Mom almost died in April. We still don’t know why she had to spend 2½ weeks in the hospital then, but we were sure she was just about gone on Easter Sunday. She was ready to go, too. So when her eyes opened that morning and she saw me sitting there, I could see the word forming on her lips: damn.
I have been my parents’ eldest son for fifty-nine years, and their caregiver since 2005. In the past six years I have chronicled their conditions and stories in ElderBlog and, since Pop’s death in 2010, have focused this writing almost exclusively on Mom. A quick recap: medical professionals had diagnosed her as having Parkinson’s Disease and Dementia. We’ve seen plenty of evidence of both over the years; had no reason to doubt. And each disease is degenerative.
But Mom began to improve shortly after that fate-less Easter Sunday. After some weeks in Nursing Rehab, she returned to her own private Assisted Living room and from there continued her recovery. By the time her big 80th birthday party came around in July, Mom was fully able to appreciate all the people and plaudits that came her way. And since then, she has shown still increasing cognitive ability. Her long-term memory was always good while the short-term was not. Now both are good. She’s keeping up with the news and performing complex tasks routinely.
There were times in the past when I’ve allowed myself to wonder about Mom’s major medical maladies, usually only for a moment. Then it’s back to regular programming. But since about June, I’ve increasingly doubted the Parkinson’s diagnosis. After a number of years, you should be seeing other conditions forming as a result of the medication. They never did. And Dementia doesn’t get better. So how do you explain why Mom is able to do math in her head?
I’m not claiming miraculous healing, though the fact that our bodies work at all is a miracle in my own mind. But in the past several months, it has become harder to reconcile the diseases with the reality: Mom is doing great. I’ve allowed myself to wonder if she needed to be under the constant care of medical staff in an Assisted Living situation.
Then, two weeks ago, Mom announced to me that she felt able to live independently. After a moment’s surprise, I agreed.
Please understand that I only want what’s good for my mother. As her caregiver, it is my job to encourage her compliance with the best counsel of her doctors. At the same time, it’s my job to defend Mom against medical mis-judgments borne of lack of information or due consideration. But I’ve been conditioned over the past decade or more to think of Mom as deteriorating. And it’s been six years since I had to learn about the several levels of elder care. So our agreement about her abilities now required a re-loading of old data into my immediate mental reach.
The next level up for Mom is Independent Living. This is where you live in an apartment-style place, get one big meal a day in the dining hall and prepare the rest yourself. The setting for this is often a Continuing Care Retirement Community (CCRC), where Assisted Living, Nursing Rehabilitation, Skilled Nursing, and sometimes “Memory Care” (Alzheimer’s) are all together in a campus-like series of buildings. These levels of care can also be found in different combinations, or even separately.
From past experience, I felt it necessary to find a complete CCRC. The reason: if Mom ever needs a higher level of care, the CCRC guarantees that a bed will be made available to her. I don’t have to scramble all around tarnation looking for one.
There are half a dozen CCRC’s in this county and, to my astonishment, each had single-bed Independent Living apartments available. (My experiences over the past six years have shown that beds of any kind are very hard to get. But because of the economy…) I screened them down to two, and went to visit one.
“Rustic Acres” (a pseudonym to protect Mom’s privacy) rests in a pastoral setting in a tiny town half an hour north of here. The building in which I found the ground-level Independent Living apartments looks like the nicest deep-woods lodge you’ve ever seen. I spent a few hours there on Saturday, and I brought Mom there on Monday.
She loved it instantly.
The facilities and opportunities available to her here are impressive and plentiful. Before we’d ever expressed intentions of moving Mom into the place, residents welcomed her and told her she’d love living there. We were treated to lunch in the common dining room. Her fish and my meatloaf were as good as home-made.
The apartment Mom selected has a bedroom, living room, kitchenette, full bath, and lots of closet space. She’ll have more than twice the number of square feet as she now has in Assisted Living. And she has a screen door to…
…a porch; a huge, private, covered porch. From there and from her windows, all Mom can see is a lovely lawn and a deep forest. We were told that wild animals are frequently present.
Mom claimed this place for her own. She’ll want a rocking chair on the porch, of course. But that’s for guests. For herself, there will be a cushioned rocking couch where she can sit and read or just lie down and bask in her beautiful surroundings. Mom thinks she’s hit the lottery. I think she’s right.
Why is it called a medical practice? There may be a tighter Greek definition, but the popular definition is that medicine is not an exact science. Sometimes, a diagnosis can be made directly from a blood, urine or physical test. Sometimes, the practitioner has to work through a process of elimination. Sometimes, it’s trial and error. Sometimes, the patient responds to a medical solution; or not.
And sometimes, you just plain get it wrong.
There may be a dozen reasons for Mom to develop tremors. When the neurologist examined her years ago, he came back with a diagnosis of Parkinson’s. Maybe the same reasons – or a whole ‘nuther set – are responsible for Mom’s declining cognition. When a specialist examined her, he came back with a diagnosis of Dementia. Each diagnosis is for a degenerative disease. Dementia doesn’t clear up like a cold; it sticks with you and deepens. You don’t get better from Parkinson’s; you get worse – and then you die.
One of a number of drugs is prescribed for Parkinson’s patients. After a few years, certain negative effects should result from the combination of disease and medication. This never happened for Mom. And she hasn’t tremored for a couple of years now.
People who once couldn’t choose between Taco Bell and Chipotle don’t just wake up one day and start working through complicated logic problems. But Mom’s ability to do exactly that has been strengthening for some months now.
What can we deduce from this? Nothing. We’re not doctors. So I took Mom to her beloved, long-time internist. We had three questions: 1) Can you certify that Mom is capable of living independently? 2) Parkinson’s? 3) Dementia?
The doctor, who has the benefit of knowing Mom really well to begin with, did his assessments and came back with confirmation: ‘Yes, she’s capable; Dementia, not so much; and Parkinson’s? Let’s not be ridiculous.’ This, by itself, was cause for celebration. To learn that there isn’t a dark cloud hanging over you after all is a wonderful thing. Mom’s medications were then examined, several were lopped off, and now she’s got less in her system to slow her down.
It wasn’t easy getting here. It took a lot of patience and lowered expectations. It can be accurately said that Mom has never had it as good as she’ll have it at “Rustic Acres.” World War II interrupted what should have been a normal childhood. Transplantation to America presented new challenges. A fifty-nine year marriage to a less-than-stellar husband tarnished what should have been a full and happy life. Then medical problems piled up in old age.
It took a long while for Mom to find her self after Pop’s passing. But she has now found enough of it to be able to claim independence. And the turnaround in her health is nothing short of remarkable. Putting it all together, she’s ready to take this next big step.
So early next month, we’ll load up a truck with her belongings, pick up some things we will have set aside at the furniture store, and move her into a new life of freedom and happiness. I see her thriving and growing; enjoying life on earth almost as much as she’ll someday enjoy life in heaven.