So sad for my Mum - this disease is hell on earth

[Kitten71]

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.

I’m so sorry to hear of your situation. It’s a truly terrible disease. I avoid situations where I know people will ask how my dad is. What can you say? I feel like shouting ‘he’s terminally ill with a degenerative disease, how do you think he is?’ but I always end up saying ‘oh, you know, we’re ticking along’. How do you explain how horrific it is? I’m just waiting for the day when someone asks ‘how are you?’ instead of ‘how’s your dad?’ When that day happens, I will seriously kiss that person for their complete understanding. I hope you get lots of helpful advice on here but it’s great just to be able to let off steam in a safe and friendly place xx

 

[Jezzer]

I’m so sorry to hear of your situation. It’s a truly terrible disease. I avoid situations where I know people will ask how my dad is. What can you say? I feel like shouting ‘he’s terminally ill with a degenerative disease, how do you think he is?’ but I always end up saying ‘oh, you know, we’re ticking along’. How do you explain how horrific it is? I’m just waiting for the day when someone asks ‘how are you?’ instead of ‘how’s your dad?’ When that day happens, I will seriously kiss that person for their complete understanding. I hope you get lots of helpful advice on here but it’s great just to be able to let off steam in a safe and friendly place xx

And I say "mum's not too bad, thanks" when I want to scream just like you do. Some folks think that your parent is in care, being well cared for, nice food etc etc so we must be doing great. They just dont know. Sending hugs x

 

[Kitten71]

And I say "mum's not too bad, thanks" when I want to scream just like you do. Some folks think that your parent is in care, being well cared for, nice food etc etc so we must be doing great. They just dont know. Sending hugs x

That is completely it! They are in a care home and care homes must be like the glossy brochures they publish with the poster boy residents on the front, playing cards, having a cup of tea, all very nice. As we know, the reality is, a resident is more likely to chuck the pack of cards at you or rip them to shreds and they need assistance to drink that nice cup of tea! People with no experience of care homes must assume the residents are entertained 24/7 by the carers and there is nothing for the family to do except have a nice little chat! Even when you start to explain, it’s impossible to portray how it is. I guess if you’ve never seen someone with late stage dementia it’s totally impossible to imagine what it’s like.
My heart goes out to you and the situation you are currently in. I know that’ll be me soon too. Don’t worry that you can’t cry. I think it’s your body’s way of helping you to stay strong whilst your mum still needs you. There’s no right or wrong way to deal with this but I hope you have some good friends to support you now and in the future. Anticipatory grief is another thing most people don’t understand but it’s a big old powerful thing and you do right by coming on here to have a rant and express how you’re feeling. It’s a good place to find others who understand your journey completely. Take good care of yourself, you are important too xx

 

[Jezzer]

That is completely it! They are in a care home and care homes must be like the glossy brochures they publish with the poster boy residents on the front, playing cards, having a cup of tea, all very nice. As we know, the reality is, a resident is more likely to chuck the pack of cards at you or rip them to shreds and they need assistance to drink that nice cup of tea! People with no experience of care homes must assume the residents are entertained 24/7 by the carers and there is nothing for the family to do except have a nice little chat! Even when you start to explain, it’s impossible to portray how it is. I guess if you’ve never seen someone with late stage dementia it’s totally impossible to imagine what it’s like.
My heart goes out to you and the situation you are currently in. I know that’ll be me soon too. Don’t worry that you can’t cry. I think it’s your body’s way of helping you to stay strong whilst your mum still needs you. There’s no right or wrong way to deal with this but I hope you have some good friends to support you now and in the future. Anticipatory grief is another thing most people don’t understand but it’s a big old powerful thing and you do right by coming on here to have a rant and express how you’re feeling. It’s a good place to find others who understand your journey completely. Take good care of yourself, you are important too xx

Thank you so much for this lovely message. I think you may be right about crying - there will be time for that later. I've posted about a lovely little "miracle" that happened today. If I had to choose between a £1m lottery win and what happened today, today would win - no question. Take care too. xx

 

[Kitten71]

Thank you so much for this lovely message. I think you may be right about crying - there will be time for that later. I've posted about a lovely little "miracle" that happened today. If I had to choose between a £1m lottery win and what happened today, today would win - no question. Take care too. xx

I’ve just read your post. How absolutely lovely, for all of you. Don’t all those little moments mean the absolute world? I too would disregard the lottery win for a small and loving moment with Dad

 

[Jezzer]

I’ve just read your post. How absolutely lovely, for all of you. Don’t all those little moments mean the absolute world? I too would disregard the lottery win for a small and loving moment with Dad

They really do! You sound very close to your dear dad. I'm thinking about you x

 

[Lucy44]

Hello LuckyLisa, you've made such a good move to share your feelings on here with people who understand exactly what you're going through.
You're right people who don't understand the illness don't fully get what's going on in your world.
Kindly they ask - Hows your Mum ???
If like me you want to say " do you have a few hours and a box of tissues and I'll tell you".

It's heartbreaking , but you are doing a great job. Seeking advice, caring and wanting the best for your Mum is priceless

I hope you can take strength and comfort from the wonderful community on here.

 

[Hazara8]

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 su,,ch 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.

The most important thing really, is that your own experience belongs entirely to you and there is a hidden value in even the most difficult moments, accepting that at the time, this evades us. Dementia, unlike other terminal diseases, seems to play out a kind of 'terminal' role from the outset, in claiming the person we love and know in such a way as to keep us in a constant
state of 'loss', yet the loved one lives on, seemingly in a guise which makes us feel abandoned and without the means to relate in the way we once did. And yet, even if it is in some way hidden from view, that very same person IS there, even to the very end. Our 'thoughts' play havoc with our emotions and that is something of a problem throughout life, when we should really treasure 'the moment' as it happens and even if that 'moment' is a bad one, it is nevertheless transitory. The photographs in an album are usually 'happy' ones and yet these too are snapshots, which eventually fade and are gone. But the good moments - the smiles, the laughter, the holding of a hand, the times when you can say in all honesty that life is very good, in respect of our dementia story, the moments just as they occur and as fleeting as they are, cannot ever be changed nor destroyed. That is a fact, a truth.

The experience with both your father and your mother belongs to you, so that is very special. And even with all of the pain and despair and when the mind is overwhelmed by all of those 'thoughts', there will come a time when you will convey something of profound value to your own daughters, which evolves from out of that very challenging 'dementia' journey - and that
'moment' shared, cannot also ever be destroyed

 

[Luckylisa]

You are so right, it’s the most frustrating thing when people ask ‘How’s your Mum’ to which we reply, ‘Not too bad’ or ‘A bit worse’ . If we actually told them the details of our actual experience we would be talking for hours. People are all very kind and sympathetic, but until they’ve walked in our shoes I do not believe they can understand the horrors of losing a loved one to this disease. In many ways so much harder for those caring, watching and waiting than our loved one.