Wow, what a day!
Background:
Last week, Bill's care team and I agreed he needed a new wheelchair. Since he's a vet, the VA will provide one, but there were hoops to jump through. To qualify, Bill had to be seen by a Primary Care physician at the Michael DeBakey VA Hospital in Houston. Because I can no longer transport him myself, his caregivers at Richard Anderson Veterans Home (RA) arranged the transportation.
Thankfully, since Bill had been seen at the Galveston VA within the past three years, we didn't have to go through the process of getting him admitted. However, we had to transfer him to the Houston facility so that I could use RA transportation. The process involved contacted VA to make the transfer. It took three phone calls and two days, but I got it done and asked for an appointment. When they said I could have an appoint "next week," I was flabbergasted and took it, not thinking about the fact it was 1:30 in the afternoon.
The Appointment:
I knew it would be a challenging day, so I asked my daughter, Shelly, to come with me. Despite a crushing schedule - writing three graduate papers, teaching five classes, supervising adjuncts, and conducting meetings, she said yes.
At first, things went surprisingly well. Bill was calm, more at ease than I'd seen him in weeks. He enjoyed the ride and being outside. Though he didn't quite recognize Shelly, there were flickers of moments when he seemed to realize she was his daughter. He forgot my name but knew I was his wife. For much of the day, I think he thought Shelly and I were part of the RA team.
The RA transport dropped us off at DeBakey and we located the Primary Care office without any problems. That appointment lasted an hour and a half. It was now 3:00 p.m.
Next, the doctor sent us on a VA scavenger hunt:
- To the social worker to drop off paperwork
- To Physical Therapy to schedule the wheelchair evaluation
- Then to the lab for bloodwork
By 4:00 p.m., Bill was getting restless and agitated. I called RA for a ride back and we waited outside.
The Meltdown:
While we waited, Bill slipped into full Sundowning mode – agitated, confused, and frightened. He tried to undress, yelled for help, and attempted to get out of his wheelchair. Shelly and I tried to distract him and calm him down, but nothing worked. We waited 40 extremely long minutes.
The Ride Back:
Once on the van, things escalated. Bill became even more frightened and violent, his eyes wild with panic. He was lost in a terrifying world – yelling about saving the kids and keeping them off the street. His car had been stolen, and the parts were hidden in the trees somewhere. Crazy drivers were going to hit us. His days as a police officer came flooding back in a nightmare-like haze. He was convinced that we were all in danger and he couldn’t protect us.
We worried he might lash out at the other veteran on the van, also in a wheelchair and locked in. Then, Shelly realized he was trying to pray; so, she went into "preacher" mode and began guiding him in prayer. For the next 30 minutes, she had him praising Jesus and asking for his protection. Her calm voice cut through his fear, and slowly, his violent edge softened. It was still touch and go the whole trip, but her steady presence made all the difference.
I called ahead to RA so someone could meet us at the door. I knew it was going to be difficult getting him off the van. Sure enough, he locked his arms to avoid being put on the lift and began screaming, "You're going to drop the children. Stop, stop! Don’t drop the children."
Four of us managed to coax him down the lift and out of the van. The RA nurse, Valerie, stepped in to take charge. She's so good with him. I've seen her magic before. We left Bill in her capable hands and drove home - shaken and exhausted.
What I learned:
Never schedule late appointments again! I should have remembered Bill's worst times are in the afternoon when Sundowning takes hold. Being in unfamiliar surroundings and exhaustion sets his brain on fire.
To him, the danger was real. His world is a mixture of his past, the unknowns of the present, and the demons of the Alzheimer's disease itself. He felt helpless because he couldn't protect himself or get us to understand the danger. I cannot imagine the terror going through in his mind.
We'll have to return once more to have him evaluated and measured for the wheelchair. I will insist on the earliest appointment possible! If it weren't critical that he have a better wheelchair, I wouldn't take him back at all. But he does; and, unfortunately, they won't come to him.
Thank You, Shelly:
I don't know how I would've managed without her. She not only helped calm Bill, but she also made sure I heard what the doctor was saying (my ears are stuffed up from my recent illness) and took notes on what we had to do next. She's my hero!
It was a long hard day, but having my daughter there was a huge comfort and a lifeline. It makes me realize how blessed I am. Many caregivers have no one to help them and no VA to help pay for the care. I pray that our legislators will someday soon find a way to help these folks. In the meantime, if you know someone going through this, reach out and give them a big hug today. Sometimes, just knowing people care can get you through the day.
NOTE:
Please do NOT use this experience as a reason to comment here and tell me how wonderful god is for helping us get through this day. I'm not interested in a god who allows someone like Bill, who actually believes in and love god, to go through such a horrible disease. Prayer was only a technique to help Bill get through his horrible day. Please keep your religion to yourself, and thank you for respecting my wishes.
Ref: What is Sundowning?
