Last night was a little tough. No the last few nights have been a little tough. I’m tired but listening to the sounds in the other room, signs that my father needs me. Doyle was here on Thursday, and he bought a baby monitor. That really helped. Then I read on the internet that people do this often. I feel late to the game, like I’m one step behind what everyone already knows. I question myself. Should I have known this already?

I’m learning more these last few days about a variety of things. What is a Foley catheter? What happens when days and nights get turned around? I need to know more about Sundowning Syndrome, yes, look that up. What are some physical stages the dying go through? Am I morbid and terrible for even asking?

My wise woman friend dropped in yesterday and offered me something that I had really just read about; the need to talk about the past and go through past experiences with them. My father loves old movies and I think it’s his way of connecting with the past. I let him talk, let him explore it. He didn’t sleep well after watching some last night but I think that was the pudding he had at dinner.

He doesn’t want to talk. He wants to get better. He wants to exercise. I know I messed up because I wanted to discourage him, only because he will hurt himself again. My job is to keep him safe, right? Comfortable, right? He wants to get up and move to a chair (impossible without someone to help me, and even then…), he wants to use the walker to hold himself up and do leg lifts. I can even get him to roll in bed much less stand assisted to use a walker. What do you tell someone like this? No? I’ve figured out that I can tell him we have alternatives, like doing leg lifts in bed. I will, once he gets into a mood to figure it out. Today was not like yesterday.

Yesterday was a better day overall since I felt like I had help, he ate, and he physically felt…better. Awake and alert. Morning is always better. Today, thought, morning is not better. He was restless, not comfortable, and all over the place. I fed him pills, repositioned him this morning, gave him some water and some anti-anxiety meds. He’s resting now, at least he’s seeming to. My father does fake it when he thinks it will make people feel better. Damn stoicism.

So, I took the opportunity to make breakfast and catch up on work emails, and search more for what I should know, what I should prepare to deal with. I’m fortunate for this journey with him so I can know what to do for myself and others. This was an interesting tidbit, from WebMD:

As the body’s systems weaken in the months before death, people tend to become less active and begin to look inward. They start to withdraw from the world around them and often use this stepping back as a way of preparing.

People tend to become less interested in food as death approaches. This may feel strange. But even though one of our main ways to comfort people is to feed them, there comes a point when the body is simply not able to digest the food it’s given.

A couple of weeks before death, people can become disoriented. Days and nights switch, and sometimes they can’t keep their eyes open. Other times they can’t fall asleep. This can be particularly hard on caregivers.

During the week or so immediately prior to death, you’ll see physical changes: the pulse and breathing will slow, blood pressure will drop, and skin color will become duskier.

Within a few days or hours before death, there might be what palliative care professionals call “terminal agitation.” It’s a kind of energy or restlessness that might be expressed as “I need to get out of here.” If your loved one is deeply confused and distressed, the palliative care team can offer a sedative that will ease this transitional symptom.

Maybe everyone knows this but I didn’t. Well, I knew details about the week or so before death, and the time of death, hours and moments. It’s interesting to me how Eastern, and some Western, religious and spiritual texts cover this from an internal perspective. I’ve spent too much time in the Tao Te Ching, perhaps. The Bardo Thodol, or Tibetan Book of the Dead, really covers this well.

This WebMD section was helpful and gave me some comfort, some idea. Let’s face it, I know I’m a controlling person at times. Stop laughing, peanut gallery. I know it. Tactical, Practical. Let’s get ‘er done. I have schedules and I like routines. I need routines. I need to know who is coming to do what when, and who is responsible, who is handling it. I have two different types of calendars for my father’s care and I’ve changed them three times to get them to work right. Over the course of three days. I think I finally got it. My point: I need to prepare. I need to understand. Not because I want to control the situation. Seriously not. It’s because I don’t want the situation to control me. I want to be able to come up ahead of time with plan b, c, and d, with a few extra options on the side. I look for ways to solve, to help, to make the situation smooth. One of my employees said, a while ago to me, “Slow is smooth, smooth is fast.” She had it from the military but I’ve adopted it for everything. I love it. If I take time (slow), and plan (smooth), things will run well. Maybe not fast, but well.

Yet, dying can be messy, can’t it? Physically, mentally, and emotionally messy. I have to learn that, too. Let messy be. Carefully clean it up, with a plan, with consciousness, with determination. I’m sharing this with you because I think every caregiver must feel it – but damn. Just damn. The things that go through your head. We can talk about those some other time, when I won’t feel vulnerable and judged.

The cats have now discovered that my father is awake. He wants raisin toast or an English muffin. And orange juice. And to start an exercise program. The cat is bothering him. Time to smile and go to work. I hope you’re patient with me as I dive through this. Having you there is weird. I’m not used to this kind of sharing. Love to all.

~TDD