Losing mum when she is still alive

This is my first post and I must say I have never done anything like this before. I am currently helping to care for my parents, my mum has Alzheimer’s disease and my dad a serious respiratory disease. My mum was and still is my best friend but every day I feel I am grieving for the mum I once had. I used to be able to talk to her about anything and everything, we did everything together and I felt so close to her but now she struggles with everything which is breaking my heart every day. Her memory is failing fast, she constantly lives in the past, her character is changing and she is unable to understand even the most simplest of conversations. I feel such a sense of loss and sadness which sometimes overshadows everything that I do. I fear for the future and sometimes wish that a physical disease would take her so that she does not have to endure what she is living through. My biggest fear is that one day, and it probably wont be long, she will not be able to remember who I am and it is this thought that causes me the greatest of pain. I sometimes feel selfish because mum is 87 years old and I have been so lucky to have her for so long. I know many of you out there have lost parents at such a young age so I have no right to feel this way but I do. Does anyone have any advice as to how they cope this situation, I would be very grateful to hear your comments

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Hello @Kate110,

I’m Seaneen, and I’m part of the Online Community team. I wanted to say thank you for bravely reaching out. I’m so sorry to hear about your dad and mum. I can hear the heartbreak in your words. You are not selfish, and you are not alone.

I’m sure someone will be along to offer their support, but I wanted to share a few resources which might be helpful right now.

  • Our Anticipatory grief page talks about the feelings associated with grief in the days, months or years before someone dies. This is known as anticipatory grief, as you are grieving for someone who is still alive.

  • Alzheimer’s Society offers advice and support to people affected by dementia. You can call their Dementia Support Line free on 0333 150 3456.

I hope you find the community a good source of support to you, too.

Take care,

Hi @Kate110

I’m sorry this is happening to your mum and for the upset this is causing you. I haven’t got any advice but I didn’t want to just pass by after reading your post.

Alzheimer’s is such a cruel disease, I cannot imagine what you are going through.

I’m not sure if it would help but maybe you could make a little book, Titled "my name is (mums names) and write a story I am Tracy, I am married to Peter. I have three daughters and two grandchildren. Each page you could have a picture of who’s who for example my name is Kate, I’m 56 I have two children, I work as a nurse and have the best mum in the world, I loved our adventures together… You could have a page for “my likes” “my dislikes” and so on.

While you mum still has her memory, maybe you could ask her what her favourite memories have been and what she would like you to do in the future etc. you could write these down so you will always have you mums words close by.

Hope this helps. Sending lots of love :purple_heart::heart::purple_heart:

Thank you so much for responding, your kind words and really useful information are things that i had not thought about. In particular the diary/ journal is a wonderful idea. We have been on so many adventures together and this would be something practical and lovely to go through with mum.
I cannot tell you how much comfort you have given me. Just knowing that you both cared enough to respond gives me strength and hope that we can get through this awful time as a family. I cant thank you both enough xxx

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Oh @Kate110

Your so welcome :smiling_face_with_three_hearts:

Here to chat, if you ever need it. Good luck with the journal, it’ll be lovely to read back on xx

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I feel and sympathise with your pain. My sister has dementia and it is cruel. The journal sounds like a great idea. Perhaps making a recording of family voices or even video recordings from a mobile phone would be comforting for your mother. Sometimes hearing is a powerful memory aid. Favourite songs seem to trigger memories for some people.
Wishing you strength and sending hugs your way. Xx

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Hi @Kate110

I’m new here and saw your post and really sympathise with you. My Dad who was my best mate had mixed Dementia and sadly passed away 12 weeks ago, I’m really struggling but trying to remember all the good times we had together. Me and my mum looked after him at home for 5 years, we spent every day looking through photo albums, we made sure the digital photo frame was on with photos of his grandchildren and him on holiday together. I found Music was a nice relaxing thing he also liked, and he remembered the words to the songs he used to love when I was a child like Roy Orbison. Dad also loved having the birds in the garden so I made sure he could see the bird table through the window and we would look at pictures of garden birds in a book. I think maybe I’m one of the lucky ones my Dad still knew me, my mum and my two teenage children when he passed, I’m grateful for every second I got to spend with him but what I’d give just to hear him say “Hiya babe” when I walked through the door again :cry:
Don’t know if any of my ideas will help but sending hugs x

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Thank you so much Minnie, and i am so sorry for your loss. You sound such a loving person and between you all, did such a wonderful job in supporting and loving your dad right up until the end. It is interesting that you mentioned your dad enjoying watching the birds, my mum loves to do that, it brings her so much joy and peace. Thank you for your kindness when you are experiencing such a sense of loss. Thinking of you and sending you lots of hugs, thank you so much :heartbeat: x

I just wanted to see how you are. Your grief is so raw but I have been thinking about you and am wondering how you and your family are coping? Sending you love and hugs x

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Hi @kate110

Sorry I hadn’t noticed your message in my emails. I’ve been a bit better this week and probably had less tearful days, the simplest of things can set me off like a song that comes on in the car while I’m driving or looking for a photo on my phone and seeing lovely photos of my Dad. I’m sure in time I will be able to smile and remember the happy times and what a wonderful Dad he was without crying, seems a long way off but I’ll get there. I’m lucky to have two wonderful kids, 18 and 21 who will happily laugh and cry with me, I have noticed that friends haven’t been as supportive as I thought, more the long term friends, maybe they don’t know what to say or because we don’t talk all the time they just forget but the people I’ve met since Dad first got diagnosed are the ones who send a message asking “how are you” and just that simple question can lift you up and make you realise people do care.

Sending lots of love and if you need to chat I’m here xx :two_hearts:

Hi, i am so pleased that you have such a great family and the love and support of your children. Sometimes grief can hit you so hard it takes your breath away and you are left with a physical ache in your heart that can be so intense. I think you are doing so well and are taking things one day at a time which is all you can do. People who you think are your friends can sometimes react in hurtful ways without realising but it is probably more to do with them feeling awkward around you and not knowing what to say, either that or they are not worth the effort! Only you can know which one it is. It must be such a comfort to you knowing that you were all there for your dad right until the end and you had the chance to show him how much you all loved him. Take good care of yourself and if you need to let off steam or chat, i am here xxx