care Home Guide which might be useful -

Care Home Contracts | Age Scotland

Your guide to understanding care home contracts in Scotland

www.ageuk.org.uk

 

[SMBeach]

Thank you for your replies. I will do as recommended. Dads just left a very astute sounding voice message telling me if he dies alone at home then I am responsible. He wasn’t quite as direct as that but it’s what he meant without a doubt. He started his message with “that just won’t do (my name)” . No idea what he’s referring to as I haven’t contacted him today but I’m assuming he’s read an automatic message on his digital screen and is referring to that. He goes on to say he’s just going to let himself die and those responsible will be held responsible. This morning at 6am he called me to tell me he’d wet himself (in a matter of fact formal voice almost like it was my fault). Telling me his trousers were soaked and he’s trying to dry them on hot parts of his house (radiators), but they’re not hot enough. He says I need to sort it out.
He says he’s called the community alarm people out. He does this almost daily and they always visit him. I actually hate him right now.

 

[canary]

Dads just left a very astute sounding voice message telling me if he dies alone at home then I am responsible. He wasn’t quite as direct as that but it’s what he meant without a doubt. He started his message with “that just won’t do (my name)” . No idea what he’s referring to as I haven’t contacted him today but I’m assuming he’s read an automatic message on his digital screen and is referring to that. He goes on to say he’s just going to let himself die and those responsible will be held responsible.

Contact Social Services urgently and this is the sort of thing you need to tell them
Make a list of the things that he has said that show that he is at risk of harm - quote it word for word as much as you are able.

 

[Bettysue]

I’m in Scotland and I’d suggest you phone his local social work office and ask for the duty social worker. Explain the circumstances very clearly and use words like vulnerable,at risk,totally not coping. Say that you’ll have to withdraw support and let the situation take its course. I’d also contact care homes that you’d consider for him and perhaps try to make decisions about this in advance of social work doing the assessment. I did this and then waited for s vacancy once the paperwork was in place.

 

[SMBeach]

Hi. I’ve been in contact with care homes in his area and now awaiting further response asking if there’s a way I can get him in whilst self funding and apply for assessment and funding via the home itself. He just can’t wait for social services any longer. My support is from a long distance as it is. I’m about to call them again.

 

[leny connery]

I feel your pain, I do. 500 miles away and still have to deal with it. do not let him make you feel guilty. it is not your fault. you have done what anyone could in the circumstances. from the other responses to your posting, it seems like you just have to send that letter you wrote here to every and any institutions you could think of that deal with this , his doctor included. just like throwing your net out there in this sea of possible help and hope you would pull a result. he is in a way fortunate, having his own money to fund his care. sending you hugs and wishing you the best possible result and soon

 

[SMBeach]

Thank you.

 

[MRA]

Hello,

This is my first post on the forum. I came on here looking for support and to communicate with people who are going through a similar thing. Over the years, I have read many of the discussions and have taken solace from the fact that I am not alone and that some of my thoughts and feelings about Mum's Alzheimer's and what I have, and continue, to do are not uncommon and that I am trying my best.

I came across your post and on reading it I felt such an affinity as our situations are actually quite similar. My Mum was diagnosed with Alzheimer's about 4 years ago. She is also at the other end of the country, although the other way around as I live in the Highlands of Scotland and Mum lives just North of London. Before being sectioned, Mum was calling me up to 45 times a day about everything and anything; I fought tooth and nail with Social Services to try and get help and they are very quick to tell you how 'neglectful' you are but are far less quick to either offer some guidance/help or even reply to phone calls and emails. It makes me so sad to hear that other people have also experienced this. Eventually, after continuously harassing people, and I mean continuously, Mum got sectioned and from then on, I am not going to sugar coat, it has just been one hell of a journey.

I agree with one of the comments above about trying to find a home for your Dad now rather than waiting for Social Services. Waiting lists are horrendous just now so once you find a suitable home I would add him to the waiting list asap. I have been trying to move Mum to a home closer to me for almost the entire time that she has been in care. Similar to your Dad, she has no friends or family close by and although the home where she is is very good, it is extremely difficult, and emotionally exhausting, to keep going up and down the country every few weeks and staying in hotels.

Alongside the grief and guilt of all of this, whether to move Mum or not is my overbearing weight that I carry all of the time. I really don't know what to do. The doctors and staff at her current care home say that although the move would be stressful, the long term benefit of seeing family every day would outweigh this. Mum is only 77 so I think being able to see her every day and take her to the sea and spend time with her in the long term probably would outweigh the stress and emotion of moving her. However on the flip side, I have read so much about not moving people with dementia and it is not a short or easy journey. Following a move, if she were to deteriorate further, I am not sure I could ever forgive myself. It just feels impossible. If anyone has any thoughts, experience, advice on this I would be very grateful.

So, to that point, I would consider where the care home for your father should be. If you are the sole family/friend carer then you need to try and make it as easy as possible on yourself as all of this is hard enough. I have two older brothers but they have been beyond useless. Similar to you, I have dealt with all of Mum's finances, sold the house, shopping, her personal needs etc. etc. If you haven't done so already, you should get a Power of Attorney in place for both health and finance; both of these have made my life a lot easier than it otherwise might have been, although getting them in the first place was not easy. Similar to your Dad, my Mum can be very stubborn, has suffered from depression for years and is an old hand at guilt.

I wish you didn't have to go through this as I would not want this for even my worst of enemies. I do understand how hard it is to manage this, a job, a family etc. before you even factor in the emotions of it all and the distance. I have really struggled over the past 4-6 years and all of this has taken an immeasurable toll on me and my health, and continues to do so. If I could go back knowing what I know now, I would try and be as practical as possible and I would not take no for an answer. Try to set things up that will help this journey. Things like the power of attorney, choosing a home, being closer etc. etc. would all help. It is not going to be easy, it is not going to go away and there is a lot ahead of you, so just doing what you can to help in any small way is something.

My heart goes out to you. Try and take comfort from this forum, I know I have in the past, and ask for help. There are good, kind people out there and there are people who understand, more than I feel this world should have. Most importantly you need to look after and be kind to yourself. You are doing your very best. XXX

 

[jugglingmum]

My MIL is in Scotland.

My understanding is the reason for getting the assessment first is to get the free personal care that your dad is I assume currently getting if carer's are free.

If you go into a home without this you will have to pay full whack and then push for an assessment which is only dated from when it is done.

So financially it is better to wait for the assessment first but you don't have to (that is my understanding).

My MIL pays for carers, there is a chance she would qualify but is unlikely to accept the assessment process. She is now on waiting lists for 2 local homes and will go into a home when a space come free and then sort out any assessment after that (she is 96 and increasingly struggling living on her own - maybe very early stage dementia)

If your dad would be self funding I think just trying to get him in a home and sort the process out from there.

I suspect the links Izzy has given you should help advise on how this would work.

 

[SMBeach]

Hello,

This is my first post on the forum. I came on here looking for support and to communicate with people who are going through a similar thing. Over the years, I have read many of the discussions and have taken solace from the fact that I am not alone and that some of my thoughts and feelings about Mum's Alzheimer's and what I have, and continue, to do are not uncommon and that I am trying my best.

I came across your post and on reading it I felt such an affinity as our situations are actually quite similar. My Mum was diagnosed with Alzheimer's about 4 years ago. She is also at the other end of the country, although the other way around as I live in the Highlands of Scotland and Mum lives just North of London. Before being sectioned, Mum was calling me up to 45 times a day about everything and anything; I fought tooth and nail with Social Services to try and get help and they are very quick to tell you how 'neglectful' you are but are far less quick to either offer some guidance/help or even reply to phone calls and emails. It makes me so sad to hear that other people have also experienced this. Eventually, after continuously harassing people, and I mean continuously, Mum got sectioned and from then on, I am not going to sugar coat, it has just been one hell of a journey.

I agree with one of the comments above about trying to find a home for your Dad now rather than waiting for Social Services. Waiting lists are horrendous just now so once you find a suitable home I would add him to the waiting list asap. I have been trying to move Mum to a home closer to me for almost the entire time that she has been in care. Similar to your Dad, she has no friends or family close by and although the home where she is is very good, it is extremely difficult, and emotionally exhausting, to keep going up and down the country every few weeks and staying in hotels.

Alongside the grief and guilt of all of this, whether to move Mum or not is my overbearing weight that I carry all of the time. I really don't know what to do. The doctors and staff at her current care home say that although the move would be stressful, the long term benefit of seeing family every day would outweigh this. Mum is only 77 so I think being able to see her every day and take her to the sea and spend time with her in the long term probably would outweigh the stress and emotion of moving her. However on the flip side, I have read so much about not moving people with dementia and it is not a short or easy journey. Following a move, if she were to deteriorate further, I am not sure I could ever forgive myself. It just feels impossible. If anyone has any thoughts, experience, advice on this I would be very grateful.

So, to that point, I would consider where the care home for your father should be. If you are the sole family/friend carer then you need to try and make it as easy as possible on yourself as all of this is hard enough. I have two older brothers but they have been beyond useless. Similar to you, I have dealt with all of Mum's finances, sold the house, shopping, her personal needs etc. etc. If you haven't done so already, you should get a Power of Attorney in place for both health and finance; both of these have made my life a lot easier than it otherwise might have been, although getting them in the first place was not easy. Similar to your Dad, my Mum can be very stubborn, has suffered from depression for years and is an old hand at guilt.

I wish you didn't have to go through this as I would not want this for even my worst of enemies. I do understand how hard it is to manage this, a job, a family etc. before you even factor in the emotions of it all and the distance. I have really struggled over the past 4-6 years and all of this has taken an immeasurable toll on me and my health, and continues to do so. If I could go back knowing what I know now, I would try and be as practical as possible and I would not take no for an answer. Try to set things up that will help this journey. Things like the power of attorney, choosing a home, being closer etc. etc. would all help. It is not going to be easy, it is not going to go away and there is a lot ahead of you, so just doing what you can to help in any small way is something.

My heart goes out to you. Try and take comfort from this forum, I know I have in the past, and ask for help. There are good, kind people out there and there are people who understand, more than I feel this world should have. Most importantly you need to look after and be kind to yourself. You are doing your very best. XXX

Thank you. I just dint think I’ve got the strength for it. I dint want dad down here as he tries to control everything. He has incontinence and wants to view all the homes himself too. I’ve viewed lots of himes down here. But after him saying he’d want to view them I’ve decided to stick with Scotland. I rarely visit dad. Once a year if that as he’s extremely difficult to be around and I have to stay in hotels and hire cars every time I visit. I never spend less than a thousand pounds per visit. He’s hoarding. So I can’t stay there. Unfortunately I didn’t find Alzheimer’s Scotland were actually able to offer any real support. I’m awaiting to hear from the care homes I have in mind in Scotland. I’m at the point I won’t even bother viewing them. They have amazing reports and I’ve viewed them online and they sound amazing. This is what dad needs. I can tackle his house etc once he’s in a home not trying to control what I do and at what pace.

 

[JJackson]

Thank you so much for posting. I now feel less alone.......My father is six hours away and I work six days a week. In the meantime, I seem to be expected to solve everything - I am carrying so much and can't sleep....Just had a big row with my husband who thinks I am no fun anymore. Some things just can't be solved and my father won't accept that. It takes a lot of time every day as I sort things out, but it's the emotional headspace it takes up that I hate. So I don't know any answers I'm afraid but I wish you all the best with sorting things out for your dad.

 

[Hours Away]

I got my PWD into a care home prior to a council care home assessment and without anyone from the care home actually visiting them to assess their needs but I was able to give the care home a copy of their existing home care plan so they could provisionally assess their needs and they were only accepted on a 1 month trial anyway which I think also applied to anyone who had already been assessed by the council.

Given the urgency and the time it may take to organise a council assessment ask any of the care homes with a vacancy if they are willing to accept him in advance of a council care home assessment (but having already been assessed as needing personal care at home) with or without doing their own home visit as they may be able to simply treat the 1st month as a respite stay anyway and then make it more permanent after that.

You'll still be able to claim Attendance Allowance until the council assessment for personal care at the care home (which is worth £233/week) so there won't be a huge weekly difference overall in terms of the amount the care home will cost.

 

[leny connery]

I got my PWD into a care home prior to a council care home assessment and without anyone from the care home actually visiting them to assess their needs but I was able to give the care home a copy of their existing home care plan so they could provisionally assess their needs and they were only accepted on a 1 month trial anyway which I think also applied to anyone who had already been assessed by the council.

Given the urgency and the time it may take to organise a council assessment ask any of the care homes with a vacancy if they are willing to accept him in advance of a council care home assessment (but having already been assessed as needing personal care at home) with or without doing their own home visit as they may be able to simply treat the 1st month as a respite stay anyway and then make it more permanent after that.

You'll still be able to claim Attendance Allowance until the council assessment for personal care at the care home (which is worth £233/week) so there won't be a huge weekly difference overall in terms of the amount the care home will cost.

attendance allowance starts from £62 a week and goes up to£90 depending on care needs. Surely it is not as much as £233 per week????

 

[Lurd]

Hello,

This is my first post on the forum. I came on here looking for support and to communicate with people who are going through a similar thing. Over the years, I have read many of the discussions and have taken solace from the fact that I am not alone and that some of my thoughts and feelings about Mum's Alzheimer's and what I have, and continue, to do are not uncommon and that I am trying my best.

I came across your post and on reading it I felt such an affinity as our situations are actually quite similar. My Mum was diagnosed with Alzheimer's about 4 years ago. She is also at the other end of the country, although the other way around as I live in the Highlands of Scotland and Mum lives just North of London. Before being sectioned, Mum was calling me up to 45 times a day about everything and anything; I fought tooth and nail with Social Services to try and get help and they are very quick to tell you how 'neglectful' you are but are far less quick to either offer some guidance/help or even reply to phone calls and emails. It makes me so sad to hear that other people have also experienced this. Eventually, after continuously harassing people, and I mean continuously, Mum got sectioned and from then on, I am not going to sugar coat, it has just been one hell of a journey.

I agree with one of the comments above about trying to find a home for your Dad now rather than waiting for Social Services. Waiting lists are horrendous just now so once you find a suitable home I would add him to the waiting list asap. I have been trying to move Mum to a home closer to me for almost the entire time that she has been in care. Similar to your Dad, she has no friends or family close by and although the home where she is is very good, it is extremely difficult, and emotionally exhausting, to keep going up and down the country every few weeks and staying in hotels.

Alongside the grief and guilt of all of this, whether to move Mum or not is my overbearing weight that I carry all of the time. I really don't know what to do. The doctors and staff at her current care home say that although the move would be stressful, the long term benefit of seeing family every day would outweigh this. Mum is only 77 so I think being able to see her every day and take her to the sea and spend time with her in the long term probably would outweigh the stress and emotion of moving her. However on the flip side, I have read so much about not moving people with dementia and it is not a short or easy journey. Following a move, if she were to deteriorate further, I am not sure I could ever forgive myself. It just feels impossible. If anyone has any thoughts, experience, advice on this I would be very grateful.

So, to that point, I would consider where the care home for your father should be. If you are the sole family/friend carer then you need to try and make it as easy as possible on yourself as all of this is hard enough. I have two older brothers but they have been beyond useless. Similar to you, I have dealt with all of Mum's finances, sold the house, shopping, her personal needs etc. etc. If you haven't done so already, you should get a Power of Attorney in place for both health and finance; both of these have made my life a lot easier than it otherwise might have been, although getting them in the first place was not easy. Similar to your Dad, my Mum can be very stubborn, has suffered from depression for years and is an old hand at guilt.

I wish you didn't have to go through this as I would not want this for even my worst of enemies. I do understand how hard it is to manage this, a job, a family etc. before you even factor in the emotions of it all and the distance. I have really struggled over the past 4-6 years and all of this has taken an immeasurable toll on me and my health, and continues to do so. If I could go back knowing what I know now, I would try and be as practical as possible and I would not take no for an answer. Try to set things up that will help this journey. Things like the power of attorney, choosing a home, being closer etc. etc. would all help. It is not going to be easy, it is not going to go away and there is a lot ahead of you, so just doing what you can to help in any small way is something.

My heart goes out to you. Try and take comfort from this forum, I know I have in the past, and ask for help. There are good, kind people out there and there are people who understand, more than I feel this world should have. Most importantly you need to look after and be kind to yourself. You are doing your very best. XXX

Firstly, I would advise to move your mum. Dad had to move from a 3 month hospital stay to an emergency a care home for another 3 and then a 3rd time to a home nearer us all. We too had read about too much moving being distressing for people with dementia (PWD) but being able to visit him regularly and having him near felt better and was better for his wellbeing in the longrun. PWD will deteriorate at some rate anyway, as we all know, and moves do not always start a massive decline, sometimes just an initial unsettled period. My Dad was unsettled when we moved him to his 3rd & final home but he still settled (the best he could with dementia) and the benefits of more visits and sea trips sounds great for your mum & you. Secondly, what kind supportive words you have for the original poster. Good luck with your next steps with your mum.

 

[I thank you for the years]

attendance allowance starts from £62 a week and goes up to£90 depending on care needs. Surely it is not as much as £233 per week????

@leny connery £233.10 per week is the weekly personal care allowance rate that people in Scotland receive towards their care home costs once they have been assessed and it is decided that they do need residential care. Once an individual is in receipt of the weekly personal care allowance they are no longer eligible to receive Attendance Allowance. Prior to this point they can receive Attendance Allowance which would offset in part the weekly personal care cost that has not been received due to delays in the assessment process.

 

[SMBeach]

Thank you everyone for all your replies. It’s much appreciated.
Update:
I have been offered a room for 4 week trial (at a hefty cost to dads funds sitting in his bank). Will cost him around £4,900 which he has. I called social services yesterday who are appointing another social worker as the one appointed is going off sick a further 4 weeks. We’ve been waiting over 8 weeks now. Will social services back date any funds to the date I first contacted them? Or only from the date of assessment?

Will dad lose his homecare and have to go on a waiting list with no care at home in place after the 4 weeks is up? When he was in hospital he had to remain there for 4 weeks because the HomeServices department closed his case and had to start from scratch again which I found incredibly difficult to understand. I can’t see a home keeping dad like the hospital did and losing money because he has no Homecare.

I am reluctant to accept the room if dad is going to have to leave because it turns out he can’t afford to remain there (as we don’t yet know the final outcome of financial assessment). According to funding calculators, dad will be a self funder even though his savings are below the cap and even though his house will only leave him with a maximum of £80k once his mortgage balance is paid. It’s not going to last long. After that he’s total income will just be pensions of between £1.5-2,000 a month. No where near the £4,909 required. I realise in Scotland there is a standard care fund of around £800 per week which makes it affordable to dad with his pensions but as we haven’t been assessed I’m worried to assume he’ll get it when required.

I’m worried he will end up with no care after 4 weeks but this is one of the homes I was interested in as they have a very good throughout inspection report and I like what I’ve read about it and seen online. I also worry that if I tell dad it’s a 4 week trial that after 4 weeks he’ll be ready for a change and want to return home. Or should I not tell him it’s a trial??

I’d ask social services as soon as I can actually talk to the duty social worker who didn’t call me back. In the mean time if anyone can shed any light in what they think the best option would be? Best just to accept we will lose this room for now and wait for the assessment then take it from there?

Also, can anyone tell me if it’s me who has to get a valuation for dads hime carried out or does the authority organize its own valuation. This is in Scotland.

 

[Feeling unsupported]

Please do not allow yourself to feel that this is your responsibility. The 'duty of care' lies fairly and squarely with social services and the other professionals involved. I too got to a point where my head was exploding with the constant demands and questions, impossible problems etc. Added to this, I also have a father-in-law who tries to tell us it is 'our duty' to care for him (long distance) too. NO, it is not our duty or responsibility, we do what we can out of love, but please do not take on the unnecessary added guilt here. I have had to harden my attitude towards both parties, I have done what I can, but I only have one life and I intend to make the best of it.