Tag Archives: dementia

Write a letter to your loved ones

None of us know what the future holds. None of us know how our lives will pan out. I’m sure there are times when you look back and say ‘if only’. Mum’s dementia caused lots of ‘if only’ moments. ‘If only she could have told us how she felt, if she understood why we had to have her placed into care, if she forgave us, if only. We agonised about her treatment and even after her death we all had to cope with varying degrees of confusion and guilt.

Then dad found a letter that mum had written in 1996 to myself and my brother just after her own mum had to go into care. I cannot begin to tell you how powerful that letter was. Not least because it was my real mum talking and not the empty shell that had been created by the dementia. She loved us, she told us when her time came that she knew we would do the right thing and all that she asked was that we stay close to one another.

It put so much into perspective and although lots of tears have been shed it has helped to begin the healing process. So I will write to my son and my grandson and put the letters somewhere safe. I don’t want them to think ‘if only’. x

family notice board

This is just a snapshot of the board behind my desk – it has mum in the middle and my family around – I just hadn’t realised x

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Finding your place

The last few weeks have seen a lot of reflective thought. Mum’s dementia and death have made us all stop and re evaluate what is important.
What is important? What is It that defines us and makes us what we are? The values we hold now are rooted in our childhood and the values our children and grandchildren will have are rooted within us.
My grandson Tommy has been my inspiration this year. His constant smile and perseverance have spurred me on. I talk to him and promise that I will support him and make sure he is the best he can be. He makes me smile. I’m in awe of the fact that if he can’t reach something with his little arm he will use his feet. At only a year old he has learnt to cope with only one hand, he crawls, pulls himself up, balances objects and literally makes my heart melt when he strokes my arm with his little arm. He is fascinated by people and when out with him it takes me twice as long to do anything as he beams at complete strangers who then come to talk to us.

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If you ask anyone about what makes a person special they will talk about personality and character  – why then do we still judge by appearances, why are so many of us on diets bemoaning our shape and our cellulite?
My own grandmother always said ‘ a little bit of help is worth a lot of pity’ that from a women bringing up 7 children in a 3 bed roomed terraced house with no bathroom and an outdoor toilet – oh and her bitter, jilted great uncle living with them too ( he taught us all to swear, took up residence by the open fire, smoked a pipe and never ever removed his flat cap). No wonder she judged people by their response to and care for others. I don’t think I’ve laughed so hard since her funeral when all 7 of her ‘children’ (then in their 60’s and 70’s) recounted tales of bath night and teasing dad who as the eldest got first go in the tin bath in front of the fire. When the lads talked of arguing who’s turn it was to empty uncle Ernest’s chamber pot (apparently one of his skills was to fill it to within a millimetre of the rim) tears were running down their faces as they laughed and remembered their childhood.
Values are talked about frequently in education. What values do we need to encourage and develop.
The Dalai Lama said ‘I have no religion, my religion is kindness’. We encountered such kindness during mum’s last week. It didn’t take much, a cup of coffee, a hug, a listening ear, an e mail, a regular text – all served as reminders that we weren’t on our own.
Today feels significant as it’s the first home match of the season. For the last couple of years that meant that either I or my brother had to go and sit with mum. If I’m painfully honest I dreaded it. It was like being stuck in mum’s frightening and frustrating world for several hours. The last time I did this was the week before I went to Kakuma which now feels a lifetime away. Dad is still struggling, life is very surreal at times – a phone call from my uncle with a message from mum via a medium, a first birthday party, the planning of holidays, taking flowers to a whole range of graves as mum’s ashes are in the same village cemetery as my son, her sister and her mum…and life goes on. Sunday is the anniversary of my eldest son’s death 28 years ago. At the time I couldn’t see a way forward and felt that I would never be happy again. I have friends who are suffering the loss of people close to them, I have friends who are celebrating- all I know is that kindness helps and we should never underestimate the power of friendship.

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Mixed emotions

It’s a strange time at the minute and one where we are coping with a range of emotions. We interred mum’s ashes this morning and said our goodbyes once again. It felt very odd, a small wooden casket, two lots of workmen a council officer and  a funeral director. Mum’s final resting place is elegant marble and bedecked with beautiful flowers – it gives us somewhere to go to remember her.

I’m still struggling though and have spent the last few weeks in a bubble not knowing how I feel. Friends have been amazing and helped me ‘through’ but I still can’t seem to grasp that mum is finally gone. I’ve been reading ‘Elizabeth is missing’ and the daughter could have been modelled on me – I got cross, I rolled my eyes, I clenched my hands when mum asked me the same question for the umpteenth time. I’m not proud of myself, I should have been more patient but dementia is relentless and pushes you to breaking point so that you can no longer relax or let yourself be you for fear of what you might say.

There was some relief when mum died – she was no longer suffering but neither were we, dementia is an illness which alters the whole family not just the sufferer.

I’m trying to remember the things mum taught me and the fact that she made me what I am today. We always had to ‘remember our manners’, politeness and kindness were important. Family was everything and you were there for one another no matter what – mum saw me through miscarriages, divorces, the death of my eldest son, house moves, job changes – no matter what she was always there – if not in person at the end of the phone.

She is coming back to me slowly and I understand (with the help of wise friends)  I can’t force this – it will happen but it’s like I have two mums – the ‘real’ one and the person I called mum for the last few years. I’m coping, I’m taking photos and pottering! I found the remnants of  a poppy field today (thanks to my lovely husband) which seemed fitting – it was windy so the photos have an element of movement which, again feels ok!

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The other emotion this weekend is joy! Complete joy as our gorgeous Tommy is one tomorrow. I know that all babies are special but he was sent for a reason. He has been my hope, my light and my saving grace this year. He is loved beyond words and so we will celebrate this weekend #TGFT (Thank goodness for Tommy)

Tommy 1  Where has that year gone?RZ1

1st July 2015

Mum died on 26th June and we have spent this week making the seemingly hundreds of arrangements. I will blog properly when I get my head together but wrote this today as i’m struggling.

Friends keep asking me how I am but the honest answer is I don’t know. Mum died last week and whilst I’m desperately trying to mourn her I’m having trouble finding her. The person we called mum for the last few years hasn’t really been mum at all. She has been a confused and frightened lady who  gradually declined to the point of not knowing who we were. She changed in mannerism, appearance and outlook. She had mood swings, phases of being angry followed by tears followed by just sleeping.
So I want to remember my ‘real mum’ the one that looked after and cared for me, the one I could phone for advice and support, the one who loved me unconditionally. But I can’t find her. At the moment the memories of the last few years are too vivid, the images from the last few days imprinted solidly on my mind. I hope in time these will fade and allow my real mum to come back but at the minute the answer to the question  ‘How are you’ is a bland one as I can’t explain I’m still looking for mum xx

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30th April Dementia Diaries update

Today has been a day of two halves. The first half was a wonderful couple of hours at a Special School talking about Kakuma Refugee camp with a group of delightful young people who are all keen to make a difference.

On the way home I called to see Mum. whilst I went to get a chair she said clearly ‘Who is that woman?’ I knew this day was coming, I knew she was deteriorating but even though you are prepared it still hurts. On returning to the room dad had his head bent and was crying. What do you do or say in these circumstances? Who do you comfort?

I’ve felt cold and shivery for the rest of the day but my wonderful family, as always, has been there for me, as have my friends. I don’t know what the future holds but I know mum won’t get better. Do we hope for a gradual decline to keep her with us for longer or hope for a release from her suffering? She spent the rest of the morning asleep and making noises – I made dad leave – there is only so long you can sit and cry. He isn’t well, he is suffering from grief and guilt – this is one hell of  a cruel disease.

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23rd – 26th April

Having spent the morning with mum – the challenge of a room full of people who are suffering from dementia listening to Meatloaf blasting out  – I felt decidedly tearful. It’s hard to not have the answers, it’s hard to reassure someone who is so confused. The twilight world that mum inhabits is hard to penetrate. She smiles at Tommy but doesn’t know who he is – she tells me off in one breath then worries I will fall down the stairs in the next!

Thankfully I spent the rest of the day with family – Ollie and Rosa love ‘baby Tommy’ (who I am sure will still be called baby Tommy by Rosa when he is 21!) and my equilibrium has been restored. The innocence of children, the joy in Tommy’s eyes all make everything ok again.

Walking him around the park allowed me to collect some dandelions to play with – there is beauty in everything – we just have to look x

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