Long distance carer and only child

Discussion in 'ARCHIVE FORUM: Support discussions' started by ChrisH, Apr 26, 2008.

  1. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    Devon, England
    I suspect I'm not the only one who is having to deal with a loved one's dementia from a distance and who doesn't have any siblings or other rellies living nearby to help out. It would be nice to get to know a few of you as our experiences of dealing with this disease are a bit different from those who are caring at closer quarters.

    So far I've been lucky in that my mum (82) lives on a 'park home' site (that's the posher name for "mobile home")and they all seem to look out for each other and help each other with odd jobs or lifts etc. I've also been lucky with the level of support I've had from the mental health team. I haven't been told officially what stage mum is at but I suspect from what I've read that she's around 4 or 5. She is aware she has a problem (mixed dementia) but doesn't want others to know about the 'AD' bit. The team are happy for her to continue living on her own atpresent with some help from them and the neighbours. They'd like her to have someone go in daily in the evening to ensure she's had her Reminyl and to see if she has any particular worries. She hasn't agreed to that yet.

    She still pops into town 2-3 times a week and has taken (so she tells me) to eating at a pub. I hope she does as at least I know she'll be having 2-3 good meals a week. She's lost a lot of weight although reckons she's the same as she was when she married!! Hmmm - so you can stay the same weight and magically drop a couple of dress sizes can you? M&S microwaveable ready meals (expensive but reasonably good quality)have become a favourite source of food.

    Apart from weekly phone calls, as I've mentioned in previous posts, we used to see mum only 2-3 times a year because hubby and I both run our own businesses and we have 2 boys (now aged 15 next month and 18 in Aug)to care for. Mum would come to us on the bus but this would now be impossible, even if someone could see her onto the bus her end, as it involves a change in Bristol. She lives a min. 3hr car ride away (on a good day)so popping up to see her for the day is not really feasible, and neither is all of us going up to see her. So now I go on my own about every 6 weeks (Fri, Sat and Sun am) and the rest of my family haven't seen her since I got her down for Christmas. When I go I haven't got time for the softly, softly approach - there's too much to do. I attacked the wardrobes (dirty clothes put back, manky old stuff and outsized stuff sorted, washed, thrown away. Mum insists a skirt is ok - try it on - oops, why's it fallen down? As for bras, don't even go there!! She's never been a 38C in her life so where did that one come from? There there's the kitchen (11 saucepans, lost count of the baking trays - sadly no more homemade cakes to look forward to). Mum gets upset and tearful - "You shouldn't have to come up here and do that. I can do it next week". I'm sure you've heard it all before.

    As for other family members, dad died 15 years ago, her brother died last Sept, her half-sister is 90, in warden controlled accom (but should be in a nursing home as she too has dementia - worse than mum - and is now on anti-depressants)and is deaf so mum can't phone her. The youngest brother-in-law's funeral was last week and the remaining one offered to take mum back with them from the funeral but I thought it would be a bit too much as she'd been a bit agitated since Roy had died (which coincided with her Reminyl dose being doubled). Mum's niece and her husband have offered to have mum for a few days so they can take her down to see her sister, but again this is too close to the funeral so I suggested she goes down later in the summer as they're due to move in a few weeks. So it's not a massive family but at least the others have prior experience with dementia so know what to expect from her.

    Meanwhile when I phone our conversations are very limited and repetitive (which, to be honest, makes me reluctant to phone every day), and she assures me all is well but she just occassionally!! loses things. She'll insist there's been no problem with the various detectors that have been fitted; of course she ALWAYS has a main meal every day; and there's no need for me to pop up whenever she has an appointment with the consultant as she has a car ordered to take her (which is true - like I said, good services). Then I phone her friend - "oooh I've had to go down 3 sunday's in a row because the alarm has gone off and the control centre phoned me. She keeps going to the shops. We had to take her back indoors to change when we went to the dance because her skirt fell down. She's very untidy now isn't she." etc etc etc. When I speak to the OT about the alarm it turns out it hasn't gone off quite as many times as her friend has told me. Then I hear from her other main friend that he'd overheard the first one talking about mum to others on the site - and now these 2 friends aren't talking to each other!!! Mum of course believes they're all talking about her anyway and gets annoyed. So that starts me thinking - who do I trust? I suspect the first one does have a bit of a gossip and when mum gets worse I doubt very much that she'll be much help. The other is very helpful and has been through all this with his wife (now dead), but it's not easy for me to phone him as he is a bit deaf and doesn't like talking on the phone! You could probably turn all that into a soap opera!

    So that's my current situation. Next visit mid-May for consultant's appointment - orig booked for 12th but saw the OT last week (went up for the funeral) and said Monday's aren't good for me; 3 days later got a letter changing it to the Friday, a day I suggested was good for me (er, sorry if that makes some of you are feel a bit jealous about my support team). I know my real problems are going to start when they consider mum is a danger to herself and/or others and can't live there anymore. Living with us isn't an option - she always said she'd never do that to us as we'd had my dad's parents, who were both invalids, with us for about 20 years. As we both work she'd be on her own in unfamiliar surroundings with no friends in the area, so that's not an option. If she stays in her current area I suspect that visits from friends would decline rapidly as her condition worsens, but I think it would be better initially for her to stay in her area at least until she gets to the stage when she doesn't recognise anyone. After that I think I'd move her to our area. As a chiropodist I already know some of the residential/nursing homes in the area and there is a good one in our village which would be my first choice - it's residential though so they can only take a certain number of dementia cases and only providing they don't need a lot of nursing care.

    Well I think that's enough of my rambling for now. I'd be really interested to hear from others in this situation to see what your thoughts are on long term care and strategies for coping with the emotional, social and, not to mention, financial costs of long-distance caring. My main coping strategy seems to be humour (I'm keeping a record of 'mum's little foibles').

    Wishing you all well and realising that my problems are nowhere near as bad as some of those I've been reading on TP - yet!


    p.s I just previewed this post and must apologise for the length. I do suffer from verbal diarhea (?wrong spelling - can't be bothered to look it up at 1 am)
  2. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Hello Night Owl!!!! :) Chris, it's been my only coping strategy most times this last few years ... and when I lose it - well I seem to seriously lose it ....... :eek: I'm an only child (and sometimes from what I've learnt here think 'Thank Goodness' - it does have its benefits it seems!) I don't have distance problems ... mum doesn't live with me but close to me .... it doesn't negate all the co-ordination required at times to get all the medical attention I believe she needs ... and it doesn't stop her 'fibs' - whether she tells me face to face or by phone .... she 'fibs' ;) Learning that lesson hard myself at the minute .... of course .... we know they're not meaning to fib ..... but their reality and ours are two very different stratospheres at times ......

    I wish you luck - hope someone's along soon with some more practical help, Love, Karen, x
  3. AnnS

    AnnS Registered User

    Apr 26, 2008
    Not Alone

    You are not alone on the long distance front. I'm not an only child but..... I live best part of 8 hours (on a good day) from my mum and it is difficult when you can't just jump in the car and check she is alright on any given night, or do her weekly shop, sort out the mail etc.
    I don't think my mum got over my dad dying and thats when it started. When it became apparent she wasn't managing I made sure I arranged face to face meetings with her social worker and CPN and ensured that carers started coming in every day. But she didn't think anything was wrong so wouldn't stay in for them. The carers can be very limited as they work on a person centred care approach which is to preserve the rights and dignity of the individual (great) but sometimes it drove me nuts :mad:. My mum could sit there with a packet of sweets and refuse any dinner when it was apparent she hadn't eaten but if she said she didn't want anything then nothing was cooked. Some of the more experienced carers would prepare a meal, tell her that was better than than sweets and of course mum would eat the meal. It just made me want to scream. Eventually I had meals delivered for her that she could just microwave (wiltshire farmfoods)an excellent company that pack the food away in the freezer in case people have problems understanding how to store food. Then there was the problem with the banks. Mum kept losing her card or couldn't remember her pin. Eventually I came to an arrangement with the local branch to enable her to get cash. But overtime things got worse. She wasn't washing, or taking her tablets and I found a similar situation to you (dirty clothes in the wardrobe etc). Mum was staying out late. Going out in the middle of the night etc. I took the proactive approach and started logging everything, essentially building a case to present to the social worker and CPN and show that mum was at risk. Again like you I was getting told different versions of events. But I asked for a meeting with the social worker and CPN and presented the info I'd collected and they agreed mum was at too high a level of risk. If you are worried don't wait for them to do an assessment it is possible to drive things forward. As for moving mum, I thought the same thing as you. But everyone told me the same thing. Don't move her out of the area she knows. So to cut my long story short I managed to get mum into a nursing home. Its early days. She hasn't settled but its new so I can't expect miracles. Phone calls are frustrating as she can't really hold a conversation anymore. Its frustrating, stressful and difficult when you work fulltime and are getting phone calls to say the carers can't get an answer at the door and do you have any ideas where mum might be (from over 400 miles away - probably not!)I feel if I hadn't pushed to get mum into care she would still be at risk in her home. My advice is definitely push for reviews etc if you are worried. As for coping strategies I think I've managed to put on 17lbs in weight (so not the best approach to be fair). I think humour has kept me going too. As for finances - I'm waiting for my mobile phone company to nominate me for customer of the year. I think I've truly demonstrated that mobile phone use presents no health risk! Well I think I've gone on for a bit too long but its not until you look at these forums that you realise I'm not the only one doing this. I don't know if my experience helps in any way but good luck!

  4. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    I haven't posted in a long time. Yes, I am an only child and have been caring long distance. Now, Mum is being looked after in a kind of assisted living facility in India and quite unexpectedly, she is now calmer than before, has 24 hour multi-level care and company, and seems to feel secure to the extent that her sense of humour has returned. She's far better than she was here in Germany. She is still on a combination of Olanzapine and Ebixa. I had never thought this would be possible. However, as I reported before, being a primary care giver took its toll on my own health. I can't imagine how I had managed it all in the past but now that I don't personally have to do things for her, I do sense some relief but at the same time, all that suppressed exhaustion seems to have resurfaced.. Even reading about Alzheimers/dementia exhausts me - one of the reasons I haven't been active here but that is not to say I have forgotten TP. I owe TP a lot and can still remember what others at the time were going through.
  5. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    Devon, England
    Hi all
    Thanks for your replies. As for 'Night Owl' I think Ann wins that one. I probably ought not enquire about what you were doing up at that time! 8 hrs is a heck of a journey, but I think Stimpfig beats you on that one.

    Karen - I always wanted a sibling (preferably older brother who would bring his mates home for me to oggle at!) and after we'd had our first (unplanned) child we decided it would be nice for him to have a brother/sister. Well, as they say, you can pick your friends but not your relations and they proved it when they were younger with constant arguments and physical attacks. In fact when the older one first saw his baby brother he said "I hate that baby. Throw it in the bin" - he was 2yrs 5mths old!! Now they are a bit older they seem to have settled down a bit and have good conversations with each other. Sometimes the older one torments his brother but not too frequently.

    Stimpfig - that must have been a difficult decision to take your mum to India. Did she go willingly or was she at the stage where she wasn't really aware where she was. I'm happy for you that she is now much calmer but it must be difficult for you being so far away. However I have always had the impression that in Indian culture older people are more revered than in most western cultures where there tends to be less respect for all their wisdom and life experiences. I would be interested to learn how people with dementia are treated in India in general. Sorry if I'm being nosey - I studied social anthropology at uni and have always been interested in how other societies do things.

    Ann - I hope your mum settles into her new home. It must be really strange at first. From my experience of visiting care homes in my job I notice that some people seem to fit in from day one and others are still go to the door waiting for their loved ones to pick them up weeks or months later. I remember one lady who would sit in the lounge and constantly repeat phrases like: I don't know why my son has left me here. Why hasn't my son come to pick me up? etc etc. On one occassion the lady sitting next to her said 'And I don't know what I'll do to you if I hear you say that one more time. Why don't you do some knitting or something?' - That same lady is now also in the later stages of dementia and I miss our conversations about how her feet had done an awful lot of miles on the tennis court and how her father had won an Olympic gold medal for football.

    Oh well, nite all - time for bed. I've got such a nice lot of washing, ironing and cleaning to look forward to tomorrow that I can't wait to get up in the morning - Only joking of course:D:D
    Big hugs everyone
  6. Alison K

    Alison K Registered User

    Mar 29, 2008
    lond distance too

    Hi chris, I too am a long ditance carer, dad is in Leicestershire, I'm in London. I am lucky tohave an aunt and uncle who keep an eye on him and report back. I have 2 kids 12 and 7 so a in 2sandwich situation" like many on this site. Dad is stable at present (vascular dementia) but I get fears re future. Biggest hurdle is the long drive to see us which he is determined to do, but I worry he'll end up lost in Milton Keynes or somewhere!!:eek:Anyway get some sleep, and keep the great sense of humour its a common thread on this website as we all need some relief.::D Love Alison
  7. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    Devon, England
    Hi Alison
    'Lost in Milton Keynes' would be a good title for a film or something. I managed it a couple of weeks ago when I took mum to my uncle's funeral. OK as far as coming off the A5 but the instructions didn't say which turning to come off at. I ended up heading into central MK knowing I didn't want to be there. It was not good asking mum to read the directions - the navigator was definitely 'on the blink' that day! - but I managed to find a garage and was told I needed to go back 3 roundabouts (all directions in MK seem to be done in terms of roundabouts - which all look the same). That meant going up to roundabout no. 4 before I could turn round. What joy. At least we made it to the crem on time. I'm trying to decide whether or not to give an account of the funeral. It was a sad occassion of course but my dear uncle would have been rolling around laughing at the bizare assortment of rellies who turned up. It was like a plot out of Eastenders!! It's my warped sense of humour I guess. Think I'll save it for another day and decide just what sort of thread it would go best in. I don't want to upset anyone by appearing flippant about such things, but Dave Allen would have appreciated it.
    Gotta go. Late dinner.
  8. Alison K

    Alison K Registered User

    Mar 29, 2008
    A good song title I think

    Thanks for reply Chris, you and I obviously share same sense of humour. I need to be able to have a giggle sometimes as I'm at risk of being too far up my own a--e :eek:at times. No I didnt find your musings re funeral offensive, I have been to funerals where the person being buried would have laughed themselves silly at some of the things happening. One common thread in this talking point is despite real pain and sadness many of these people still have a fantastic sense of fun. I think Olivia Newton John sang "lost in France", "Lost in Milton Keynes" isnt quite so exotic. Apologies to those in MK, I do not mean any offence its on the M1 thats all!! blathering again Take care Chris Love Ali:)
  9. ChrisH

    ChrisH Registered User

    Apr 16, 2008
    Devon, England
    that funeral saga!!

    Just remembered I was going to launch into the saga of my poor uncle's funeral. Firstly, as mentioned elsewhere, he would have found the whole thing hilarious so I'm not doing him any disrespect. He was a great joker, brilliant at accents etc. All I can say is Eastenders eat your heart out as I think this almost eclipses the Frank fiasco (I'm not an Eastenders fan by the way but my youngest son often watches it and the funeral episode a few weeks ago happened to be one I saw as well).

    OK here's the background (I'm not using names by the way, just in case someone who knows me comes on the site!! - probably unlikely)
    Uncle had been married 3 times. Wife 1 was out of the picture long ago (since dead I think) - no children. Wife 2 - 3 children (eldest sadly died), bitter divorce - not suprising as she was left with the 3 kids on her own. Wife 3 - met and married abroad (s.e. asian) - 2 children by her previous marriage and one of their own. They came back to uk 20 odd years ago. Not much contact between the two families but in recent years the middle son of wife 2 had met up with dad a few times but I'm not sure if he'd met the other children - but probably did. Wife 3 and uncle separated about 15 years ago but I don't think they ever got round to divorcing and I don't know if he ever got round to officially adopting her 2 kids. They use his surname and the boy is now in the army. I understand they do have British nationality.

    Before the funeral I had a phone call from Wife 2: "Hello Chris, I think if anyone would know, you would. Were Wife 3 and uncle officially married?" - she thinks I'll know as I spent nearly a year in se asia and saw them quite a lot while there. I'm also the family historian. I told her that as far as I was aware (having seen some photos) they were married and I definitely know their son's birth was registered at the British embassy. Seems like there was some friction over funeral arrangements because Wife 3's daughter was doing it and Wife 2's eldest surviving son thought it should be his job!

    So I get mum organised and we get to the crematorium and meet up with the oddest bunch of rellies you could think of who would go to the funeral:
    - Wife 3 (possibly divorced) and uncle's 2 (possibly official) step-children (+ partner of the girl) + his son (+ his wife)
    - me, mum, uncle's surviving brother, his wife and 1 of their sons
    - the 2 surviving sons from Wife 2
    - assorted friends
    So far so good - nothing unusual about the list. Now lets add some others:

    - Wife 2 (definitely divorced - not much love lost there!!) - there to support 'her boys' I think
    - But perhaps she needs a bit of additional support herself so enter:
    - Wife 2's aunty (happens to live in MK)
    - Wife 2's niece and niece's eldest daughter (haven't seen niece since we were about 14 and she came on holiday with me, mum & dad!! her eldest is 29, mine is nearly 18!!)
    - uncle's ex-girlfriend (oops! forgot to mention her above)
    - and perhaps most bizarley - a european work colleague of one of Wife 2's sons!!!
    Told you it was odd.

    At the wake it was very much 'us' and 'them' and mum and I somehow got shoved up in a corner with 'friends' so I didn't get much chance to chat to the motley crew and poor mum was a bit miserable because she wanted to sit with the surviving brother and his family. Wife 2 then decided to have a 'family photo' and gathered those of us she considers 'family' in reception. Looking at the photo now there are people missing. One is my other uncle's youngest son who was working so couldn't come, but most noticable is my other cousin - ie uncle's son by Wife 3, his wife and their 2 children who were at the wake and who I consider as much part of my family as Wife 2s children. Like I said, 'us' and 'them'.

    Oh yeah! He didn't leave a will!!! And no one can find a marriage cert. for Wife 3 - and if the marriage wasn't registered in this country as well apparently it isn't valid. Now they'll have fun sorting that lot out won't they.:)

    Happy families:):)
  10. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Another one here who cannot sleep but your MK bits made me smile.
    When I first moved here, I went to CMK to do some shopping.
    There and back no trouble.
    The following day, I needed to go to CMK to pay some bills.
    Which was on the next Boulevard.
    Now I only live 5 minutes from the Centre but the day I went to pay the bills....6 hours to get back !!!!!
    I had done North, South, East and West.
    17 years on, I always carry a map for those poor motorist who get lost.

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