What Just Happened??

This past weekend, we returned from vacation. Yesterday, we went to pick up Dad from respite care. I wish I could say that we had no regrets about sending him, but we have a lot of mixed feelings. This is because Dad was in pretty rough shape when we saw him. He wasn't fully dressed, he hadn't been shaved in at least 2 days, and his eyes were so crusted I was surprised he could open them. But when he did and saw us he was so happy that for the next few minutes he babbled non-stop and the only thing we could make out was that he was very relieved and happy to see us.

That was enough to satisfy us for a few minutes, but from that point on until Dad went to bed last night, it was completely downhill. He had lost an incredible amount of mobility over the course of two weeks. On the day he went into respite care, he was still going up and down the stairs of our house unassisted. By the time he left respite care, he was in a wheelchair and required the help of 3 people to get into Mom's car. After a couple of scary moments in the stairway, Mike and I decided to move him downstairs into the dining room. In addition it became apparent that he had not peed for several hours yesterday, and by the time he went to bed late last night he was still dry, in spite of the amount of fluids we gave him. After sleeping through the night (the only good thing that happened), he woke completely wet through, and finally halfway through breakfast began to perk up. In talking with the nurse at his PCP, we think he was pretty dehydrated yesterday. How long he had been in that condition is anyone's guess, but according to a friend who visited him each day, he was peppy and enjoying himself throughout the week, but also getting harder and harder to rouse. The nurse told me that behind dehydrated can make someone very sluggish and disoriented. One day last week our friend found him in a wheelchair, and we had to make it clear we didn't want him to use one.

Mom, as one can imagine, was pretty devastated by Dad's condition. While she wants to continue to send him to daycare, she doesn't want to send him to respite anymore. She is convinced that in home care is the only way to make sure Dad is taken care of properly. Testimonies from friends who've either gone through this or seen in in family members, will back this up. But Dad's physical functionality is so poor at the moment that there is no way he can remain at home without a regular stream of home health aides coming to help Mom. In addition Mike is pretty sure that had we not put Dad in respite for those 2 weeks and gone away, he would've taken Mom down with him. I know this is true because I saw how close to the edge she was before we left. Heck, I saw how close WE ALL were. The brochures for respite care dress it up very nicely but when you get down to it, respite is for the survival of the caregiver. I repeat the words Dad's neurologist gave me at our first appt. "Every year I lose more caregivers than patients." That is NOT a noble, or even desirable statistic. Because the result of that is that the patient must enter a facility anyway and has not even the caregiver to comfort them with their presence. Today I reminded Mom about this, about how she MUST take care of herself first. Because if she becomes incapacitated, Dad will have to enter a facility. There is, realistically, no way Mike and I will be able to assume her role as primary caregiver. I wonder if I should feel horrible as I say that, but I'm having trouble seeing any way around it.

At the same time I am having trouble wrapping my head around Dad's present medical condition. One of the concerning issues is his bladder. He had a regular followup with his urologist this morning, and during a scan they determined that he has more fluid in there than he should. We are to go back in two weeks to determine if this is still the case, and if so we will have to talk about catheters.

"When mobility declines, bladder function can also decline, so going to an intermittent catheter, followed by an internal catheter is what we're eventually looking at," said the urologist. I was not ready to hear that. In a recent article I read about end of life issues, the writer talks about how we are unable to let go, and so we now have the ability to help a person eat, pee, poop, do all of the normal functions of a healthy person. And we do these things to prolong their life. When I heard the words of the urologist I suddenly remembered this article and thought to myself, "are we already there? Talking about end of life issues?" Alzheimer's being a terminal illness, of course I know what the end is. But because it's known as the Long Goodbye, I never stopped to think about where we are on that timeline. I simply envisioned a long stretch of one stage after another, one crisis followed by another, one new thing to be done, only to be replaced by another. But lately I have been hearing, if not in words but intention,"You must prepare yourselves." What does this mean? That we're on the final leg? How long does that leg last? None of Dad's doctors could give me an answer if I were to ask them, these things are so individual. It could be a year, it could be two, it could be even more. And yet we seem to be there, unless these last 2 weeks are just a jolt in the plateau. This is, I think, one of the biggest challenges in caring for someone with Alzheimer's. Not having even a glimmer of how long things will go, what to expect, the one practical thing I have done is contact nursing homes in the area, in order to visit them and get Dad's name on a wait list. His PCP strongly recommended this 2 weeks ago, because a wait list can be very long, up to a year or longer. I should have gotten around to it much sooner. But truth be told, none of us thought we'd be on this track so soon.