I needed to write about it

Discussion in 'I care for a person with dementia' started by Pebs, Mar 22, 2015.

  1. Pebs

    Pebs Registered User

    Mar 22, 2015
    I don't know why I wrote this down but essentially it's a story of my last year. Sorry it's not advice or anything like that, I hope you don't mind because it's long. It starts last September:

    We are rushing home from Cornwall. Dad has been sectioned. Looking back, we stumbled through summer, inexorably creeping nearer to the edge of our cliff. Normality so precariously balanced but not knowing it. Freefalling emotionally. I feel overwhelmed by fear and sadness.

    Months of visits to the hospital, always wary of what mood he is in. I read his scribbled notes and tidy his stash of oddities. Important nothings and endless obsessions. He’s saved a stone and a secret note in his slipper. My heart is breaking for what he has become. He accuses Mum. He despises us. His venom cuts to the heart. I can’t reason with him. I’m angry, and then I feel selfish and small. I look at the top of Mum’s grey hair as she bravely copes. I love her so much.

    I look at my reflection. I’m scared of the future now and search for my fate etched in my face, but I can’t see it. I long for my light-hearted sunshine days. I miss my old Dad. New Dad has bipolar and dementia. New Dad inhabits a strange reality. New Dad has pale and distant eyes.

    People ask me “how’s your Dad?” “He’s fine. You know”. I search for an amusing anecdote to avoid the uncomfortable. I know they are being nice, but I can see their apprehension. I feel so isolated. I turn to my husband for advice and support. I’m lucky. I search eagerly for clues in the anonymous chat room voices reaching out into the void, sharing comfort and knowledge, once avoided now so eagerly absorbed.

    Dad is finally going into a home. Long meetings, people talking in capital letters, confused because we don’t know the process. But I allow myself to be optimistic. Please let him be happy. I hope with all my heart. First day and I meet Dick who is waiting to catch a train, my heart smiles. I watch the carers, grateful we are not alone. We buy a TV and make plans for his room. I wish so much my strong intelligent Dad could understand.

    Dad’s not settled, but we’ve learned the rules. Say the right things. Agree. Avoid. Distract. Be bright and breezy. Don’t take it to heart. We leave, less tattered as the months roll on but still damaged and weary. On the way home we talk about the weather. Winter is turning to spring. Mum nearly finished the crossword. We lock our deepest feelings away. Sad. Frustrated. Wretched. Guilty.

    This last year a tsunami of emotions engulfed us temporarily in its madness. Scraps of old life scattered wide, new horizons formed. I still cry for what was, but I find smiles hidden in extraordinary places. I feel tenderness for my poor dear difficult Dad who is never far from my thoughts and can’t help what happened to him. We will enjoy spring as it bursts into summer, a long year will almost be gone. We must begin living again despite our long goodbye.
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Hi Pebs and welcome to TP.

    Getting it down in words is good. I kept a daily record using Microsoft word. When I looked back at the 7 years of daily notes I wondered how either of us survived the journey. Lots of it I had forgotten or more likely, blotted out. I stopped posting when my husband went into his nursing home nearly three years ago.

    You certainly have experienced a lot this past year but hopefully now with the nicer side of caring in your grasp you will start to experience life not quite as it was but better than it has been this last twelve months.

    I have found this forum a life saver through our 10 years with dementia being part of our life. I went from feeling so alone with a husband with early onset dementia to being part of a big, friendly community who understood only too well what We were going through.

    Look forward to you joining us,

    Take care,

  3. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    You express things so well, with such flair in your creative writing, it is like poetry reading it! I empathise with you, I know what it is like, I feel it too
    and you are correct it is a long good bye
    and it is not fair
  4. Stanleigh

    Stanleigh Registered User

    Jun 13, 2014
    You write so well what we all know. I have travelled the same journey, but there is no map for this one. I have found comfort in the knowledge my dad is safe,warm and well fed now he lives in a 'care home'....though me and my husband do most of the caring. Live your life well while you can, you never know what life will throw at us.

    Sent from my iPad using Talking Point
  5. Lady in blue

    Lady in blue Registered User

    Mar 6, 2015
    I found writing a diary of events and feelings particularly during the early days of Mums AD helped massively for me.
    I don't write in it much at all now that she is in the advanced stages of this very cruel disease but reading through my words from years ago will always make me cry but smile also.
  6. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    I'm the same.....I used to write it all down when it was new to me. Now, I find it unbearable.....I have a feeling that the worst aspects of mum's condition will never be recorded by me, it's just all too depressing.....xx
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Pebs, beautifully written and I know that many more than me can relate to the 'tsunami of emotions'. How eloquently put.
  8. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    Pebs you write so eloquently, and it is indeed a ‘tsunami of emotions’ with which many of us can identify, and feel your pain.

    It does help to write it as it is happening and I hope you will continue to write here, and find some release and comfort doing so, and from the very many understanding, caring people on TP who do truly understand.

    For me finding TP some number of years after we had lived with dementia in our home was a lifeline. How you describe your much loved Dad is similar to how my husband was. It continues to be a lifeline now that my husband has been in a care home for almost four years. I hope TP helps you too.

    Loo xxx
  9. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    This is a beautiful piece of writing and so obviously written from the heart. It encapsulates all your feelings without getting bogged down with the detail behind it. I felt incredibly moved reading it. Thank you for sharing, and I send you, your mum and your dear dad my very best wishes.
  10. angecmc

    angecmc Registered User

    Dec 25, 2012
    A wonderfully written account of a tumultuous year. Xx

  11. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    Made me cry, bits of this is my life
  12. Mango

    Mango Registered User

    Mar 16, 2014
    New Zealand
    all so true..

    This bit, especially, "Dad’s not settled, but we’ve learned the rules. Say the right things. Agree. Avoid. Distract. Be bright and breezy. Don’t take it to heart. "

    I have the same rules when coping with my Mum. And I am getting better at following them.

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