Mother: I barely call or speak to my mother at this time. My brain can’t fit in any more information, however, since I last saw you, here, the Hospice social worker who visits my mother, reported that Candy the aide had told her that there are days when my mother doesn’t sleep some nights. This reinforces my decision for fighting for the two-twelve-hours shifts so that someone would be working during the night. It is a pattern of two nights without sleep. She, Val, also reported that my mother, who is bedridden and barely can sit up, has been asking Candy to take her to the hairdresser. That’s about as cute as her wanting to write to my father to ask him out on a date, in the last post.

Let’s move on the the antics of the planet Mercury in its Retrograde, through November 3. Anything that can go wrong has gone wrong and here’s more of its manifestation: this occurs three to four times per year and can wreak havoc on sanity. It can cause delays of the new and push forth to completion those things that require completion. My keyboards go nuts, problems with wi-fi, actually, any electronics. I just saw that my printer did an unsolicited update and I am getting pop-ups on my computer screen that my apple computer can be damaged by this.

So, What has been completed: the acceptance for state aid so that we can get some help in the house. Last week proved to be a distorted mess. It”s a long story but let’s suffice it to say that by my reaching out to the social worker at my mother’s building a huge entanglement between two agencies vying for our business ensued. The wrong nurse came to do an intake,  the doctor unknowingly sent papers to two agencies, delaying the correct agency from moving forward and pushing the wrong one into control. I had to ingratiate myself with apologies to all involved, have the case closed by the incorrect agency—still waiting, and I hope each day that we make it to the next with the strange medical issues going on here.

 

 

 

The stair lift has been installed, but, I still have to make sure my husband can use it properly. It requires levers and rotating, the footplate and the seat in the correct position, once it reaches the landing. it is built like one of those European funiculars with rotating teeth that catch into a myriad of slots. Actually it’s a gorgeous machine and don’t tell anyone but it’s a kick to ride up and down. So we can check that off the to-do list.

I surrender!

 

 

Husband: Now, let’s get back to health. My husband of forty-four years has had every test under the sun in an effort to determine why he is in decline, and now, about one hundred-twenty-five pounds.  I have said before: it is horrifying. The muscle decline came on suddenly along with loss of appetite, occasional inability to stand, falling. memory loss and fog, affected auditory processing and comprehension.

~We have been to the Emergency Room where, several tests were performed during an eleven hour stay.
~We have had two video conferences with the gait specialist who felt, well, he’s sitting too much and not having PT. More drugs were administered.
~We went to the neurologist where muscles and nerves were tested with electrodes.
~We went to the lab where they took vial after vial of blood for testing of muscle disorders.
~We sat in the hospital for five hours during which time extensive MRIs of the brain and legs were taken.
~We went back to the lab where they took nine vials of blood and tested for various cancers.
~I contacted the brain surgeon who installed the brain shunt in 2016. I told him I would explore the possibility of rheumatology. He thought that was a good idea.
~We were sent to another lab by our doctor for another panel of every test under the sun: the results will not be available until next week, perhaps.

 

 

 

 

Nothing, nothing has shown up. The best hospital in New York City. The best doctors in New York City are scratching their heads in bafflement.

And so our doctor, whom we just saw on Friday, and I, looked at each other and decided to cut out the meds. I believe that the side effects of a Parkinson’s medication are indicative of an overdose of dopamine, and considering my husband doesn’t have Parkinson’s but “Parkinsonian symptoms” manifesting in his gait, (no tremors) what is the point?

So we are weaning off drugs. He feels a little better, he has more of an appetite.

Think about it: you take a drug, it makes your stomach upset, it ruins your appetite, now you have to take an appetite stimulant and you still can’t eat. You loose weight but maintain the usual dose. Now the dosage is too much for your weight. It’s a vicious cycle. It’s a killer.

Our doctor remembered that his wife’s uncle had a similar issue years ago: they put him on Parkinson medication which is the usual for any movement disorder: it made him worse and worse! Finally they took away the drug and he lived without it for ten years.

I do not know what the end result will be, but I do know that a person who used to love food, whose focus was on enjoying it with gusto, of finding it in restaurants, having the best, reading every food article in The New York Times and thinking about his next meal, deserves to eat even if he can’t walk. Or if he can.

Can you imagine being at your doctor’s office, a doctor you know for over thirty years, your spouse is in a wheelchair and can barely stand to get on the scale? The doctor says, “He’s so weak!”

I have been doing all the intimate acts you do not want to think about: toileting, bathing, dressing; it puts a totally different spin on a relationship. There is wear and tear on both parties. There is anger and resentment. The youth and verve are gone, there is nothing but attending to another person, hoping the next day will be better, somehow, that someone will figure out what happened overnight to change everything. There is confusion, fear, and worry: will the entire house have to be rearranged, possessions discarded to make room for a live-in aide. Will any aide who comes into our home carry the dreaded virus and sicken us. Can a stranger be trusted in every sense?

In addition, there is another enigma that has been going on for years and becoming worse: after dinner, meds or not, the inability to, for want of an easier term, maintain food. A reaction may not occur with a meal one night, and the same food might cause chaos the next night. Something is going on but what? Allergy? Organ? Dis-ease? How can anyone survive under these circumstances?

Will I survive this? You might be thinking that I am selfish, that I have no right to think of myself in this series of events, but I am grappling with total caregiving mode of my mother AND caretaking of a grown man. I am cranky and tired, I get hungry but have to put off a meal so I can make sure things are going well on another floor. I am tired of changing sheets and cleaning up-well, you don’t want to know. I have a new appreciation for the people who have been caring for my mother. I’ve said I could never do this but it seems to be all I do.

And I feel sad, very sad for this husband of many years who wants to maintain his independence and who I barely can recognize.

 

 

Total Non-Sequitor: Watch for Evan’s first (collaborative) New York Times Sunday Crossword Puzzle the first weekend of November.

 

 

📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

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