In my last post, I admitted I did not share directly from my journal as a caregiver. As a tribute in memory of Ota, John Lindert, on the 18th anniversary of his death, I will be sharing a small part of what I wrote the day he died.
AUGUST 6, 2003
Ota died today. At first, I couldn’t believe he was gone. I mean, yes, I permitted him, and I promised to take care of Oma, I kissed him, and he gave me one back. Then I sat beside him and stroked him from knee to ankle—he was gone! No! No! Not my Ota…how can I live without him?
I wanted him back. I was ready to call anyone to bring him back. This was MY Ota! A kiss was shared after a promise, and he was gone.
NO! NO! NO! NO! I WASN’T READY! I WASN’T PREPARED!
I was burnt out after caregiving. I didn’t want him to suffer anymore. I prayed he wouldn’t suffer anymore, but once I realized he’d died…I wanted him back! Back healthy, or at least with his cancer in remission.
Selfish? Yes! But he wasn’t just my grandfather, he was my father figure, my protector, my supporter, my safety net, my source of hugs. He was my rock.
He was my safe place.
I think back to yesterday. Having pulled an all-nighter, I went home to shower, change, and pick up medications before I was to return. But Oma called and said in the short time I left that his scar had opened and there was a terrible smell. I rushed back and saw the scar from his operation had indeed opened. I didn’t know what to do. His doctors were in Cambridge, but we lived in Kitchener, and an
ambulance would take him to a local hospital, not the hospital where I was familiar with the doctors on his case. We’d have to go through all his history, only to wait and get transferred to Cambridge to do it all over again.
I called Medical Day Care at the hospital, the mainline of the hospital, and our family doctor to find any way to get Ota to the hospital in Cambridge. There was no help to be had; no one was answering at Medical Day Care, the main switchboard did not know who to transfer me to and the receptionist said our doctor was with another patient, then had a small lunch break before a full afternoon.
I could not move Ota; he was too weak to help, and no one was around to help me move him. Forget trying to get him in my car and taking him to the hospital. I kept calling Medical Day Care, and our family doctor’s office - I was desperate! Thank God for Doctor Miller who got the message from his receptionist and called me back. He gave me a phone number for a medical transfer. He knew what I was going through, as he stepped in for patients who had no family but needed help.
We got to the hospital, got admitted to an emergency, and waited. Ota was not always conscious, and I was exhausted. I was praying. I was scared. I was trying to be positive, only stepping out to call Oma to keep her updated.
Hours went by until one of the sweetest doctors came. Dr. Gudelis saw my grandfather was sleeping and said, “Looks like you could use a hug”. She gave me the biggest, deepest, tightest, longest hug that I had had for a long time. Boy, did I need and cherish that hug - thank God for that hug, thank God for her arrival. I knew she would get the ball rolling to make sure Ota was okay.
Yes, Ota died in the hospital; not what he wanted, and I do regret that, but I was glad we were there because he did not seem to suffer. He was given medication. I was there, Oma was there, as was my mother when he died peacefully.
I wish I would have had the support to allow him to die at home. I wish I would have been better prepared about what could happen and what to do.
Ota knew he was going to die. He told the nurse who checked in on him before he died not to bother with him and his dry mouth symptoms. “It's okay, I'm going to die anyway!”
“Death never takes the wise man by surprise. He is always ready to go.”- Jean de La Fontaine
Caregiving was difficult. My world became his care and health – work and my life took a back seat. Did I regret the time and effort spent? ABSOLUTELY NOT! Despite everything, I received the greatest gift and honored him; loved him as he had always loved me.
Fighting disease is anything but easy; multiple operations, impatiently waiting on results, praying, and hoping for positive news. We were informed the colon cancer diagnosis had transitioned to advanced cancer. First, the colon cancer went to his liver, then metastasized to the duodenum right by the pancreatic bile duct. If cancer went up the bile duct into the pancreas - well, it wasn’t going to be good! Metastatic Cancer is cancer that spreads and can be referred to as advanced cancer, which is the onset of palliative care or the pathway to it. I called it the diminisher of hope; once cancer is Metastatic, a cure is not considered possible, and the only hope is slowing down the growth or reducing the symptoms.
Of course, we had hoped and prayed for a miracle; for Ota to be healthy, to be cured, to win his battle with cancer, or even for it to go into remission. It was difficult to see my strong, robust grandfather’s bodyweight reduce more than half. It was difficult to hide our decreasing hope. Ota knew he was dying. He told me he was having dreams, he said he knew how he felt; he said he knew it was preparing and forewarning of what was to come. Ota never complained about the pain, though he did admit it was terrible; but said that moaning or screaming would not alleviate the pain. Ota suffered through his pain with such grace, never once did he complain. He also knew how difficult it was for us to see him suffer and not be able to do anything to help him.
As hope diminished, I prayed “God, please, if you won’t heal Ota, and you won’t take away his pain, and he won’t get better, please take him home to you! Seeing Ota in pain and being helpless to make his life better is hurting me and the family. Ota does not deserve such pain and suffering! Please make the pain stop!”
My hopes for health, healing, or stabilization were diminishing more and more each day. All I was left with is the faith that God would be compassionate and kind and end the pain.
“Life is pleasant. Death is peaceful. It’s the transition that’s troublesome” - Isaac Asimov
People are sometimes taken by surprise; some may be outraged and shocked when they hear someone with a terminal illness has decided to accept Medical Assistance in Dying (MAiD). Reactions can be based on religious beliefs, a fear of death, or a fear of someone initiating their own death. I can understand why people seek help to die. I mean, we consider it humane when animals are suffering, why would we not allow our loved ones to have this choice? I have seen the pain and suffering of someone actively dying. It is not romantic, it is not always fast, it is not glamourous…it is harsh, painful, and the furthest thing from glamourous. You lose your pride and your independence when you are sick. You need assistance to eat, to go to the bathroom, to get up and lay down because you become weak. Dying may be a part of life, but pain and suffering do not have to be.
Medical Assistance in Dying is not a decision to be taken lightly, but it is an opportunity for the dying person to have some control over the terminal illness; to live life on their terms, and die on their terms. I would have done anything so Ota would not have had to suffer. I know other caregivers and family members have said the same after living through the pain that the dying suffer. Medical Assistance in Dying is becoming more known and more accepted. More people are talking about it.
I was sitting outside at my fire pit one Saturday, just enjoying the evening, and heard my neighbors speaking about death and dying. What did they discuss? I overheard everything from funeral ideas to comments that it did not matter so much what happened after their death; just that they would not have to endure pain and suffering - not only because that would be difficult, but it would be hard to know the family suffers along with you, and that is not fair. It not only spares immense pain for the dying but also their family. It allows you to set a time and date, which means you have a deadline to say all you have to say and prepare for the moment. MAiD may not make the loss easier, but knowing a loved one did not suffer brings immense comfort.
A note from Home Hospice Association (HHA):
HHA trains Death Doulas and offers the Diana Pathway Workshop for Death Doulas who wish to support those who are seeking a medically assisted death. Death Doulas can help prepare the dying and their family for the death, whether MAiD is utilized or not. Death Cafes and other programs are provided to help people heal, cope, and realize they are not alone in having lost a loved one. No matter how death comes about, most family and friends feel there was never enough time; they were not really ready for the final goodbye.
The hope is that one day we all will be able to come together and journey along a moonlit path to pay tribute to the lives we hope to immortalize in our memories. Erika reminds us that we are all bound together, not only in our grief but also in our will to make a lasting impact on the lives of those currently coming to terms with their death. To honour those who have come and gone before us and support those who are here now, in unison under the light of the same Harvest Moon is what happens when you decide to join us for the Moonlit Memory Walk and fundraise for the many ways we provide care just as Erika has described.
This grassroots charity event that pays tribute to the lives that our loved ones lived, whilst raising funds towards essential caregiving programs and services led by Home Hospice Association is important because when (not if) the time comes that a member of our family needs HHA we want to know it is there.
The Moonlit Memory Virtual Walk takes place on Wednesday, October 20, 2021. Now is the time to register, tell our community about who you want to remember and honor, raise money and receive great gifts. Visit https://www.homehospiceassociation.com/moonlit-memory-walk and join us today.
Next week’s blog will continue telling the story of collective healing and how music connects us with those we have loved and lost. Blog Contributor and Moonlit Memory Walk Committee Chair remind us that when words are not enough, there is always music. We all benefit from having music in our lives; it only follows that music can benefit us as we die.
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