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A letter to Mum

Anne-Marie Heeney

23-year-old Anne-Marie lives with her mum, Bernadette, who has frontotemporal dementia. She helps care for her, as she slowly loses the ability to communicate, carry out everyday tasks and even recognise her family. Here, Anne-Marie tells her mum what she wishes she could. If only she understood.

I found a pile of your lists, Mum. They’re all from the same Christmas period. One list just states the presents and who they were for. Another details who they would be from (for when you wrote the gift tags), and where you were keeping them. A third list helped you keep track of which ones you’d wrapped.

Bernadette Heeney in 2011

Bernadette Heeney in 2011

There are also lists for Christmas cards (one for ‘written’ and another for ‘delivered’) and one for what presents we’d got from other people so we could write thank you cards.

Your list writing used to drive us mad. Those little post-it notes were everywhere in the house, the car, your handbag.

But seeing them now, I smile. You haven’t written a list for a long time and I can’t describe how much it means to just see your handwriting again.

You’re sitting next to me now, watching me type. You look almost the same as you always did. But you – the whole ‘you’ who wrote all those lists, talked for hours on the phone, and ate a slice of lemon drizzle cake with her Irish coffee every evening – you haven’t been here for a long time.

It took us a while to realise. You started being late for work, repeating yourself, driving erratically. You once called me four times in 20 minutes to tell me that you’d put the washing machine on. (I’m sorry for shouting at you in that last call – I had university work coming out of my ears and I realise now that you weren’t ignoring what I was saying, you genuinely couldn’t remember calling me.)

You were diagnosed in March 2013, a few weeks after your 50th birthday, with frontotemporal dementia.

It’s been hard to get used to, taking you to the bathroom, getting you dressed, keeping an eye on you while you eat. It hurt when we noticed you’d stopped talking completely.

It’s cruel and unfair that you’re being taken away from us, a little more every day, especially because it feels like we barely had a chance to get to know you properly. There are so many questions I wish I could ask you, so many things I’d like to know about your life and that I want you to know about mine. The chance to have those conversations has been taken away from us.

Anne-Marie, her sister Olivia and their mum in 2014

Anne-Marie, her sister Olivia and their mum in 2014

But we’re making sure we enjoy all the time we have together. We haven’t let dementia stop you or us from having a good life: we just have to take extra time planning everything. We’ve been to Florida, New York and Washington, and you go to Ireland a few times a year. You walk to the shops every day, go for meals with your friends; you eat more chocolate éclairs than you probably should. You saw me graduate, you were at Olivia’s 18th birthday, and you and Dad celebrated your 25th wedding anniversary last year.

Dementia might stop you enjoying or appreciating those moments as much as you should. It can stop your smile being as bright and full as it used to be. It can stop you writing lists, making yourself a coffee, using the phone. It can even stop you recognising us, your husband and daughters.

But dementia can’t stop us helping you to enjoy your life while we still can.

You see, dementia can’t change the fact that we love you, and that we are so lucky to have been loved by you in return. That’s what keeps us smiling.

9 Responses to A letter to Mum

  1. Sandra 5 May 2016 at 4:13 pm #

    Oh god this made me cry !
    This beautiful lady who I was blessed to call my friend! How proud when she won (again) employee of the month for her friendly manner with her customers at work!
    She loved her family and was so proud of you all-our thoughts and prayers are with you.
    That was simply a stunning piece of writing and I type this badly with tears streaming down my eyes remembering the lady who laughed with me when I described trying to smother factor 50 sun cream on you girls at the Safari park and who was always there if you needed a friend!!!
    Love to you all xx

  2. Clariece fear 5 May 2016 at 7:08 pm #

    I love this it’s so emotional but your heart is in this writing and we can see that also you can see pain but the rest is how happy you are to be with her and will be with in her heart and every one who loves her. She is my aunt and I care about her all the time seeing her lose her self every Sunday. when I see her hurts me and in someways scare me but I know that you and your family keeps her safe and that’s what matters as well as the love in are hearts will keep us link with hers. I hope to see you and aunt soon xxxxx

  3. Charlotte 6 May 2016 at 1:13 pm #

    Reading this had me in tears. My mum is 59 with the same Dementia. I’m 25 so this letter is so close to home for me. 9 years my mum has had it for and it breaks my heart knowing that she won’t see me “grow up” and she won’t be able to see my little boy and girl grow. But like you we take one day at a time and enjoy the times we have together and I know I’m lucky to have her.

    Sending love to you and your family
    Xxx

  4. Deborah Thelwell 6 May 2016 at 3:23 pm #

    So sorry for your ongoing loss. My husband died of FTD and early Alzheimer’s in 2012, he was 57. My first thought was- perhaps the lists were all part of the beginnings of her illness. Her way of controlling what was going on her life.
    Anyway, I feel for you and your family. My sons were 23 and 24 when their dad was diagnosed. I know that the five years it took for FTD to travel its course were painful for them, so I understand a little of what it’s like for you.
    There is a Facebook group for children of those with FTD that you may find helpful, even if just to vent. I know it’s not all smiles and happy social occasions and things will get rougher as time goes by. I wish you luck with your studies. You sound like a wonderful daughter who is destined for great things.

  5. Liz White 6 May 2016 at 3:29 pm #

    This is lovely. Cherish every moment you have with your Mum. My Mum had Alzheimer’s for 11 years. The last few years she didn’t recognise me that is the bit that breaks my heart. She used to ask the same questions over and over and it’s very easy to be cross but try not too. dementia and Alzheimer’s are horrible illnesses and I only hope one day they find a cure. I hope you have family around you for support because it is a very difficult thing to cope with. Sending you my best wishes. Liz White

  6. cala russell 6 May 2016 at 5:24 pm #

    Oh my, what an extraordinary family you are. I am inspired by your strength. I am currently dealing with my dads cancer having just got beyond a few health issues of my own. He is 72 this year and has overcome heart disease, heart surgery, kidney surgery, prostate surgery and a stroke. My Mum is 69 this year and has always had Dad to do all the serious stuff. I know they are getting older and time for us all is running out. I’ve had the most glorious life with them both. I’ve done my best to repay their love by making sure they have as many new experiences as I possibly can. Illness is now an everyday thing for them both and it means that, more and more, I am shouldering the burden of making sure they have everything they need. I get cross with they repeat themselves or cant remember what I said just a few hours ago but reading your story makes me realise that sweating the small stuff is a waste of precious time. I applaud you. You are an inspiration. xxx

  7. Lisa Skinner 6 May 2016 at 6:56 pm #

    Anne-Marie – the letter to your mum is so beautiful! It brought tears to my eyes for you and your family. I know only too well the anguish of seeing someone you love so dearly disappear in front of your eyes. I’ve personally watched seven of my family members lose themselves to dementia. And reading your letter helped me reflect back to things about each one of them that was so unique and special, so thank you for that. I love how you write about the quality of her life in spite of her illness and I whole heartedly agree that loved ones can provide that in the little things they do for the loved one inflicted with dementia. Please know that she may not remember the moment, the event, or the activity, but the feeling of joy she gets from any positive experiences she has will linger on for hours, and that’s giving her quality of life that people cannot even imagine. My best to you. Lisa Skinner, author of “Not All Who Wander Need Be Lost” Stories of hope for families facing Azheimer’s and Dementia.

  8. Mike 6 May 2016 at 10:27 pm #

    Ann-Marie , having endured this dredful illness with both parents your blog brought back so many memories to me of the stages we went through and the moments we cherished and lived for.
    Enjoy every single moment that you can and keep looking for that glint in your mums eye which tells you she is ok.
    Take care

  9. Jean muir 26 May 2016 at 12:21 pm #

    I can identify with all of this-v v frightened. My GP said I cannot be referred to the memory clinic at Argyll and Clyde health board. It’s frontal stuff I recognise. This morning I forgot I put something on the cooker be coz I was distracted by a phone call. It’s a lonely place.

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