I interviewed and photographed Richard and his wife Amy in April of 2017. At the time, we discussed Richard growing up in Florida, and how they met in Washington DC and were married later in life. Richard’s dementia was advanced and he passed away in 2019. Amy and I had kept in touch and a few months after Richard’s death, I asked her if she would be willing to meet with me again and talk about her experience as his care-partner.
Amy agreed talk again and told me, “I was relieved at the diagnosis in a way because it explained a few things that were really upsetting me. I’m sure he knew - even then. He was so afraid and anxious about loosing his own control, his own person-ness, his own identity. And that inevitably would show up in frustrations and anger. Once I knew he had dementia – I could let things go versus be angry and upset.”
I asked Amy what was the hardest about being Richard’s care-partner as his dementia progressed. She paused and said, “It’s hard to say ‘I can’t do everything’. Even as the stress was building up. Last winter he needed 24-hour care. It’s like a sick child, you can never lay the burden down. He would get up at night and fall down. He couldn’t get back into bed by himself and I’m not strong enough to help him.
I feel like I did everything I could. Last winter was just a hard winter. I wanted so much to take it through to the end. To let him die at home. And he wanted that too. But it got to be too much. He couldn’t stand. He couldn’t eat on his own. He couldn’t help me with anything. He had to go into care. I was lucky that he went to Buckley (very close by) so I could be with him. Within 3 weeks he had passed. “
We discussed how her experience might be helpful to others and Amy reflected, “It’s so easy to lose your perspective. The loss of that partnership, that camaraderie, is hard to get past.
It’s a difficult answer but it jumps back to basic philosophy for me. It’s accepting and appreciating whatever is in the moment. What you’ve got is what you’ve got. You didn’t deal this hand. This is the hand that’s on the table. How are you going to play it?
For me … Richard washed the dishes. He did that until about a year before he died. It was what he could give. I would watch him working in the kitchen. I would appreciate that whatever he could do was amazing. The last time he did it he was just looking around … he was confused. And I said to him, ‘Richard, is it too hard?’ And he slowly said, ‘yes.’ Now younger Richard would have fought with that. He would have been angry. But new Richard couldn’t remember the old Richard. So I told him, “You don’t need to do that anymore. I’ll take care of it. Don’t worry about it. I’ve got it. It let him be calm. It let him be reassured that somebody was going to deal with it – like a child.
You have to readjust your whole life on the moment. Having the compassion to be empathetic with what they’re going through. And not staying in your own ego. What do I want? What do Ineed? Noticing and being accepting of what’s happening now. It doesn’t matter what happened 5 years ago. You don’t have to think ahead. This is what’s happening right now. He can’t wash dishes anymore. Yes it was wonderful to have him wash dishes. But that’s not there anymore. So you just have to drop it off. Drop it off. All these things that you drop off one at a time. The little losses.
It’s so tempting to hold on to your ego. So tempting to hold on to images of what you expected. And what you want. And what you think you deserve. It just wipes you right out. Here I am at the end. Saying that – I learned so much. I’ve learned so much. I’ve grown in ways that I would not have grown if I hadn’t been cleaned by fire. It just burnt right through me. And it was hard. But here on the other side I have a deep peace. I’ve learned a lot about death and end stages. It makes me think about my own future. I’m in line. I mean, we are all going to get there and how do I want that to be for me.
It’s a deep peace of just meeting each day as the day it is.”