To say it’s been rough the last few weeks would be a major understatement. I just looked at the calendar and saw that it’s really only been 22 days since the chaos truly started. It feels like a lifetime.
We traveled back home 3 1/2 weeks ago for three reasons: participate in my husband’s grandfather’s memorial service, celebrate our children’s birthdays with my family, and visit my father-in-law. At that point, my father-in-law was living at home by himself.
The first blip of trouble came Saturday night when we were visiting with my husband’s family on his mom’s side after the service. His dad called. He was in severe pain. Off my husband went to help his dad. The level of medication hospice administered to get him back on track left him pretty out of it.
Really out of it.
As we built a ramp for his front porch on Monday, we came to a grim conclusion: he shouldn’t be left home alone to fend for himself. There was no chance that he could keep his mountain of medications straight. And so… my husband stayed and I drove the kids home, getting in after midnight.
That week was a blur of shifting responsibilities. My husband is a stay-at-home dad. To have him suddenly not around was more than just an inconvenience. Jane had thankfully passed her driving test the previous week. Hal’s best friend’s mom agreed to pick him up from school as long as needed. Jane and her boyfriend, between the two of them, made sure Daryl made it home too.
And we just worked on surviving.
We returned to Oklahoma the next weekend, but had to wait until after halftime Friday night to leave, meaning once again I was driving hours after I would normally be asleep. But there was hope when we arrived. Poppy, as the children call him, was doing much better. Maybe Daddy could come home.
He gained some concessions from his dad – the most critical being that he would not drive. The truck was removed from the premises. Arrangements were made for a friend to come during the day. My husband would return on the weekends. We had a plan. My husband came home.
The plan lasted two days. Just enough time for him to keep his doctor’s appointment and vote early. By Wednesday afternoon, the friend was calling to say his dad was “not snapping out of it.” He shouldn’t spend the night without someone there.
My husband started packing. I left work to see him off. We hugged and hoped and wished each other well. And he was off. Again.
Circumstances changed for the weekend, making it possible for me to visit him. The kids, on the other hand, had plans – and were wearing down from all the traveling. Next thing I knew, I was making intricate plans to get each kid from place to place in my absence. The Angel Mom who was picking Hal up from school each day said he could spend the weekend with them. Daryl had a slumber party to go to. Jane had a parade to march in.
I drove back to Oklahoma, not as late on the road as other trips, but still… I was making the trip. Again. It was a lifesaver for my husband, who was having trouble keeping his days straight. His dad basically slept the entire time I was there. He was extremely unstable, falling repeatedly, and he wasn’t very coherent when awake. He was in terrible shape and the hospice nurse was predicting not much time left.
But then they put him on all liquid medications the next week, due to his difficulty swallowing, increased some dosages, reduced others, and suddenly, he was stable again. He could walk without his walker. Walk without falling. Spend a decent amount of time awake. Be a little more understandable when he spoke.
Was this the “last hurrah” before the end? Or was this the start of something more long term? We didn’t know. And this – this is probably the hardest part. The not knowing. If you know, you can plan. If you don’t know, you just wait. And react. Everything is on hold. You can commit to nothing.
And so, even though it would make four weekends in a row for me, and the kids all wilted a bit when I told them, we decided to return the following weekend. What if it was the last opportunity?
This time, we had to attend a Destination Imagination training event Saturday morning first, so we didn’t make it in until Saturday evening. The change from the previous weekend was remarkable! He seemed to be doing so much better!
It’s like he’s nesting or something. He keeps wanting to rearrange things in the house. He wants me to look at stuff and decide what I want. But he gets distracted in a heartbeat. So he might run dishwater and then decide he wants to move a dresser and then as you unload things from the dresser, start going through a cabinet and then leave the cabinet open and announce that he’s going to lay down. The nap might last 10 minutes before he’s up again and starting a new task.
I began to understand why my husband was exhausted. It’s hard to keep up when someone isn’t making sense. We left less than 24 hours after we arrived and my worry over my husband skyrocketed.
There are good moments. They might occur at 3:00 in the morning, but there are moments that my husband will cherish. Time spent in conversation or just in the pleasant company of his father. The full and sincere hugs. The beatific smiles.
But there are bad moments too. Moments when his dad chafes under his loss of independence and dignity. When he decides he’ll drive and his son will have to call the police to stop him. When he decides he wants to cancel hospice because he doesn’t trust them. When his mind is messing with him.
All of this wears on my husband, who is now a full time caretaker and away from the people who give him strength and stability. And it wears on me, as I worry about him. I’ve been walking in a haze for awhile now. I haven’t been feeling much at all. Emotion, that is. The stress I’m feeling stronger than ever.
This is our life. For now.