Take 1, Take 2, Take 3

Somedays feel like more than you can prepare for, but you do it! Then the situation takes a dramatic turn.

In the past months, we have gone from doctor to testing and back to the doctor. My mom had an episode. She woke up one morning having vision in one eye blocked by a “vertical blind” in half of the eye. No other symptoms. Regardless we jumped to attention. Fast forward two and half months.

It had been determined that my mom had a stroke, with only that symptom. In testing it was found that she had 70% blockage in her carotid artery. My 110lbs mom had never had any known issues with her arteries previously. The least invasive (and least risk) procedure was scheduled. Allegedly scheduled ASAP, it has now been 10 weeks since the original incident.

Mom was anxious but excited. Could improved blood flow to the brain have amazing results? It couldn’t hurt, right? It was the question on each family member’s minds. The day arrived and the procedure was underway. Due to ongoing COVID restrictions, I was asked to leave the hospital during the procedure. I received a call from the OR nurse. (insert stomach drop) She wanted to let me know that my mom was ok, however the procedure was not going as well as expected. The doctor was exploring additional tools in an attempt to complete the desired end result. Within the hour, the next call came for me to return to the hospital. The doctor explained to us that my mom’s carotid artery has a 360 degree loop in it. He had attempted to “push” it straight unsuccessfully. Shit. Why would I have expected anything different from my mom – always over achieving. Of course she has a loopy artery instead of a straight one!!

Deflated. Everyone processed this outcome differently. My mom was crushed. She had banked everything on this. I realize this wasn’t rational. Is anything about these dementias rational?? Depression and not wanting to get out of bed followed. Her husband completely didn’t understand why it was not successful. This translates to anger outbursts. For me, I was deflated. Glad that we have more options, disappointed that this wasn’t “the” answer we had hoped for. From my standpoint, I knew I would need to manage the different emotions everyone was processing. And mine. Additional doctor appointments to come. Introductions to new surgeon for my mom. Changes to the routine. Additional decisions. Next procedure = higher risk…

A week after the initial procedure, my mom and I sat in the performing provider’s office. He had consulted a vascular surgeon that would determine what the next procedure would be and perform it. The surgeon couldn’t see us for 8 weeks. Yes, we went from “this procedure needs to be scheduled As Soon As Possible” to “unsuccessful” to waiting to meet the next surgeon in 8 MORE WEEKS. (As any of you caregivers know, even getting the appointment eight weeks out took four to five days of phone calls and coordinating doctors offices by you! The appointment was just handed to you!)

I am going to go on a quick tangent – yes I am fully aware of this before I have even started it!! Obviously my mom has dementia. However even if she didn’t, she needs an advocate in the exam room with her. Your loved ones do too. I do not mean their spouse, this person is extremely close to the situation. Someone needs to be able to absorb, process and repeat what the doctor is saying/asking/suggesting. Then once they are home, helping them make an educated decision and implement what the doctor prescribed. Doctor appointments years ago seemed to be longer in duration, the process was less. Think about an appointment now –

*stand in line 6feet apart, mask covering your mouth and nose *check in through plexiglass (when even the most able bodied hearers struggle to hear) try and understand what the receptionist is asking for *then to the waiting room *finally get called back – the nurse is walking faster than my mom can keep up *my mom tries to engage in friendly chatter *the nurse is focused on getting through vitals not chit chat, vitals logged, she is gone *the doctor comes in quick questions, my mom can answer some questions or she looks to me as does the doctor *few more questions, quick physical exam and the provider is gone. *An average(for us) of 9 minutes has passed (after being called out of the waiting room).

As soon as I get my mom in the car, she asks, “What did the doctor say?” We spend the next 30 minutes going over the appointment. Without this post appointment review, my mom would have the paper print out of the next appointment and not much else. It all happened in a blur (regardless of how long the wait in the waiting room was). Think about being an advocate for your loved one(s). They remember slower exams with their doctor and being able to process all the information. Help them process the provider’s information for their health. Think about it. (This is not every doctor or every appointment, but an example of a new norm.) I am finished with my public service announcement 🙂

Eight weeks crawled by with my mom asking regularly when the appointment is. Her husband confused, believing the appointment and surgery were one in the same. Depression was “winning” with my mom as the days passed. Finally appointment day! Very anticlimactic. Vascular surgeon agreed that surgery was necessary. His office would schedule as soon as possible. (Those last four words are the ones my mom remembers.) We left the office and waited. As the daughter – I called the office after two days. They said they needed a signature from the cardiologist. I called them. You know the pattern. It was on a desk, waiting.

Push fast forward again.

We arrive at the hospital at 6:45am for surgery. Our household is on edge this time. The risks are higher. The neurologist made a comment days earlier, “going forward, you should evaluate every procedure based on quality of life to determine necessity.” It just hung there in the air. It has yet to leave my mind. Pre-surgical prep began and was completed. In walked the surgeon. He proceeded to tell us that surgery had been postponed because they hospital did not have all the equipment they needed for the procedure. They only had enough for one surgery and he had just walked out of that one. The surgeon said his office would call with a reschedule date as soon as possible. Take two failed. We went home.

The surgeon’s office was responsive to my calls of frustration. Surgery was rescheduled for 4 days later. That is now tomorrow. I have had nightmares every night regarding this surgery. I have prayed. Outwardly one would think all is calm. Inwardly, I am fretful. I think, how many “signs” should I be given before I heed them. Are these signs? Is this going to be my mom’s death? Am I sending her to her end? Can improving the blood flow to the brain be a bad thing? I have consulted my sister and my mom’s sister. We are all on board. Importantly, my mom is on board. She believes this will be life changing. She has waited for months for this procedure. Tomorrow we find out.

To all those who are supporting caregivers, know that everyday they are making decisions. Some are easier than others. All are made with love for the patient. We question each decision. Inside and out. Forward and backwards. I never want to be in the situation where I say “what if I had only…” This is a huge weight. One that I already carry because I have children. The weight is amplified when you are then tasked with caring for a parent. Be gentle. Pray for them and the people they care for. Caregivers carry more than you know.

Pray that we all are open to hearing the Holy Spirit that guides us.

Third attempt at surgery is tomorrow. It is also my mom’s 20th wedding anniversary. She buried her first husband on their 25th wedding anniversary. (Not relevant, but it just sits in my mind like a weight.)

Pray for all the caregivers and their charges.

Thanks for being here with me,

Marguerite

“Kindness begins with the understanding that we all struggle.”

Charles F. Glassman