Below you will find letters written by a daughter to her father, who is living with young onset dementia. She had written a series of letters to him on the suggestion of a therapist with whom she consulted to help her process her father’s medical prognosis and its effect on her family. These letters were never intended to be read by her father. The daughter found these letters hidden away, a little crumpled and soiled, in the early part of the summer 2022. She decided to have them published as a way to both commemorate her father, and to help others who may be dealing with a similar situation, to process their thoughts and feelings. If these letters can help one person through this difficult period, then sharing them would have been worth it.
October 2016 (19 years old)
Dear Dad,
I am writing this letter to you because it is very important to me that I share a few things. I want you to know first and most importantly that I do not blame you for anything that has happened or will happen in the future. I know that it would break your heart to see how much this disease has affected our family. I want to tell you that this is not your fault, or anyone else’s, and that I trust there is a reason bigger than us all that this is happening to our family.
I want to thank you for inspiring me with your love of knowledge and learning. Although these days politics, current events and literature are not on your mind, I will always remember the version of you that was so passionate about sharing your wisdom. I know that even though you can not tell me, you are so proud of me, and I want you to know that this is only the beginning.
It is very important to me that you know I am truly happy. It often feels like all these great things are happening in my life and you are missing them all.
As a little kid, I never would have imagined a future without you in it. It feels strange to say that because although you are physically here, the traits, tendencies and characteristics that make you the dad I grew up with have long since departed.
I want you to know that I am going to do incredible things in my lifetime and I am always going to wish you were there to see them.
I often forget that although this disease is affecting those around you – it impacts you as well. I hope that you are content and never lose your sense of humour. I know that you must feel scared and confused and for that I am truly sorry.
You are and always will be one of the most influential people in my life. I hope that if I take anything away from all of this, it is resilience and the ability to face life head on.
There are so many questions and thoughts that I have and will have in my life that I may never get the opportunity to ask you. I have an incredible support system, but no one will ever replace you. I need you to know that I will never stop loving you, and I will never blame you for missing the big moments in my life. I know that even when you are not mentally or physically present, you will always be looking over me.
Everyone tells me that the best thing I can do is imagine you at your best and remember my favourite memories with you. I have way too many memories to choose just one favourite, but those are the moments that I make a conscious effort to replay in my mind. This is the person that I will always remember you to be.
Love you forever.
October 2017 (20 years old)
Dear Dad,
Five years ago, I started writing you letters with no intention of ever sending them. These letters were never meant to be read by anyone, in fact I didn’t think I would ever be re-reading them years later.
However, as these letters resurface I am reminded of the unexpected power they had.
During a particularly challenging time after your diagnosis a therapist I was seeing suggested I begin writing letters to you, letters that you would never read. I initially disregarded this as a silly exercise, but as I began writing the emotions and thoughts came pouring out. It was so easy to put into words exactly how I was feeling and exactly what I wanted to tell you. There was no hesitation or guilt in my words because I knew you would never read these letters.
I wrote these letters to tell you all the things I need you to know, all the things that I could never say to you. These deeply personal thoughts serve as a reminder of how far we have both come in this journey.
I look back on these letters and I am transported to a time in my life when everything seemed unfair and overwhelming.
October 2018 (21 years old)
Dear Dad,
I am working very hard to deal with disappointment. I had all these great expectations for this year and it seems that nothing is working out the way it’s supposed to. I hope that one day I can look back on this and be grateful for the time I have with you but right now it is so frustrating and so disappointing.
I don’t understand why this is happening. I don’t understand why you don’t understand that this isn’t normal. It is so difficult to explain your behaviour to strangers when we are out in public. It is even more difficult to explain to my friends why you don’t work but you aren’t retired. Or why you can’t be left alone. And why mom doesn’t work because she is now your full time caretaker.
It doesn’t make sense. It isn’t fair. Dementia has such a stigma and I wish I didn’t care how our family is perceived to other people but it’s so hard when everyone else around me gets to experience growing up and becoming friends with their parents as an adult but I don’t. I will never know what it’s like. Dementia has forced me to become the adult and the decision maker in our relationship.
I know that life is unfair and it could always be worse but I want you to know that it doesn’t make this suck any less. I know that you aren’t supposed to spend life thinking about the “what ifs” but I would be lying if I said I never think about how drastically different our lives would be if you never got sick.
I imagine how incredible it would be to grow up with you and how much you would teach me. I think about all the things I would ask you, all the things I was too young to want to know before you were diagnosed. I think about all the experiences I would share with you.
I know that our relationship is no longer a typical father daughter bond, but it is changing into that of a caretaker and a patient. It is heartbreaking to see you like this, and it feels like all of the expectations I have are constantly being challenged. I am working really hard on removing my expectations with you so I can minimize the disappointment. I know that it will take time but I hope that one day I can look back and appreciate our relationship at face value.
July 2022 (25 years old)
Dear Dad,
Five years ago, I started writing you letters with no intention of ever sending them. These letters were never meant to be read by anyone, in fact I didn’t think I would ever be re-reading them years later.
However, as these letters resurface I am reminded of the unexpected power they had.
During a particularly challenging time after your diagnosis a therapist I was seeing suggested I begin writing letters to you, letters that you would never read. I initially disregarded this as a silly exercise, but as I began writing the emotions and thoughts came pouring out. It was so easy to put into words exactly how I was feeling and exactly what I wanted to tell you. There was no hesitation or guilt in my words because I knew you would never read these letters.
I wrote these letters to tell you all the things I need you to know, all the things that I could never say to you. These deeply personal thoughts serve as a reminder of how far we have both come in this journey.
I look back on these letters and I am transported to a time in my life when everything seemed unfair and overwhelming.
The author wishes to remain anonymous for this publication, and the Ontario Brain Institute thanks them for their contribution. Learn more about OBI’s work at http://braininstitute.ca.
