Another Visit From Randy

"Released into hospice". That was the official word on his discharge.

I was seriously wondering if I'd bitten off more than we all could chew when I picked up my dad from the hospital this afternoon. He had trouble standing, much less walking the two or three steps from his chair where he was eating lunch to the wheelchair for his ride down to the front doors. Same thing for his transfer into the car.

How on earth were we going to get him into the house?

It took both Rich and me to help him get on his feet out of the car. Once attached to his walker, he made a bit of progress, but we had a chair waiting for him immediately after he crossed the threshold. He sat for about ten minutes, during which time we raised the seat of his lift chair, changed his oxygen supply from the portable tank to the house feed, emptied the car, removed his hat and jacket, and Rich maneuvered his chair with its tiny wheels across the carpeted floor to sit next to his lift chair. With help again from both of us, he got seated into his lift chair.

Problem was, he couldn't stay there. Sure, we can - and did - bring supper there, but there's the matter of bathroom breaks, and heading down the hall to his bedroom at night. If he stayed this disabled, how would we manage?

I called Randy, letting her know he was now home, and she could visit at her convenience, as previously arranged. She arrived within an hour.

He came home with new meds, one of which seemed to contradict what another one was. She explained, letting us know to keep using the old one on schedule, but we could insert the new one in between if necessary. Another had extra benefits as far as breathing: it was a sleeping pill but also relaxed the chest wall muscles so it could expand while he was sleeping. She also said it could be given again if he woke, as he often does, at midnight and had trouble getting back to sleep. She would pursue getting him a second Rx to allow for extra usage.

She made sure Daddy knew what hospice is. He's had it explained to him several times in the hospital, but didn't recognize the word this afternoon. He knows perfectly well where he is in terms of his life expectancy, and easily explained that to Randy, adding that he had accepted it and was finally ready to go any time. Words, specific words, however, cause him problems. He's lost their meanings or can't recall the one he wants at the moment. That's progressive. He refers to it as holes in his brain.

We work around it.

She made a late afternoon phone call to the person she knows who can order him a hospital bed delivered to the house - and charged to Medicare. It's extra-long. He complains that my full-sized bed is shorter than normal. He's just taller than normal, and has been used to a queen bed with Mom for many years. This new bed will let him stretch out and keep his feet covered. The bed will arrive Tuesday or Wednesday. Meanwhile we may continue to have nights like last night where he wakes and wanders into the living room to sleep in his chair so his head is elevated. This means his strength is returning, something we noticed several hours after he came home. It also means nobody is awake to switch his oxygen over to the tubing in the living room.

Luckily I made a mid night potty call and saw him in the chair, switched the tubing, and covered him with a throw. He's been sleeping well since. I wish I could have.

But he walked it! Hooray!

Now I just have to figure out sheets for an extra-long hospital bed. And get memory foam for a topper. Not egg-crate. And, if we rent it for six months, it's ours. Like the nebulizer. Oh, and the height-from-the-floor adjustment is a hand crank. Medicare finally began to offer hospital beds for home use with electric head and knee lifts. Those used to be hand crank as well.

We discussed the "Thick-It" we need to add to his liquids. This gets them to a variety of consistencies, as we've already found out. There is a learning curve! The hospital says "honey", though many of his liquids didn't arrive that way. We've gotten slightly thick to solidly jelled, so far. Randy said "nectar" to "honey" works well enough. She doesn't care if his plain water is treated or not.

Then she asked if he remembered what he was taught about how to swallow?

Huh? News to me, and apparently to him as well. There's a "how"? And obviously nobody was taught. So she demonstrated. By swallowing with the chin down, the airway is closed off even if the mechanism is no longer working properly, like his. You can't aspirate. It's exactly the opposite of during CPR when the head is tilted back to open the airway. So Daddy tried it, and we now know to remind him to do it.

Randy decided to order up physical therapy for him, as she'd planned after his first hospital stay. The focus will change, however, to strengthening muscles that will assist his breathing. That brought up the issue of the focus of hospice vs. the focus of the county health agency. She will focus on keeping him as well as possible for as long as possible, while also keeping him as comfortable as possible. Hospice focuses more on comfort care. Each gets paid differently by Medicare, but simply because he is post-hospitalization, two hours of home health aid support daily will be covered for 6 months, as well as the PT. She can work on the bed, catheterization changes (he was sent home without the Foley and leg bag when he was too weak to get to the bathroom without help), fighting for meds needs, etc. The added bonus to staying with the county is their staff knows him and his needs already. They know how to deal with his blindness and his memory. And he trusts them.

What the county does not offer is 24-hour care, which he does not need yet. Hospice, I'm told, can. They are coming out this morning to make their presentation, answer questions. Randy tells me that they do not cover home health aids for two hours a day, so far the most expensive part of his home health care. I'm thinking we stay with the county for now, although I'll wait to hear what hospice says. Should things change, we can switch over, or take what's best of both programs, paying some expenses ourselves.

We'll see. Meanwhile I need coffee.