Last time I wrote about dad’s hospice. As I mentioned, he slept through most of his first day there. The next few days he was awake and aware of his surroundings more, though he didn’t speak at all. He did indicate with his hands and facial gestures when he was thirsty.
Each day the palliative care physician came in the room to talk to me. He told me what was happening according to his morning assessment. By the third day dad seemed to be doing so much better than the first. I asked the physician if he still expected dad to have about 3 months left. He said no. At this point, dad was not eating anything and not drinking anything except tiny amounts of water from a syringe or sponge.
“I think you can count the remaining time left in days, not weeks.” He said. I was surprised. He looked so good. His color was good and he didn’t seem to be in any pain, though he was getting medication on a regular schedule to prevent pain. Doctor A said that dad would probably experience a big change the following weekend – 5 or 6 days away. He said that without food and water, dad would be slowly declining unless he had another heart attack.
It was just hard to imagine that dad would be gone. I knew he had two heart attacks and that his heart was badly damaged. I knew his kidneys didn’t appear to be functioning right, as indicated by the dark color of his urine. Still, thankfully, dad did not appear to be in distress.
As the week progressed, I could see that dad was losing his ability to swallow. In addition, his eyes didn’t seem to follow us anymore. He kept his eyes half open all the time, but I wasn’t sure if he could see anything at all those last 3 or 4 days.
I spent every afternoon with dad. I could see he interacted well with all the staff. The low patient-staff ratio meant that all the nurses and aides knew dad and they all seemed to really care about him. My son or daughter spent time with me in dad’s room at the end of every day.
In addition, a volunteer came in every day and spent some time with each patient and his family in the patient’s room. She just talked about anything and was there to give suggestions and help people feel they were not alone. This woman came in every day — 7 days a week — for several hours to visit with the hospice patients.
One day a different volunteer came to visit dad. He was a Vietnam Veteran and he brought dad a handmade quilt with US Marines fabric, a certificate of appreciation for dad’s service as a Marine, and an American Flag pin. By that time, dad was not very aware of his surroundings. I felt sad that dad was unable to see since it was beautiful quilt and dad was so proud of his Marine service. The nurses put it on dad’s bed each day after that. This veteran didn’t just volunteer at hospice. Instead, he visited veterans whether they were in the VA medical center, a local hospital or nursing home. In addition, he volunteered to pick me up the next day to visit dad as I didn’t have a ride yet. The bad weather kept me looking for rides each day.
The nurses had suggested that I talk to dad even when he was non-responsive. I had heard that before and did it with mom. I tried to tell dad that I would be all right when he passed away. I would be sad and I would miss him, but I would be all right. However, every time I tried to say that, I started to cry, so I wasn’t too sure I was being very effective! I am sitting here with tears running down my face right now as I write this.
As the doctor had predicted, dad’s condition changed markedly from Friday to Saturday. By Saturday he was completely non-responsive. He didn’t move his head to my voice or open his eyes. The nurses continued to try to put moisture cream on his lips, to readjust his position every 2 hours and to give him pain medication.
He appeared to be in distress more often now also. The doctor changed his orders to increase the amount of pain medication given regularly as well as to add the other medication for anxiety more frequently. I don’t think the medication alone was enough to completely knock dad out, but combined with his declining condition; he was asleep most of the time.
Over the weekend, my son, daughter and I continued our vigil at dad’s bedside. We left only to get something to eat. The doctor thought dad would pass on Saturday but still he held on. We returned Sunday and again spent the entire day at dad’s bedside. I tried again to tell dad I would be OK when he passed away, and was more successful at talking without crying. Dad didn’t give any indication that he heard me.
He seemed to be holding on by sheer willpower. He had not eaten nor had anything to drink for over a week and was totally unresponsive. But still he hung on. His breathing changed a few times over the weekend. The first time I called the nurse and she said it could be any time but there was no way to tell for sure.
Late Sunday afternoon when the volunteer was there, she suggested that dad might be holding on just because we were there. We might have to leave for awhile before he would pass. A few hours later, one of the nurses said the same thing. We left around 6 but I asked that the hospice call me if dad passed or if anything indicated it was imminent.
My son drove me home and I had some dinner. Just after 8 PM, I got the call from hospice. Dad had just passed. I called my son and daughter and asked if they wanted to go in with me. Both did. We went to see dad one last time. The staff had begun to pack up some of dad’s belongings but had not changed anything for dad in his bed. We said goodbye and talked quietly among ourselves. I packed up the quilt and all of the snacks I had brought in during the week.
We were glad dad was finally at peace, but disappointed to have been absent when he passed. I can only accept that if he had the ability to choose the time, then that was how he wanted it. He knew we were with him all that time and I think that gave him comfort.
I am thankful for all the help and care that we got from such a wonderful hospice. It is difficult to lose a parent. But compared to mom’s last hospitalization, this was far less stressful for both the patient and the family.