my mum was diagnosed with Alzheimer's nearly 2 years ago, although I think she's had it much longer. I live 300 miles away and try to go to see her at least every 2 months. I have a lady who goes in everyday to basically be me and do what I would do if I lived round the corner. Mum likes her. It's me who is struggling. I don't know what to do next? Mum has started calling 999 saying her husband is having a heart attack, but her husband died over 4 years ago! I a man told she is not ready to go in a home and that I should keep her in her own home as independent as possible for as long as possible, but the stress of it dealing with it all from a distance is making me ill. Any thoughts?
Coping with the stress of mum's dementia from 300 miles away
- Thread starter Distant carer support
- Start date
We faced this dilemma and after much debate and soul searching decided we couldn't see mum in a home so moved her in with us. With support from Adult Social Care we have a fantastic care package in place that allows us to live our lives with the peace of mind Mum is safe with us. Ups and downs but on the whole humbling and so glad we did it
Long distance caring will destroy you, as you're discovering. But you have a big advantage having someone coming in daily who's accepted by your mother. My Mum would barely let me in half the time!
'Fortunately' I didn't have a family or relationship to worry about, so I started off going up to Mum on my days off, then I had to cut back my days at work, dropping back to just two days' work a week over the space of a year or so. But even that became unreliable as she'd panic when I was leaving, and I hate nothing more than letting people down. I was letting work down, and my Mum, so... So two days became one, then I took a year off, which suited work because they were trying to dump hours. And at the end of that year I decided I couldn't put Mum in a home 'so soon' when she might live another ten years or more based on her doctor's opinion of her overall health.
The dementia decline is relentless and inevitable, so now is the time to think ahead and either prepare for your mother going in to a home sooner rather than later, or to work out how you'll spend more time with her to ease your stress somewhat (being there is tough, but less tough than not being IMO!) Carers can come in multiple times a day, but unless you're very lucky, they don't remove the risks and stress significantly, especially when you're not able to easily check things yourself.
However I'll say that I was able to postpone my slide into life as a carer by installing a laptop and large screen in my mother's house (with the leads all taped together firmly and the power supply tucked away so she couldn't get to it easily to turn it off). Skype can be setup to accept incoming calls automatically, so I was able to connect to Mum any time we both needed it.
Of course it ended up with me working all night then leaving Skype most of the day while I tried to sleep, so it wasn't ideal. But for that period it helped Mum feel supported and reassured (sometimes!), and I was saving as much money as I could while simultaneously subsidising Richard Branson's next island purchase via Virgin Rail.
By then Mum was struggling to use the phone properly though, and often putting it down the wrong way, or not at all. So I'd have been stuffed if the laptop hadn't been in place. However internet issues and remote tech support can be a nightmare. That's helped in your case by the visitor you can work with from afar to tackle problems. I'd have sold my soul to have someone similar, but my mother was always a private person who hated visitors and that didn't improve with dementia.
I also put a couple of webcams in Mum's kitchen and the hall so I could keep an eye on her. So I was often able to head off potential issues in advance... though only by starting to live like some kind of security guard watching a prisoner. It didn't make me feel great, but it did allow me to keep a double life running for a while. But it was the hardest thing I've ever had to do and if I was starting again I'd have chosen a definite solution sooner (either going up there or institutionalising Mum). I'd probably have a few less wrinkles and a bit more hair if I had!
Sorry, this all turned a bit 'me, me, me', but hopefully my experience of the long distance slog is semi-useful. Not as useful as me going to bed though! Hadn't realised it was so late. I'd go through this again and try to make it a bit more positive if it was earlier, but it's not, and it's honest, so... good luck, and sorry if this is all a bit depressing. But if it helps, I feel like this whole process had made me a better person. A totally knackered, rather nervous about the future person, but better all the same.
And long-winded. Sorry.
'Fortunately' I didn't have a family or relationship to worry about, so I started off going up to Mum on my days off, then I had to cut back my days at work, dropping back to just two days' work a week over the space of a year or so. But even that became unreliable as she'd panic when I was leaving, and I hate nothing more than letting people down. I was letting work down, and my Mum, so... So two days became one, then I took a year off, which suited work because they were trying to dump hours. And at the end of that year I decided I couldn't put Mum in a home 'so soon' when she might live another ten years or more based on her doctor's opinion of her overall health.
The dementia decline is relentless and inevitable, so now is the time to think ahead and either prepare for your mother going in to a home sooner rather than later, or to work out how you'll spend more time with her to ease your stress somewhat (being there is tough, but less tough than not being IMO!) Carers can come in multiple times a day, but unless you're very lucky, they don't remove the risks and stress significantly, especially when you're not able to easily check things yourself.
However I'll say that I was able to postpone my slide into life as a carer by installing a laptop and large screen in my mother's house (with the leads all taped together firmly and the power supply tucked away so she couldn't get to it easily to turn it off). Skype can be setup to accept incoming calls automatically, so I was able to connect to Mum any time we both needed it.
Of course it ended up with me working all night then leaving Skype most of the day while I tried to sleep, so it wasn't ideal. But for that period it helped Mum feel supported and reassured (sometimes!), and I was saving as much money as I could while simultaneously subsidising Richard Branson's next island purchase via Virgin Rail.
By then Mum was struggling to use the phone properly though, and often putting it down the wrong way, or not at all. So I'd have been stuffed if the laptop hadn't been in place. However internet issues and remote tech support can be a nightmare. That's helped in your case by the visitor you can work with from afar to tackle problems. I'd have sold my soul to have someone similar, but my mother was always a private person who hated visitors and that didn't improve with dementia.
I also put a couple of webcams in Mum's kitchen and the hall so I could keep an eye on her. So I was often able to head off potential issues in advance... though only by starting to live like some kind of security guard watching a prisoner. It didn't make me feel great, but it did allow me to keep a double life running for a while. But it was the hardest thing I've ever had to do and if I was starting again I'd have chosen a definite solution sooner (either going up there or institutionalising Mum). I'd probably have a few less wrinkles and a bit more hair if I had!
Sorry, this all turned a bit 'me, me, me', but hopefully my experience of the long distance slog is semi-useful. Not as useful as me going to bed though! Hadn't realised it was so late. I'd go through this again and try to make it a bit more positive if it was earlier, but it's not, and it's honest, so... good luck, and sorry if this is all a bit depressing. But if it helps, I feel like this whole process had made me a better person. A totally knackered, rather nervous about the future person, but better all the same.
And long-winded. Sorry.
Hello @Distant carer support, welcome to the forum.
I think it may be a good idea to contact local Social Services to see if a needs assessment would produce a care package that would, indeed, enable your mum to continue to live at home in safety.
Details of this can be found in the AS Factsheet that can be reached by clicking this link https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf
It may also be an idea to check for support services in your mum's area and you can do a post code check by clicking on this link https://www.alzheimers.org.uk/find-support-near-you
In case you haven't got things like Wills, POA etc sorted you can also find a Factsheet etc about these things with these links
https://www.alzheimers.org.uk/sites/default/files/2018-07/AS_NEW_The dementia guide_update 3_WEB.pdf
https://www.alzheimers.org.uk/sites...loads/factsheet_lasting_power_of_attorney.pdf
I think it may be a good idea to contact local Social Services to see if a needs assessment would produce a care package that would, indeed, enable your mum to continue to live at home in safety.
Details of this can be found in the AS Factsheet that can be reached by clicking this link https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf
It may also be an idea to check for support services in your mum's area and you can do a post code check by clicking on this link https://www.alzheimers.org.uk/find-support-near-you
In case you haven't got things like Wills, POA etc sorted you can also find a Factsheet etc about these things with these links
https://www.alzheimers.org.uk/sites/default/files/2018-07/AS_NEW_The dementia guide_update 3_WEB.pdf
https://www.alzheimers.org.uk/sites...loads/factsheet_lasting_power_of_attorney.pdf
Hi this is my first post. I have the same feeling that some days I am only thinking of ‘me’. When I want time out I feel bad and selfish for doing so. I dread how things will be further down the road. My mum was diagnosed about 3 years ago, she has her good days and bad ones like most. That would not be so bad if she didn’t have so many other potentially life threatening problems. She has now stopped telling me if there’s a problem because she doesn’t like to worry me. So when I see her. Which is most days. Or FaceTime her on the days I’m not there I have to go over everything every time. Which is a lot of things everyday. We have been at 4 different hospitals in the past week to see different consultants. Another has been added today by the dentist who thinks she may have Ca of her tongue. Hence why I can’t sleep I have my granddaughter who is 8 with autism 3 nights a week so her mum can work. She lost her husband 3 years ago I have another granddaughter who I wish I could spend more time with. She is only 1yr. They only live round the corner. But I feel very protective of any spare time I get to myself and my husband. This is starting to put a strain on us all. Trying to keep everyone happy. The only person unhappy is me. My husband is very supporting but even this is now becoming a bone of contention. Not finding time for his family. Mum is not at the point of going in a home yet. We have asked her to move in with us as we have just upsized to accommodate this. But she won’t at the moment.Long distance caring will destroy you, as you're discovering. But you have a big advantage having someone coming in daily who's accepted by your mother. My Mum would barely let me in half the time!
'Fortunately' I didn't have a family or relationship to worry about, so I started off going up to Mum on my days off, then I had to cut back my days at work, dropping back to just two days' work a week over the space of a year or so. But even that became unreliable as she'd panic when I was leaving, and I hate nothing more than letting people down. I was letting work down, and my Mum, so... So two days became one, then I took a year off, which suited work because they were trying to dump hours. And at the end of that year I decided I couldn't put Mum in a home 'so soon' when she might live another ten years or more based on her doctor's opinion of her overall health.
The dementia decline is relentless and inevitable, so now is the time to think ahead and either prepare for your mother going in to a home sooner rather than later, or to work out how you'll spend more time with her to ease your stress somewhat (being there is tough, but less tough than not being IMO!) Carers can come in multiple times a day, but unless you're very lucky, they don't remove the risks and stress significantly, especially when you're not able to easily check things yourself.
However I'll say that I was able to postpone my slide into life as a carer by installing a laptop and large screen in my mother's house (with the leads all taped together firmly and the power supply tucked away so she couldn't get to it easily to turn it off). Skype can be setup to accept incoming calls automatically, so I was able to connect to Mum any time we both needed it.
Of course it ended up with me working all night then leaving Skype most of the day while I tried to sleep, so it wasn't ideal. But for that period it helped Mum feel supported and reassured (sometimes!), and I was saving as much money as I could while simultaneously subsidising Richard Branson's next island purchase via Virgin Rail.
By then Mum was struggling to use the phone properly though, and often putting it down the wrong way, or not at all. So I'd have been stuffed if the laptop hadn't been in place. However internet issues and remote tech support can be a nightmare. That's helped in your case by the visitor you can work with from afar to tackle problems. I'd have sold my soul to have someone similar, but my mother was always a private person who hated visitors and that didn't improve with dementia.
I also put a couple of webcams in Mum's kitchen and the hall so I could keep an eye on her. So I was often able to head off potential issues in advance... though only by starting to live like some kind of security guard watching a prisoner. It didn't make me feel great, but it did allow me to keep a double life running for a while. But it was the hardest thing I've ever had to do and if I was starting again I'd have chosen a definite solution sooner (either going up there or institutionalising Mum). I'd probably have a few less wrinkles and a bit more hair if I had!
Sorry, this all turned a bit 'me, me, me', but hopefully my experience of the long distance slog is semi-useful. Not as useful as me going to bed though! Hadn't realised it was so late. I'd go through this again and try to make it a bit more positive if it was earlier, but it's not, and it's honest, so... good luck, and sorry if this is all a bit depressing. But if it helps, I feel like this whole process had made me a better person. A totally knackered, rather nervous about the future person, but better all the same.
And long-winded. Sorry.
This all sounds a bit ‘me me me’ as you put it but we can only do what we can to the best of our ability.
We can give the best we can, but the best care doesn’t always mean you have to provide it.
Sorry such a long post. But a bit of a bad night
Welcome sweetheart, and you have said it, we can give the best we can but we don't always have to be the ones to provide it. It's good to hear from you, you sound really lovely person. You are giving so much, it's normal to think about how we can protect ourselves, how can we help others if we just become a human sacrifice? Go slowly on the mum moving in with you, this can turn out to be a very hard option.
Anyway, keep talking to us and so lovely to hear. Kindred
It is a very difficult one. I live in Spain and my dad is in Scotland . He looked after my mum for 10 yrs. It took its toll on him. He lost weight,his hair was exhausted and had a stomach ulcer. Carer stress.I couldn't do much because of the distance which always hurt. It didn't help me being an only child. He didn't have much of a support system apart from the dr. Mum fell and broke her femur and ultimately ended up in hospital and a nursing home. She is still here, just, and 94yrs end stage though.
Dad is so much better. It wasn't easy looking round homes and I felt like I/ we were letting her down. She is safe, fed and warm. Dad goes in ever other day and I visit twice/ three tImes a year. Not a much as I want. She isn't self- funding either.
Sorry, haven't got a lot of info. All the best.x
Dad is so much better. It wasn't easy looking round homes and I felt like I/ we were letting her down. She is safe, fed and warm. Dad goes in ever other day and I visit twice/ three tImes a year. Not a much as I want. She isn't self- funding either.
Sorry, haven't got a lot of info. All the best.x
Thank you for you honesty. I don't think there isn't an easy solution to this, but it's good to know how others have coped. Hope your future is as good as it can be. XLong distance caring will destroy you, as you're discovering. But you have a big advantage having someone coming in daily who's accepted by your mother. My Mum would barely let me in half the time!
'Fortunately' I didn't have a family or relationship to worry about, so I started off going up to Mum on my days off, then I had to cut back my days at work, dropping back to just two days' work a week over the space of a year or so. But even that became unreliable as she'd panic when I was leaving, and I hate nothing more than letting people down. I was letting work down, and my Mum, so... So two days became one, then I took a year off, which suited work because they were trying to dump hours. And at the end of that year I decided I couldn't put Mum in a home 'so soon' when she might live another ten years or more based on her doctor's opinion of her overall health.
The dementia decline is relentless and inevitable, so now is the time to think ahead and either prepare for your mother going in to a home sooner rather than later, or to work out how you'll spend more time with her to ease your stress somewhat (being there is tough, but less tough than not being IMO!) Carers can come in multiple times a day, but unless you're very lucky, they don't remove the risks and stress significantly, especially when you're not able to easily check things yourself.
However I'll say that I was able to postpone my slide into life as a carer by installing a laptop and large screen in my mother's house (with the leads all taped together firmly and the power supply tucked away so she couldn't get to it easily to turn it off). Skype can be setup to accept incoming calls automatically, so I was able to connect to Mum any time we both needed it.
Of course it ended up with me working all night then leaving Skype most of the day while I tried to sleep, so it wasn't ideal. But for that period it helped Mum feel supported and reassured (sometimes!), and I was saving as much money as I could while simultaneously subsidising Richard Branson's next island purchase via Virgin Rail.
By then Mum was struggling to use the phone properly though, and often putting it down the wrong way, or not at all. So I'd have been stuffed if the laptop hadn't been in place. However internet issues and remote tech support can be a nightmare. That's helped in your case by the visitor you can work with from afar to tackle problems. I'd have sold my soul to have someone similar, but my mother was always a private person who hated visitors and that didn't improve with dementia.
I also put a couple of webcams in Mum's kitchen and the hall so I could keep an eye on her. So I was often able to head off potential issues in advance... though only by starting to live like some kind of security guard watching a prisoner. It didn't make me feel great, but it did allow me to keep a double life running for a while. But it was the hardest thing I've ever had to do and if I was starting again I'd have chosen a definite solution sooner (either going up there or institutionalising Mum). I'd probably have a few less wrinkles and a bit more hair if I had!
Sorry, this all turned a bit 'me, me, me', but hopefully my experience of the long distance slog is semi-useful. Not as useful as me going to bed though! Hadn't realised it was so late. I'd go through this again and try to make it a bit more positive if it was earlier, but it's not, and it's honest, so... good luck, and sorry if this is all a bit depressing. But if it helps, I feel like this whole process had made me a better person. A totally knackered, rather nervous about the future person, but better all the same.
And long-winded. Sorry.
Hope all works out for you and your parents. I think it sometimes takes a crisis to stimulate the result.
Exactly. And for anyone with a family of their own to care for and contribute to, there's a limit to what can be done... but no limit to the worry.
My circumstances were unusual in that I had nothing to lose except a secure future in a below average wage job that I didn't enjoy. Losing that wasn't really a sacrifice, looking back. I was a loose end looking for a knot, and I found one. Or maybe I'm just the kind of idiot who jumps on a grenade instead of trying to throw it out of the trench? Who knows. When I'm 75 and still working some dead end job to make ends meet in a new era of declining benefits I may have changed my mind! But what's life for if not collecting regrets?
All I know for certain is that by doing what I did I allowed the rest of the family (all long distance like myself) to get on with their lives without worrying, and I'm protecting Mum's limited assets so that they go as far as possible for when she needs the care most, at the end of her life. It makes rational sense... to me anyway. But I've always been inclined to think we in the West have lost our way when it comes to family care, so I've been given the opportunity to put my politics into action on a very small scale. I may just be a well intentioned idiot and my mother might be far happier, despite the FTD, in a unit specialising is such care.
Anyway, the point of me sticking my grubby oar into the thread was to illustrate that there are no easy answers, whatever your circumstances. Things only get worse and the sooner intervention is made -- either by family or social services -- the better. However it's in those relatively 'early' stages that intervention is hardest and least appreciated. It's a terrible puzzle to have to tackle, but I found it far "easier" to tackle in person than trying to organise and assist from afar.
I wish everyone the very best of luck on their journey through this miserable condition. Now though, I wish myself the very best of luck persuading Mum to take her morning pills before they become afternoon pills. If at first you don't succeed, etc, etc.
Its good that you have somebody who can be your eyes and ears @Distant carer support
Make sure you keep in regular contact with them - maybe phoning regularly and make it clear that you want and need to know what is going on.
The other thing I would mention is that it might be a good idea to look around at care homes near you (and perhaps also near her) to get a feel for them, so that if there is a sudden crisis you know about them.
Make sure you keep in regular contact with them - maybe phoning regularly and make it clear that you want and need to know what is going on.
The other thing I would mention is that it might be a good idea to look around at care homes near you (and perhaps also near her) to get a feel for them, so that if there is a sudden crisis you know about them.
This statement is very true, I was aware there was something wrong but not really what, I knew it was likely dementia but had no understanding of it. My mum lived 200 miles away, we never visited her (long story, mum's choice) she always drove up to see us, so I didn't realise the magnitude of the issues, as due to 'hostess mode' she presented better than she was when we saw her. Her last visit to us before the crisis I was extremely concerned, one of my neighbours told me I'd have to wait for a crisis, whether I could have intervened I don't know and haven't worried about.
When the crisis came, it was obvious mum couldn't return to her house, it wasn't fit for habitation (and hadn't been for a while - even longer story), so she stayed with me and my brother for alternate fortnights whilst I found her somewhere to live.
Mum did say she wanted to live with me, but I never considered this for a moment, my children were 8 and 12 and it was clear our then busy lives couldn't have accommodated her needs, our lives have changed as the children got older, it would have been harder to fit mum in to our current lives we couldn't then forsee and mum's needs are much more now than they were. In the time she stayed with us it became very clear it wouldn't have worked, continued criticism of son at meal times for his table manners (he's dyslexic and has the poor fine motor skills which go with it) are just one example, meal times fitted round mum instead of children's activities also was a big issue.
If I hadn't had children at home I might have considered it, but knowing what I now know, from reading TP this would never have worked for me or my husband. The continuing growing needs of a PWD and the fact that however much you give to dementia it always needs more make many carers virtual prisoners in their own home, and they sacrifice their own lives, without necessarily making the PWD any happier.
In my case I realised within about 10 days that trying to keep mum in her town wouldn't work for me. I found a very nice housing association sheltered extra care flat (the extra care bit is very important) which she moved into 4.5 years ago and is still there. She told me yesterday "old age isn't all bad, I'm very happy". When she is no longer able to live where she is I will look for a care home.
I'm not advocating sheltered extra care, but there comes a point when a PWD needs more than one person can give. I hated being told she was safe now, when I moved her, I didn't really understand that was the most important thing, she missed her friends and church, although always liked the flat, and had enough insight to know it was the right thing for her after a few months.
If your mum is phoning 999 she might be at the stage where her anxiety needs round the clock company to alleviate it, medication can help, but arranging this from a distance is hard.
As Canary said, look round in your area for something suitable, whether care home, sheltered extra care, or flat. Your mum won't understand the need and won't readily agree, and will need strong guidance or downright point blank given no choice to make the move but when you can no longer support her from 300 miles without damage to yourself the time has come to bring her nearer to you. A damaged carer can't care properly.
My father suffered a series of falls in early 2013 and was hospitalised after the second. That fall wrecked his life; until then, he lived independently. He was 87 when the falls took place. After
he was hospitalised, I travelled a 300 mile round trip to see him twice every week. It meant I could no longer work full time and I stopped working as I could find no suitable positions which would enable me to work part time.
My father received brilliant care from the ward staff in the hospital; I cannot say the same for the back office managers and coordinators, whose only interest was to get him out of hospital and into a home. Given that my father suffered from severe cognitive impairment, was completely immobile, was unable to eat and drink and suffered from a range of other issues, I applied for CHC funding for him. The assessment was a sick joke; I was shouted down by NHS staff when I tried to ensure that my father's needs were properly considered. Eventually we agreed on his level of needs, and these rendered him eligible for CHC funding. All well and good. However, after the assessment took place, the assessor/s altered the scoring in several care domains and their alterations meant that he was ineligible for funding. This was in 2014.
I worked for nine months in 2014-15 as I found a post close to where my dad was located. Once I finished that contract, I moved home and resumed my twice weekly visits to see him. I continued to fight the CCG over their CHC decision and am still fighting them now. It has taken a massive toll on my health. My father died in 2016, but I have had no respite. The CCG have falsely accused me of a) visiting him once every two months, b) knowing nothing about my dad's health since I spoke to doctors only once a year; they have ignored hundreds of pages of medical evidence to justify his eligibility for CHC funding and what they have done amounts to fraud.
When I look for new roles, people ask me what I have been doing. In modern Britain, looking after a sick relative is frowned on. If you say you took time out of the workplace to care for a dying relative you will be passed over for the post. It demonstrates just how disgusting and uncaring Britain is these days.
he was hospitalised, I travelled a 300 mile round trip to see him twice every week. It meant I could no longer work full time and I stopped working as I could find no suitable positions which would enable me to work part time.
My father received brilliant care from the ward staff in the hospital; I cannot say the same for the back office managers and coordinators, whose only interest was to get him out of hospital and into a home. Given that my father suffered from severe cognitive impairment, was completely immobile, was unable to eat and drink and suffered from a range of other issues, I applied for CHC funding for him. The assessment was a sick joke; I was shouted down by NHS staff when I tried to ensure that my father's needs were properly considered. Eventually we agreed on his level of needs, and these rendered him eligible for CHC funding. All well and good. However, after the assessment took place, the assessor/s altered the scoring in several care domains and their alterations meant that he was ineligible for funding. This was in 2014.
I worked for nine months in 2014-15 as I found a post close to where my dad was located. Once I finished that contract, I moved home and resumed my twice weekly visits to see him. I continued to fight the CCG over their CHC decision and am still fighting them now. It has taken a massive toll on my health. My father died in 2016, but I have had no respite. The CCG have falsely accused me of a) visiting him once every two months, b) knowing nothing about my dad's health since I spoke to doctors only once a year; they have ignored hundreds of pages of medical evidence to justify his eligibility for CHC funding and what they have done amounts to fraud.
When I look for new roles, people ask me what I have been doing. In modern Britain, looking after a sick relative is frowned on. If you say you took time out of the workplace to care for a dying relative you will be passed over for the post. It demonstrates just how disgusting and uncaring Britain is these days.
Hi there - I managed to juggle both worlds on a weekly basis for 7 yrs (3weekly basis for 3 yrs before that.) I spent half week at work across the water + ‘me’ time in evening when away. Then back to mum to take on full-time care for 3-4 days.
I asked if care package cd be based on fact that I was based and working so far away. It took months and months of waiting but I did get a better (direct payments) care package in the end. That was 8 yrs ago so before the economic downturn.
Other main changes were:
- going part-time at work
- booking cheap flights months in advance
- doing all shopping online inc ordering of groceries and mums meals
- no holidays but I think the change of air did me good
- the carers were great - a ‘sit’ wd be better company for yr mum as the x two are in and out in under 10 -15 mins in my experience (and I pay for double or triple the time)
The hardest things were finding time for medical and household appointments back at my flat as during daytime I was always at work and had no leave to get time off.)
This was a way of life for 7 yrs. I had to give up this lifestyle in the end (and move closer to mum) as care costs suddenly went up steeply - and mum had more needs, staffing issues etc.
I have found it rewarding and don’t regret a minute of it. (I suppose I might do one day when I have to start again and have a v small pension.)
I asked if care package cd be based on fact that I was based and working so far away. It took months and months of waiting but I did get a better (direct payments) care package in the end. That was 8 yrs ago so before the economic downturn.
Other main changes were:
- going part-time at work
- booking cheap flights months in advance
- doing all shopping online inc ordering of groceries and mums meals
- no holidays but I think the change of air did me good
- the carers were great - a ‘sit’ wd be better company for yr mum as the x two are in and out in under 10 -15 mins in my experience (and I pay for double or triple the time)
The hardest things were finding time for medical and household appointments back at my flat as during daytime I was always at work and had no leave to get time off.)
This was a way of life for 7 yrs. I had to give up this lifestyle in the end (and move closer to mum) as care costs suddenly went up steeply - and mum had more needs, staffing issues etc.
I have found it rewarding and don’t regret a minute of it. (I suppose I might do one day when I have to start again and have a v small pension.)
Have to say the biggest problem I've had with helping care for my Dad a long way away is lack of communication. Events occur and I'm often the last to know about them. Partly this happens because some of the rules are so daft, eg. day care visitors are not allowed to call relatives if something happens, they have to call their head office instead, who might notify social services (SS). Hours later I might receive a call (or even just an email the next day or somesuch), but sometimes nobody calls at all, first I learn of some earlier incident is when reading through the care visitor log book during my next visit. Sometimes a care visitor will phone me anyway though, or send a text, depends on the person.
Thus, despite having both welfare and financial POA for my Dad, often it seems like I have a distinct lack of contol over events. When my Dad went into hospital earlier this year, I didn't know until many hours later in the day, long after at least half a dozen different relevant people could have called me (persons at the day care office, SS and the hospital). With my Dad now in a care home temporarily before hopefully soon returning to his own home, the same issue applies, I find there is communication going on between the care home, medical people and the SS which contradict decisions I have made or have stated as future intent. I get the distinct impression some of this is occuring because I have organised much of the care arrangements without SS involvement and they don't like it, to the point of obstructing what should be a normal application for Personal and Nursing care funding assistance.
For any kind of important information, always insist on receiving it in writing, and try to avoid having detailed conversations over the phone since key points can be lost from memory (or at the very least make notes as one is talking). Do it in writing whenever possible.
As I'm sure many of you know, the most shocking thing of all is how much it all costs. From everything I've learned so far, to be completely self funding one needs to have a total elder-years savings/etc. income of about 6K per person per month at current cost levels. Anything less than that and a degree of state involvement is inevitable, which can get very complicated. Sometimes I wonder if one would be better off just having no savings at all because trying to behave sensibly and save for the future just means one ends up getting taken for a ride at the end as one finds out this, that or other service is not available, has waiting lists, etc. Where my Dad lives, for example, NHS Continuing Care does not exist at all, and neither does Reablement care, which makes a right pickle of what would be the normal process of dealing with someone who's due to leave hospital. He also never had more than 2 care visits/day, despite all concerned saying he should have had 4, a situation which helped create the problems that led to his hospital admission in the first place. I dread to think where he'd be without my being able to look after his interests, probably rotting in a lowest-cost care home, far away from his neighbours and friends.
Btw, you guys haven't mentioned it much but for me just the raw travel itself I find exhausting, takes a whole day to get to where my Dad lives (on an island, so it's multiple buses, trains and a ferry). After I return I'm basically beat for most of the following day. No spring chicken myself now. :}
Someone mentioned that earlier intervention in a person's affairs is often logical but very difficult because the person concerned either doesn't realise there's a problem or is too proud/stubborn to admit they need help. I can certainly confirm that conumdrum. I'd say one of the biggest problems is that an elderly person, especially those who have lost their partner, tends to lose sight & control of their finances, a lot of money ends up being wasted in all sorts of ways, and they can get taken advantage of by unscrupulous sales people (that happened to my Dad, he didn't want to end the monthly wine purchases because he enjoyed the company of the visiting sales rep, but until I could finally shut it down via POA he was spending as much as 500/month on wine he didn't need and never used anyway, building up a collection of some 300 bottles I now need to sell off). Payments to charities, duplicated insurance policies, all sorts of things, it all adds up. The savings I made in just 18 months was enough to cover the cost of a proper walk-in shower/bathroom in my Dad's downstairs bedroom.
Lastly, I found out recently that there exist devices such as necklaces and bracelets a person can wear which include motion sensors & suchlike so that they can detect if the wearer has fallen over, or otherwise appears to be in difficulty, and if so they send an automatic SMS alert. Worth looking into for those who have distant relatives.
Boromir.
Thus, despite having both welfare and financial POA for my Dad, often it seems like I have a distinct lack of contol over events. When my Dad went into hospital earlier this year, I didn't know until many hours later in the day, long after at least half a dozen different relevant people could have called me (persons at the day care office, SS and the hospital). With my Dad now in a care home temporarily before hopefully soon returning to his own home, the same issue applies, I find there is communication going on between the care home, medical people and the SS which contradict decisions I have made or have stated as future intent. I get the distinct impression some of this is occuring because I have organised much of the care arrangements without SS involvement and they don't like it, to the point of obstructing what should be a normal application for Personal and Nursing care funding assistance.
For any kind of important information, always insist on receiving it in writing, and try to avoid having detailed conversations over the phone since key points can be lost from memory (or at the very least make notes as one is talking). Do it in writing whenever possible.
As I'm sure many of you know, the most shocking thing of all is how much it all costs. From everything I've learned so far, to be completely self funding one needs to have a total elder-years savings/etc. income of about 6K per person per month at current cost levels. Anything less than that and a degree of state involvement is inevitable, which can get very complicated. Sometimes I wonder if one would be better off just having no savings at all because trying to behave sensibly and save for the future just means one ends up getting taken for a ride at the end as one finds out this, that or other service is not available, has waiting lists, etc. Where my Dad lives, for example, NHS Continuing Care does not exist at all, and neither does Reablement care, which makes a right pickle of what would be the normal process of dealing with someone who's due to leave hospital. He also never had more than 2 care visits/day, despite all concerned saying he should have had 4, a situation which helped create the problems that led to his hospital admission in the first place. I dread to think where he'd be without my being able to look after his interests, probably rotting in a lowest-cost care home, far away from his neighbours and friends.
Btw, you guys haven't mentioned it much but for me just the raw travel itself I find exhausting, takes a whole day to get to where my Dad lives (on an island, so it's multiple buses, trains and a ferry). After I return I'm basically beat for most of the following day. No spring chicken myself now. :}
Someone mentioned that earlier intervention in a person's affairs is often logical but very difficult because the person concerned either doesn't realise there's a problem or is too proud/stubborn to admit they need help. I can certainly confirm that conumdrum. I'd say one of the biggest problems is that an elderly person, especially those who have lost their partner, tends to lose sight & control of their finances, a lot of money ends up being wasted in all sorts of ways, and they can get taken advantage of by unscrupulous sales people (that happened to my Dad, he didn't want to end the monthly wine purchases because he enjoyed the company of the visiting sales rep, but until I could finally shut it down via POA he was spending as much as 500/month on wine he didn't need and never used anyway, building up a collection of some 300 bottles I now need to sell off). Payments to charities, duplicated insurance policies, all sorts of things, it all adds up. The savings I made in just 18 months was enough to cover the cost of a proper walk-in shower/bathroom in my Dad's downstairs bedroom.
Lastly, I found out recently that there exist devices such as necklaces and bracelets a person can wear which include motion sensors & suchlike so that they can detect if the wearer has fallen over, or otherwise appears to be in difficulty, and if so they send an automatic SMS alert. Worth looking into for those who have distant relatives.
Boromir.
I was long-distance caring for my mother for a couple of years, including 18 months where she had several hours of self-funded care a day. I agree that communication was very difficult, things would slip through the cracks and I sometimes found out things from neighbours which the care company hadn't thought important enough to mention - like her wandering off in the dark and rain, no coat, no keys etc. She had one of the pendants, not for falls but for roaming - she always removed it as soon as the carer left so it wasn't a lot of help!
The wandering, and the inability to keep track of what was happened as she deteriorated, was one of the main reasons I moved my mother to a care home earlier this year. She loves it, she has constant company and help whenever she needs it, and from my point of view she is now 15 minutes away so it's easy to visit. I am surprised at the level of costs you mention, my mother's care home is £3300 a month, and when looking the highest prices seemed to be around £4400 (that was for one of the '5 star hotel type' homes). But my mother is in a dementia care home, and maybe you are talking about a nursing home which I know is more expensive.
Thanks for the reply! Indeed, my Dad is receiving nursing care, currently costing 1K/week (he lives on an island so costs are generally higher, a double whammy); he's always wanted to remain at home though if possible. The care home doesn't have any long term places available, while the council-run home also has no places, so any permanent care home would mean leaving the island - I do not think he would last very long in a mainland care home, with few able to visit him.
Thus, my intent is that he return home when sufficiently recovered (regained strength), in about 3 or 4 weeks' time (or after new year if the logistics of organising the move so near to xmas are too complicated) where he would then have a 24hr live-in carer (LIC) which costs about 1300+/week, at which point he ought to be able to obtain Personal and Nursing care assistance of 241/week, something being denied at present because his current care home accomodation is supposed to be temporary, and the CNA didn't recognise the necessity of nursing care even though he's been receiving it (and paying for it) since the end of Aug. I am of course going to appeal, but it might be easier to delay the CNA process until he returns home (that really shouldn't be necessary, but the SS do make these things very difficult at times).
I agree about the pendant issue, my Dad would often take his off as he didn't see the point of it, though as his dementia progressed he cared ever less about this and now isn't bothered by its presence. A bigger issue though was that when he had some kind of problem, he forgot that he even had the pendant and alarm service available. Hence why, living at home once more, a 24hr live-in carer is the best option, doubly so as not only does he need 1-on-1 attention with regard to help eating/drinking and other matters, he will also find the continuous company a great relief, and at home his neighbours, friends and family can far more easily visit him, phone, etc. More expensive, but worth every penny. I completely redecorated the old upstairs main bedroom to be where the LIC would live, but I plan on making some further modifications such as a direct alarm arrangement so he can alert the LIC if he needs help at night, etc.
Alas it takes me a whole day just to reach his home on the island, and the care home is 16 miles (two buses) from his home, with few bus connections.
His elderly neighbours tell me that such places are understandably popular with retirees because of the quieter life, closer community, etc., and these are certainly good things (very safe, very little crime), but as one ages and various medical issues set in, especially dementia & suchlike, the remoteness of island life can become a severe hindrance. Neighbours are further away than one would desire, food/fuel costs are much higher, service provision is more limited, public transport is less prevalent, etc. Many elderly people living on islands become socially isolated just by the nature of where they live, and of course it's harder for off-island family to visit. I expect similar issues arise for those living in mainland rural areas.
Boromir.
I was a long distance carer for several years before my mother moved into a care home 2.5 years ago. It is only with the benefit of hindsight that I can see how many years she, in effect, struggled with living independently. The deterioration was gradual but the AZ symptoms started almost 10 years ago, when she couldn't manage her finances (something she had always been on top of), although she was diagnosed 6 years ago. A local domiciliary care company was good and mum was receptive to the care, but underneath I know she didn't like the number of different faces she had calling as she couldn't remember them. Mum did gel with one of the carers and, to a degree, realised she benefited from the support but it reached the point where she needed 24 hour care - there were too many risks to her safety for her to live alone (eg. wandering at night. putting things in microwave for lengthy periods, unlocking doors etc). I think I put off looking for care homes as I dreaded moving mum but once I did and found a residential CH that would take someone with dementia, one which I immediately felt would be ideal for mum close to where I live, I arranged for mum to stay for a short break when a room became available. Mum has stayed there and, even though she was upset initially, within a week of moving in she lost the 'scared' appearance that greeted us latterly when she lived alone. Mum is still mobile although she is now late stage 6/early stage 7, but she still prefers company to being alone - something that really manifested itself during those years of struggling to live independently.
I realise everyone is different and deals with the situation in various ways but just wanted to share my experience. I wish you all the best. It's a difficult 'journey' I know.
I realise everyone is different and deals with the situation in various ways but just wanted to share my experience. I wish you all the best. It's a difficult 'journey' I know.
