The Third Time

I’ve done this three times now- listened to a doctor tell my spouse that she was going to eventually die from a disease. The first time Linda fooled everyone- she beat breast cancer. That one IS beatable. Sometimes. The second time it was pulmonary fibrosis. That was a no win, no foul. You can’t get around PF. Linda battled valiantly, but nobody wins that battle. She died in my arms.

Today it was our turn with Casper. I’m not sure she even realizes it yet. She knew she was missing all the answers on the MMSE (Mini Mental Status Exam). She knew she was falling over all day. She even interrupted the doc as he was doing the exam to tell him what symptoms she wanted fixed. After the MMSE he patiently (way more patiently than usual) listened to her wishes, and gently explained that there are no medicines for loss of balance. That he can see and hear the memory loss. That he’s afraid of bigger and worse falls with broken limbs. And then he told her as gently as he could that this is bigger than Parkinson’s. This is Diffuse Lewy Body Disease, and in his research it’s his belief (and mine) that this is related to PD but does more damage. That there is no medicine. There is no research she can be part of at this point. Right now it’s a matter of protecting her from herself and injuries as she gets worse. I am pretty sure I saw some comprehension as he was talking, but it’s hard to tell sometimes. Ten minutes before that it was October and Winter even though it was 109 degrees outside. We were in a non-existent county and the wrong city.

He did offer a new med for the psychosis that is a hallmark of this disease process, but with weekly (!) blood draws, weekly prescriptions based on the blood draws (can you say co-pay?) and a chance of sudden death from the medicine. Doesn’t that sound fun? Thanks God that when we got home we had an offer of home blood draws to cut the stress and travel for Casper. I love nurse friends!

We walked next door to the lab, with Casper shaking off my arm as she went sideways over and over, after another patient fell backwards and had to be caught by her family on the way into the Traubman Center, the Movement Disorders clinic where Casper is seen. As we walked I had thoughts about writing letters to all the neurologists who misdiagnosed, who would not listen to my descriptions or read the typed notes I had of the symptoms and history. I mulled over their inexperienced staffers doing the MMSE, where this doc does his own, thoroughly and easily. I tell myself that the outcome would be the same. This is yet another unbeatable disease joining the list of diseases I hate. But this one is especially cruel. The patient knows there is something hugely wrong. The family does too. But the professionals around them won’t hear what is said. In our case it was “this is depression.” In reality, depression is part of the disease itself, as the brain is depleted of precious neurotransmitters that create depression as they disappear. She was depressed- but that was not why she was tired and confused- she was tired and confused because she was demonstrating the disease process, which includes depression. And in their process they made her feel crazy and useless, the two worst feelings for someone trying to cope with dementia.

So we had the long ride home. Past the signs advertising “Active Lifestyles for your golden years” and “Medi Spas for a brand new golden you” and “You deserve a long and happy retirement.” I imagined deploying explosives. We passed “memory Care Units with the best care for your loved one.” I hit the gas pedal. We watched videos of active seniors exploring underwater caves in the lab. I read a magazine. Casper is at least receiving her Social Security. Linda died the month before hers arrived. She was in the special five (not standard six) month “waiting period” after qualifying for terminally ill people. But a long and active retirement? We are once again not going to have that. I had to text her sister with the update. Then we drove in silence.

Dinner out? Nope. PB&J please. Casper style. Mix the ingredients and then spread them on the bread. We passed Palm Springs and the fabulous array of restaurants to go to the grocery store for white bread, Diet 7-Up, and cat food (not for us, thanks). We sent the kids out for pizza after a long and difficult day with the cousins. We will eat in our room, where Casper won’t fall, and recover from today. And I will pray, hard, that we can get past the hard emotions and do this with grace and dignity once again. Casper has helped many people leave this world in comfort and dignity. She was by Linda’s side. We are nowhere near that yet, but we are clearly heading there. Today there were not reassurances that this won’t end in hospice. Today we were warned not to let her fall and literally break her neck. And so we begin again. No miracles. No potions. Caring, and loving, and making special moments happen as we see sunset coming whenever it might. It could be 20 years. It could be much sooner. And it will be together.