I began this post on March 18th, and then life got incredibly busy, and I got incredibly overwhelmed with everything. My heart is full, and I must write.
It's time for me to face the truth. Billy is getting worse, and he's not okay. I've ignored the truth for a while because it's just too hard to face, but sometimes truth slaps you in the face. I have been blessed for more than two years in being able to take him with me on Saturday evenings, and that ended about two months ago. My Pollyanna side keeps thinking that when it gets warmer and stays light for longer, I can take him with me again as though warmer temperatures and lighter skies will help him know how to get into the car again.
For a while I would take him out of the memory unit and just walk the halls of the nursing home for a change of scenery. He doesn't want to leave that secure area now. The staff told me he gets upset when they come get him to weigh him each week.
I usually arrive at the NH between 4:30 and 5:00 to feed Billy supper. The routine for the residents is to gather them all into the dining area of the unit beginning around 4:15. It takes a while to get everyone changed and cleaned up for dinner. Billy is nearly always sitting at the table watching TV when I get there, but today was different. I got there around 4:35, and Billy was still fast asleep. The evening staff had come on duty at 2:00, and he was already asleep, so they didn't know how long he had been in bed. It takes two staff members to get him up and changed now because he struggles with balance. After getting him ready for dinner, the aides got on either side of him and walked/drug him to the dining area. The scenario reminded me of two parents trying to walk their toddler while his feet go in uncontrolled directions, but he's a 57 year old man.
The first few weeks of March, Billy had several falls hitting his head during most of them. Several x-rays were done with no fractures noted, but the radiologist recommended a CT scan. The physician's assistant who sees residents each Monday at the NH noticed a significant decline in Billy's mobility and balance. Many of the big changes in Billy have taken place gradually, but this was rather sudden. He's been doing the slow shuffle for at least a year now, but he could stand on his own and walk. From what I understand he is a little more able to balance in the mornings, but as the day wears on, he cannot get out of bed alone, and he cannot stand. Two people get him up and change him, and then they place him in a wheel chair.
Last Friday when I got there, he was in the shower. Our favorite aide, Lameka, was showering him. She rarely works in the memory unit anymore, so she had not seen Billy in a few weeks. I waited on her to get him dressed, and she came out of the shower to get help standing him up. She looked at me and said, "I had no idea he couldn't get up or stand anymore!" I told her the change had been rather sudden to us. The good news is that he still seems happy. He smiles often and enjoys our visits.
I've been debating the whole CT scan event. He has to be taken to a hospital to have it done, and I can no longer transport him, so the NH could take care of that. When the doctor reviewed the orders from the PA, he questioned Billy's ability to lie still during the test. I asked the purpose of the scan, and it seems that they are looking for a cause of this big decline. They've done the usual tests - no UTI and no imbalance due to meds. The scan would show any masses, any strokes, or anything more abnormal than the atrophy he has from the Alzheimer's Disease. The scan would also involve a large co-pay that would be difficult for me right now. I made the decision today that I will not consent to the test right now. If the test were to show something in addition to AD, what would I do? I have no desire to inflict pain or anxiety on Billy. Just the trip to the hospital would most likely cause him anxiety. If the scan were to show a mass, I would not choose any radical treatment for him. A stroke? What would be done for that? More meds most likely.
I've wondered if the medical professionals at the NH are just unfamiliar with early onset AD. I usually assume that new behaviors are just an indication of the progression of the disease. I appreciate the concern and the desire to know, but how would that change things? As I write this I hear myself sounding a bit like I don't care, and of course I care a great deal. I know that when Billy was still articulate, he made it clear how much he hated enduring all the tests and questions; and he would be more anxious and nervous than ever being taken to the hospital and being told to be still for 30 minutes which he would not understand.
Did I make the right decision? I feel okay about it, and I'm at peace. That may change tomorrow, and if it does, I am pretty certain we can have the scan done.
So there you have it....I'm so sad that I can't pick him up on Saturday afternoons and take him with me. In order to take him into the courtyard, he has to be put into a wheelchair, and that involves catching 2 aides who can assist. I'm hopeful that he can come home for Easter day using a transport system, but I'm unsure of that at this point. We trudge on.