Day 3 of the Long Night

I have made it through the third day since my father announced that he was coming home to die. Yesterday while Mom ran errands family came to visit and spend some time with him, saying their goodbyes as best might be possible. Unfortunately, while he was awake, his mind was somewhere else. He was groucy and sullen and irritable, and having any kind of meaningful conversation with him was out of the question. He was angry that Mom had gone somewhere without him, and angry that he woke up and was still alive. We couldn’t help but see the humor and irony of the situation. But it was really hard on the grandkids and great-grandkids to see him like that. They hadn’t been around him while he was in the clutches of dementia so they weren’t prepared for him not to recognize them. He’d been so clear the day before, but he was awake all night, apparently just waiting for death.  Dementia seemed to hit more often after bouts of insomnia, so yesterday was no exception.  But last night, he slept.  He woke up and had a little breakfast. I had to pick up my sister from the airport, so I didn’t see him until about noon, but it was a huge relief to find he was in his right mind again. But what do you say to someone you love when they are waiting to die?

Today some elders from the church visited and had prayer with my parents, which was something they both appreciated. And the nurses who have cared for him at home during the last three years came, bringing food and visiting with this frail old man they had come to love.  That visit was hard to handle. They were in tears, we were in tears, Dad was thanking them for taking such good care of his needs and being his ‘special angels’ when he needed it. I could hardly keep the tears back, time and again they just poured like a river.  My grandfather (Dad’s father) used to joke that Granny’s bladder was behind her eyes because she could cry so much and so easily. I have a feeling I inherited that. I kept thinking I should be dehydrated from all those tears. I gave him a good back massage, one of his favorite things, and he told me I had no idea how good that felt. In that moment I could have rubbed his back for hours, anything to show him my love, to make him feel better. I have done this so many times in the last few years, and it was hard to think that soon I wouldn’t be able to. I noticed how thin he’s become, how easy it was to feel his bones under his skin. It was a sad reminder of how much he has declined in the last year, month by month. I thought of all the nights I’d spent sitting with him in hospitals, being there to interpret things he said for nurses, calling them if he had a need, sleeping in chairs by his bed. I was so glad I had invested that time in my relationship with him. There were no regrets, no words I wish I had said. He knows he is loved so much by so many.

I think about Mom and how much all this worry and care has taken on her physically and emotionally.  And how much we will need to invest time in our relationship with HER now.  She’s gone without any real “life” of her own, living for simple pleasures like her cats and flowers, building her daily routine around Dad, his doctor visits and dialysis. She has been his caregiver all these years, and I’ve watched her relationship with Dad changing from wife to almost mother as his mind has slipped away. She used to do crafts, and have hobbies, but Dad has been her focus almost continuously since he started dialysis five years ago. That caregiver transition is so hard, watching someone you love struggle for any vestige of normalcy, feeling helpless to do anything but assist and realize that their independence is waning, they are needing you more and more.  It’s one thing to have a baby or child dependent on you when you are young and it’s your baby…but the leap is much harder when this is your spouse and you are older and have less energy and physical strength. To go from wife to friend to nurse and mother, what a cycle. How hard will it be for her to transition to widow?  What can we do to help her with those changes? We aren’t going to have a funeral or memorial service. We all feel so drained already we can’t fathom dealing with that, and the medical issues have drained the finances so deeply that there isn’t money to consider it anyway. We hope that won’t cause any issues with the other family members, but all of us who’ve been there this week have discussed it and agree on that. We are saying to dad the things we would have said as a eulogy to everyone else. Another ceremony would be more painful. We discuss cremation, options, expenses, and the medical bills that are already coming in, and the income changes that losing Dad will entail.  Keep it simple, it’s how Dad would do it anyway.