Back from the hospital

Before Dennis arrived back home from his pneumonia bout and his hospital stay, Hospice by the Bay arranged for an oxygen machine to be delivered, as it was determined while he was in the hospital that he should be on oxygen 24 hours a day. In addition to the machine, they also dropped off fifty feet of flexible tubing, enabling Dennis to get around the house without having to hook up and or disconnect the air tube each time he wanted to move.

One of the first things I did once he was home was to weigh him, as we both were sure he had lost weight while in the hospital. He was down to 124 pounds. Consistent weight loss is one of the biggest problems with ALS, as the more weight you lose, the worse the disease becomes. Monday night, November 15, after I had gone to bed, Dennis got tangled up in his tubing while attempting to get to the bathroom and fell in the living room. He managed to pull himself up into his chair. He continues to feel bad; he feels it's taking a long time to get better.

His next scheduled appointment at the ALS Clinic was on Wednesday the 24th, the day before Thanksgiving. We had postponed one appointment to give him a better chance to regain his strength from his hospital stay. While it was a "clinic appointment" (where we meet with all the doctors involved in his case), we didn't see all the doctors this time. They were most concerned with his breathing, so most of our time was with the respiratory therapist, along with his regular ALS doctor. His breathing numbers were pretty bad; his lung capacity function was down to 25% and his muscle atrophy had spread from just his lower left leg up into the upper part of the leg; there was also noticeable muscle loss in his right leg. While meeting with Dr. Lomen-Hoerth, she mentioned that during the last appointment, she had recommended we sign up with hospice so that we could get to know them. This time, she stated, "The last time you were in, Dennis, I had told you that the ALS was still slowly progressing, even though you were a borderline hospice case. I now feel that hospice is your best alternative. The pneumonia you experienced earlier in the month has suddenly made the ALS progress at a much quicker time frame. I'll keep monitoring you monthly, instead of quarterly as we have been doing."

After running him through some strength tests, the appointment was concluded. We scheduled the next appointment for Friday December 17. I had gotten a wheelchair from the reception area to make the trip to the clinic easier for Dennis. He needed to use the bathroom, so after finishing up in there, I said, "I'm going to stick my head in Dr. Lomen-Hoerth's office a minute to get something clarified. I'll leave you here for a minute; be right back."

I walked back to the office, found Dr. Lomen-Hoerth and asked, "I want to be sure I'm clear about what you just told us, doctor. When you said he's now 'definitely hospice' does that mean you concur with the prognosis that the doctors at General gave us? That he's in his last six months of life?"

"Yes, that is what I was saying," replied the doctor. "And so you're prepared, Rick, not only is he in his last six months, it could be any time."

"Thank you for being candid with me. I appreciate it, as it will help me prepare myself."

I numbly went back down the hall to Dennis. We were both quiet on the ride in the elevator. Once we got to the ground floor, I wheeled him near the door and went to the valet service to have them bring the car around. They helped me get him into the car for the ride home. While waiting for the car, I phoned Aragorn to see if he could meet us at the house and help me get Dennis up the stairs. He said he'd meet us there.

While driving back to the house, I broke the silence in the car by stating, "That sure wasn't good news she was giving us today, was it? The reason I stuck my head back in her office was I wanted to get clarification about the hospice services she was talking about. She was kind of cryptic, saying that you're definitely hospice material now, without coming right out and saying you've got less than six months left to live. She told me that not only are you in the last six months, she also told me to be prepared because the end could come at any time. I'm not telling you this to scare you, or upset you, I'm just trying to be honest—just like we've always been with each other."

He didn't say anything. I reached over and patted his leg. "We'll get through this, dear. You know I'm not going anywhere."

I arrived first, but he pulled in about five minutes later. It was the first time Dennis had seen him since December 2009; I had not seen him in over five years. He's taller than his Dad (and much heavier) so it was fairly easy for him to assist Dennis up the steps. We all got settled into the living room and filled him in on the latest news with respect to Dennis's condition. At one point, Dennis had to use the bathroom. While he was in there, I whispered to Aragorn, "The news we got today is nothing but bad. She told me that he's in his last six months of life, and she also warned me to be prepared as it could be any time. I'm sorry I have to tell you this, but those are the facts, Aragorn. I hope you're able to bring Calvin by sometime soon, because he's not going to be around much longer and I know he desperately wants to meet his grandson. Will you do that for us? For him?"

"Yes, Rick. I will bring him by next week. I promise."

After another 30 minutes of visiting, Aragorn left, promising his Dad that he'd bring Calvin by the following week.

The next day was Thanksgiving. For the past few years (I've lost track on exactly how many) we've been going to Jim and Greg's house, as Jim has been having an open house Thanksgiving for over 20 years, making sure that friends who may not have anywhere to go can come to his house. I asked Dennis, "Do you think you're going to be up to going to Jim and Greg's tomorrow?"

"I don't know, babe. I'm feeling pretty weak right now. Let's see how I feel in the morning and we'll take it from there."

One of the problems Dennis experienced once he got home from the hospital was his inability to lie flat on his back, which meant he couldn't sleep in the bed any longer. He had been sleeping in his recliner in the living room; it was the best we could do under the circumstances. I really missed having him in bed with me.

The next morning, Dennis was feeling pretty chipper and decided he'd make a loaf of bread to take to the dinner. He had already made the pumpkin cheesecake but didn't have the energy to make up his vegetable broth to ensure a large amount of gravy. While he was busy in the kitchen making the bread, I phoned Jim to see if he'd be able to help me get Dennis down the front steps and then come back with us to help me get him back into the house. He was agreeable; I told him I'd pick him up about 12:30, come back to the house, get Dennis, then head back to his house.

The day went without a hitch. Dennis thoroughly enjoyed himself, as just about everyone that showed up had not seen him in quite some time, as he had been house-bound for about six weeks. Everyone welcomed him with hugs; you couldn't wipe the smile off his face all day. We didn't know it at the time, but it turned out to be his last public appearance. The only time he got out of the house after this excursion was for his appointment at the ALS Clinic on December 17.