Friday, July 25, 2014
One of the many things that came out of this was that medical personnel need to avoid the use of medical jargon when dealing with families. I wholeheartedly agree with this. Things like acronyms and abbreviations of medical terms tend to exclude those who don't understand the reference. Medical terms are necessary, but the jargon that accompanies them is not.
One presenter also warned against the use of "numeracy." I had to ask the woman next to me what that meant. It is defined as "the ability to understand and work with numbers," and from context I understood it to mean that medical people need to stop communicating in numbers when speaking to families. The whole idea of including families is to open the two way lines of communication and using stats and numbers can preclude that. Many folks cannot comprehend the numeracy and therefor lose the message being conveyed and cannot ask relevant questions etc, which shuts down meaningful communication.
I smiled to myself because I remember calling a doctor out on this- even though I didn't know what it was called - very early in Maggie's life. During her course in the NICU ( oops, that's jargon right there, that's the Neonatal intensive care unit) the doctors were trying to convey Maggie's situation. While I don't remember the numbers specifically, the conversations went something like this.
"only 1 in 100,000 babies are born with this, but of that .01%, 3/5 will have XXX complication. (Maggie had it). Of those with XXX, 2/3 will have YYY complication (Maggie had it) of those with YYY, 1 in 7 will have ZZZ complication. (Maggie had it)
I was completely lost after the first statistic and told him to stop. I said, " I do NOT care how many people DON'T have this. I get it, it's rare. She's the 1, She's ALWAYS the one. I'm going to buy her a lotto ticket because she's ALWAYS the one. I just want to know what the plan is to deal with it."
I shut down the numbers game and focused back on straight communication, mostly because I needed to understand. Seems I was just 20 years ahead of my time.
And Maggie proved early that she was One in a Million.
Monday, July 21, 2014
Monday, July 14, 2014
Obviously there have been major changes in my life since Maggie passed away 5 months ago. I am still adjusting to all of them and suspect I will be in one manner or another for the rest of my life. After caring for someone 24/7 for 20 years, it’s difficult to simply switch gears. Caring for Maggie and/or managing her care is what I did, it’s who I was. Now I have to define myself differently and figure out where I fit in a world without her. It’s difficult and I am still floating down the river waiting to see where it takes me. Sooner or later I’m going to have to start kicking toward some shore, but I haven't figured out where to land.
The big changes are easier to keep at Bay because people understand those. Everyone gets that losing a child is a life altering event. Perhaps what people don’t understand are the thousands of little changes that we face every day. These are like painful little reminders of the loss and the big changes. The little ones are more personal - not in a private kind of way, but more individual. I might be the only one that notices them. Steve, Eddie and Tim undoubtedly have to deal with these too, but the little things are not always the same for all of us. If we are together and something hits us there are small smiles – and maybe a few tears - exchanged. But generally moments are experienced when we are alone and they are very personal to each individual. A song on the radio can be paralyzing, coming across one of her scarves in a bag is like finding a treasure (and I have 100 of them.)
This weekend it was the soap in the bathroom. I washed my hands in there and had to really pump the soap dispenser to get any soap on my hand. I thought “ok, time for a new soap in here.” Mundane and uneventful. And then I stopped. That is the first time I’ve had to change the soap bottle in Maggie’s bathroom since she passed away. I used to refill it at least every other day and sometimes daily.
I bought those giant soap refill bottles at Costco - like 6 or 8 at a time. That would last me about a month to six weeks. Between all the nurses’ hand washing, and equipment cleaning and Maggie’s bed baths, that tiny sink in Maggie’s bathroom was going nonstop 24 hours a day and the soap would just disappear.
Now that bathroom is used much less. Much less. I changed that soap on February 15, the day she passed away and didn’t have to change it again until July 11. That’s about 150 days, or 75-90 refills I haven’t made.
Believe me I never minded using all that soap. Cleanliness was a key to keeping Maggie healthy. One of the nurses was a little unclear on this. No matter how many times I begged her not to, she often filled the soap dispenser with water in an attempt to stretch out the usable soap. That was aggravating; I would get a squirtful of bubbly water and have to stop mid hand washing to fill the dispenser with actual soap.
That aggravation is gone now. The nurses are gone, the tubes are gone and Maggie is gone.
A small change in the amount of soap we use triggered that entire line of thought, all as I stood there drying my hands.
It’s no wonder the big changes are taking longer. The little changes can be exhausting.
Thursday, July 10, 2014
1) I was having a conversation with a lovely woman with a thick Jamaican accent when things got weird. When she learned about Maggie she suddenly had to share her philosophy about disability. It seems, according to her, that disability and any other "affliction" is the work of Satan. My father or his father or his grandfather or his grandfather (all men, which is interesting) did something bad and Satan uses that to cause affliction many generations later.
Wow. Wow. Wow.
This was more than I could handle. I really didn't want to debate the point, because I went from being charmed by this woman to being freaked out in a very short period of time.
I left and went to a lunch meeting which was lovely in every way.
2. When leaving the lunch meeting I was chatting and suddenly found myself staring at a woman walking up behind us. I couldn't believe my eyes. The woman was wearing a sweatshirt that I was sure said "Maggie McDonald." As she got closer I realized it actually said "Carnegie Mellon" and I had to somehow explain my distraction. (and Now I really want one of those sweatshirts)
Strange. Strange. Strange.
3. We walked about 10 feet and I saw a woman I knew many years ago when the boys were young. I run into her periodically, but it had been a while. She is odd and always has been. We exchanged pleasantries and she asked about the kids and I said they were good and I asked about hers etc. Then she said, "And how is Sara?" I paused and said, "Sara? Do you mean Maggie?" She said oh of course.
I felt my lunch partner put her hand on my back - a small gesture that I appreciated so so much. She literally had my back.
I paused again and said, "Actually Maggie passed away unexpectedly a few months ago." She was understandably shocked and said, "No one told me. Why didn't anyone tell me?"
I thought to myself, well, maybe that's because you thought her name was Sara. But I didn't say a word. I just excused myself quickly.
Weird. weird. weird.
The remainder of the day was uneventful.
Wednesday, July 9, 2014
Now UCSF is moving down to Mission Bay. It won't be as close to our house, but it will serve the entire community with a free standing childrens' hospital as well as a cancer and women's hospital and an outpatient center. It is the fir
st new hospital in San Francisco in many many years - in fact I cannot remember the last one. The building will be completed in just a few weeks and the hospital will open February 1.
To celebrate the completion of the building, UCSF Medical Center is having a 5K hardhat walk and lights on celebration on September 6. And you can all join in if you want to. I just created a team for the walk which is named Remembering Maggie McDonald. Here's the website. http://ucsfhardhatwalk.com/teampage.asp?fundid=754#.U73PHfldWnZ
Register to join our team if you can - it's $25 - or just make a donation. Let me know if you want to walk, so we can all meet and walk together.
Don't forget your hardhat!!
Tuesday, July 8, 2014
Monday, July 7, 2014
We sadly returned home and sat back down at the table and reminisced. I noted that the mailmen, raccoons and skunks of the Richmond district were going to sleep a little better now. Brisco County Jr., the great watch dog, always with one ear up and the other down, was off duty.
There are too many stories to share but the way Brisco was with Maggie was the most amazing thing. Maggie was 4 years old when we got Brisco and she spent a lot of time on the floor in those days. (It took a long time before she could tolerate being in the wheelchair for long stretches and this was before her skillful dynavox days.) She could sort of move around on the floor, propelling herself on her side using her legs. She was like a swimmer without water. If my purse was on the floor she would get to it and fling everything hither and yon. Newspapers left behind were quickly shredded to bits. This picture is from 2008.
We quickly learned to pick things up to avoid the mischief. But Brisco was always there. And Maggie would get to him - or he would just lie next to her - and the ear, tail and fur pulling would commence. Brisco just sat there and let her do whatever she wanted. If the boys were nearby and tried the same thing, Brisco would have none of it, but Maggie had free reign. This picture is probably from about 2000 or 2001.
Brisco was very protective of Maggie. When someone new entered the house Brisco would casually stand between the visitor and Maggie. If they stayed, he would lay down next to Maggie. He wasn't threatening in a teeth baring or growling kind of way; he was more like the dad of a teenage girl and the visitor was the hapless date.