40

 

Dr. Carter’s office called first thing this morning to reschedule Dad’s appointment for this afternoon.

Marcy got here with no problem, though she said it was “kinda tough” getting up our driveway because it was “a little icy.” Even though it has stopped snowing, the temperature has dropped and it is bitter cold. The lane and our driveway are still covered in snow, and with the lower temperatures, they are going to get even icier.

Tony wasn’t able to get here yesterday to clear them but called this morning to say he would be here soon. No doubt the main roads have been cleared, but getting to them in the van may be a problem because of potential underlying ice. The van isn’t four-wheel drive, and I shudder at the thought of our setting off, only to get stuck.

“Marcy,” I call out as I’m coming into Dad’s apartment.

“In here,” she says, and I follow her voice to his bathroom. She’s cleaning the tub in preparation for giving him a bath.

“Do you think we can get Dad in the Tahoe and get him to the doctor? That heavy four-wheel-drive SUV in low gear is pretty reliable under all road conditions.”

“Sure, I guess so. But does he really need to go? He did good eating his breakfast this morning.”

I hesitate before answering because she might have a point. “Let me go check on him.” I head into his bedroom. Déjà vu. He’s back to limp-necking it in his wheelchair. I wonder how she’ll even be able to bathe him. In the interest of safety, I resign myself to staying and helping. But his recurring lethargy helps me make up my mind.

“He needs to go to the doctor,” I tell Marcy, and explain that although he had a good day yesterday and ate his breakfast this morning, he has sunk right back into a stupor and remains there.

“That fast?” she asks. “He was fine ten minutes ago.”

“Even more reason to get him to the doctor.” I tell her it’s good for Dr. Carter to see his state of sluggishness rather than have me describe it. I’m doing more to convince myself than her, but she’s giving me her full attention, which means she sees my distress.

“Well then, don’t you worry, I’ll get him ready to go.”

“Let’s not bother bathing him, Marcy. We’ll put him on the bed and give him a sponge bath. David and I bathed him yesterday, so a sponge bath today should be good enough.”

I just want him to get stronger, to get better, and to return to his “old self.” To that end, I also want a prescription for speech therapy. Dr. Baird had suggested I get it from Dr. Carter anyway. Plus, his six-month Medicare-eligibility for physical therapy is coming up, and I want to get a prescription so Medicare pays for Adam and Jennie for a while.

With our bank account now replete, I’ve been paying them to keep the sessions going. They haven’t been able to see Dad over the last week and a half because the Mystic Mountain Lodge closes at the end of October, but reopens for the last two weeks in December. There are a plenty of holiday travelers looking for a posh place to enjoy a white Christmas, and part of Mystic Mountain’s allure is the spa that Adam and Jennie run there.

Since the hotel has one hundred percent occupancy during those two weeks, Adam and Jennie have been booked from morning to night. Now that the holidays are behind us, I’m hopeful they’ll be able to resume his three-times-a-week therapy schedule. I’m desperate to keep Dad moving, since I—and they—associate ambulation with health.

During these winter months they spend more time doing therapy with hospital and rehab patients. They’re a hard-working couple, putting their special skills to good use in several ways. They weren’t able to have children, though they wanted them very much. Adam once told me that having a successful business was no substitute for not having children, but they were able to devote more time and energy to growing their practice. It’s grown enough to keep them busy year-round.

Adam and Jennie have been on a waiting list for an adoption for almost five years. They’re both in their mid-thirties, and the last time I saw Jennie, she confided that she and Adam are worried if they don’t adopt soon, they’ll age out of the ideal range for adopting a baby. As she said to me, an adoption clock can be every bit as nerve-racking as a biological clock for those who want to start a family before it’s too late.

On the other end of that family cycle is the biological clock that counts down to the final minutes of one’s life here on Earth. Family is what teaches us about love, from the very beginning to the very end of life. I desperately want to hold on to the earthly bond of love that is my dad. He may need me, but I need him more.

I’ll fight for every moment I can have with him. It’s self-serving of me, I know, but it’s part of the love gene I inherited, and I won’t deny its power over me.

 

 

It’s slow going on the snowy roads to Dr. Carter’s office. I look over and see Dad is fast asleep, his chin bobbing against his neck pillow. This is why I’m hell-bent on getting him to the neurologist today. His sleeping so much throughout the day is bound to have an effect on his sleeping pattern, and may cause him to lose his ability to sleep through the night.

For years, Dad has been subjected to annual dementia evaluations. His first evaluation was shortly after Mother passed away, when he became uncommunicative and disoriented. Grief no doubt played a part in that, but I still felt he needed a mental status checkup.

Dad had been diagnosed with Parkinson’s three months before Mother passed. We were sitting by her hospital bed when I first noticed he was doing something odd with his fingers. He seemed to be rolling a pill or another small object between his thumb and index finger. I didn’t call his attention to it, but I asked one of Mother’s nurses what it could mean. She told me it was a “pill-rolling tremor,” and that it was an early symptom of Parkinson’s disease.

I remember my heart rate speeding up and my mind reeling with thoughts of what this was going to mean for me and my family. As complicated as my world was with keeping Mother alive, it was about to get even more complex as I managed Dad’s healthcare.

I took him to a highly regarded neurologist in Florida, Dr. Monica Bass, who confirmed he had Parkinson’s. It could not be cured, but it could be eased with Carbidopa/Levodopa, a combination medicine used to treat symptoms of Parkinson’s disease. She started Dad on a low dosage and gradually raised it until his symptoms improved.

Soon after Mother’s passing, Dad became subdued and had trouble expressing thoughts. He also became more forgetful, and while much of that might be attributed to losing the love of his life, I had learned Parkinson’s could also cause dementia. If it’s not one thing, it’s another.

When I described these new, worrisome symptoms to Dr. Bass, she began diagnostic cognitive testing. She gave Dad the Mini-Mental State Exam to determine if he was aware of his symptoms and if he could remember a short list or words and instructions. That test also measured the strength and range of his everyday mental skills.

Next was the Mini-Cog test, a very brief test in which Dr. Bass named three words and asked Dad to repeat them back. Then she had Dad draw a clock. Then she asked Dad to repeat back the named three words.

Based on his medical history and performance in these tests and others, Dr. Bass assigned him a clinical dementia rate of one. With a score of zero being normal, and a score of three indicating severe dementia, Dad fell into the mild range.

As Dr. Bass explained to me that day, dementia and Alzheimer’s disease are not the same. Dementia is an overall term used to describe symptoms that impact memory, performance of daily activities, and communication. Alzheimer’s disease is the most common type of dementia. Alzheimer’s is responsible for about fifty to seventy percent of dementia. She specifically diagnosed Dad with Alzheimer’s disease because she believed his symptoms would get worse over time, affecting his memory, language and thought.

Alzheimer’s disease are two words you never want to hear when it applies to you or a loved one, and nothing can prepare you for the impact of those words. You know your loved one’s quality and length of life are on a downhill course, and there is no stopping it, no curing it. There’s only the possibility of slowing it through management of its symptoms with drugs and various therapies. If you’re a person who likes to be in control and who believes she can manipulate things to her liking, as I am, it’s a painful reality to realize just how much control has been taken from you.

The next phase of my being a health care surrogate began with that diagnosis. I thoroughly researched treatments and medications that might ward off further decline. Keeping his Parkinson’s and Alzheimer’s symptoms under control required frequent doctors’ visits to tweak the type and dosage of medications. At that time, his diabetes was still managed with Glyburide, an oral medication. Carbidopa/Levodopa helped control his Parkinson’s symptoms, and Exelon seemed to yield the most positive results for his Alzheimer’s.

I accepted Exelon as sufficient until a friend told me about a German drug called Namenda. It had shown promising results in Europe but had not yet been approved by the FDA for use in the United States. When it was approved in 2003, it was only for use in treating advanced stages of Alzheimer’s. The FDA rejected the manufacturer’s application to expand approval to include mild Alzheimer’s.

Nevertheless, I was in Dr. Bass’s office the day after FDA approval. She agreed it was worth a try and prescribed it for “off-label usage.” It’s legal for doctors to prescribe drugs for unapproved uses, and I was grateful she was willing to treat Dad’s Alzheimer’s aggressively.

To this day, I believe adding Namenda to the Exelon slowed the progress of Dad’s Alzheimer’s. I’ve taken him for annual testing, and not until 2009 was his clinical dementia rate raised from one—mild dementia—to two, moderate dementia.

Now I’m worried Dad is moving toward severe dementia. If that’s the case, he may lose all ability to communicate. When he’s awake, he still has control of his bladder and bowels, but with severe dementia, that will change. He may even lose his ability to sit up in his wheelchair or hold his head up.

What a cruel disease this is! It steals everything from every corner of the body. Sometimes it’s stealthy and slow developing. Other times it’s like a bulldozer, plowing through the body with determined destruction.

But always, whatever its method and pace, it ends up stealing everything, right down to that precious last breath.

If I’m going to thwart its progress, I need to be armed with facts and get some direction. I hope whatever Dr. Carter has to offer in today’s visit includes access to a cache of both offensive and defensive weapons.

We won’t win the war with Alzheimer’s, but Dad and I can continue to fight for small victories along the way.