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

[Saffergirl]

I live in the UK and my parents are in a retirement village in South Africa - two time zones and a hemisphere away. My mom (75 yrs) has early onset dementia, is having problems with her pacemaker and is undergoing radiotherapy for breast cancer. My dad is her carer at 76 yrs old and he has Parkinsons. We do most of our chatting through Whatsapp at the moment - my dad dictates and my mom types, but sometimes I send a message and there is no reply at all and I sit and wonder whether they've dozed off, forgotten that I messaged or worse.

I've managed to organise meal deliveries 3 times a week for them after a virtual screaming match because he wanted to pay and I refused to allow him. He has so much pride it drives me crazy. IT has eased the pressure on him as he doesn't have to do as much grocery shopping or cooking which is hard work with his shakes.

My biggest nightmare is which order they are going to pass away in. If my mom goes first my dad will cope (because that's what Real Men do) but if he goes first my mom will not cope. She cannot be without him. I simply cannot bear the thought of going over for the two weeks' compassionate leave I'll be allowed and then having to leave her to return home. I can only pray that her dementia is bad enough by then that she doesn't realise I've come and gone

 

[Bonfire]

Oh how I agree with you

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.

You aren't whining just probably tired and fed up of getting no support. My husband who has dementia is with me and gradually getting much worse and is such hard work - not his fault of course. The local authority is hopeless - 10 weeks to arrange an assessment and now 4 weeks since that visit and no likelihood of any respite. In fact they won't ring me with any update at all.Sadly the local Alzheimers. org was even worse. A lady bountiful type more or less said I had to make any arrangements for memory cafes, day centres etc and I would have to pay travel etc ( not true as there is a local voluntary travel organisation). She offered phone nos only for me to call myself as she had 'no details' - what a waste of time after all the times Alzheimers Society is always wheeled out as experts in any discussion on dementia.Our GP told me if I wanted to go out to lock my husband in the house on his own - obviously a real expert!The only practical and emotional support I have had is from the Carers Centre - thank goodness for them - always someone to talk to, my daughter who is a brick and a neighbour. So yes it's good to have a whine occasionally - you have good reason.

 

[farfromhome]

You aren't whining just probably tired and fed up of getting no support. My husband who has dementia is with me and gradually getting much worse and is such hard work - not his fault of course. The local authority is hopeless - 10 weeks to arrange an assessment and now 4 weeks since that visit and no likelihood of any respite. In fact they won't ring me with any update at all.Sadly the local Alzheimers. org was even worse. A lady bountiful type more or less said I had to make any arrangements for memory cafes, day centres etc and I would have to pay travel etc ( not true as there is a local voluntary travel organisation). She offered phone nos only for me to call myself as she had 'no details' - what a waste of time after all the times Alzheimers Society is always wheeled out as experts in any discussion on dementia.Our GP told me if I wanted to go out to lock my husband in the house on his own - obviously a real expert!The only practical and emotional support I have had is from the Carers Centre - thank goodness for them - always someone to talk to, my daughter who is a brick and a neighbour. So yes it's good to have a whine occasionally - you have good reason.

Sadly I had the same experience with finding local support for the carer. I contacted my local Alzheimers/Dementia support and was told that as my mother was not local there was little that could be done regarding support for me. When I approached her local support group in Scotland - I was told that I needed to approach a group local to me!
I have to say that the local person to here was not in the least understanding of my situation and frankly seemed to have little time to speak to me.
I did speak to a lovely gentleman on the AlzScot line, who really kept me afloat one day. All we sometimes need is for someone to say they understand.
In the end you have to make what you can of the copious literature available. It is very time consuming.
Worst moments in long distance care are making a very long journey to be met with a very aggressive mother. Then having to deal with all the paperwork formalities that await - though these do get less as the various authorities recognise your POA. Sadly, with dementia the decline of the relative is such that by the time you've got the paperwork sorted, the person you knew is almost gone and the time that has been spent on paperwork cannot be brought back.
I try now to have the awful 'quality time' but it is a struggle as it now is a 3 minute cycle of the same and the same and eventually you do need to take time out.
On the other side of that, with the short term memory loss now being 3 minutes to ten ... I can leave and come back and we get another ten minutes of decent conversation on a different subject. You have to get in and 'direct' that first. You do find ways to cope. Though where is this mentioned in literature? I learned that through five years of working in elderly care and ten years in learning difficulties - what happens with those who can't apply that experience.
I am no saint and there have been tears, and shouting and breaking all the rules regarding 'understanding' - but from experience, it is best to walk away for a while (the time out rule). Not always achievable.
I've just had a bit of a rough week one way or another, so am on computer catching up on fact that I'm one of many many.

 

[gillyta]

I am also a long distance carer . I live 300 miles from my mother who is both significantly physically and mentally impaired .For 5 years or more I have traveled every 2 weeks to support my mother in so many ways. My father died 8 years ago and initially my mum needed support carrying out every day activities- shopping, paying bills ,looking after the house, attending appointments . As her function deteriorated , choices were made with my mum to have a small care package and eventually she deteriorated to such an extent that we decided she would go into a residential home . I arranged the sale of her house and all that entailed.During all this time I used to phone her at least 1x day and usually more often .
I have family close by but for some reason they do not seem to have insight into her needs so I took the role on of being her main carer and power of attorney . I feel I am on a roller coaster most of the time . Feelings of stability and comfort are fleeting even though she is now in a nursing home . I still visit every 2 weeks and at the present time I have actually taken 3 months off work to be with her most of the time .
The nursing home is reasonable but has short comings .
I have support from my husband and my children are thankfully old enough to look after themselves . I don't know what I would do if I didn't have their support. sometimes I feel so tired but I know I have to travel to see my mum. There is no one else to speak up for her . I have to check that everything is right for her . Its the very least I can do. My mum was always there for me . My situation is not as difficult as some people so I count myself lucky.
I think the most difficult thing for me is seeing my mum as she was, disappearing - she has changed so much and become a different person . I just pray that I can stay healthy and able to be by her side for as long as it takes.
Just being there and being able to hold her hand and comfort her in her dark hours is really important to me and I really hope that it helps her .
Reading how other people are coping does help me to keep going.It certainly is not an easy task

 

[AnneED]

'Reluctant carers' - yes, that's me.

Yes, I am a long distance carer too. I think there are many of us, as people live in diverse places these days and are often some way away from their families. My mum is 90 miles away, lives alone and has some elderly friends but no helpful family nearby at all and I have been travelling every two weeks for the weekend (alternating with my sister who lives a bit nearer) until recently when I too have had a 4 month unpaid career break. I intended this to enable me to 'sort out mum things' so it would be 'so much easier when I go back to work' but that's not how it is with care and dementia. I have realised that, if I am lucky, the 4 months will enable me to work out how I feel about what I am doing (I am the 'reluctant carer') and how I can manage to care but have what I need in my life too. This may involve a care home and I know it certainly will eventually if not yet. It has involved getting the Contented Dementia book and taking on board at least some of the theories in it. Today it involved extricating mum's mobility scooter from an incident with a stationary van (oh we've got lots of time, let's walk and use the scooter! - my idea) I don't know whether it's harder to live with the person and cope with that, or not live with the person and cope with the travel and stress of worrying! Both I suspect. Mum will be going to a care home for a break at some point and I will explain it as a 'holiday' in a special hotel where they have really helpful staff. If it is 'before she needs it' it will be because I need it.

 

[jackym]

moving parents

Both my parents have dementia (my dad long-standing vascular dementia and my mum was diagnosed 8 months ago with Alzheimers). They still live in their own home, 50 miles from me, with carers going in three times a day.

I'm wondering whether to try and move them to a ground floor maisonette near where I live. The mental health nurse says there are many positives but........... who knows how they will react to the upheaval?

Has anyone else done this and how did it work out?

 

[AlexB]

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.

Thank you Pottingshed50 for your encouraging words. We may have lost the friendship of my stepbrother, his wife and family, but we know we did the right thing by my Mum and my stepfather when they were at their most vulnerable. Good luck with all you are doing.

 

[Pickles53]

Both my parents have dementia (my dad long-standing vascular dementia and my mum was diagnosed 8 months ago with Alzheimers). They still live in their own home, 50 miles from me, with carers going in three times a day.

I'm wondering whether to try and move them to a ground floor maisonette near where I live. The mental health nurse says there are many positives but........... who knows how they will react to the upheaval?

Has anyone else done this and how did it work out?

We looked at a move to sheltered housing near us for my mum but in the end decided against it, partly because her CMHT nurse felt that she would too confused by unfamiliar surroundings. She lost the ability to learn how to use anything new, even a kettle, or to remember where anything was in the house. If you go for this, I would only rent, not buy, in case it doesn't work for long.

 

[Jean001]

Sorry - this is a bit long :-( ...

I have been reading the posts here and am in the same situation as most. I live in New Zealand and my mum lives in East London.

Dad died last year – mum had been diagnosed with dementia the year before and also I’d got an LPA in place for her should anything happen to dad. No-one expected dad to go first though as he was always so healthy but after getting a virus, within 7 months he’d died. While dad was alive they managed OK at home although like someone else said, mum would get annoyed at all the carers coming to assist dad. Dad didn’t want people coming either. He would make sure mum took her medication and organised their appointments etc. He was her memory, she was his physical help although she is disabled – is in pain when she walks and mobility is limited but she would make them cups of tea etc. I had set everything up on DD for them so bills didn’t trouble them at all. And they had meals on wheels so didn’t have to make dinners – they could make sandwiches for lunch and the carer who came in for dad every day, also did their shopping and cleaning once a week.

When dad died, my partner and I flew over to sort out arrangements etc. I stayed for 2 months as not only did I have to sort out dad’s will etc being his executor, I also had to make arrangements for mum and sort out all her paperwork too. I’m an only child so there was no-one else to help with this. It was an absolute nightmare – the amount of paperwork surrounding elderly people is horrendous and all the different departments that are involved and not connected was a mission to get through.

Trying to change mum’s name over to the services etc was time consuming (sitting waiting on hold forever and a day, pensions dept automated answer service eventually to be put on hold and then to be told you’re in the wrong section) – all the time trying to be strong for mum and get her sorted as she'd taken over as my main concern, when all I really wanted to do was grieve for dad.

Mum wanted to stay at home – she’s lived there since she was 3, so that was understandable. She’s mid dementia – some days good, other days not too clear about things. I got a carer set up for her – coming in twice a day to make sure she took her meds. Meals on wheels would drop off her dinner midday, and she seemed to be getting on OK from what I could gather. There was a neighbour that had taken her under her wing and would pop in and get anything she needed etc. Also mum’s cousin who lived an hour’s drive away would visit every 6 weeks. (Mum has no siblings alive, but has always been close to 2 of her girl cousins and one of their daughters – my second cousin- as had I).

My second cousin put pressure on me to come home for Xmas 2013 as it was ‘mum’s first xmas without dad’.

I had been told (2 weeks after dad’s funeral), that I would get no more unpaid leave from work due to the amount I’d had off recently – so my job was on the line. (I’d had trips to the UK for my normal holiday June 2012, then Xmas 2012 as dad had got ill and then again April 2013 when he died). So, I flew over again Xmas 2013 to be with mum (my work closes over the xmas period so I didn’t need to take unpaid leave this time although I only had a couple of weeks with her and usually I go for longer due to the exorbitant cost of the flights from here).

Mum had a fall at home in March this year – she didn’t break anything but was obviously shaken up. My second cousin yet again put pressure on me to fly home – I replied saying I couldn’t come back this time due to commitments in NZ plus my job on the line etc etc. She bascially expected me to pack up my life here and move back to the UK to look after mum. Hence when I wouldn’t, her and her family have all stopped having anything to do with me and cut off contact with me.

I got the carers visits upped again as they been cut back – mum was clever whenever the main assessor visited and would somehow manage to pass all their tests and they thought she was alright to be left alone for longer periods. She also seemed to be fine whenever the family visited her for a few hours. But they didn't see her in full dementia mood swing mode.

I found the hardest thing was co-ordinating cash money for mum when she was at home. She could go out with help, but didn’t go out too often. I occasionally deposited money into the neighbours account as she’d been paying out for small items for mum and also could pass cash to mum for the shopping etc, but I didn’t like to do this too often as I didn’t want her to think I was taking advantage. I never asked the family if I could do this when in reality you would have thought it would have been better to do it through family – but they tended to be all ‘care and no responsibility’ so I wouldn’t dare to ask them to do anything for mum. I felt I couldn’t.

That was the hardest thing to do. Like someone else said, a lot of stuff could be done online but getting physical cash to mum was hard. Plus I needed someone to post all the letters to me so I could deal with them as mum would get confused with any paperwork.

I struggled with taking over completely and letting mum have her independence, so letters would still go to her about her pension and so on.

One thing that constantly worried me was that she smokes and used to smoke indoors – there were fag burns on the carpet and also some of her clothes. But I couldn’t stop her. Also, I’ve been told she’d stand at the door with money asking people to get fags for her – one friend of the family said one day she was at the door with about 150 pounds – she had no idea how much money she had. There were fags indoors, as the neighbour would get them for her, but mum would have put them somewhere and couldn’t find them.

And I was eventually told about a man going in the house and demanding money. She ‘saw’ him off and luckily nothing happened to her, but it was a time bomb waiting to happen.

Again, everything seemed to settle until she had another fall in the July. This time, she also had shingles and was taken to hospital. She in hospital for a good month and her dementia was observed by the doctors and nurses there. The doctors made the decision that she couldn’t go back home due to high risk of falls (she lived in a 2 storey house), so they moved her direct to a rest home in mid August. I had previously visited this home after dad died last year in the case mum eventually would have to go somewhere, and knew it was quite nice.

I didn’t fly over when she was first moved there as I was unable to go at that time – the doctor and social services also said that it may be a good thing if I wasn’t there as she wouldn’t associate me with her being put in the home. But of course, our relatives who wasn’t aware of this have run my name down to everyone who will listen. (I’ve heard that through the grapevine). They didn’t reply to my contact when I said I was coming over to clear out mums house and to see if they would like any mementos of mum and dad – mum couldn’t have everything from the 3 bed house in her room in the rest home and I didn’t want everything either. So they got nothing (mind you, I don’t know if they did get anything prior to her last fall, as items of the good jewellery and household bits have gone missing from the house). Mum could well have given bits to them, or else things have been taken from the house, otherwise mum could have thrown them away – I don’t know. Also, many people had keys to her house, so things could have gone while she was in hospital. It annoys me to think she might have been taken advantage of, but it’s only stuff – the main thing was that nothing happened to her. And karma will prevail there.

I arrived three weeks after mum had been moved to the rest home – she was pleased to see me and thought I was going to take her back home which of course I couldn’t. She had a few days where she was going off at me about it and making life a total misery when behind the scenes I was working my butt off to organise everything so she could be looked after.

We did have some really nice times together. She gets her hair and nails done every fortnight by a hairdresser and she is helped to wash and dress and always looked nice when I went in which was all different times. I felt the home was safe, clean and comfortable for her and I eventually took in some furniture and items from home for her just before I left, as I had her moved to another floor where the people were more elderly with less advanced dementia. Mum was quite distressed at the ones who would wander into her room and the antagonistic ones, and I hoped she’d settle better in a more ‘quieter’ surrounding. It's good to know that she is clean (I'd been told that it was dubious about her washing every day - she'd say she had when it was obvious she hadn't). It's also good to know that if she has a fall, someone will be with her within minutes. It's also good to know she won't set herself or the house on fire either as she's now monitored with her smoking.

I had almost 4 weeks to empty out the 8 room house and get it ‘renovated’ to put tenants in, (everywhere needed painting and some rooms re-carpeted and everywhere needed cleaning), to get rent to pay for the rest home fees. I had no contact or help from my family at all.

The first week I was there I was all alone and cried practically the whole time. I was having to visit mum and be cheerful for her, whilst going through her and dad’s lifetime of things in theirs and my home. It was really hard to do because I was having to get rid of stuff and she wasn't dead. I felt terrible.

People who were local acquaintances and friends helped me greatly once I was able to reach out. People who I didn’t know, like the man who volunteers for the local hospice, took at least 15 car loads of stuff from the house for the charity to sell on. My best mate came and helped me a couple of days empty out more cupboards – I thought it was never going to end. I even had a friend and her mum from NZ come and stay with me at the end of their holiday in the UK and help me sort out bits. The emotional and physical aspect of what I had to do was draining and just to have someone there with me was wonderful. My partner couldn’t come with me as he had to stay in NZ and work to pay the bills. I had to take unpaid leave and was ready for a fight with my employers but they must have realised they couldn’t do much in this case and gave me the time off.

It’s at times like these you find out who your true friends are – and just how judgmental family can be –but I should have known they’d be like this – they’ve always been like it looking back. But like they say, you can choose your friends but you can’t choose your family. I only hope they never have to go through this.

I’ve had 5 trips to the UK in 2 years! And my family think I don’t care. WRONG! I don't think they realise just how far NZ is either, but their attitude is - YOU chose to live there. Well yes, I fell in love with a New Zealand man - is that so wrong?

Rightly or wrongly I kept a lot of what I heard that was going on with mum from the social services, as I knew they would push for her to go into a home and that it would be against her wishes. I felt caught in a catch 22 – her safety was paramount to me, but her independence and wishes were also a factor.

Mum isn’t happy being in the home – she still wants to go back to her home but of course, it’s rented out now and she can’t. I don’t think she’ll ever settle in the rest home fully to be honest.

My partner and I are moving back to the UK next year so I can be close to mum for the time she’s with still us. I feel I need to be closer to her, but having said that – I couldn’t look after her at home. I don’t want to end up resenting her and unfortunately with her dementia she pushes a lot of my buttons from when I was younger. I know that it’s the illness that’s causing this now, but I also know if I have to live with it full time, my empathy and patience would wear low. She also needs to be watched 24 hours and both my partner and I would have to go out to work. Yes, carers could come in 4 times a day like before, but it’s when she’s on her own that she’d be back out at the door with money for fags! I also have to think of my partner and I know the huge pressure that this could potentially put on a relationship living with someone with dementia full time. Also, neither my partner or I smoke – we don’t want our health to suffer nor to have the house burn down around us.

Dementia is a horrible illness – it can split up families as people take sides etc and it can alienate the children. I never in a million years thought that at age 51 I would be having to deal with this – my life should be happy and settled right, like mum’s was when she was 51! Wrong – it’s all up in the air – waiting for the next thing to happen. In the meantime, I have to just get on with it – the plethora of paperwork that seems never-ending, the pointing fingers of what a terrible daughter I am for not moving back home and looking after my poor old mum (forgive me for wanting to have a life of my own -I’ve only lived in NZ for 22 years!!).

So yes, it’s a struggle when you live far away, but I think dementia is just as much of a struggle when you live close – just in a different way.

I really hope I don’t go down this track – so much so, that I’m looking at my options should I see it coming on. I don’t want close people around me to have to suffer it too or be judged harshly if they can't look after me. We don't have any children so it would fall to my partner and his family. He's younger than me and should be able to have a life in his older years without having to go through what I am now. Mind you, he won't be made to feel bad by his family - they're just not like that - and being that I have 'no family now' other than my mum, he won't be put through what I am.

Expectations of other people are exactly that - their expectations - I am doing all I can for mum from a distance right now, and know that while it's not perceived as ideal for all concerned, dementia isn't an 'ideal' illness that can be looked after by everyone - sadly I know my limitations.

 

[RedLou]

Jean - your experiences of easy judgements will be familiar to a lot of us. You don't need to justify your actions to us. We completely understand. I think it's incredible you're coming back to the UK and a part of me wants to shout 'Don't do it! Live your own life!' to you!
You have ensured your mum is safe. Take care and remember, you're doing your best and your best is good enough. *hug*

 

[Jean001]

Jean - your experiences of easy judgements will be familiar to a lot of us. You don't need to justify your actions to us. We completely understand. I think it's incredible you're coming back to the UK and a part of me wants to shout 'Don't do it! Live your own life!' to you!
You have ensured your mum is safe. Take care and remember, you're doing your best and your best is good enough. *hug*

Thank you so much for your reply RedLou - yes, I think only people on here (and some in the general population) for the most part, understand all the complex issues and feelings that surrounds families dealing with loved ones with Dementia and Alzheimers. It's certainly not an easy road to travel is it. We're all trying to do our best while dealing with all sorts of daily things in our own lives too. - Thank you for the hug - much needed

 

[Jean001]

I forgot to add -
Mum, whilst she knows she gets muddled with things and can't remember some things etc, and that she sees her dad and mum sometimes, (and thinks I'm someone else sometimes), is in denial that she has dementia. She firmly believes she's alright and would be alright living back at home even though she misses dad terribly and was lonely at home. It's heartbreaking to see her lose her independence. She was always the one who did all the paperwork - paid all the bills before they were due, remembered where everything was in the house etc. Since the dementia (which is vascular), she would still think she knew where things were, but if she'd moved them and not put them back in the same place, I'd get a phone call in NZ from her asking if I'd been in there and moved things :-( It's so sad and I feel totally helpless that I can't help her get better. :-(

 

[RedLou]

I had lots of calls from my dad about things I knew nothing about or couldn't fix from 1000 miles away. Like your mum, he has vascular dementia and like her - I think this is pretty typical - he doesn't think anything is wrong and that he should go home. His current belief is that the doctors have got someone else's medical notes mixed up with his. It's astonishing how the mind works - you might even say, works sharply - even when it's shutting down.

 

[Jean001]

I had lots of calls from my dad about things I knew nothing about or couldn't fix from 1000 miles away. Like your mum, he has vascular dementia and like her - I think this is pretty typical - he doesn't think anything is wrong and that he should go home. His current belief is that the doctors have got someone else's medical notes mixed up with his. It's astonishing how the mind works - you might even say, works sharply - even when it's shutting down.

Yes, it's hard to see eh. Mum has some really clear days/moments and it's hard to believe that's she's got dementia, and then she'll say something that brings me back to reality :-(

 

[RedLou]

I'm sorry. I need to have a rant. I can't cope with this any more. My father is a 3-hour flight away. He wouldn't come back to England when he was able to make the decision. He said he wanted to be with his friends. (Most of whom never go to see him now.) So now I'm having to go out there every 4 to 6 weeks, for up to a week at a time, and being self-employed that's virtually killed my career. My husband and I are stressed because of money as well as dementia-caring-from-a-distance and having rows. Yesterday I had an hour and half long conference call with the lawyers and it seems I have to go out again to pick up some documents, less than a week after I got back and was trying to concentrate on a new string to my career bow. Cue major row with husband, especially as my parents always treated my husband appallingly. I'm so angry and resentful. And because of the illness he's oblivious to anyone else's feelings or problems but his own. (All he does is moan. You bring him good news and he moans.) Does anyone else suffer these bouts of raging at the absent relative and expressing all the anger we never, ever express to their faces? How come the one with dementia is allowed to be angry but the ones picking up the pieces have to act saintly all the time?

 

[jeany123]

Can this not wait until you go next time?
Can he not post them to you?
Can someone else pick them up?
What if it was impossible for you to go or what if you didn't want to go, there must be some alternative for you apart from ruining your job and putting conflict in your marriage, you are entitled to a life too,nobody would expect you to do this,
I hope you get something sorted that is agreeable to all of you,

Best wishes Jeany x

 

[RedLou]

Can he not post them to you?
He's too far gone, Jeany, both in terms of mobility and dementia.
Can someone else pick them up?
Highly personal financial information - wouldn't want anyone outside the family doing it.

Can this not wait until you go next time?
They guilt-trip me. It's the 'We need to sort this out swiftly for his own good,' line. Having said that, I may - just may - put it off to coincide with the visit we planned to make to settle him in his new long-term nursing home, once he's released from hospital. My husband was coming out with me to support me. Now not.

 

[jeany123]

Sorry I thought the person you were picking them up from was a lawyer not your dad,

 

[Jean001]

I'm sorry. I need to have a rant. I can't cope with this any more. My father is a 3-hour flight away. He wouldn't come back to England when he was able to make the decision. He said he wanted to be with his friends. (Most of whom never go to see him now.) So now I'm having to go out there every 4 to 6 weeks, for up to a week at a time, and being self-employed that's virtually killed my career. My husband and I are stressed because of money as well as dementia-caring-from-a-distance and having rows. Yesterday I had an hour and half long conference call with the lawyers and it seems I have to go out again to pick up some documents, less than a week after I got back and was trying to concentrate on a new string to my career bow. Cue major row with husband, especially as my parents always treated my husband appallingly. I'm so angry and resentful. And because of the illness he's oblivious to anyone else's feelings or problems but his own. (All he does is moan. You bring him good news and he moans.) Does anyone else suffer these bouts of raging at the absent relative and expressing all the anger we never, ever express to their faces? How come the one with dementia is allowed to be angry but the ones picking up the pieces have to act saintly all the time?

:-( I'm sorry to hear this - and I hear what you're saying about the person with dementia can behave exactly as they like while the people around them have to act saintly all the time. I hear you about your dad wanting it all his way to stay where he lives for his (now long gone) friends, but also to expect you to run around for him too. I hear you about money stress and rows. Money is a worry for my partner and I too with my back and forth to the UK, and although most of the time he is quite caring with me, sometimes he gets angry that we have to change our lives/put our future on hold, because of my mum.
I too have bouts of anger about the situation I'm now in with my mum - I know it's not her fault but nonetheless I'm angry that now when my life should be quite content and settled and having good times with my partner, and mum too (albeit by phone and holidays at the moment), things are up in the air because we find it hard to plan for the future, not knowing what is round the corner and having to deal with mum's welfare as well as our own. And Mum is kicking up so much fuss at the rest home about wanting to go back to her home, they're now going to the Court of Protection for her and IF they decide she can go home, then that puts me in a very awkward situation being that I had to empty out her house to put renters in to pay for her care! (And back to worrying constantly about her safety and well being there). It seems to be an ongoing nightmare for all of us who are looking after someone with dementia, and even with all the best will and kind hearts in the world, there's times when it all gets a bit too much and we have a bit of a meltdown. Trying to co-ordinate from a distance makes it hard and for you, you're still close enough to be expected to drop everything and go and sort it out :-( Actually, even though I'm 24 hours flight away, my family (not mum at the moment) expect the same of me! You can rant here any time - I think most of us can appreciate that sometimes we need an outlet to let rip - other than to those close to us (because it's hard on them too).
Don't be sorry about ranting - it's very much needed to keep us sane and enables us to put on a 'brave face' to our loved one with dementia when we're in touch with them
Sending you hugs xx