April 16/2001
Easter will always have a bitter sweet feeling for me.
Today is Easter Monday. Dad died last year on this day, although the date is different. So it is really April 24 that marks the first anniversary of the death of my father who was and remains the inspiration for the aging and caregiving work that has consumed my professional life for the past 6 years.
I went to church yesterday and the service was beautiful. The stairs leading to the alter were covered in Easter Lilies and since I sat in the first row I was able to enjoy their glorious smell. The lilies were placed there by members of the congregation who had lost a loved one. I did not realize one could do this so next year I will place lilies in remembrance of both my mother who died in 1986 and my father.
There was a special group of musicians whose music really added to the service; they included trumpets, a French horn, a trombone, tuba and tympani. As always the minister spoke most eloquently and I left the church feeling I had learned something.
I can hardly believe so many days have passed since my father's death. Every time my dog Oreo and I walk by the street where dad lived the last 3 years of his life in a long term care facility, Oreo automatically turns up towards dadšs and my heart breaks a little each time.
The past year has given me time to reflect on the care challenges I faced with my father and I find myself more and more concerned about end-of-life issues.
As a result I wrote End-of-Life Gifts: A Daughteršs Tribute to Her Father which was published in the February 2001 issue of Alzheimeršs Care Quarterly. Although the article was very difficult to write I cried all the way through it I am extremely proud of my efforts which have resulted in a permanent record of the last weeks of my fatheršs life.
I wrote:
"I have always talked openly about how difficult it was for me to care for my father, a man who demanded everything while seeming to return little. It was virtually impossible for me to talk to my dad about the pain or sadness I knew we both felt.
Even though he once admitted he was not afraid to die, I didnšt want to hear about death. I didn't let him tell me what he needed to say, what he wanted me to know. I thought there was lots of time to discuss what I did not have the courage to face. I said to myself: It's too early. We don't need to talk about death. Donšt alarm him.
I was wrong. It wasn't too early. I didn't understand vascular dementia then or how insidiously it claims its victims. I ran out of time."
And so I say these words to other caregivers: Please donšt run out of time like I did. Ask questions about the dying process so you know what to expect and how to help. Talk about death, about how you and your loved one feel and what you both want and hope for.
We are each given the tremendous gift of helping a loved one leave this life with dignity and love. Donšt sacrifice this gift because you are afraid to face the inevitable.
Resources
Alzheimeršs Care Quarterly Aspen Publishers, Inc. 1-800-638-8437
A Guide to End-of-Life Care for Seniors University of Toronto and University of Ottawa. http://www.rgp.toronto.on.ca/iddg/index.htm
Rethinking the Role of Tube Feeding in Patients with Advanced Dementia http://www.nejm.org/content/2000/0342/0003/0206.asp
Preparing for Approaching Death http://hospice-cares.com/hands/Library/pt_care/signs.html
How We Die: Reflections on Lifešs Final Chapter by Sherwin B. Nuland Vintage Books ISBN: 0-679-74244-1
Donšt Take My Grief Away From Me: How to Walk Through Grief and Learn to Live Again by Doug Manning In-Sight Books 806-364-7862 http://www.insightbooks.com
April 24/2001
My father is on my mind as I look back over the year since he died. I spent most of the day trying to put together a presentation I am giving at the Ontario Gerontology Association annual conference this Thursday; the subject is end-of-life in long term care, with reference to dementia. My absolute favourite bandwagon. I know what is in my heart and what I need to communicate to my audience but I was having a problem sorting out all my thoughts - they were coming thick and fast today as dad kept popping up in my memory.
I looked at the pictures of us taken for the cover of CARP magazine in June, 1998 and for an article in the Toronto Sun the following winter. It all seems so unreal in a way and yet when I think about the million times I visited dad and the things we did and all the agony we went through, it seems as real as yesterday.
When I looked at the pictures today I thought I would be sad but I wasn't; I know that dad's time had come and that he needed to go to a far better place, wherever that may be. I do miss my father's smile because in the last year or so that's all I was lucky enough to receive; I miss knowing he is near; I miss knowing I am the daughter of a father who loved her unconditionally. I miss knowing I was able to make such a huge difference in the life of someone I love. I miss the unexpected joys and sorrows of caring for another human being. I don't miss seeing my father a prisoner in mind and body.
Oreo and I went over to the cemetary and into the place where dad and mum's ashes sit side by side in a special case. I was shocked to see that the year of my father's death had not been engraved on the front of the case. I guess I assumed that this would happen when the ashes were enterred. This left me feeling that there was no closure around my father's death. I will call tomorrow to find out how to rectify this.
Last weekend - Easter - I was low. I was sitting on the couch listening to some beautiful music; Oreo had her head in my lap. At one point I looked down at her as she gazed up so steadily up at me. In her eyes I saw such utter love, trust and innocence that I felt like I was looking into the face of God. I was literally speechless.
I continue to be awed and perplexed by my end-of-life experience with my father. This issue is becoming more critical to me as I learn more about how badly we as a society prepare for and face death. I look forward to giving my talk on Thursday as it is often during these talks that I discover new thoughts and meanings about what has happened to me over the past 14 years with my father.
I continue to get email from caregivers facing the diagnosis of dementia in a loved one. It is a time of terror and loss for them and yet somehow I hope they come to realize as I did that deep within a demented person the soul and spirit are still there, needing to be acknowledged and loved. I now try very hard whenever I am speaking to caregivers to ensure that they hear my words of hope because I believe they are absolutely true. We can never let others tell us that 'there is no point visiting because he doesn't know you any more'. There is a point, a huge point. We just have to look a little deeper to find the spirit of the one we love. It's there and will be always.