1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

The well travelled road.

Discussion in 'I care for a person with dementia' started by Topsy Tiger, Nov 18, 2019.

Please log in or sign up to post
Page 1 of 5
  1. Topsy Tiger

    Topsy Tiger Registered User

    Nov 12, 2019
    22
    #1 Topsy Tiger, Nov 18, 2019
    In 48 hours, my mother, six weeks off 93, five feet nothing, seven stones, poor eyesight due to macular degeneration and thirteen years into living with vascular dementia, will be sitting, anxious, frightened and bewildered, in a care home, wondering when I, her daughter and principal carer, is coming to take her home. The answer is, I won’t be.

    I have read many threads on TP on this topic and fully understand that we are on a road well travelled. I don’t even know why I am writing this - there’s nothing new to be said - but she and I have walked this road together, with the occasional companion, for many years now. On Wednesday, our paths diverge.

    Why is this happening? Will she be any safer, well-fed or less alone? No. She is well looked after as it is, spends very little time alone and all of her needs are met. Some of the time she is quite content. But the time has come I suppose. Myself, my brother and the handful of family friends who visit just don’t feel like we are equipped to deal with the increasing dementia-driven anxiety any more. Along with this, I have been finally persuaded, largely through reading the TP threads, that we are at a tipping point, following which integration into a care home will be exponentially more difficult. In other words, it’s now or never.

    I have read the stories about those who settled quickly, about those who took weeks or months to settle and those who never settled. I have read, with deep respect, about those who choose to carry on with their caring duties and reject residential care. I don’t yet know where on this spectrum we will land but I draw as much confidence, advice and inspiration as I can from all of your stories with thanks.

    I don’t for a moment expect that anyone has the time or emotional energy to do this, but in the infinitesimal chance that you do, please think positive thoughts at 11am on Wednesday 20th November for a tiny, quiet, anxious elderly lady who is about to be thrown into an unfamiliar, frightening, communal world with strangers and new routines that she won’t understand and didn’t ask for. And also for her daughter who is practically overwhelmed by sadness that this is where the road has taken us.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,343
    Merseyside
    #2 Cat27, Nov 18, 2019
    Welcome to DTP @Topsy Tiger
    I wish you strength for Wednesday. Please keep posting as you’ll get lots of support here.
     
  3. Whisperer

    Whisperer Registered User

    Mar 27, 2017
    98
    Male
    Hampshire
    #3 Whisperer, Nov 18, 2019
    Dear Topsey Tiger. Sorry about what is to happen and yes I will reflect on Wednesday morning. I dread such a day may arrive with my mum, so I can understand a little of what you are feeling. Please just remember all that you and others did have put this day off for a long time. Without those efforts it would have happened much sooner. With them your mother experienced good years in a safe and loving environment. Try and remember that point in what will be very difficult days in the near future. Sorry I cannot say anymore but I imagine other members will shortly post their support. You have clearly given so much, keep that in mind. Best wishes.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    #4 Izzy, Nov 18, 2019
    Welcome from me too @Topsy Tiger.

    What a heartfelt and thoughtful post. I'm glad you shared your feelings here and I hope it helps to know that people totally understand how you must be feeling. Wishing you strength for Wednesday.
     
  5. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    301
    Female
    Mid Lincs
    #5 RosettaT, Nov 18, 2019
    Welcome Topsy Tiger, I'm sure you have made the decision to place your mum in care because you know in your heart it is the best for her. I don't doubt you will question your decision over the coming weeks but lets hope she is one of those who does settle and finds peace and therefore so do you.
     
  6. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    95
    #6 Rosalind297, Nov 18, 2019
    Shedding a tear for you both. Wishing you strength for Wednesday and the weeks ahead. Let us know how it goes.
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    969
    Male
    North West
    #7 Palerider, Nov 18, 2019
    Last edited by a moderator: Nov 18, 2019
    Thirteen years is such a long time to care for someone. I will think of you and your mum on Weds. I was going to post a poem on my own thread, but thought I would share this with you. Its a poem that is interpreted in many different ways, but my own is through the veil of dementia and parting of our ways

    https://allpoetry.com/Journey's-End

    The whole poem can be found in the link.

    Journeys End

    In western lands beneath the Sun
    The flowers may rise in Spring,
    The trees may bud, the waters run,
    The merry finches sing.
    Or there maybe 'tis cloudless night,
    And swaying branches bear
    The Elven-stars as ......
    J R R Tolkien


    ​
     
  8. lis66

    lis66 Registered User

    Aug 7, 2015
    274
    #8 lis66, Nov 18, 2019
    Sending (((hugs))) and strength for you on Wednesday xx
     
  9. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    123
    #9 Fishgirl, Nov 18, 2019
    I will definitely be thinking of you on Wednesday because you could be describing my own mother, everything’s the same except she’s a year younger and only just started showing signs of dementia but it’s progressing rapidly and I feel so sad for you and your mum because I know I’ll feel exactly the same if the day comes for her to go into care. xxx
     
  10. Lea8

    Lea8 Registered User

    Nov 3, 2019
    11
    #10 Lea8, Nov 18, 2019
    Wishing you strength for Wednesday.x
     
  11. Lirene

    Lirene Registered User

    Sep 15, 2019
    142
    #11 Lirene, Nov 18, 2019
    I wish you strength and positivity for everyday now and always. My thoughts and prayers are for everyone - this is our hell, on earth.
     
  12. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    605
    Female
    #12 Dimpsy, Nov 19, 2019
    The day will come - the day will go, the birds will carry on singing, meals to be cooked, washing pegged out, the minutae of daily living, but a life-changing experience for you nonetheless.

    Hopefully, the care home staff will ensure your mum isn't sitting anxious, frightened and bewildered and you will be able to visit and see mum settled and happy in her new environment.
    Have no regrets, you have been a wonderful and caring daughter for a long time, and the fact that you recognise mum needs more help than you can provide further shows your love and respect..

    I'll be thinking of you both on Wednesday; my mum lives with us and at some point we will tread the same path, keep posting, I'm sure we would all like to hear how the day went.
     
  13. Mammys boy

    Mammys boy New member

    Nov 19, 2019
    1
    #13 Mammys boy, Nov 19, 2019
    Will be thinking of you and your Mum on Wednesday. My Mum has been on a medical assessment ward for 17wks, it's heartbreaking. Sending thoughts and prayers
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    #14 DesperateofDevon, Nov 19, 2019
    I will be thinking of you on Wednesday & sending you positive thoughts & love. I found that filling Dads room with flowers & familiar bedding etc, made the room his.
    Paintings on the wall & pictures of his adored mum plus a radio with his beloved classic fm make Dad feel settled.

    ((((((((hugs)))))))))
     
  15. Topsy Tiger

    Topsy Tiger Registered User

    Nov 12, 2019
    22
    #15 Topsy Tiger, Nov 19, 2019
    Thank you all so much. Our little family is just one of many facing this dreadful situation, I know, but right now the intensity of emotion and the surreal fact that today is our last day together at home makes it seem almost unbearable. Lack of sleep doesn’t help.

    Two things need doing today.

    1. take a chair and her belongings to the care home and set the room up. I won’t be able to take too many personal items as she will notice that they are missing - that will be for another day. We are having a brand new TV being delivered to her room as the TVs that the home provides are too small for her Macular Degeneration to cope with. I am hoping that it doesn’t get much use as she will be encouraged to use the communal areas during the day. But she has always been a quiet person who likes her own company so needs her own space from time to time.

    2. We haven’t told her best friend what is happening yet, through fear that she would get emotional and blurt out our plans to Mum. My brother and I were going to do that yesterday but, would you believe it, she had another nasty fall yesterday morning although not bad enough for hospitalization. Her daughter asked us to hold off until today but this is cutting it fine and whilst the friend knows that we have been considering a CH, the reality will come as a dreadful shock at a time when the fall has already exacerbated her depression. This is going to be horrible.

    I have just watched dawn breaking and yes, @Dimpsy, you are right, dawn will continue to break every day and the mundanities of life will continue to occupy us and new routines will be forged. The only way out is through.

    Mum is stirring. Better get on with the day.
     
  16. Topsy Tiger

    Topsy Tiger Registered User

    Nov 12, 2019
    22
    #16 Topsy Tiger, Nov 19, 2019

    Thank you for this @Palerider. I knew the poem a long time ago and rereading it now through the prism of dementia is very emotional. Funnily enough, I always fancifully characterised our journey in my own mind as going “into the West”. Such a comforting concept.
     
  17. Ponddweller

    Ponddweller New member

    Jun 20, 2019
    8
    #17 Ponddweller, Nov 19, 2019
    Wishing you every strength today. I hope daybreak with you was as beautiful as it was here today. Please let us know how today goes.
     
  18. Helly68

    Helly68 Registered User

    Mar 12, 2018
    480
    #18 Helly68, Nov 19, 2019
    I hope Wednesday goes as well as it can. I have been there and it isn't an easy thing to do.
    Try, if you can not to let too much emotion show whilst you are with your Mum and leave at a point where she is going to have a meal or some other activity, where you can slip away quietly.
    We found that once Mummy settled in her CH she became less anxious as less was expected of her.
     
  19. Nigel_2172

    Nigel_2172 Registered User

    Aug 8, 2017
    27
    Shropshire
    #19 Nigel_2172, Nov 19, 2019
    This is something that so many of us have had to do and is't also possibly the hardest decision to make. I spent months agonising over it, knowing that I couldn't go on looking after my wife but kept telling myself 'not yet, not yet'. In the end, the decision was made for me - she suffered another stroke and went from hospital to nursing home. Well done for making the brave decision. I hope it all works out for the best. Hope to be able to hear that your Mum takes the move well. As others have said, it is a completely new phase for you all.
     
  20. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,343
    Nottinghamshire
    #20 Bunpoots, Nov 19, 2019
    I hope your mum’s transition to residential care will not be a traumatic as you fear @Topsy Tiger.

    Let us know how it goes on Wednesday
     
Page 1 of 5

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Accept Learn More...
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Accept Learn More...