Caring from a distance

Discussion in 'I care for a person with dementia' started by Jayenne, Sep 30, 2019.

  1. Jayenne

    Jayenne New member

    Sep 9, 2019
    2
    Golly I've spent all morning reading through various threads on here and feel a bit of a fraud as I'm not going through a fraction of what others are going through but here goes anyway. Be warned -this may end up as a rant!!!

    Mum, in her 90s, was diagnosed about 6 months ago. She's aware of the diagnosis and at times gets very depressed about it while trying to be positive at the same time. A few years ago she moved from her own house to a sheltered flatlet where meals are provided, but no care - in fact no staff overnight either which is slight worry but otherwise it's great for her and she loves it and I think will be able to manage there for quite a while. However in the past year, all the signs that others have described are there - eg tv remote is broken, phone doesn't work, friends don't bother to talk to her any more and so on. She leans more and more on me to help with things which is fine but I live 5 hours drive away. I have an old-style enduring POA which has helped a lot with her finances and thank goodness for online banking.

    I visit around every month-6 weeks and while there we shop, go for walks/visits, write simple instructions for the phone/tv and go through her finances etc so I leave feeling happy that she'll be ok till my next visit but within a week something else has happened that's got her worried - she needs help writing a letter, something's come from the bank, the new remote is broken and so on. And of course - the gut wrenching 'why don't you visit me more often, I'm so stupid I can't do anything by myself?' heartbreaking! I'd like to go with her to the doctor more as I'm not sure he's quite in possession of the facts, for example my mother says he doesn't think she's got Alzheimers - I think she's decided this herself and never sees the doctor anyway. I'm torn that I think I should move nearer but it's a hard decision to make. I have my own life here - a job (that I might be able to do remotely for some of the time maybe) and my own offspring, both of whom, although adults with their own families, need quite a bit of support at the moment for various health and so on reasons. Which my mother knows nothing of. I have absolutely no idea where my priorities lie and am worried sick about the lot of them to be honest!

    The other thing is financial, although a working (part time low wage) pensioner I find these visits horrendously expensive. Petrol, 3 nights in a b n b (the cheapest I could find) as well as the incidental things I end up paying for have eaten into my savings like nothing!(for example last week we thought we'd have a picnic which she was so excited and happy about, we went to the supermarket and she chose lots of treats to eat but which ended costing me nearly my whole week's food budget - and then of course she hardly nibbled any of it and I ended up with a load of Waitrose stuff to use up (a lesson learned - next time it's Lidl though she so loves going round Waitrose!) Lots of books and magazines. She also asks me to give money to her great and grandchildren for birthdays, Christmas etc but then has completely forgotten when I mention reclaiming it from her. I am going to bite the bullet and get her permission to transfer this money to me but obviously can't ask for the petrol or B n b money as that's like her paying me to visit her which seems awful.

    Gosh - I said it'd be a rant and look how it turned out!!! I might add that I have siblings who live quite a bit nearer but they're either in denial or able to cut off better than me. But then she never rings them with her problems and when I try to explain I get - well she seems fine to me - so I feel I'm being petty and making a mountain out of a molehill (maybe I am - am I?). I'm on my own with it really.

    Is anyone else trying to help from a distance? I feel so selfish even asking the question 'should I move?' and so many things would be easier but..........????

    Thanks - Jay
     
  2. annierich

    annierich Registered User

    Nov 11, 2015
    62
    Have you thought about moving your Mum nearer to you? It sounds like she needs more support now than one visit every month / six weeks.
    Unfortunately things are never going to improve for her and it sounds as though your visits are taking their toll on you emotionally, financially and health wise.
     
  3. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    61
    Hello! This is very similar to my situation in terms of dealing with things at a distance, though thankfully I do have financial Power of Attorney so I’m not out of pocket to the same extent as you. You might guess from my TP name how far away I am from my parents! It’s four hours on a good day, longer if the traffic is bad. I took early retirement a year ago so that I could visit more often, but sometimes it’s three weeks in four which is exhausting. And although I don’t bear the whole cost of the trips, I do share it so that can take a significant chunk out of my now limited income. Thankfully I’m able to stay with them when I visit, accommodation charges would mean I’d struggle to visit as often as I do.

    My situation is different in that both my parents are alive and only one (mum, aged 84) has dementia. Dad (92) is fine mentally but both he and mum have significant problems with balance and mobility and the house they are in is really not suitable for them. Of course they won’t (well, Mum won’t) even think about moving. And I understand why, because they’ve lived there for almost 60 years so she knows where everything is, where the steps are etc. They’ve had a lot of support from Occupational Therapists to install grab handles, hand rails, change the shower room to a wet room, and there is a stair lift. But at the moment she’s in hospital with a UTI and almost no mobility and I have no idea what happens next. I am having a week off this week, and feeling guilty as hell about it because this means mum will not have a visit every day. She is being well looked after and I phone daily and speak to the nurse caring for her, but still...

    I’m guessing you may, like me, be an only child? Is is possible your mum set up a power of attorney at some time that could be implemented now? Or does she have sufficient capacity to set it up now? If so, I’d recommend organising that a.s.a.p.

    One thing both my parents and I are clear about, is that I cannot become their day to day carer. I have a husband and home too far away for that to be possible, and we would all hate it. Persuading them, especially mum, to accept appropriate care is however a major challenge and one I’ve not yet succeeded in. Possibly mum will agree to a care package this time if that’s the only way she can get home.

    Virtual hugs from one stressed distance carer to another ((((((((:)))))))))))
     
  4. Jayenne

    Jayenne New member

    Sep 9, 2019
    2
    Golly - again! 2 responses already! I hadn't imagined it would be that quick. I can't understand why but I felt a strange sense of relief after posting. Perhaps there's something in 'journalling' after all - I've always thought it was a very self-indulgent occupation!

    I don't think I could move her nearer to me - she's lived in the same town for nearly 50 years, it's where she was with my dad and he's buried here. She also knows her way round the town, the church, shops, favourite cafes, friends, where all the benches are etc. She couldn't possibly learn all that again We did discuss it a few years ago but she also wanted to be nearer to my siblings then - not that she sees them much now!

    The enduring power of attorney gives me access to her accounts but she deals with day to day stuff, she really only has to think about getting enough cash out each week for her 'spends', everything else is on direct debit or just included in her rent. She sometimes buys clothes but ends up taking them back the next day as she changes her mind! She can use the ATM ok and so far has never forgotten her pin number - to her/my constant amazement! However I don't feel I can take any money for my petrol/accomm etc without speaking to her about it as after all, it's her money, and I do feel bad to ask! I'm going to speak to her this evening about the birthday presents though. I think.

    And Cardiffgirl - you mentioned the G word. Guilt!! Argh. It seems to be the most constant emotion mentioned by others on here. I also feel huge sorrow when she tells me 'everything seems to be slipping away from me and I can't reach it', (If I could only reach it back for her), resentment (towards my siblings), stress (when I see her number when my phone rings - what now!) impatience, hating myself for being selfish, self-pity and all of that too.

    Really grateful for the responses is another emotion too - thank you so much for even bothering to read it. Hopefully I can give back in this forum some time too.

    Jay
     
  5. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,465
    leicester
    Hi @Jayenne welcome to DPT I’m glad you have found the forum a useful aid to looking after your Mum..
    I hope now you have found us you will continue to post it is a very supportive and friendly forum.
     
  6. SKD

    SKD Registered User

    It is hard - although Mum is now in a nursing home for 18 months after diagnosis she lived in her own home 3-4 hours away from me - I was visiting fortnightly to do shopping, find the remote etc. I am not sure what the financial situation is but it sounds as though your mother might benefit from a daily care visit. We started with one hour a day to do medication and make sure she had an evening meal eventually going up to four hours a day - after that she really wasn't safe at home. It did give me some peace of mind and they were able to sort out tv remote, telephone etc which seemed to 'break' on a daily basis. I also found that I needed to spend some time up there to go to the doctor, get a diagnosis, talk to care agencies to set it all up but it did make life easier even if the guilt did not entirely dissipate. With power of attorney you should be able to pay from your Mum's own finances.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,876
    Female
    You may feel as if you have to ask her about taking money for petrol, but of course in fact you don't. Think about it this way - would you make all these trips and incur all these expenses if she didn't have dementia? If not, then the visits are part of your role as attorney, not part of your role as a daughter, and you can quite legitimately recoup the expenses. It's difficult at first - I felt like I was rifling through my mother's private things when I dealt with her paperwork. But actually it's necessary, and you do get used to the fact you are carrying out the role of attorney.

    My mother went through the stage your mother is at about 4 years ago, and I too lived a long distance away. She managed on her own for a while, and was seemingly okay, when she had an assessment she even told the social worker she didn't need any help. But after a while it became apparent that although she said she was coping, she wasn't. She couldn't remember how to prepare a meal, or even that she needed to eat, and she lost a lot of weight. But she couldn't remember that she didn't remember (if you see what I mean). I had to get carers in, four hours a day to begin with, which worked well for 18 months. But last year she moved to a care home, I chose one near me to make visiting easier.

    When thinking about uprooting yourself to live nearer, bear in mind it's impossible to predict how the disease will progress. She may stay at this stage for quite a while or she may deteriorate quickly and need more help than you can provide, even living nearby. It is very difficult to plan for, as soon as you think you've solved one issue, another one turns up... and you're lucky if it's only one!
     
  8. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    61
    Thanks for this, I hadn’t thought either that these visits are as much about my role as attorney as they are about seeing my parents. I used to have time to socialise with old friends whilst I was there, but not any more. The time is all taken up with paperwork, sorting out things that need doing in the house etc.
     
  9. Einstein's bicycle

    Einstein's bicycle New member

    Jun 20, 2019
    5
    hi Jayenne,
    I too have discovered the challenge of caring at a distance. I live at the opposite end of the UK to my mother. She lives in her own home and my brother came to live with her due to his struggle with alcoholism. Over the last 2 years, I increased my visits - reckon I have spend around £3000 last year with flights and car hire. They both drank, Mum couldn't keep up and now has dementia. I couldn't cope with the escalating need to visit so I negotiated a career break. Rainy day fund now gone, I am about to return home. The past 4 months with Mum have enabled me to take her to various activities - she hated the dementia friendly ones, I have started carers with funding from her via LPOA obtained last year, and wonderfully, my brother is sober after drinking himself to a standstill and ending up in hospital. The time has produced results for Mum and me, but at the cost of not spending the summer holidays with my husband and children (nearly adult).
    So I am now about to find out how guilt balances - guilty for leaving a much improved mother who will get anxious the second she cannot see someone with her and thinks she is alone, guilty for leaving my brother to cope, but the winner is the guilt for not being with my husband and children. I will resume my frequent "fly-drive" weekends, but hopefully at a more controlled pace. I have learned from reading posts from the amazing people on here that looking after yourself is vital and am hoping to find a new equilibrium, before it all slides downhill again.
    I wish you all the best with your mum.
     
  10. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    464
    Bedford
    Hi. My Mum (89) is about 1.5hrs away. I stay with Mum 2 days a week to sort out any paperwork, take her shopping, doctor’s appointments etc. She has hot meals delivered when I am not there and carers in twice a week. Carers come into clean as she finally agreed to this (but they also know to have a good natter to her) I generally ring twice a day to try to ensure tablets (in dossett pack) are taken and try and solve any problems, such as ‘where is my shed key’, can you explain what this letter says?
    This time last year Mum could still drive (safely), cook a meal and get to the Doctors and shop. By January I realised the reason she was loosing weight rapidly was because she could no longer cook. She stopped being able to use her debit card about May time and is very confused about money. She is struggling to use tv, phone (to dial out) and washing machine is random.
    Every person progresses differently so this is just my Mum.
    The financial side is horrid- like you I felt that it was like Mum paying me to visit. We finally settled on Mum paying for meals out when I was staying over and petrol costs when I was taking her to her friends, Doctor’s etc
    I am lucky as Mum said to me she wanted to go in a care home as she realises I cannot be with her all the time and she is scared and lonely. She is currently on the waiting list of 2 close to me that we both liked and have a good reputation.
    I hope you can find a solution that works for you both. I find I can cope with the 2 days staying but the phone calls sometimes test my patience (basically as I feel helpless and frustrated)
     

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