Hello Granny
I am not sure what my intention is in writing this or rather how I will choose to communicate this with you, but it is something I have been thinking about doing for a long time.
I understand now why they call it ‘the long goodbye’. It feels like every time I see you it is not only another day that I get to spend with you but also another reminder of how much you have faded since our last meeting.
I miss you so much gran. Although you are still ‘here’, I wish I still had you to share all my thoughts, worries and concerns. So much has changed since your diagnosis and rather than sharing in these pivotal moments with us, you watch from a locked window outside; unable to communicate.
I wish that I still had the opportunity to do all the things we use to do together. Driving around the countryside in your little automatic Yaris, looking at shops and sitting drinking tea and eating cakes. I still remember our conversation in Snookies when we talked about painful friendships and regrets of the pass. You complimented me on my ‘wise head’ and said how much you appreciated the relationship we had.
You always were so easy to talk to, when it felt too difficult to share things with mum and dad, you were always there. I worry about things now, granny and struggle to find who I want to offload these thoughts onto. Lots of things are changing around me and sometimes I find it all so overwhelming. I worry about getting left behind whilst so many people I know excel so quickly, that I struggle to keep up.
Lots of bad things have happened recently and I have experienced death of somebody close to me who was taken far too young. I have so many questions that I know only you would understand and wish you could tell me your pearls of wisdom to help me through.
I take comfort in a different perspective of this disease that has changed so much. Like the look on your face when mum, your daughter, comes to visit you and you touch her face with complete love in your eyes. How everyday you must wake and everything is like a new adventure. New faces, new tastes and new smells; I imagine the complete amazement of eating chocolate for the first time again.
My constant strength through all this is our family. Mum has been absolutely amazing right from the beginning. She in turn is supported by Dad and together they protect and support us all through your journey. The strength and love of a human being is something that constantly amazes me and even though you have changed so much, you still remain the kind, loving and friendly lady I know.
It has of course been a very hard and emotional journey for us all; including you. I know you were scared and frustrated at the beginning and I think that was the hardest bit to experience. As you fell a little deeper and slipped from a terrifying sense of a lost grasp of normality to a tranquil and inquisitive world, our roles and feelings changed also.
I feel guilty for not visiting you as much as I should as I struggle with the idea of being there, as a stranger, but also company for you and, on the other hand, the overwhelming sense of ‘the fear’. A normal emotion that many family, friends and strangers have told me they too have battled with. The fear of the unknown every time I come to visit you. Will you be upset? Will you be having a rare tantrum? Will you recognise us? Which parts of you have faded further.
I had never really envisaged you not being at what are often described as ‘monumental occasions’ in a person’s life. When Charlotte went to try on her wedding dress, it felt wrong not having you there telling her how beautiful she looked and passing out the tissues. To think of you not being there at the wedding or indeed for any of those occasions, is the hardest thing. It is not the same emptiness that one might feel in death but that you are not there but still with us; it is an emotion we all struggle with.
It is difficult to say and even for some of those who have not experienced such a diseaseto fathom, but I pray that you leave us before the disease destroys you completely. What kind of life is it to spend in a bed all day unable to eat, swallow or even breath unaided. This is not the way you should go; wasting away in a bed.
I know that you don’t remember me any more. That you cannot remember French plaiting my hair, or letting me lick the bowl or how you use to comfort me when I was upset by some teenage drama but, I remember all these things. The fact that you still like me and ask me to come and visit you again even though, to you, I am but a stranger is, to me, a little bit of you that is still alive. A kindness and fair opinion of everybody.
We are still able to laugh with you about silly things. Your character is still alive in the way you communicate with us. I love speaking with mum about how you are doing and we often laugh about the funny things you do and say. Telling the mental health nurse to ‘sod off’ when she tried to wake you; now I know where I get that from!
Perhaps I will read this to you on my next visit or maybe I will save it to read to you once you have gone. I want you to know that I love you lots and think about you everyday. I will continue to visit you, listen to Fred Astaire with you and look at your photos. For however much longer I have with you, I will continue to remain your ever loving granddaughter.
All my love,
Hannah xoxo
