My father died on Easter Monday April 24, 2000. According to my friend Mimi dad’s timing was good – that God picked him up on the way through.

I had to smile but deep down I was filled with sorrow and regret. Our 14 – year journey together toward the end of his life was hard on both dad and I. He demanded so much, we fought too often. As he became weaker I felt guiltier.

My father’s death could have been easier for both of us. Let me go back and explain why.

Ten years ago our family doctor told me hell for dad would be the inability to dominate everything and everyone around him. That’s exactly what happened. Severe spinal arthritis left my father unable to walk; vascular disease and resulting dementia robbed him of the ability to talk, swallow and ultimately to think. I was forced to move him to a nursing home. The only thing familiar to my father was me. Surprisingly he didn’t complain and I struggled to make sense of it all.

One winter morning my dog Oreo and I walked over to see dad; his physician was on the floor. I expressed concern about dad’s lack of responsiveness, a condition that came and went. What could I do? The doctor looked up at me, gave me a few words of explanation and then dropped the bomb. “Basically,” he said, “Your father is palliative.”

The word palliative filled me with shock, then fear. Why did he say palliative? To me palliative meant lying in bed, with death imminent. My father wasn’t dying. Look at him I wanted to shout…he was up in his wheelchair, eating, going outside. How can you tell me he’s dying?

And if he is dying, why aren’t you talking to me about it? Why aren’t we preparing for it?

I should have known better. Dad was almost 92; he was failing. Even I could see that. He had fooled us a few times about death. Twice the professionals said he was going to die; twice he rallied and kept going. Most of the time now he didn’t know me but I was sure something deep inside enabled him to make a connection between me – my face, my voice – that which was familiar, comforting and secure.

In spite of his worsening condition I had become accustomed to having my father around as he had been for all my 53 years. I fell into the habit of assuming he would live forever – always nearby for me to visit, to care for, to love and worry over.

However the sensible part of me understood that I had to make a plan for the inevitable. Since I was traveling a lot I requested that dad not be transferred to a hospital should something happen in my absence. I wanted him to stay in familiar surroundings. The nursing home had a palliative care team and I was assured that they could look after his needs until my return. I made sure they understood that there were to be no heroic measures and no feeding tube. And that was the end of the conversation. Looking back I now realize that it should have been just the beginning.

Months passed and I managed to ignore the fact that dad was palliative. Nobody talked about it so I didn’t think about it. Dad would lose ground then regain it as he had done so many times. He was losing weight in spite of all the extras I bought for him – cakes, pudding, ice cream. But his companion and I continued on as usual, taking him out in his wheelchair when the weather permitted, giving him massages, cutting his hair as I had done for so many years. It seemed to me dad was holding his own.

My father had always gone to church. When we were growing up he would go by himself if no-one else wanted to go with him. He never talked about religion or spirituality. He just went to church. The facility where he lived his last 3 years was within walking distance of the church where he married my mother 60 years ago. This became our church. When I learned there was a senior’s worship program, we began to attend these out-reach services held just before Thanksgiving, Christmas and Easter.

Dad always came alive when I mentioned we were going to church. We sat front row centre so he could see everything. At first he was still able to sing a few of the old hymns I had grown up with. Without fail tears would fill my eyes and my heart as dad struggled to get the words out. Gradually he became unable to do anything but lift his head and occasionally watch the minister.

I was never sure what my father could hear or understand but he always cried in church. Did he somehow realize what had happened to him? Did being in church remind him of whom he used to be? I didn’t know the answers to these questions but one thing I did know: going to church somehow touched my father’s soul in a way nothing else could. And it started to touch me.

I began to relate to my father in a different way, on a different level. I brought my Bible with me on visits, the Bible he had given me when I was 12. The Bible I had hardly ever opened. I started with the Gospel of St. John and the Easter Story. I read hymns and psalms, especially the ones I knew and had grown to love. I began to understand what walking through the valley of the shadow of death meant. I was walking there with my father and somehow he was leading me without words to a place where both of us could find comfort.

On April I4 2000 dad became very congested and stopped eating. I thought he had the flu again. On the 16th my sister arrived for a brief visit; it looked as if dad would not survive the weekend. He was on oxygen and unresponsive. I sat and talked to him about anything I could think of so he would know he was not alone.

Staff drifted in and out. The charge nurse came in; she told me dad could die that night. I was stunned; how could this happen so quickly? Why hadn’t the doctor said anything? I picked up my Bible and started to read the psalms but I was crying too much. At one point dad opened his eyes. As I got up to hug him he actually raised his arm and put it around me. He had not done that for a year. I cried even harder. I realized later that my father was saying goodbye.

His condition worsened over the following week. He never really came back. I alternated between despair and anger. Please don’t take him yet I prayed – I am not ready.

The next Saturday things suddenly worsened. Fortunately dad’s doctor was on call. He examined dad briefly and asked me to follow him out of the room. I was very upset about dad’s difficult breathing; he suggested morphine to ease the discomfort. Anything I said; just make it easier.

The doctor then disappeared. I never had a chance to ask the questions that had me in a panic; what do I do now? Is dad suffering? How do I know when he is ready to die?

My friend Mimi stayed with me that afternoon. Hers was the last support I would receive. I sat alone with dad the rest of that day. No-one from the palliative care team came by. No family members were present. I felt like dad and I were on an island floating toward a place I was terrified to reach.

Things continued to frustrate me. Dad wasn’t getting his morphine shot on time. I was frightened. Nobody told me what to expect as I watched my father die. What if I did something wrong? What if I fell apart?

I walked home for a brief break and went to my computer for answers. I finally found a small North Florida hospice site that listed in plain language the signs and symptoms of approaching death. Tears poured down my face as I read about how the body of the dying person begins to shut down; how the spirit begins the final process of release from the body in readiness for the next dimension of life. I began to understand what I had already witnessed in my father – the change in skin colour and temperature, the changes in his breathing. The words were simple and beautiful. They comforted me as no human had done.

I returned to my father’s bedside feeling like I could cope. I gently laid cool cloths on his burning forehead; the oxygen machine was making dad’s room incredibly warm. I held his hand and talked to him about things I hoped would comfort him. I told him how much I loved him.

Hours passed. The night nurse came by; I told her I was considering going home for some sleep. She studied dad for a moment and doubted he would last the night. My heart broke but at least someone had told me something. I spoke softly to dad, telling him I was going to take Oreo home, have a quick shower and return.

I came back at 12:30 am. The light in the room was low but I could tell how much worse dad was. I sat down, took his hand and told him once again that it was OK for him to go. I told him I loved him and that I would look after everything as I always had. I told him he had suffered enough. It was time to leave me.

I watched him, held his hand, stroked his forehead. I knew as his breathing became softer and less frequent that we were saying goodbye for the last time. At 1:20 dad quietly stopped breathing and his eyes closed. I believe he was finally ready to go. I also believe he waited for me to return as I had promised him I would. My father died with his hand in mine and his tough, indomitable spirit in my heart.

Through the Long Term Care Planning Network I have tried to pass on to others what I have learned about caregiving with the hope that they would benefit from my experience. 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 didn’t 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. Don’t 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.

In spite of the mistakes I made while caring for my father he still managed to give me a wonderful gift. He prepared me for his death. Even though he could not think rationally or speak, through his quiet courage he gently nudged me towards acceptance of his death. He helped me to understand that death is not an enemy, but that it ultimately leads to a beautiful state of grace for the deeply forgetful. He gave me the strength to let him go peacefully.

For all of these reasons the study of dementia has become my passion. I believe more than ever in the words of Victor Frankl, a Jewish psychiatrist who talked about the need to maintain a “tragic optimism” about the demented – the need to believe that there is a spirit that continues to shine within their souls when all else seems lost forever. All caregivers need to do is to believe enough and allow that spirit to lift us up when we feel we can’t face another day.

I have now had years to mourn, to look back. I believe I was blessed. As his caregiver my father gave me the gift of compassion; as his daughter he enabled me to accept the gift of death. I could not ask for more.

Lessons Learned

I have learned never to underestimate the power of the mind. In spite of his severe dementia, at the end of his life my father never completely lost the ability to communicate with me; I just had to learn to look for the signs.

I have learned that we need to be proactive and ask questions about the dying process before we are faced with it, so we know what to expect and can help our loved ones leave this world with grace and dignity.

I have learned that people need to say five things before they die:

  • Thank you
  • I forgive you.
  • Please forgive me.
  • I love you.
  • Goodbye.

By talking about death before it is too late, both we and our loved ones have the opportunity to express these final words of acceptance and love. Don’t sacrifice this gift because you are afraid to face the inevitable.

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