Make a plan. It will be worth it

Having just experienced the death of both my only sister and my husband in the past few months, I am acutely aware of  the need for planning for end of life events.  Several months before my husband went on hospice, we had a family discussion — with him and our kids — about what the criteria would be for him to decide to enroll in hospice and thus face his own death.

More about that in a moment — even as his  health was declining, last year I worked with him to complete his memoir We are Wanderers We are Seekers, the story of how his Mennonite family escaped persecution in Europe and Ukraine and came to America. He had collected boxes of material.  Boxes!! He had visited many of these places himself and there were wonderful emails just waiting to be put into a book. By the time we started it a year ago last Spring, his eyes no longer allowed him to type or even read, so I read to him and made the edits he asked for verbally. We looked online and found a press called Friesen Press, which suited us perfectly since the founder had been a Mennonite himself. The book was finished in time for my husband’s  85th birthday and he was able to present it to our children and grandchildren in person. Had we waited until this year to do that, it would not have happened. So the timing was perfect.

Earlier this year, we realized we had no funeral arrangements made, even though a funeral was not yet in sight.  We contacted The Neptune Society and joined, figuring that we would definitely need this service at some point, and why not buy it now. It would only more expensive later. We each purchased a package for cremation. Nothing fancy. No service required. Just the removal of the body,  a death certificate, the return of the ashes in an urn.  Done.

As the year progressed, my husband often expressed his desire to die while he could still make that decision voluntarily. He clearly told us that he did not want to be so immobile that he could not dress himself, sit up in bed, feed himself. His eyesight now was so bad, he could not even enjoy his beloved sports teams on our big screen TV. “Not the quality of life I want,” he said.

Easier said than actually decided. The week came in July when he fell several times trying to stand up from his bed to a wheelchair. Aides had to come and lift him back to the couch or bed on a Hoyer lift, a time consuming and complex operation. His physician came to visit and basically said, “It’s time.  It’s hospice or the hospital.” So he agreed to talk to the hospice representative. She came on a Thursday. We all thought we had a few weeks if not months to decide which hospice to choose. But by the following Monday, he had fallen again and he was losing the ability to explain his wishes very clearly. Hospice rushed a hospital bed, medications, and oxygen to us just in time.

And while we still didn’t think it was “the end,” our physician asked hospice for “continuous home care” for him, which meant 24/7 nurses at his bedside as his body shut down. Continuous home care (CHC)  is something hospice is required by Medicare to offer, but many patients are not told about it, since they need either a physician to recognize it’s close to the end or they need to ask for it themselves.

So we had made a plan. The criteria had been met. The remaining days were not painful for him, but they were very difficult for the rest of us. I so wanted to feed him, to give him juice or water. But the physician explained that it would only prolong the dying process and make it more difficult for him. He was able to talk to us for a day or two, call his brothers and grandchildren and tell them he loved them. And then he peacefully slept until his death that weekend. Five days from when he stopped eating or drinking.

It has been a few months now, but I look back on the planning we did with gratitude and relief. I know that if we had tried to keep him alive a few more months, he would have been in pain and miserable. He could do nothing to delay the inevitable. There was no cure or treatment. It was our wanting him to live more than his wanting to live that would have made it harder.

We also had to figure out how to honor his memory. We knew he did not want a “funeral” per se. (We should have made the video we showed at his memorial to him before he died — that would have been awesome.) But we were not able to plan ahead at that point. It was all so overwhelming. We did find a wonderful company called Lighten Arrangements who helped us plan a hybrid memorial — part in person for family and friends nearby and part Zoom for those who lived far away. Lighten did indeed lighten our burden. They helped us plan and implement this honor of him within about 2-3 weeks. You can see his website here — we were able to gather about 60 of his friends by Zoom and 25 in person. They put together the video of his life, and each of us gave short presentations.

Planning made it all possible. When you are caregiving for someone who is declining, it is hard to focus on the inevitable end. And when you are grieving, you can have trouble making decisions. Planning ahead makes all the really difficult parts so much easier. None of us wants to think about dying, but for sure we all will have to face it. Some may prefer to just let it happen. I am glad we were able to plan ahead. My husband wanted it that way.