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.

  1. Topsy Tiger

    Topsy Tiger Registered User

    Nov 12, 2019
    22
    Well, the day has finally arrived. She is still in bed and has no idea what lies in store for her.

    Yesterday was very difficult as brother and I had to break the news to her best friend, who is still beaten up due to a fall the previous day. How does it feel to make a 96yo cry? Absolutely horrendous. Not for the first time that day, I was in shreds too. Victoria saw Mum yesterday evening for a couple of hours and was very brave and didn’t spill the beans. I drove her home at 8.45 after Mum went to bed and there were a few more tears - for her it is the end on an era. For us all, really.

    I also took Mum’s things to the CH yesterday afternoon. They have swapped the room that she will occupy. This one is noticeably smaller although equally nicely decorated and a marginally better view. It has a single bed in it, which is electronic so she can sit up in bed if she wanted. Of course she would never remember how to operate it and all I did was begin to worry, as she is used to a double, that she may fall out and break some bones. We had been planning to take a favourite chair but we couldn’t fit in either my or brother’s car. As it was, the room would be too small to comfortably accommodate it anyway. Whilst I was unpacking, a resident called David, in a room opposite Mum’s was wandering about and I could hear staff saying (kindly) “David, that’s not your room. David THAT’s not your room either” and I had visions of Mum waking up to see a strange man looming over her bed. He also seemed to keep setting off the room alarm calling for attention even though staff had just been with him and the constant peeping will drive Mum insane. Creeping misgivings the entire afternoon. I realise I may very well may be looking for excuses to change our minds. I certainly spent all day yesterday fervently hoping we could forget all about it and carry on as normal.

    So this morning, the normal morning routine will be followed until 10.15 at which time I will have to excuse myself BUT not before thinking of a ruse to get her slippers off her! If I can also get her favourite photo and her carriage clock without her noticing, I will. Then it is off to the care home with the final bits and pieces and flowers to await her arrival at 11. My brother will be bringing her as I just cannot be there when she exits her home of 45 years for the last time. How can one be bright, cheerful and positive in front of her after witnessing that? I can’t so I will be the TA-DAH! welcoming party.

    Feeling sick. Must stock up on tissues on the way back as I fear I shall get through boxes over the next couple of days.:(
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,877
    Kent
    Thinking of you @Topsy Tiger, knowing how you feel.

    The stomach turning over, the heart missing a beat, feeling deceitful, it`s not what you would wish on anyone even though common sense prevails and you know you are doing the right thing.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,937
    Female
    Dundee
  4. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    623
    Thinking of you @Topsy Tiger . You wouldn’t have made this move unless it was in the best interests of all of you. I assume the home isn’t too far away so you can arrange for your mum’s friend to visit still.
     
  5. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    597
    Female
    Stay strong for your mum, the heartbreak can come later.
    xx
     
  6. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    95
    Sending you strength to get through this most difficult of days.

    It will take time for her to get used to her new surroundings so please don’t get too upset in the first week or so if she seems unhappy.

    Good luck!
     
  7. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    180
    Hi Topsy Tiger
    Thinking of you today and hoping all goes well. My sister and I moved mum to a care home 4 weeks ago and can't believe how well she is settling in as she always said she would never want to go into care. I hope you find that your mum settles quickly too. Take comfort that you will still be involved in her care, but that the burden of care that wears us all down , will be eased .
     
  8. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,332
    Nottinghamshire
    Hoping it all goes as well as it can do @Topsy Tiger

    I hope your mum’s friend will be able to visit.
     
  9. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    383
    Female
    South East
    Thinking of you @Topsy Tiger , hope it goes as well as possible and Mum settles quickly .
     
  10. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    470
    Bedford
    Will be thinking of you today. It sounds like you have done all you can up to now for your Mum at home.
     
  11. chippiebites

    chippiebites Registered User

    Jun 27, 2018
    69
    Female
    Only just read your post, it is so touching. You can have all my positive thoughts for today. Hope it goes as well as possible. Love and hugs to your mum and you. xx
     
  12. Wildflowerlady

    Wildflowerlady Registered User

    Sep 30, 2019
    20
    I do hope everything goes OK today, I read your post a few days ago and have been thinking of you all. My dad is still living at home on his own but has had carers in for just over two years four times a day and my sister and I visit lots, not a day go by when he doesn't see one of us. Its so wonderful that you and your family have given so much care and time to your mum how lucky is she to have such a loving devoted family. I can only say I hope that she settles well and you can have some comfort and peace knowing that indeed the time has come for her to go into a Care Home. I know that my dad will need to go into a Care Home possibly within the next few months or sooner unfortunately we are at the mercy of the Local Authority as dad has no property or substantial savings. I already know in my heart it will be the best thing for him as we are not able to have him live with either of us, my partner has progressing Parkinson's and my sister is full time carer along with her husband for her adult handicapped daughter. I have much admiration that you did what you did for your mum its a tough journey so be proud of your achievement in everything you have done no one could have done more. A hug from me to you
     
  13. Wildflowerlady

    Wildflowerlady Registered User

    Sep 30, 2019
    20
    Sorry looked like I had posted same again hopefully have managed to edit it by cancelling full post again.
     
  14. Topsy Tiger

    Topsy Tiger Registered User

    Nov 12, 2019
    22
    Thank you all, every single person who has sent good wishes is a saint! I should like to respond to each of you individually but I feel too exhausted and down at heart.

    So how did Black Wednesday go? I went on ahead this morning and brother brought Mum along for 11am. She was whisked into the lounge on her floor (3 floors, one for early dementia, one for middle stage (which is where Mum is) and one for advanced all pretty much identical, so residents can move seamlessly between them as their dementia worsens) and sat with a couple of residents for tea. Brother and I sat with them too, members of staff kept coming over to her to say hello, all using her name as if they’d known her for years. The table was set for lunch so brother went to do the contractual business and I stayed with the ladies. Mum started to get a bit upset and anxious as neither I nor brother were going to have lunch with her. A very well spoken man then plonked himself down between Mum and me and randomly said “I used to have a frog like that”. In order, I think, to divert Mum from this oddity, one of the ladies said “you’re in a care home now so let them take care of you”. The term ‘care home” triggered Mum as she thought she was in a hotel. She became very distressed and said she wanted to go home and asked me to find my brother and tell him he mustn’t leave without her. It doesn’t sound like much but it was very upsetting. So I did go to the ground floor and explain what had just happened to brother and assorted staff and the senior care manager for Mum’s floor told us to just go and on no account go back to Mum. Which is what we did.

    Stream of consciousness continues below!!

    I came home at 1pm to pick up Mum’s slippers, some framed photos and a carriage clock and took them to the CH Reception at 3pm (about 4 miles away). I was told she had had her lunch and was having a manicure (as a distraction) but she had asked for me three or four times and had also asked for her mother and sister (clear and frequent manifestations of anxiety). So we’ll have to see how she gets through the night. She starts sundowning around 5pm so may not be much different there to how she is here. I will get a status call tomorrow morning.

    As for me, I am sitting in Mum’s house thinking that the world is out of joint. What is she doing? How is she feeling? How can she not be here? Looking at the familiar things, knowing she may never see them or use them again is like a stiletto in the heart. I have the urge to go back, scoop her up and bring her home - I guess that is very common. What is the point of me being here anyway if she’s not here? I have a home in London, shut up some years ago, which I see three, maybe four days a year and to which I grieviously yearn to return. Caring for Mum is my responsibility and I am now programmed to think of her every minute of the day - predicting her needs and making things right is MY job, what am I going to do, if not that?

    The sadness is overwhelming me once again. Tears, which have not flowed all day, are finally here. I can sum my feelings up simply - I want my Mum back.
     
  15. Dimpsy

    Dimpsy Registered User

    Sep 2, 2019
    597
    Female
    99% of you wants your mum back, that's your heart breaking; try and keep the 1% from disappearing, that's your head telling you mum is safe and cared for evermore.

    I bet your mum is having tea / watching the TV / talking to residents and carers / investigating her room and will sleep well tonight. You, my dear, are facing long hours of anguish and upset, do please, listen to that 1% of common-sense, you know inside mum is in the best place for what she needs now.
    Take a deep breath, and,as others will tell you, pull up your big-girl pants, the worst is over; be proud but most of all tread gently with yourself.
     
  16. annielou

    annielou Registered User

    Sep 27, 2019
    226
    Lots of love to you xx what a hard but necessary thing to do.
    I'm sure I'll struggle to do the same with my mum. It's so hard to do things that are the best for them but that emotionally don't feel that way. I really struggle with it. It sounds like your family has really looked after and looked out for your mums best interest and still are doing so. I have lots of admiration for you.
    I too want my mum back, my proper mum back, and I know mum wishes she was back to her old self too. Dementia is so cruel.
    I hope your mum settles soon and that helps you and family cope.
    Lots of love xxx
     
  17. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    623
    {{{@Topsy Tiger}}} Not a lot of practical advice I can add, but you know you've done the right thing. I too would love to have my old mum back, however much she annoyed me then.
     
  18. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    383
    Female
    South East
    Oh @Topsy Tiger , that made my eyes leak, I feel for you immensely . @Dimpsy has summed it up perfectly , I am sure mum will settle soon and make friends and lose her anxiety, can only imagine how upset you feel but try and remember why mum needed that move. You have done your very best for your mum and still are . Please be kind to yourself and let those tears flow. Sending a big virtual hug and strength to you.
     
  19. Lirene

    Lirene Registered User

    Sep 15, 2019
    140
    Dear God, please make it all go away please bring my husband and mum back from this terrible tormented world they now survive. Not live, just survive - hanging by a thread of what was a semblance of normality, spinning and racing down this whirlpool of hell which is sucking the life from us all. My prayers and thoughts xx
     
  20. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    95
    You are bound to feel adrift - the routine that you provided to support your mother, in a way supported you also. It gave you a structure and a purpose. That routine has gone and something needs to replace it. That will take time.

    Get a good night’s sleep and I hope the morning call will bring you some comfort.

    keep posting.
     

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