Coping with visiting Mum

Discussion in 'Middle - later stages of dementia' started by drmclarke, Dec 12, 2015.

  1. drmclarke

    drmclarke Registered User

    Feb 25, 2013
    York UK
    Mum's been in a wonderful specialist dementia care home for 2 years now, after struggling at home with dementia for several years. It's a 6 hour drive from my home, so I visit every 2 - 3 months. Since the time she moved to the home she hasn't recognised me. Her speech is deteriorating gradually so that now she is using made up words for about one in six words ("Well they said they wommed the golshy but I know they really wanted a beng thing"...). It's increasingly hard to get her to talk at all (I NEVER imagined I would find myself saying that!!!)

    After the massive, relentless stress of being a long distance carer for so long, the first year of visits were joyful - I was so relieved to be able to just talk, listen, and hold hands without worrying about life-threatening risks all the time. But increasingly I'm finding that I have a huge emotional 'crash' after every visit, feeling like I've been suddenly dropped into the most intense phase of grieving. It passes in a day or two, but leaves me washed out for several weeks.

    My question is: what practical things do other people do to manage this? I try to arrange visits to other family members with small children, and make sure the night after my visit I stay at a hotel or B&B so I don't feel I have to socialise if I don't feel like it, but still end up feeling like I've been punched in the face.

    All suggestions welcome! Thank you :)
  2. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    I don't have answers. My mom was like that some years ago. And like you, I was grieving her.

    I had counselling, I had extra drugs prescribed by a psychiatrist, I cried a lot after visiting my mom.

    I'm still grieving. But now it hurts as a chronically pain, not as a acute pain.
  3. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    Buffalo, NY, USA
    drmclarke, I think it is quite normal to feel as you do. In a way, witnessing her deterioration anew every few months may be more shocking than the way people who visit their loved ones more often. I see my mother once a week, usually, and I still often find myself absorbing, on the drive home, the shock of some new realization of the week, but this would be overwhelming if I were faced with them all at once. I also slowly realize that the things which once shocked me and bothered me terribly are now no big deal, since I have seen them over and over and seen how, usually, they are not crises in themselves. We cope, we get used to it, we move on to the next problem. But having the avalanche is realizations will have a huge effect.

    This is not really an answer to your question, but please, do give yourself a lot of gentleness and care around these visits.
  4. KerryH

    KerryH Registered User

    Nov 9, 2015
    I'm also suffering with grieving. Mum has spent her first week in a nursing home, but trying to escape at every opportunity. They had to take out a deprivation of liberties safeguard order to enable them to keep her in a locked in environment. The Dr came to assess her and she scored a 0. She's refusing to eat (poisoning) and thinks they're tricking her. She also hates me..! I'm meeting my brother for our first visit and I feel sick and my stomach is churning. This isn't my mum... The dementia has claimed her and god knows how long this will go on for.

    Sent from my iPad using Talking Point
  5. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I had a five hour round trip to see my mum for ten years and it is hard. Sometimes I used to stop the car on the way home and sit there at the side of the road and sob my heart out. I'm not an overly emotional person and can generally rationalise and detach myself from situations quite well, but I never found a way round this. It didn't happen every time by any means but it used to poleaxe me when it did, especially after a particularly unpleasant visit.

    It is grieving. Grieving for the mum you're losing, grieving for what might lie ahead. Perhaps we just have to accept that and go with the flow. A good cry helped me.
  6. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    I don't have an answer for you wish I did my husband is in a care home and like your mum he hasn't recognised me or our sons for months and his speech has gone it is heartbreaking.
    As someone said we just go with the flow when we visit we hold his hands and give them a massage I pray for the day when he will be released from this awful.disease and can only say you are not alone wish you strength xxx
  7. CHEZA27

    CHEZA27 Registered User

    Jan 8, 2015
    I sympathise with you so much. I really don't know how to deal with my emotions after I've seen mum. It's an overwhelming sense off loss when I have to leave her.i constantly have dreams that she hates me and that she what's to kill me-I get really distressed by these. I'm currently doing cognitive behavioural thearpy to help me with my thoughts and feelings. I truly believe that it's a grieving process for that loved one and I often say to my OH that I want mum to be at peace. It's a horrible thought but I don't want her to suffer anymore. I hope you find some peace and trust that we can empathise with you. Stay strong xx
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    I've just read this thread, and it definitely resonates. My heart goes out to all of you in a similar situation, now or past.

    My background: my 73 year old mother was hospitalized in January 2015 after being found outside in the cold, no coat, wandering, disoriented, hallucinating, and injured. She was sectioned/spent 2 weeks in the Geriatric Psychiatric ward (UK/US terminology), diagnosed with dementia, assessed and determined to be unable to live alone and require 24-hour care, and discharged to the care home, which is about 10 miles from where I live.

    Previously, she had been living alone with no services or assistance, 100 miles (a 1.5-2 hour journey by car) from me. Over the past several years she'd suffered a variety of minor health ills and I was making that trip anywhere from once a month to once a week. Now I know it was the dementia (Alzheimer's type) that was causing all the weird behaviour and problems taking her medications and her weight loss and refusal to eat or bathe, refusal to go to the doctor, refusal to let me see most of her house, et cetera. A lot of you have been there and know what I mean.

    So on those trips, which were admittedly nothing like as long as the journey the OP is describing, I often found myself sad, unhappy, depressed, dreading it, angry, you name it. I would be like that before and after a trip; I could deal with her while I was with her, but then might be upset for days.

    Now I visit her in the care home about once a week or every two weeks and often cry or yell or just plain get upset afterwards.

    Here are things I tried and did that worked for me:

    When I used to take the longer journey to see her, I would try to schedule something pleasant for myself to do on the same trip (see a friend or favorite aunt who lived in the same city were the best options) so that the trip wasn't just about seeing my mother and taking her to the doctor, et cetera. On the drive down I would make sure I had something with me in the car I wanted to listen to (and I would take my husband's car, which has a CD player and cruise control--my car does not), whether it was a radio programme, an audio book, or music. On the way home, I would do the same, OR I would arrange a phone call with a friend to distract me. Before I would drive home I would make sure I had eaten and/or had a snack with me, and sometimes would go to the store and buy a new album to listen to (OK, only twice, but it was a good idea).

    I foolishly thought that now she lives nearer to me, I wouldn't get so upset after visiting. Well, I learned my lesson on that one. If it's a bad dementia day, it's upsetting. If it's one of her more lucid days, it's just as upsetting in a different way. She is nicer to me now, but is currently a bit agitated about Christmas and not being "home." I dread, dread, dread the comments about "home."

    I visit her with my husband and what works best for me (after getting to the car and yelling and/or crying and/or hitting things) is for the two of us to go for a walk somewhere, preferably a nice park, but anywhere will do. Being outside and moving helps me.

    I also like to have a plan of what we will do, before we go to see my mother. This gives me the illusion of control over my life (because with dementia, there is no control) and also I know what to expect and if I've agreed to it in advance, I can't back out and go home and get in bed and pull the covers over my head, which is often all I want to do after seeing my mother.

    Then if my husband and I do some normal, boring, domestic things (run errands, go home and cook dinner) I am usually okay, although I'm often upset the next day.

    Other things that have helped me, in no particular order:

    -TP (the only place I feel really safe to talk about everything)
    -I've tried several support groups and one in particular is good
    -talking to the approximately three friends who understand and have not disappeared, although I try not to do this too much
    -my therapist (cognitive-behavioural therapy as mentioned above)
    -my massage therapist, who has helped with back pain and headaches from muscle tension and stress
    -my mailman, when I catch him, whose father had Alzheimer's and who always has a kind word for me
    -stupid, mindless television
    -exercise, any sort
    -being sociable, especially when I don't feel like it
    -being around small children
    -doing any sort of volunteer work/nice things for other people
    -cooking, when I have the time and energy

    What would help most? More time and energy!

    While it was a massive relief, especially at first, to have my mother somewhere SAFE (no more nightmares about her hurting herself or someone else), I am finding, as time passes, that the paperwork/administrative side of things is incredibly horrible. I expect others know what I mean.

    I know that washed out feeling all too well.

    Wishing you all the best Christmas possible.
  9. carol4444

    carol4444 Registered User

    Feb 5, 2014
    I can identify with your posting Amy. I visit my Mum all day Wednesday then attend a 'zumba' class Thursday morning - it breaks the spell and places me firmly back into normality.
  10. hvml

    hvml Registered User

    Oct 10, 2015
    North Cornwall
    Thanks to you all for sharing these coping strategies and sorry to hear about your stressful situation OP. I'll keep them up my sleeve for when the eventuality arises.

    Merry Christmas

    Heidi xx
  11. London79

    London79 Registered User

    Jan 3, 2015
    I can resonate with this too. It's so comforting to read other posts of other people feeling the same as me. I can't cope with the overwhelming sadness I feel when I leave my mum. She has been in full time care since June as my dad was diagnosed with terminal cancer and although I was travelling up every weekend to help practically (I live over 200 miles away) he said he couldn't cope anymore as she was up a lot in the night.

    I miss her so much and feel so sad. It just doesn't seem to get any easier. I just want to bundle her up and take her home with me but I have a full time job and big mortgage to pay. There just doesn't seem to be any easily solution. On a positive note it is a good home and she is well looked after.

    I've just started some counselling and am about to do a mindfulness course which I hope will help. I also partake in wine which seems to help too :) Thoughts are with everyone else feeling as wretched as me. X
  12. Mercuria

    Mercuria Registered User

    May 7, 2014
    My mother is currently in hospital pending discharge into a care home. I haven’t broken that to her yet – she’s very attached to the family home she’s had for 50 years. But what’s coming to light since she was taken in is that she simply isn’t safe to look after herself any more (burnt-out saucepans, bags of uneaten food going off, etc etc, you probably all recognize something of that).

    I’ve put off ringing the hospital for updates and visiting her – it’s a 3-4 hour journey each way but the truth is I find it stressful and difficult to handle. And yes, I feel guilty. She resembles my mother but the dissonance of that familiar voice saying bizarre, surreal things that my "real" mother would never have come out with can be hard to take. I’ve had two years of gritting my teeth and visiting her once a month at home. Of being angry and resentful beforehand, calm and helpful during, then the relief of leaving followed by the depression, worry and grief that sets in afterwards. It’s a long, slow goodbye and there are times when you have to accept that you are going through bereavement while the person is still living.

    You can only accompany someone so far on this journey. You have to have your own life. You have to step back from their descent at some point and you have to be able to plan some fun things to look forward to, each day. They don't have to be anything big. When you’ve had those things, plan some more and take time to look back on the fun things at the end of the day – remember the enjoyment, relive it a bit. You have to build up a store of good memories: life doesn’t have to go completely on hold. And take it one step, one day at a time. If you start thinking about it in its entirety and how the future will be it can all get overwhelming. (And yes I agree about the paperwork and admin side.) I now usually stop off in London on the way back for dinner and a glass of wine before I go home.

    And you will get through it. Anyone posting on this board has come a long way already – we never asked to make this journey and we’re stuck with it for the time being, but we all come out the other side in the end.
  13. Tbower

    Tbower Registered User

    Jan 6, 2016
    Resonating with you

    Amy, thanks for your post - really rang true. This my first post and mum also 73 only admitted to a care home this week. She just had the nurse call me and then spoke to me to say she's not staying forever and needs to go home. I really didn't think it would all be so tough but this is just the start. I will implement some of the ideas you stated so big thanks

  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    You're quite welcome, and I was actually logging in to thank you for your posts.

    Mercuria, yes, we recognize the not safe and not capable of living at home signs, absolutely. Things such as:

    -not bathing (as evidenced by cobwebs in the shower/tub and towels that didn't move for months)

    -buying multiples of things, due to not remembering what was at home and/or buying the same things on every trip (causing me to dispose of fifteen identical bottles of hair styling product)

    -not cleaning anything, so living in filth

    -not doing laundry (threw away very nasty clothes that had been in the washer God knows how long)

    -spoiled food in the pantry and fridge (my favourite was the butter whose best-by date was three years ago)

    -a truly unique filing system (because, of course, family photos definitely belong in the Kleenex/paper hanky box, and the insurance papers with the tablecloths, and the stock certificates with the silverware, and bills from the 1980s and 1990s, but no sign of any mail or statements from the past three years, those had all been thrown out)

    That sort of thing? It seems normal, or at least typical, for this disease, knowing what I know now. But before my mother's diagnosis, I had no idea what was going on; she "covered" really well. But you, and anyone else who has had to deal with this, have my sympathy. The clearing out part is not fun.

    Are you quite sure we come out the other side of this? Some days, I really don't think so.

    What an horrible disease this is.
  15. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    They call it the long goodbye - the person you loved looks the same but they are no longer there.

    My husband has been in care for 18 months now and it seems harder to accept now than it did at the beginning. He was sectioned when I was unable to cope, partly I think due to the effects of my cancer treatment. His wandering became dangerous and he was aggressive with me at times but with no recollection afterwards. He went to a hospital unit for assessment. When the section ran out after 1 month he was put on a DoLS which is renewed when it runs out. It took me another 3 months to find a home that would take him, and then after the first week I realized it was no good for him and it took me another 3 months to get him somewhere better, during which time I was very upset and low. He never slept in a bed and therefore his legs were swollen, he wandered all night and then slept in a chair in the daytime and missed meals and lost a lot of weight.

    He is in a good home now and well looked after but still aggressive regarding personal care, but when I visit him he is so pleased to see me and wants to come home with me, and I usually cry all the way home. I actually had him home on 23rd December, and got permission from the home to keep him overnight, as his son and grandson were coming to stay and I had arranged for his granddaughters to come round as well. I foolishly thought that if it all went well maybe he could come home again, but although he enjoyed himself and seemed to recognize the house, he would not go to bed and sleep, so I had to stay awake with him all night while he continually said he had to get home to see his Mum and Dad (long deceased of course). Also, there is no way he would let me help with any personal care.

    He did not turn aggressive though, as I did not and could not have forced him to do anything he didnt want to do, and I got him back to the home ok, but I feel so low now as I know there is no possibility that I could ever have him home. I think up to that point I had always thought at the back of my mind that maybe I could, now that I was over my cancer treatment. I realize now that home is somewhere in his head that doesn't exist in real life, somewhere where his mum and dad were and where he felt safe and secure.

    I can echo the others here that the pain never goes away but it goes to a dull ache rather than something acute. I have some good friends I go out with, and we arrange things to do so that I aways have something to look forward to. I have a lovely dog who has to be looked after and walked no matter how bad I feel, and she is a great comfort. I visit him usually 4 times a week - sometimes more - and though he too talks nonsense, I smile and laugh when he does, and he loves singing. I take him out when I can to a pub or a walk with the dog - he is still very mobile - and he enjoys it but of course has no memory of it 5 mins later.

    Several things help me cope
    Finding this forum has been a godsend - writing stuff down seems to clear my head
    I love music and go to gigs when I can - something to look forward to
    Going out with my friends as I said above
    As Amy said - watching television - sometimes silly stuff - other times a really good drama series or film that you can lose yourself in
    Walking my lovely dog - although its sometimes sad when I think of all the walking I did with my husband
    Exercise of any sort - I did zumba for a while before cancer - I might start again this year
    I have lunch and go to the pictures with another lovely friend in my village

    I still cry a lot when I leave him, not every time though, and the staff assure me he is settled there, and they spend time talking to him, as he doesn't interact with the other residents, and the only activity he joins in with is the singing.

    As you will see from everyone's posts, we are all grieving as we watch our loved ones slowly disappearing from us and all we can hope for is that they are somehow as happy as they can be in their own world and just make our time with them as special as it can be in that moment.

    I hope you find some comfort and ways to cope in these posts xx
  16. helenlong

    helenlong Registered User

    Sep 2, 2014
    No answer for you, but my mother is also hating me. She is paranoid about my motives, which, I do understand is dementia, but it is so terribly upsetting! I share your pain!
  17. Mercuria

    Mercuria Registered User

    May 7, 2014
    That sort of thing, totally. As you say. The soap, toothbrush and towels that didn't get used for months. The laundry that piled up. The carrier bags full of the food I’d sent, dating back months (concealed, and not where I expected to find them). Neatly folded pieces of unused toilet paper everywhere, including on the floor where they formed "markers", but a definite shortage of toilet rolls in the bathroom. Seven years’ worth of old newspapers. Bills being thrown out unpaid. My books and record collection being thrown out because they were "old and out of date", but rotting rubbish left to pile up in bags in the hall. She’d had to cross a few mounds of junk including bags of rubbish, laundry and unused food (all of which remained un-thrown-out), into the furthest corner of a cluttered spare room, and lean across a bed piled high with empty boxes and other stuff to get at the books and records. (I'm not bitter about it, you can't keep anything forever and I hadn't read them for years, but some of the books are out of print and can't be replaced.)

    Yes, we do come out the other side. We won’t be looking at life in the same way again, we’ll likely have scars, but we do survive it.

    The hardest thing for me is the ongoing personality change. I find these visits quite stressful and frankly am happier not seeing her, which is a difficult thing to admit, but quite honestly I just don’t want to be alone with her. I don’t know who she is any more. And at the same time, I feel so very sorry for her; she doesn’t have any friends to visit her and no other relatives than me.

    (If anyone has any idea what the folded pieces of paper are about do say. I haven't been able to find an explanation.)
  18. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Huge sympathies to everyone going through this - it is so very hard. The first months with my mother in the CH were pretty awful - she could not understand that there was anything wrong with her, was often very angry and hostile, saying she was going to cut us all out of her will, etc. I lived by far the closest so got the brunt of it. I would have to psych myself up to go - my stomach would be in knots, and I don't mind admitting I sometimes chickened out because I just couldn't face it. But at least it was only a ten minute drive, if that.

    All I can say, not that it's much comfort, I know, is that in our case at least, it did pass eventually, but probably largely because her dementia worsened. And eventually, instead of her eyes lighting up when she saw me, followed at once by, 'Have you come to take me home?' , they were just blank. For quite a while I was just a 'nice lady' who made her cups of tea and brought her chocolate. And I felt so guilty for feeling relieved that visits were so much easier because my poor mother no longer knew who I was.

    By the very late stages there was never any response at all, but she was in the CH for nearly 8 years and was 97 when she died.

    I know it's no help to say you're not alone, but those of us who have been there do so feel for you all.
  19. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    folded bits of paper

    Mercuria, I am glad you asked about the folded bits of toilet paper everywhere.

    I've just returned from a visit at the care home, where I noticed that my mother has little piles of folded Kleenex (do you say Kleenex in the UK? some people here in the States say "tissue" or use another brand name; sorry for the tangent) everywhere. She has always folded up Kleenex to put in her pocket or purse, but when I saw the piles today it struck me that this is somehow different. Never mind that she has at least three boxes of Kleenex within easy reach, she had a pile on the sofa, one on each nightstand, another on her foot rest, another on the side table, another on the bed. I could tell it was significant, but not how.

    I have an aunt (73 going on 93, but no diagnosis of dementia) who does the same thing but with paper towels. She folds them and makes piles of them, everywhere, to the point where they take over surfaces. My other aunt says that their mother, my grandmother, used to do the same thing. Drives us mad.

    If we don't get any more feedback about it here, maybe I'll start a thread over in the other forum about folded bits of paper!

    Witzend, it does help to know we're not alone, and to read others' experiences. You were very honest to admit about the times you'd start to go to see your mother, and then not go. Thank you.

    I was so wretchedly anxious this morning about going to the care home to see my mother (partly because the solicitor was coming with paperwork, which is usually a guaranteed trigger for anxiety) that I honestly thought I would vomit and/or pass out. I was only there for an hour and a half but now feel thoroughly done in. It's more draining than children, I swear.

    I'm going to have to go at my own list of suggestions, to figure out what to do now!
  20. mumpkin

    mumpkin Registered User

    Jan 10, 2016
    I've just joined this forum. I've been caring for my mum from a distance (I live in France) for several years now, visiting once a month, and we're getting to the point where she needs either full-time, live-in care, or to go into a home, and I'm finding it very distressing and stressful, feeling like I'm betraying her. I also have a 2-year-old and work, so life is rather busy (feel I have no time to deal with all the emotions). Just wanted to say that it's done me good reading your posts, I no longer feel so alone.

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