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Is anyone in a long-distance caring situation like me?

Jowan

Registered User
Oct 15, 2014
20
Somerset
Hello. I'm brand new here, and have only just acknowledged that I'm a carer. Just realising that has been helpful, but I feel very, very alone. Is there anyone else like me?

My aunt lives 120 miles away and now has severe Alzheimer's. I've had LPA for her for several years, along with another person who's worse than useless. My auntie is still living in her own home with full-time live in carers, privately employed.

This has turned into more than a full-time job. I'm not in paid employment, and have no prospect of getting work while I'm looking after auntie. I deal with her paperwork, post, finances. I have cleared her house to enable carers to stay. I pay the carers and deal with them. I arrange appointments and deal with HCPs. I have to think about how her care needs will change (hopefully before crisis point) and make decisions. I even have to make arrangements about the bloody cat.

I'd feel so much better if I didn't feel I was the only one. I have fantasies about moving auntie into a care home, which is NOT the best thing for her at the moment, but would be so much easier.

Sorry for whining. :(
 

laineyb

Registered User
Feb 3, 2009
49
northamptonshire
I too am a distance carer for my mum, it is difficult but I have mum in a super care home and they make it as easy aspossiblefor me, but it has been a rocky road getting to this point, I look after day to day stuff (hospital visits and her general welfare etc) my sister does the finances such as paying the care home and. I have two other sisters that do nothing, but my. Mum is in a good place and is happy where she is and that's what counts, if I can help please fill free to pm me x

Laineyb
 

MeganCat

Registered User
Jan 29, 2013
356
South Wales
I cared long distance for a couple of years, online shopping, dealing with CPN & SW, carers (dog) finances and other seemingly simple problems to solve that are a nightmare long distance eg hall light bulb gone out!! Sky box frozen :eek: when I went up to visit I spent all my time sorting things, shopping, cleaning etc

Mum went into hospital and was moved from there down to a care home near me - it's much easier (still have finances etc to deal with) but not sick with anxiety between and every time phone rings any more (my old ring tone makes me feel sick as a result so have assigned it to CH)
Time we spend now is quality time making nice memories - eating ice cream in the park Today I had a relaxing hour painting mums nails and moisturising her hands :)
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
I cared long distance for a couple of years, online shopping, dealing with CPN & SW, carers (dog) finances and other seemingly simple problems to solve that are a nightmare long distance eg hall light bulb gone out!! Sky box frozen :eek: when I went up to visit I spent all my time sorting things, shopping, cleaning etc
So remember how frustrating it was dealing with these issues at a distance; neighbours must have got fed up of me cajoling them to go down to mum's when she had, yet again, got in a muddle with the TV or video recorder.

Sadly mum's health has continued to go downhill since she moved to a care home near me but at least I don't have that sense of fear any more that something awful will happen when nobody is there to help.
 

Oxy

Registered User
Jul 19, 2014
955
Caring at a distance is super hard. You are always on tenterhooks and every normally little thing becomes a major stressful event. The oil companies made much profit during that time!!! Also you feel chained to the phone trying to help sort things till it's no longer feasible and I would recommend when in that situation to plan for future re care as a crisis will come to bite and then the incorrect decision can be made. Important to listen to advice of friends aswell and not to let heart rule head.
 

Katrine

Registered User
Jan 20, 2011
2,839
England
Hi Jowan. You're not the only one but it sounds as if you are burdened with solo responsibility whereas I have encouragement and some small degree of practical support from other family members.

I have been a long-distance carer for my mum for almost 7 years. 500 miles in our case. My mother also has live-in carers. There is a lot of administration and financial management. You have my sympathy. Her house is modern and in good repair, and she has the funds for me to pay a gardener, window cleaner, and various workers to repair and improve things as needed. If you're doing the job with very limited funds it must be very tough. My mother isn't rich but with income and savings she has enough to pay the bills for another 4 years. Then I suppose we would have to sell her house, but she is unlikely to live that long.

I got her AA and Direct Payments from the LA, Council Tax disregard, Blue Badge. It takes time. I didn't achieve all that in one year. This year I got grants for a new boiler, ramp and wetroom. Great, but it still takes forever to get the work done. I expect it will be 2015 before we get a date for the wetroom. My mother is 90 next month. Will it all be achieved in her lifetime? :rolleyes:

I used to fly up regularly to Scotland (on her dime) but this year I have been driving. It takes me 3 days because I get too tired with the long distances. A few times a year my husband comes up to help. Until a year ago I was supporting my MIL who has dementia, so I couldn't spend more than 5 days away because it was difficult to get other family members to cover the daily support visits. Now I have the luxury of more free time.

For a few years after my first redundancy I worked part-time at different temporary jobs, which fitted around my carer duties. With my patchy recent job record I was no longer an obvious choice for anyone's shortlist. I eventually stopped getting interviews and last year gave up the job seeking. The constant rejection was doing my head in. I am fortunate to have had a partner in work, but I mourn the career I used to have and am now too old to pursue.

I wouldn't call what I do a full-time job, but it is definitely a responsible and permanent part-time job (without pay). My husband and I are now her legal guardians, which will involve more work for OPG. I will have probably spent about 25% of my year away from home in 2014. I have been organising building works and adaptations to my mother's house. We needed a loft conversion to create more bedrooms, now that my mother has 2 carers living in at all times. I'm going back next week for more. A wheelchair ramp, tree pruning and organising the next project, which will be her wetroom.

It's different when it's your mother I am sure. Not that we had a brilliant relationship in the past but that's water under the bridge. I feel blessed that we've had so much more quality time together than I ever could have hoped for. She lives in a lovely part of the world, and I get my regular injections of sea and mountain views. These are my compensations for the time and responsibility involved.

I'm not sure if I could have made such an indefinite commitment to someone who wasn't my mother. I also wouldn't have done it if she'd continued to be the antagonistic and critical person she used to be. People can suck you dry. We are all entitled to our own lives, not being permanently subservient to someone else's needs.

None of us expected my mother to live so long. 7 years ago she was in hospital at death's door. I initially agreed to being her main supporter with an expected duration of 2-3 years, 5 at the most. She has surprised us all by her stamina. Now I am used to how things are and don't want it all to end.

That sounds horribly callous. :eek: Of course I want her to go on enjoying a reasonably happy quality of life.
I also enjoy my 'job'. It satisfies my professional urges. I use the skills learned in my working life to manage her household and care. That is a frank admission of the selfish pleasure I get from doing the job successfully. I hope that it may give you fresh thoughts about your own sense of achievement. OK, it's not earning a living, but it is a successful job in its own way. What is it they say? Life is what happens while you are making plans.
 
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RedLou

Registered User
Jul 30, 2014
1,162
My father lives 1000 miles away. He retired to the Med and refused to return when the diagnosis of Vascular Dementia was made. I've spent approximately 3 months of this year flying back and forth (currently he's in a long stay ward so I have to talk to the doctors) and managing his affairs as my brother has moved to the US. I am self-employed so I'm losing income hand over fist and it's not really fair on me and my husband (also self-employed). Indeed, I'm having to fight against resentment.

It was worse when he was still at home, because I'd get calls about things I couldn't do anything about. But he'd want me to contact his friends to sort them out instead of asking himself. It was a nightmare, too, for a handful of nice friends and neighbours who did his shopping or rushed over when he fell, or a carer had to leave for the next appointment when he had locked himself in the loo.
And on top of everything, he would moan if his carers didn't speak English. What did he expect?!
I am currently waiting to see if he will ever be released from the long stay ward. If he goes home, it will be worse for me. And then I feel guilty about thinking of my own concerns instead of his preferences. On the other hand, as my brother points out, Dad thinks he'd be happy at home but in fact he's miserable all the time now - anywhere, any time. When he says he wants to go home, he is imagining his life of a year or two ago when it had some quality. It's the disease...
 

Solihull

Registered User
Oct 2, 2014
97
West Midlands
Jowan, you are entitled to your life. Time goes by so quickly and us carers eventually have to make tough decisions. I am an only "child" now 63 and have been watching over mom for the last 13 years. Her memory started fading about 3 years ago & during this 3 years I have not really allowed myself live my own life without the dreaded phone ringing. It became phone calls in the middle of the night just to say "hello" & bless her she has no idea of the stress as she worried about small things that for me meant a twenty mile round trip to rectify and no quality time with her as others have said-you spend all your time doing damage limitation. Now Mom is in a care home (not all plain sailing) but I am beginning to see her as a separate person again and we have repetitive conversations which I can deal with - a bit like my grand children. However, her dignity has been restored and also our quality time together. Perhaps Jowan you could start making plans x
 

Lizzy11

Registered User
Oct 30, 2014
2
London
I cared for my father at home for some time, but sacrificed much of my own life at that time and found it difficult to get someone to help me with some of the tasks.
He went into a care home near me, but it wasn't quite right for him and I spent a lot of time in meetings with staff there and felt the need to visit him every day.
Eventually, I found him a care home that couldn't be better! The staff turnover is low, the food is good, there are activities, and opportunities for lovely walks in the park with a member of staff and he has as good a life as he can there. He is happy too.
All this means that I no longer worry about him and simply enjoy his company when I visit him. If the care home is good and right for the person, it makes all the difference!
 

secondtimeround

Registered User
Sep 1, 2014
10
London
Jowan, you are not alone. I looked after my stepmother from 120 miles away and now my aunt from closer but it takes as long to drive there. I have LPA and have a huge file of paperwork from sorting out the finances, plus arranging carers, the hairdresser, the gardener, the gas service...... The main problem I've found is that no-one tells you anything (if you are self funding you are left to get on with it) eg I found out about the council tax exemption for those on AA for mental incapacity from a friend, so this time round at least I knew the ropes. My aunt is now in a care home following a sudden deterioration, probably brought on by malnutrition (she wouldn't let the carers cook, nor would she accept meals delivered), and I echo the advice given above to line up some possible care homes ahead of time - I had already inspected some and had a couple in mind and fortunately one had a vacancy - choosing a care home is not something you want to do in a rush. I feel as though a ton weight has lifted, I didn't realise quite how stressful it was constantly worrying about what was going on.

My main thought about all of this is that in these situations we have to make difficult decisions and all you can do is what seems right to you at the time, not being guilt tripped by what others will think. And you need to protect yourself, you are entitled to a life as well. Remember this is a passing phase, it will end.
 

Mick_P

Registered User
Feb 23, 2012
37
Rome, Italy
Hello Jowan, welcome to the forum, you'll find a lot of help and comfort here.

I live 1500 miles from my mum (I'm in Italy, she's in England), and my sister lived about 80 miles away, until this summer.

Mum has been going downhill with vas-d for seven or eight years and while my dad was alive they managed to get by at home with carers calling in, meanwhile I'd do online shopping and the like and my sister would get over there as often as possible. Like others here, whenever I visited it was hard to have quality time because I was constantly fire-fighting, catching up with stuff that needed attending to.

My dad died this summer and we had to take the decision to get my mum settled in a home, and a home close to my sister. It was a hard decision and has meant the selling of the family home, and it hasn't all been plain sailing, with Mum being disruptive and awkward to some extent in the beginning (who wouldn't be?). But my sister and I believe it has been the right thing and Mum now leads a much fuller life than she had been doing with my increasingly house-bound father. She sees far more people, they do lots of activities (theatre trip last night to see South Pacific), she's eating properly, she has other trips out... it was a good decision and one you might want to consider. I know it seems as though staying at 'home' ought to be the best thing, but what Mum thinks of as 'home' is almost certainly not what the reality would be any more.
 

Pottingshed50

Registered User
Apr 8, 2012
514
I too am a distant carer (160 miles) but when I read the posts here that is nothing compared to you all. Mum is 95 and in a Residential Care Home, self funding, hubby and I are not getting any younger and driving a long way and back in a day is out of the question so to visit entails a hotel stay. Yes we have relatives nearby to Mum but you just cannot keep pitching up and saying you want to stay and I wouldnt do it.

I do feel for you all. I have an EPA and so do all of Mum's finances. I have a sister who lives close but has never got on with Mum and now refuses to visit her at all which , although Mum does not realise it, makes me sad. Life is too short.

But as I say compared to all of you this is nothing. Whether you live close or away you can never be 100% certain of what is happening 24/7 and it is a constant worry.
 

AlexB

Registered User
Jun 20, 2012
5
Long-distance caring

My empathy is with everyone who cares long-distance for someone with dementia. There is such a feeling of helplessness when you cannot give them a hug and tell them everything will be fine.

I emigrated to Australia 8 years ago with my wife and children when my Mum had only just started to experience short-term memory problems (later confirmed as Alzheimers). At that time my stepfather, a retired G.P. (married to my Mum for 30 years) was still able to look after my Mum. They sold their house and moved into an assisted-living development. They seemed well prepared for the future, happy in the knowledge that they could continue to live independently in their own apartment but could also receive help with personal care, cleaning and laundry if/when this became necessary. I planned to return to the UK at least twice a year, my stepbrother and his wife lived in the same county as my Mum and my stepfather, so I thought we had all the bases covered! How naive I was back then!

It is amazing how much can be achieved online. The internet is a lifesaver, being able to order things from websites and arrange a next day delivery slot. Over the years we have ordered a wheelchair, bedding, clothes and groceries from 9,000 miles away. Phone calls can be a problem with different time zones. We made sure we sent my Mum and stepfather letters and photos regularly and phoned them nearly every other day.

Things were fine until my stepfather was also diagnosed with dementia (vascular). My stepbrother said his father would need to go into a care home, without any mention of my Mum, without any consideration of what his father would want to do. I thought we should engage the help of carers in the first instance, before making a rushed decision. My stepbrother disagreed but eventually we organised help with cleaning the apartment and help with laundry. Our parents were able to eat a 3-course lunch in the restaurant each day and we organised a regular delivery of groceries so they could make their own breakfast and sandwiches etc. Both parents were displaying mild symptoms of their different types of dementia and they muddled along for a few years without too many major problems.

Everything seemed to change when my stepbrother took over control of his father's finances (his father had set up an Enduring Power of Attorney). My stepfather was now declining more rapidly than my Mum and he needed help with washing and dressing. My Mum didn't like the intrusion of carers coming into the apartment and she often refused to let them in. My stepfather also resisted the offer of help from time to time. Without any consultation my stepbrother (like his father, also a G.P.) contacted Social Services and arranged a meeting to discuss our parents' situation. My wife and I flew back to the UK in order to be there. At this meeting my stepbrother tried to persuade a Social Worker and a Community Psychiatric Nurse that his father needed to go into a care home but they disagreed and thought it was better to keep our parents together in their own home. They said they would work with our parents to persuade them to accept more help over the coming months. They felt neither parent was at the stage of needing to go into a care home. Ignoring their advice, my stepbrother waited until we had returned to Australia and then told us he thought my Mum could cope perfectly well if she continued to live in the apartment but he said his father should go into a care home as soon as possible. He had made arrangements with a care home which was a five minute drive away from where he lived but an hour's taxi ride for my Mum! I was shocked that my stepbrother (he was a G.P. remember!) thought it was a good idea to bundle an 82 year old lady with Alzheimers into the back of a taxi for a two hour round trip each time she wanted to see her husband. He was angry when I said his idea was a non-starter. I said we needed to identify a care home closer to where our parents were currently living, a care home that would take both parents if they wanted to move there together or at least be close enough for my Mum to be able to visit her husband easily. I also said our parents should be involved in making any decisions, together with everyone else involved with their care. Through searching the internet we were able to suggest a number of care homes closer to our parent's home. My stepbrother visited some of these and reported back to us that one care home could accommodate both parents in adjoining rooms. He said this care home always had rooms available in case of an 'emergency'. He told us we must never mention the 'D' word - otherwise his father "will end up in one of those ghastly EMI places and that would be the death of him".

A few weeks later my stepfather was taken to this care home for 'respite' by my stepbrother. Wrongly, I assumed that he would take my Mum to visit but by day four she was distraught because she hadn't been to see her husband. She phoned us in Australia and asked us to find out when she could visit. I phoned my stepbrother who was evasive. He couldn't say how long his father would stay at this care home. I suggested that it would be a good idea to take my Mum to visit. I suggested she might like to spend a few days there with my stepfather with a view to them staying there permanently if they both wanted to. My stepbrother then told me that my Mum would never be able move into this care home. He said "they do not take people who have dementia". He had obviously managed to ban my mother from being admitted into the care home by telling them she had dementia but had failed to mention his father also had dementia!

After a few days my stepfather asked to be taken back home and my stepbrother reluctantly had to agree. He washed his hands at this point and handed everything over to us to sort out, which we did. All the professionals involved with our parents said that as a devoted couple they needed to stay together and said we should look for a suitable care home. We returned to the UK and spent over a week visiting specialist dementia care homes. Luckily we found the most amazing place, able to take both parents, with rooms next door to one another. They spent a day visiting this care home and thought it was a 'very nice hotel'. We asked them if they would like to stay there for a couple of weeks and they said that they would. We packed their suitcases for them and took them back a few days later (because of their dementia neither of them could remember visiting a few days before). We agreed with my stepbrother and his wife that none of us should visit for two weeks in order to give them a chance to settle and to see if they wanted to stay there permanently. By the time we did visit they were unable to remember where they had been living before and seemed very happy in their new surroundings, enjoying the activities on offer each day.

My wife and I returned to Australia. Checking emails after the flight we read one from my stepbrother which said he had insisted that his father was moved to a different room - we later discovered that this room was at the opposite end of a long corridor - my stepbrother had managed to separate our parents after all. It was so hard trying to deal with this situation from Australia - we did not know what 'story' my stepbrother had told the care home for this room change to have occurred. My stepfather was rushed into hospital shortly afterwards with pneumonia.

Sadly, my stepfather's health continued to decline and he died at the care home a few months later. After probate we discovered that my stepbrother had given large 'gifts' of his father's money to himself and his brothers immediately after he took over control of his father's finances, three years before my stepfather died. He had not registered the EPA, something he should have done once my stepfather's mental capacity had declined. Items were also removed from the apartment whilst we were in Australia. We fought a legal battle and won. Effectively my stepbrother was forced to reimburse my mother for the money that was distributed to himself and his brothers which means she will be able to continue to stay at the care home without facing a shortfall in care home fees. Taking advantage of two elderly people is sickening. Needless to say all this has ended my relationship with my stepbrother, his wife and his family but it was worth fighting my Mum's corner (and my stepfather's corner). They would have been disgusted if they had been aware of what was happening.

The good news is my Mum's illness seems to have been very stable for quite a while and one of the other residents is now her best friend. From time to time she still walks down the corridor looking for her husband - the carers have to remind her that he passed away and she has to come to terms with this loss all over again.

Last Christmas we rented a house in the UK and we spent a traditional family Christmas together. We were sitting around the fire with cups of coffee and mince pies and my Mum said "there is someone missing ..... but I can't think who that is", then she realised it was her husband who was missing and she also remembered he had died.

Like many others who have posted on Talking Point it certainly helps to write things down. This has been and continues to be a difficult journey but for my part I am relieved that my stepbrother and his wife no longer have any control over what happens to my Mum and that she is in a safe place with people who really care about each individual resident. I phoned the care home hoping to speak with my Mum yesterday but she was busy doing an activity so it was best not to disturb her - she was decorating pumpkins for halloween. Life goes on .......
 

Pottingshed50

Registered User
Apr 8, 2012
514
Thank you for posting your experiences AlexB. Gosh havnt you been through the mill and what a distance to deal with everything , I take my hat off to you. Your Mum sounds lovely and isnt it good that she can still communicate with you and enjoy life. Make the most of every minute of her being like this. What good people you both are.

I am so glad that the step brother and his wife are no longer involved. Believe me there are always bad apples in every family but that is another story.
 

Leolady56

Registered User
Aug 9, 2014
44
South Africa
Hello. I'm brand new here, and have only just acknowledged that I'm a carer. Just realising that has been helpful, but I feel very, very alone. Is there anyone else like me?

My aunt lives 120 miles away and now has severe Alzheimer's. I've had LPA for her for several years, along with another person who's worse than useless. My auntie is still living in her own home with full-time live in carers, privately employed.

This has turned into more than a full-time job. I'm not in paid employment, and have no prospect of getting work while I'm looking after auntie. I deal with her paperwork, post, finances. I have cleared her house to enable carers to stay. I pay the carers and deal with them. I arrange appointments and deal with HCPs. I have to think about how her care needs will change (hopefully before crisis point) and make decisions. I even have to make arrangements about the bloody cat.

I'd feel so much better if I didn't feel I was the only one. I have fantasies about moving auntie into a care home, which is NOT the best thing for her at the moment, but would be so much easier.

Sorry for whining. :(
Jowan, I am not in a long distance care position (mom lives in with me full time) but I really believe, that *if* the opportunity exists for you to find a nice and caring home for your Aunt, then in my opinion it should be something you do sooner rather than later. I'm not sure at what level your aunt's AD is but I would think it makes sense to move her now so that she can still familiarize herself with the new home, the carers, the surroundings rather than wait until she is far 'deeper' lost into her world of AD. You say it would not be the 'best' thing for your Aunt at the moment but I believe that the sooner that she is introduced to her permanent, new surroundings - the less disruptive it will ultimately be on her. (Just my two pennies worth....)
You know already that the day will come when she can no longer live on her own - no matter how many carers you have employed for her and as I have seen with other AD folks - this illness can suddenly make a very quick backward slide - sometimes in as little as 24-48 hours so I personally would think that it would make far more sense to move her now, rather than later. (I am wondering if you can get her into a care home closer to where you live so that you can still get to visit with her when you want to rather than having her in a care home 120 miles away from you. Best of luck coming to the decision which is best for your aunt - I'm sure it is difficult but if you could look at all the factors in the best interest of your aunt AND you of course, I do believe that moving her now if you are able to makes the most sense.
 

farfromhome

Registered User
May 17, 2013
5
long distance care

I care for my mother who is 600 miles away. I have been doing so since my father died 5 years ago and on certifying his death, the family GP announced "you do know your mother has dementia?" In one week I dealt with my father's death and cremation, my mother's now rather obvious decline, sorting out social care to cover for her when I had to return to my own family, and a host of things that those who have had to deal with this will know well.

I had to sort out the recognition of my mother's dementia. The GP had not registered it - please note, he retired three months later! I can only assume though that my father may have known but not wanted to deal with it. It was only during a visit a month before my mother died, that he started to acknowledge that her behaviour was declining and I was preparing to push for him to get help. Prior to that, he would call me and ask I come up and look after my mother as she did not like him going out - this was not always possible as I was in a full time job and I had a family of my own and limited leave. When I did visit, my mother would be unpleasant to live with. That was how it was then. He had a heart attack and died.

Since then I've dealt with having her dementia recognised - now known as mixed Alzheimers and Vascular (brain scan completed). She started medication to help. She had to remain in her home for two and a half years by my management of social care and other care - dealt with by visits to Scotland and by phone nearly every working day of the week. It was clear she needed to be in more Sheltered Care. On a waiting list. Refused AA at first as she told the person who helped her fill in the form she was fine and did not need care - she continues to tell people that. I appealed and she was given AA - I cannot understand why she was refused on the basis of a form, and yet medically diagnosed with dementia? I was give full POA and then took on all the financial and welfare duties entirely, but still respecting her wishes. By the time I was allowed by her to check her paperwork, it was all over the house and the birth certificates, marriage certificate and various necessary were all lost. She was at home during my trying to search for these and she accused me of many rather nasty things.

I had to stop work. What employer will give you the time off to deal with all of this? What employer will give you any time to deal with this? I worked for the NHS and was refused even unpaid leave at one point, and did not have the time to pursue the legalities of this. At that point "caring for a relative" not recognised. This was four years ago!

I am sure whatever else I write down here will be known by all those that long distance care for an immediate relative or one they have POA for. Those in my situation with no living relatives to help will face other issues.

The fact is, we have no other option than to get on with it. To not do it, is to neglect someone we care for. In the end we do that, we neglect ourselves. We may neglect our family, our marriage. We survive with very understanding friends.

I managed to get my mother into very sheltered housing, whereby she rents a flat and there's an excellent daycare facility down a corridor. She has excellent daily care that does maintain what independence she has, and in her current way of life is still able to get up and get dressed and follow a pathway to the day centre, where she will have her lunch and her supper. This has only been achieved because I had some knowledge of dementia and the importance of routine and slow introduction to new .. I and my mother have been lucky that such a system was nearby to get into (though it was a two and a half year wait to rent the flat). I have not sold her home. Eventually I may need to. If my mother had not settled into the VSH, she would have had to return home and full time care employed. Before moving into the VSH she had broken her wrist in a fall, and had two other falls where she'd injured herself -as she would become confused and just rush around. We are also lucky that she does not wander - though that is changing and she does occasionally go out to find out if Day Care is on. That may get worse.

I travel up and down (1200 mile round trip) every one/two months or when needed (meaning shorter duration of absence). Each week I am in contact with the Care Facility and deal with all the paperwork. I had a phone put into my mother's flat and I call her two or three times a week - she does not remember me calling her. I asked for ex. directory number - again, I am sure all will understand the plague of the advertising call and the distress those cause.

I apologise now for grabbing the thread on this, as the original poster had wondered if there was anyone in a similar position. I too have wondered that. I rarely come onto the Alzheimer site as have not had the time. Yes, we are out there. At times it just consumes you.

Other posters have voiced similar situations.

I wonder with joined voices we will be loud enough to point out to the UK that Dementia is being managed by unrecognised carers. That is on top of the many many many who do caring at home or in their own towns. What would happen if we all gave up. ? Who recognises we cannot. ? In the end, what do we want as recognition?

For me, I would like to see a seamless recognition process regarding the diagnosis of dementia that brings both condition and those involved together. If this can be diagnosed by a GP and recognised, why is it such a time consuming fight to get care ? I think I know part of the answer to this - too much/not enough.

So, back to original poster. You are not alone. It will feel that way, but you are not.

Gosh knows, there's so much more that could be said, but that's enough ..........

Been a bit of a week, culminating in the crisis of the end of the world as there is no margarine in my mother's fridge ... and she asked I look to see that ........ From 600 miles away, difficult. Web Cam? Nope, it is process of elimination by asking any of the care that comes to her flat to check cupboards as well as fridge. My mother and I are very lucky that we can at least do this. By end of today, she may well have lost the new tub of margarine.

thank you to all for reading, and remember this forum original poster!
 

rennie

Registered User
Sep 2, 2009
12
care home nightmare

Where do I begin mum on her own Cornwall. I am London. You hear so much bad press about care homes. I was hoping for her to stay in her own home. but things are getting more difficult each day.I my self is now at clinic to sort myself out/depression/ I am finding it more difficult each day

Im having a bad day sorry


evelyn
 

farfromhome

Registered User
May 17, 2013
5
response

Where do I begin mum on her own Cornwall. I am London. You hear so much bad press about care homes. I was hoping for her to stay in her own home. but things are getting more difficult each day.I my self is now at clinic to sort myself out/depression/ I am finding it more difficult each day

Im having a bad day sorry


evelyn
Hello Evelyn,

There are BAD days .................

There are days when you spend all day on the phone trying to find help, but I can give you a positive ending ..............you WILL eventually get help. Even if that help is just direction to something else..............it is "the better side of ongoing".

It is an absolutely overwhelming situation caring for someone else. In the end you have to CARE for YOU as well.

Please do write in .................I doubt there is much you can say that some or all of us have not felt or experienced.

There is a phrase "whatever it is, it will pass" - and this bad day will ..................

Look after yourself.
 

olddog

Registered User
Jan 20, 2014
4
London
Hello. I'm brand new here, and have only just acknowledged that I'm a carer. Just realising that has been helpful, but I feel very, very alone. Is there anyone else like me?

My aunt lives 120 miles away and now has severe Alzheimer's. I've had LPA for her for several years, along with another person who's worse than useless. My auntie is still living in her own home with full-time live in carers, privately employed.

This has turned into more than a full-time job. I'm not in paid employment, and have no prospect of getting work while I'm looking after auntie. I deal with her paperwork, post, finances. I have cleared her house to enable carers to stay. I pay the carers and deal with them. I arrange appointments and deal with HCPs. I have to think about how her care needs will change (hopefully before crisis point) and make decisions. I even have to make arrangements about the bloody cat.

I'd feel so much better if I didn't feel I was the only one. I have fantasies about moving auntie into a care home, which is NOT the best thing for her at the moment, but would be so much easier.

Sorry for whining. :(
Oh, you're not alone ! I'm a distance carer for my Mum who lives at her home, and like you do the work that enables her to stay there. I've two siblings, one abroad, and one disinterested, so I do the lot, supported by my partner (who has a demanding full-time job). I don't work. I'm there in person every few weeks. I could go more often, but I don't want to turn my life into being a f/t carer, and over the last decade my Mum determinedly made choices about what she wants, which is primarily to ensure she lives in her own home, i.e. her current home, for as long as possible, and maintain her "independence", despite my advice.

At best my role is passive background enabler, but its rare for that to last long. Even that is far more emotionally and energy draining than I imagined it would be. Often there are "crises" in which I have to intervene, ranging from involving the Police and going to Court for her after she was defrauded, through things like roof leaks, to liaising with her close friends who support her locally. And then there's the ongoing effort to try and ensure she changes her clothes now and again, uses the incontinence aids, and maybe even take a bath. Though the last one hasn't happened yet !

I'd rather this wasn't how I am spending so much of my life, but I can live with it for now, most of the time.

What I have found the biggest obstacle is the routine inability of the services and agencies involved in her care to make even the smallest of adaptations to the needs of someone living independently with dementia. Not all, but most. For example, doctors who will not write notes for her so that she knows what they have said to her, or use email to tell me. Services who do not collaborate, but who make you keep going through the same informational hoops. Specialists in dementia at hospital who do so little when they see her that I wonder why they bother. I could go on for hours on this theme.

I've therefore been particularly irritated by the guff from central government, all designed to create a mirage of activity, while in fact resulting in absolutely nothing tangible, and while the NHS is destroyed in the background. The recent drivel (sorry, Alzheimer's Society, but that it the reality) about community dementia friendly pledges being a prime example. Another being the con-trick announcements about capping the cost of care for the elderly.

Anyway, that's enough outpouring for one post !! You are not alone, as I said at the start
 

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