Sunday, April 05, 2009


Hello all,

I have returned from the Maritimes where I spent the past 3 weeks with my family.  Sadly, my father passed away on March 20th at 9:55 am.  My mother and I were by his side, along with some other family.  

I arrived home at 6:30pm on Wednesday and he died about 40 hours later on Friday morning.  When I arrived on Wednesday he was awake but not talking and they were giving him morphine.  He knew me when I came in the room and followed me with his eyes.  We sat vigil by his bedside for most of the next 40 hours, my mother and I and the extended family.  It is hard watching someone die.  He never said anything more and just looked around.  His neurological disease prevented him from moving any more but he could still grasp our hands and raise his eyebrows.  On Thursday he smiled at one of his good friends.

He suffered from a cerebellar disorder called olivopontocerebellar atrophy, which destroys the cerebellum.  He was diagnosed in 1993 at the age of 43.  He died 16 years later at the age of 58 (yes, my parents are very young - my mother was 18 when I was born!).

Over the years, he lost his balance first, and went from cane to walker to wheelchair.  He lost fine motor skills and developed slurred and scanning speech.  Later, he developed incontinence and tremors in the arms and then swallowing difficulties.  For the past 18 months he has been in a nursing home since he required full-time care and could no longer walk, bathe himself, or get into and out of bed.  He was unable to move in bed and could not even adjust his pillow.  The disease destroyed the ability to coordinate movement and the most he could do was reach for things and really not feed himself very well.  

In the last few years, he also had frontal lobe issues accompanying the cerebellar disorder, so he suffered from anger and disinhibition at times.  Medications helped control his moods and minimize outbursts.  In the last week of his life, he still knew Mom but would no longer eat. He always ate for Mom, if not the staff, but in the end, he would not even eat for her.  His last full meal was about 10 days before his death, which Mom fed to him.

This was a horrible disease, but he persisted to go-go-go and never gave up.  He was always positive and never languished in self-pity.  But in the last few months, Mom could see that he had lost his will to live.  We were just thankful that he did not lose his ability to swallow sooner as it would have meant years on a feeding tube, as the disease progressed and made him into a frozen body.  Instead, he just stopped eating while he still had some movement.  He stopped talking and in the last week seemed to shut down and begin to die.

Dad was a real character.  We had a very tumultuous life as he was an alcoholic with a bad temper. But he was also a very peaceful, happy person at times.  He was good-natured with many people and would give you the shirt off his back.  He was a very hard worker and devoted to his career and hobbies (salmon fishing mostly, and cheering for the Toronto Maple Leafs).   He was a big supporter of me and always was very proud of me.  I got a strong work ethic from him and also a lot of humility.  Dad was very happy with life and enjoyed living and did not seem to want for much.  He was always happy with their house in the country and all they had and never seemed to want for anything.

In the last few years, as primary caregiver, my mother and he mended a lot of their earlier struggles and became good friends.  My mother talks about the gift of illness, as it gave her an opportunity to have a new, loving relationship with my father that he had made difficult before.

He was a complicated person, and our relationships with him were complicated.  I think it is often the case with an alcoholic parent.  You love them and you hate them, and you see a side of them that others do not see.  I have many fond memories and also many terrible ones.  My heart pains because of the way he died, and because of what could have been, and because of all the goodness he possessed too.  Dad loved to cook Sunday breakfast, fish salmon, work in the yard, watch hockey, and be outside.  He was always tanned by May.  He loved his chainsaw and the simple country life.  He helped Mom make preserves and didn't mind helping around the house.  Despite everything, he had many wonderful qualities and a great sense of humour.  We were very close when I was a child and I followed him everywhere.

I will miss him terribly.  It is still a shock.  It is so strange to watch a death.  One wonders what is really on the other side.  In the last moments of his life, he looked away from us and towards the ceiling and seemed suddenly to become very peaceful.  We asked him what he saw on the other side, we asked him if he saw his mother and father and brothers who had passed.  I believe he did.  I hope he is with them now in heaven.

And I also hope that my mother can heal and enjoy her life now.  She has worked full-time and been sole caregiver for him for 16 years.  In the last two years, she was at the nursing home several times a week and put her own life on hold for far too long.  She was totally devoted to his care and advocacy.  Caregiving is selfless and exhausting.  I am so thankful she was there to give him a dignified life and death, to be his supporter in sickness and in health.  She went far beyond the call of duty and is a wonderful, compassionate, and caring woman.  She is a saint in my book.  I only hope we all have such a blessed companion in our final days.

I think Mom is a bit lost now, and is struggling with her identity, as she is no longer needed full-time to care for another.  I pray she will find peace and take back her life and enjoy what comes to her.  I hope she is surrounded by beauty and peace and love forever.  She has earned it.

I think both she and Dad were given the gift of each other.  I was given the same gift.  Sometimes I am not clear on the reasons, but know that my life has been very rich indeed.


  1. Hello Terri, and welcome back.

    Being there for your dad (and your mom) was the best, most beautiful thing you could have done. In the difficult days to come, the fact that you helped see him out of this world will give you comfort, even when it feels like that is a scarce commodity indeed.

    I am sorry for your loss and wish I had some brilliant advice that would make it better. I will say this: take it easy on yourself. The only thing you need to do right now is live through this. And you will. It's a matter of one day, one hour, one breath at a time.

    I am thinking of you and your wonderful mother.


  2. Dearest Terri

    My heart goes out to you at this difficult time. Your post was very touching.

    Thinking of you.

  3. I am so sorry for your loss. My heart goes out to you.

    xo - AnNicole

  4. Welcome back, Terri.

    So sorry for your loss. It's hard to imagine losing a parent. I'm glad you were able to say goodbye to your father in person. I'm sure the days and months ahead will be difficult - you'll be in my thoughts and prayers.

  5. Hi Terri,

    I am so deeply sorry to hear the sad news.
    I will say a prayer today especially for you and your family.

    With Love,

  6. Terri, you have been missed.

    I am sorry for your loss - and 58 is such a short life in this day and age. My mother was only 57 when she died, and I felt many of the same emotions that you are feeling now.

    As time has passed (it has been 8 1/2 years) the happy and fond memories are the ones that are the strongest, and I have come to appreciate my mother so much more than I ever did when she was alive. I wish I could have appreciated her more when she was alive, but having my own children has really deepened my understanding of her quiet struggles.

    The gift of illness is such an apt way to express some of the bonds that occur when caring for someone who is ill. My own parents divorced after over 25 years of marriage, as my mother was fed up with my father's self centeredness, but my father never moved out (just to the guest room), and he was truly her rock when she went through two years of terminal cancer. They ended up remarrying 18 months before she died - I never really considered them divorced.

    I hope for healing for you and your mother. Thank you for sharing your story with us; it sounds like you are at peace, and it is quite a life experience to be with someone who was there when you were born (although, in 1970, sometimes fathers were not in the room - things have changed). You will be in my prayers.

  7. Terri - I am sorry to hear your news. From what you have written it seems that your father took great comfort from all of you who were there. I hope your memories of him will be a source of solace to you and your mom. Thinking of you - Michele

  8. Dear Terri,
    I have been thinking a lot of you these last weeks and today I decided to write you an e-mail but then I saw that you had posted on your blog. I am so sorry for your lost! Your father was still quite a young man and he should have had a lot of years still ahead of him if he had not got ill. I guess that is very hard to accept both for you and your mother.
    Grief and mourning are part of life but it is very difficult to manage when you meet with it. It will take time to get through it and a small part of you will never heal again. But it seems that you and your father had a wonderful relationship in spite of his problems and the good times are the memories you will keep in your heart.

  9. May you and your mother know much comfort in this grieving season, Terri. I agree with you that your precious mom is a saint. And you, you have done your father proud with your tribute capturing all aspects of his personality so well. We humans are such complicated creatures.

  10. Terri, I am sorry to read of your thing in your post struck me...that your Mom gave your Dad a dignified life and death...that is so wonderful...many times dignity prayers are with you

  11. Terri, my heartfelt sympathy to you and your family at this very sad and difficult time. God bless.

  12. I offer my prayers for your mother and family. I do hope she will find her new place in life and have much joy.
    This post was especially touching and one of your best. You write beautifully and from the heart. Thank you for sharing with us.

  13. Terri,
    I am so sad to hear of the passing of your father and the emotional rollercoaster ride you have taken and will continue to take as you grieve and heal. Your tribute to your dad (and mum) is so heartfelt and wonderful...I think your dad would be so touched by your sentiments.

    Please know I am thinking of you and so admire how gracefully you have shouldered this loss and expressed your feelings as a loving daughter. I, too, hope your mum can find her way with her new life, and find happiness with time.

    Much love,

  14. I am so sorry for your loss Terri. Continue to be gentle with yourself.

  15. Anonymous8:43 pm

    I'm so sorry to read about your father's death. You had a wonderful way of describing his personality, and your relationship with him -you really brought him to life.


  16. Hi Terri
    I am sitting here with tears in my eyes. What a beautiful post you have written - a tribute to you parents. My heart goes out to you Terri. What you wrote brought back so many memories for me - my dad didn't eat or drink for the last twelve days of his life, and we just sat there, stroked his hands and watched his life slowly ebb away. So hard to see my strong, vital father succumb, but like you, I hope that my father has found peace.
    My mum felt lost too after dad died - three years of daily visits to the nursing home to feed dad his lunch and his dinner left her with not much else. But she has lots of good friends around her who love her, and she now has a new man in her life - an old friend of my dad's. I'm sure your mum will find her feet and a new and happy phase of her life soon.
    All the best to you Terri, thinking of you across the seas.
    Catherine xx

  17. Anonymous5:20 am

    Dear Terri,

    I just stumbled onto your blog and read your entry about your Father passing.

    I recently lost my Mother after a brief illness and you have helped me look at her death from a different perspective. It is never easy watching a loved one die.

    But I am thankful I was able to have wonderful chats with her and to know how much she loved me.

    My prayers are with you and your family.


  18. Terri,
    I am so sorry. That was a really beautiful post. I will keep your family in my prayers.

  19. I am so sorry for your loss. My heart is with you...

  20. Welcome home, Terri. What a beautiful tribute again to your Dad. So sorry for your loss.

  21. Terri, I am so sorry for your loss. I was meant to read your post. I had a violent, alcoholic father (still alive, still an alcoholic at 72, but kept at a distance) and had convinced myself that I had not one happy memory of my terribly sad childhood. To read of your love for your father and happy memories, despite his alcoholism, has made me realise that I have to look deeper (much deeper) into my childhood to find some (or even one!) of those memories, like the ones you treasure. My parents did not stay together like yours did. Your Mum is an angel. I hopes she find peace and happiness. Thank you for sharing your journey, through this sad and difficult time. A-M xx

  22. Terri,

    A huge hug to you right now. My dad has similar bipolar/ alcoholic issues and I do understand what it feels like to love & hate someone more than anything in the world at the same time... I also can imagine how shocked you are & how much you are missing him. I hope you're doing okay & just know that we're all here for you.

  23. Terri, it is good to have you back. I have thought of you often and they have been beautiful thoughts indeed. My latest blog is for you. Much love. A

  24. what a beautiful tribute to your father. my thoughts are with you and your family as you deal with this loss....

  25. Anonymous4:53 pm

    I am sorry for your loss but it was a blessing you were able to be there. Take care and God Bless..Sandra

  26. Anonymous8:06 pm


    I am deeply sorry for the loss of your dad. I am sending stregnth and peace to you and your mom....
    be well.


  27. Hi Terri, welcome back again.
    Your post was so touching and it is indeed very hard and strange to see death. I find it really one of life's mysteries. I am also sure there is more after death, we are more then our bodies...
    I wish you so much strenght for this coming time and also good memories, and a shoulder to cry on when you need it.

  28. What a beautiful post and a tribute to both your mom and dad....I like that comment about the gift of illness. My sister shared that with her husband before he died. My dad too was an alcholic, but I did not get to know him as you did your. I do not have those good/bad memories. God Bless you

  29. Hi Terri
    I am so sorry to hear about your loss. My thoughts are with you.
    Kindest Regards

  30. Dear Terri,

    I'm so sorry to hear about your loss. This is a very brave post you've written! I know what it's like losing a parent - even though it sounds like you've had a much more turbulent relationship with your dad than I've ever experienced... Beside the feeling of loss and grief, one feels sort of lost when a loved one passes away, so it's good that you have your mother and your hubby. And I'm sure your mother feels lucky to have you as well!
    Being there with your father when he passed away must have been very strange, but I'm sure it's going to help you in your healing process.
    Thinking about you.

  31. Oh Terri, I am so sad to hear about your loss!! But I am glad you were able to be there by his side with your mother, at his last moment. You seem such a close family and it is terrible that you are going through this. My heart goes out to you, sending all my love and wish you really well in this difficult time. Take really good care of each other!!

    Kiss and hug, Aina

  32. Hi Terry, I'm late on this as I have been so behind in blogging but I am so very sorry for your loss. Losing a loved one is never easy and it changes people. Its nice that you were with him in his last days. I dont have any wonderful words of advice so I wont try. My heart goes out to you in this hard time. xox-Lindsay

  33. Hi Terri,

    I'm so sorry he passed away :( I am really happy that you got to spend time with him before he passed away. I am thinking about you and your mom.

    Big hugs to you Terri.


  34. He was always a great smiler and to think of him, that's immediately what comes to mind. He always knew me, always asked of Ang, always was kind. Angela was right... she nailed it head on. I wish I were close enough to give you a good hug. I am home in a week and a half and have full intentions to look your mom up... I'll bring Ava to visit... she is fresh air - always in motion, making you want to open your door for more... I wished I had named her Joy because that's what she is. Just as I am sure you were to your dad. :) We're expecting another one in November, which should be interesting. Have a wonderful week... cry lots, sleep extra, eat what you need and remember to keep breathing in and out. Much love, andrea :)

  35. Terri... I haven't been here in awhile to visit your delightful site... I am so sorry to hear about your loss. Losing a parent is just never easy. I appreciate your insightful look into your dad and my prayers are with you and your family!!