For those of you who know me, you know I maintain a level of personal privacy. This blog will be different; it will serve to illustrate why my health has been a bit bizarre. I am not allowing public comments on this blog but feel free to get in touch and share your feelings via email. (SansSouciBlogs@gmail.com).

As many of you know I have been on a journey, a relationship journey with my elderly mom who is now ninety-eight, whose mind is pretty much intact, who stands up for herself (at about 4′ 8″) and who continues to be one feisty gal. I am considered to be the caretaker, though I am not with her on a daily basis, and I see her far less than I used to; but I am the “one in charge” and field phone calls, complaints, communications, make appointments. I am somewhat of a peacemaker, I have been part of a taxi service to medical appointments.

Sometimes I don’t like myself, I lose it. I lose patience. I believe my mother understands. She knows me well.

I live in a series of parallel Universes that encompass different relationships, that different people pass through, in and out of. So let me introduce the parallel Universe of my personal world.

Red, White and Blue and the white face of fear of the caretaker

When my mother needs to see a doctor, my husband and I take her with her aide. Depending on which aide is on duty that day, I might end up putting this wheelchair into the trunk of the car. We go back and forth to pick them up, deliver them,we sit for endless hours in waiting rooms, accompany her during treatments.

I remind myself that this is my mom and not my child.

Blue

The wheelchair goes on top of the rollator which is already in the trunk of the car.

Red

 

The rollator belongs to my husband.

Several years ago, I noticed some strange differences in my husband’s functioning: he was depressed, beginning to look fragile, lose muscle mass and weight, had balance issues and his gait was changing. All this was worrisome to say the least; we went to our doctor and to a neurologist. An MRI of the brain in 2/2015 did not reveal anything significant, in fact the results were deemed age-appropriate. OK, so what do you do? He began physical therapy. I do believe the therapist was not well-versed in the latest treatments and did little to change or help the situation. My husband took a few falls both in the house and outside and my care-taking was now divided between two people, my mother and my husband, and my anxiety level began to rise.

We found and went to a wonderful physiatrist by the end of 2016 who works with a Physical Therapist, a Ph.d. It was believed that my husband had one of many forms of Charcote-Marie-Tooth syndrome, a degenerative, auto-immune disorder of the lower legs. Apparently there are several kinds, but this was still an enigma and within a few months, my husband began to rely on a cane. His balance would fail and his gait, no matter how many cues, “take big steps, push off with the heel,” would end up in a scraping, off-balance shuffle. When walking outside, he could barely walk a few steps and then would have to stop. He could not walk up or down little slopes. If he were walking down a slope he would break into a run and not be able to stop. His muscles would become so fatigued that the possibility of a fall was horrifying.

In the meantime, I had been having terrible migraine-vertigo issues that would come on out of nowhere. I decided it was no longer safe for me to drive. If an attack came on I would feel like I was hurtling a million miles a minute through space, it was, is, horrible. My husband does the driving. He is used to being totally independent as was I, and our life has metamorphosed into a co-dependent mutual reliance.

He graduated from a cane to a rollator; he recognized that a cane barely made a dent in the problem. Recently we went to Manhattan to meet a friend at a museum on a very hot Sunday. He drove. (For some reason when he is sitting he is fine). That day it was impossible to park and old habits die hard. We circled around and around for blocks, finally found a spot a good distance from the museum: two avenue blocks and a street away. He started off walking, “managing,” but with every step and crossing each street he became weaker and less coordinated. He refused to let me help him, he was determined to do this himself and maintain his independence. By the time we got to the block of our destination, about fifty feet from the entrance, the rollator went flying and he was flat out, face down on the pavement. I forgot to tell you: he was also wearing leg braces.

I can’t convey my horror, my terror, my shock. I was mortified. I couldn’t budge him. But thankfully, and by the grace of whatever, his face, teeth, new glasses were intact. A woman ran over to help. A man, carrying a large package; an angel, asked if we needed help and when I assented, he lifted my husband back on his feet.

My husband insisted he was fine. He immediately put it behind him. He didn’t want to discuss it.

I have been in shock since.

It took a couple of weeks for his knees to heal, but the experience just boosted my anxiety level a few hundred more points. The reality is: it’s all on me. The reality is: the decline is tremendous over the last year.

We went back to the original neurologist who many people I know have lost faith in including myself. He decided that my husband might have Parkinson’s disease, and even before the new MRI, put him on a Parkinson’s medication, his theory being, if it works that must be the diagnosis. I take great exception to this kind of “empirical” diagnosis, pumping a brain with dopamine when it might not be needed.

Now for this– I find the following very strange: By the following Thursday, almost a week later, we got a call, “did Dr. H. give you the MRI findings?”

“No.”

When he finally got on the line there was NO mention of Parkinson’s. But there was mention of Hydrocephaly (water on the brain). When could we come in to view the MRI’s? We went the next day. Now, let me interject a tale about this doctor. He is considered TOPS. Everywhere you look there is a top-doctor plaque from Castle-Connolly–in every exam room, in every office, stacks of them. (I later found out that the Castle-Connolly Organization sells them to doctors for about $1,000). This doctor, I later learned, misdiagnosed several of my friends. AND, if your appointment is at 10:30, you will be lucky to be seen at 3:30.

I stopped making excuses and began to get angry.

I could clearly see that there was an abnormal MRI yet the report stated there was not much change but there was some deterioration. The doctor couldn’t find the previous MRI. But, there was a screen in the office that he began reading from, comparing the current MRI to. And if it weren’t for my quick wit, my husband’s new MRI would have been compared to the report on the screen: a report that belonged to ANOTHER patient.

Dr. H. wanted us to make an appointment for a spinal tap in the office. I remembered what our physiatrist said, that this could be dangerous under certain circumstances. I looked at him and said nothing, just looked at him. “OK, he said, here is the name of my friend, Dr. M. who is a neurosurgeon. I want you to go to him and see what he thinks. Just tell him ‘Dr. H. is crazy and wants your opinion.”

When we got home I looked up this Dr. M. on Google and found he was a pediatric neurosurgeon. Does this make sense? Let’s review: Dr. H. he had the wrong patient’s chart up on the screen, couldn’t find the original MRI from 2015, and now he wants to send us to a pediatric neurosurgeon? I don’t think so. So much for your Castle-Connolly plaques. Damn straight: Dr. H. is crazy. His factory-run practice (from 7:00 am to 11:00 pm) will no longer be tolerated.

It’s time to stop the madness.

Next: I had tried to make an appointment with a gait specialist and couldn’t get one before September 27th. At the time that was about three months away. Last Monday, the phone rang; it was a call from this neurology group, asking if I would like an appointment with a neurologist who was new to the practice, and we could be seen in a matter of days.

I took the appointment. Unlike at Dr. H.’s office, there was no wait. The doctor was experienced and examined my husband for a long time. She noted his strange gait and how he didn’t really fit into any pigeon-hole of a diagnosis. She was the first neurologist to examine his feet and to note neuropathy despite his not having diabetes. She also wanted to have a spinal tap done but would have it performed in a hospital setting. Still, no answers and no solutions.

We subscribe to a “concierge” physician. He knows us over thirty years. Through his network he requested an appointment at a “top” neurology department at a “top” hospital, New York Presbyterian which is affiliated with Cornell-Weill Medical Center and I believe Columbia University, all in Manhattan. It ranks third in the country. Not the mayo Clinic, but close. The appointment is in a week, and I am hoping– no praying that the specialists there can come up with some answers. And hopefully, solutions. Our physiatrist trained there and says it is the best of the best in terms of people and equipment.

It is one thing to be the advocate for an elderly parent. It is another when one must advocate for a spouse and even another thing when one must advocate for oneself; to make time to take care of one’s own needs. I tend to put myself last which we all know is not good. This is a very painful journey, observing the decline of people around me. It is an excruciatingly lonely journey; the illusion of security is out the window. The mind conjures up the worst possible cases, creating the worst anxiety, robbing one of sleep and appetite. The refrain of the new norm melody of life is “I am in charge, it is all on me.” The most difficult thing to deal with is the thought that while I am taking care of other people there is no one to return the favor.

I think back to carefree days when health was taken for granted. How lucky I was in the past: I worked, traveled, raised a child, performed the quotidian tasks, bitched, moaned and commiserated and celebrated with colleagues, retired, survived a major illness, saw a child through two degrees, and somehow I got here, to this place, this moment in time at this age, where everything around me changed, evolved to this, to this new norm, at a place where I was kidnapped and left. A place where each day feels tougher to get through, yet I do, even if it is just going through the zombie motions. Everything around me seems to be askew and out of phase, blurred and confusing. The vision problem that began about a month ago where no optical issues nor neurological issues were found, my physiatrist attributes to stress.

Somewhere, in my mind, there is a place where I dwell. My mother takes me by the hand and says, “it is all going to be alright.”

 

The story continues here.