I'm new to the forum. My Mum is 80 and was diagnosed with Alzheimer's 12 years ago. My Dad died from cancer 6 years ago and that was terrible and I used the Macmillan forum which was amazing. I thought cancer was the worst thing, but dementia is the cruellest most horrific experience yet. With Mum we have been through some very difficult times and her dementia advanced greatly when Dad died making her attempt suicide. She has been in a fantastic home for three years and although for so long has been a stranger in my Mums body she has still enjoyed my company and I have loved spending time with her. We have hugged a lot and she always lit up when I arrived even though she didn't know my name. Two weeks ago she suddenly deteriorated and can barely talk, doesn't eat and can't stand or walk. It's like we lost her again. The home say she only has weeks. I thought I might feel some relief as the end of this horrific endless journey may soon be over, but I don't. I just feel so desperately sad for her and for me. I can't even cry now. I used to cry so easily but I've become so accostomed to putting on a brace face that I can't show how I feel anymore. People ask how she is but they are bored of the topic , she STILL hasdementia, it's not so bad they think. Just venting and looking for anyone in the same situation.
So sad for my Mum - this disease is hell on earth
- Thread starter Luckylisa
- Start date
Hello Luckylisa, welcome to Talking Point.
I am sorry that your mum's health has declined so suddenly.
My story has similarities to yours - my dad died of cancer six years ago, and mum had dementia. She died 4 years ago now. When you are looking at the possibility of end-of-life your emotions can be all over the place, or more often not there at all.
Please keep posting, many of us have been through this and will be able to reply to any queries you may have.
I am sorry that your mum's health has declined so suddenly.
My story has similarities to yours - my dad died of cancer six years ago, and mum had dementia. She died 4 years ago now. When you are looking at the possibility of end-of-life your emotions can be all over the place, or more often not there at all.
Please keep posting, many of us have been through this and will be able to reply to any queries you may have.
Hello Rose, thank you so much for your kind words. I remember moving Mum to her NH and that was so hard for everyone. I do hope it gets easier for you too. We are so sad and desolate now but for three years we had some wonderful moments spent with Mum in the home despite the dementia. It can surprise you. Lisa x
Thank you so much for your comforting words Soobee. My family were so close and happy for years, but it feels like the last 10 have been the opposite. So sorry to hear you lost both parents within 2 years of each other, I completely understand how hard that must have been.
I'm so sorry @Luckylisa to hear about what you have been through with both your mum and dad. It sounds as if you have all loved each other very much, and you are being amazing supporting your mum right now. I agree, dementia is the cruellest disease and it makes me very angry too. I wish I could bring you some comfort, but am sending my warmest wishes and you know there are many people here sharing this with you.
Those regular visits to the Home, when you could relate in person to the one you love, albeit through that continuing cloud of dementia, were always so very valuable and meaningful. The times that you could smile and feel the warmth of a smile returned, or the very special touch from a hand which was the hand of a mother who gave birth to you and cared for you without reservation, or perhaps just a simple but knowing 'look' across a room, when you entered that room, all of this and much more which cannot really be set down in words, is what remains untouched, unsullied, and can never, ever be changed nor destroyed. That first move into Care, finding the Care Home,
having to realize that there is perhaps no other realistic option, that alone is very difficult. If the Care Home is a good one, then you can them embark on that journey together, with a loved one afflicted with dementia, knowing that the previous challenges of care when at home, have been made easier and more manageable and 'best interests' are in place. In fact, one finds that when things are properly in place, the Care Home can be something of a haven - devoid of what might have become a potential nightmare at home.
And yet, with all of that in place, it is the dementia which prevails and which erodes the familiar 'persona' of the loved one we once knew in times past. And then, that moment arrives when
this journey draws to a close. We long for the suffering to end. The deprivation of a life which was once so abundant with all the things we hold so dear, the anguish, the pain, the constant state of uncertainty and perhaps above all, that overriding sense of inadequacy which haunted our daily lives - all of these things close in on us, to focus on something new, something truly fundamental and which cannot be changed nor prevented. That first 'bereavement', when you lose a loved one to dementia, is extremely challenging for all the reasons you will know of as well as anyone. That
journey can be hard and long. And now we glimpse a horizon.
My late mother was reluctant to eat nor drink for one whole month. Her dementia set down the rules, as she too slowly came to the final days of her journey. There was very little talk and for a great deal of time, she slept or kept her eyes closed. I remained with her. Beside the bed in the hospital room, stood a small photograph of a seven year old child, with long golden tresses of hair. The nurse noticed it one day and picked it up and her gaze averted to the elderly 99 year old laying there in bed, rather frail, asleep and she could not hold back her tears. And I remember saying to that young nurse, that despite everything, that seven year old child was still here, still living inside the frail 99 year old lady, my mother and that all those very special and significant moments - whether in my own childhood, or in hers, or whether when I visited the Home and we laughed and joked, or else I held her hand when she was afraid, or simply remained with her whilst she slept, all those moments, the happy times, the joyous times - all of these can never, ever be either changed nor destroyed. And when we talk of 'love', we talk of these very same things - not just simple pleasure, self-satisfaction - but something far, far deeper. That something which communicates without words, but say in a
smile, in that particular 'look' across the Care Home room, or in the holding of a hand. None of this, can ever die. And in that something, lies a profound and fundamental comfort - which can never, ever die.
Hi @Luckylisa So sorry that your mum is not good. It is a heartbreaking time and your emotions will be every where. My dad is still living on his own and is doing well with me looking after him but he was diagnosed with oesophageal cancer some weeks ago and is on palliative care now.
Like you I don't cry anymore l just get on with it. I feel terribly sad for dad, he is really lovely and hasn't a clue that he is ill because he has forgotten about it, he thinks he is just fine. I have sadness for dad, huge guilt because I was and still am tired of all this caring but the worst thing is the fear of what is to come. I so much want dad to pass away in his sleep one night before it gets to bad. It seems so unfair that my poor frail dad has to have this happen to him. He is so kindly and does not deserve this. I don't know what to say really but I wish you well.
@Hazara8 your post brings tears to my eyes for all of our loved ones and for ourselves as carers. Even though my mum found mothering hard, and could not let herself have an intimate relationship with me as her daughter, either as a small child or an adult, I still feel all the feelings you describe as I care for her on this journey. I could never have imagined myself having the capacity to be there for her, or that caring for her could bring me any kind of happiness, or fulfilment, but it has. I'm not denying that I have dark days, or that I wish it had not been this way, but overall, there is something to be gained from this experience, and you have the gift of expressing it. I'm sure it helps many of us on here.
Such a thoughtful post. And I was fortunate enough to have been born to two rather wonderful parents. For many who have not enjoyed that kind of close relationship, makes things quite difficult I am sure and to have cared despite all of that, says a great deal about a person.
Thank you @Hazara8 , but I'm not alone, I'm fortunate to have had three wonderful daughters, and now two grandsons, aged one and three, so that has been a huge source of happiness in my life. To love and be loved is a joy we have both shared I guess. Thank you again for all your contributions, I always feel uplifted by them!
Hello @Luckylisa I have just read your initial post and the wonderful responses you have received. I hope they have given you some comfort. Vent away! Sometimes it's necessary if only to maintain our own sanity. You say you are looking for anyone in the same situation. Well I believe I can answer "yes". Mum is 90 and has deteriorated a great deal in the last few weeks. Like you the tears have stopped but I also realised recently I cannot remembered when I last laughed. I feel a horrid resignation for what is inevitable not helped by remarks made by people who have no idea about dementia whilst suggesting they do. I had a message from mum's sister today saying she hoped I was well and that mum "was feeling better"!! I wanted to scream no I don't feel well and no your sister isn't feeling better and she isn't going too. She and the family will be coming up to visit shortly and I'm dreading it. I love them dearly but mum's sister seems in denial despite having a daughter who has just retired having spent her entire career nursing elderly people with dementia and she's definitely discussed mum with her & warned what lies ahead. Tonight I feel numb. Spent time with my darling mum today and told her, as I always do, how much I love her. A smile spread across her face even though she was sleeping. That was lovely. My heart goes out to you and your dear mum. Isn't it awful; you don't want to lose this precious lady but you can't bear to witness her suffering anymore. I feel as if any positivity I may have had left has been sucked out of me. I know I've changed and will never be happy again. Whatever is going through mum's mind I hope it's pleasant - and for your mum too. Take care.
Good morning. I have just re-read your post. It is quiet, just birdsong outside and I'm worrying about what today will bring. Will mum remain asleep during our visit or will we be blessed with that beautiful smile or a few words maybe? If course we won't know until later today. I'm the meantime, I wanted to say Thank You for your beautiful words which have brought me some much needed comfort. I wish I could express myself as you do. Everything is exactly as you say. My mother's love has sustained me all of my life, I only hope she is somehow aware of the deep love my brother and I have always had for her, right now stronger than ever, and later when her suffering is over, will still and always have. Thank you once again.
Hazara8, thank you so much for your beautiful words. Like poetry. I tried to relate what you said to me daughter but it was just to hard to say. I’ve suggested she read it. The last 10 years have been so hard for us as a family with both Mum and Dad’s illness, and yet we were so blessed for so long before that with such happiness. One thought sustains me and that my two daughters will probably settle down and have their own children in the next ten years and I am excited for that. Nevertheless I know the next few weeks are going to be really hard for all of us to bear, so I am truly grateful to have the support and shared experience from you and others on this site. Thank you.
