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In the spring of 2016, I was working at a country club near Boston, MA. I have been going up there on and off for the past several years, and obviously, the golf jobs are seasonal (I’m a PGA Pro by trade). I have 9 cousins (can you believe it?) on my mother’s Italian side of the family (Delvecchio) and I’ve always wanted to see Boston and spend time with them. We didn’t see much of them when we were younger—even though we only lived about 8 hours away (my siblings and I grew up near Buffalo). I never got to spend much time with or really get to know my uncle Nick either and he passed back in 2005 before I spent my first season up there. So I made it a quest to get to know my cousins and spend time with them.
My mother’s boyfriend called me just after Easter Sunday in 2016 and said mom was saying some strange things and acting just a little more “off” then usual. I suggested he take her to see her PCP and get an MRI. 2 days later my mother’s physician called me and told me ” Yes Craig, it looks like your mother has suffered a stroke and possible NPH (normal pressure hydrocephalus). I started to cry like a baby, then pulled it together and booked a flight from Boston to Jacksonville. She was in Flagler Hospital when I got there and after talking with several different Doctors, my younger brother who lives in Jacksonville and I decided she needed to go into a rehab facility. The Doctors at Flagler recommended Peninsula Rehab in Ormond Beach. She would be there for 40 days.
Now I have the unenviable task of going back to Boston and telling this new group of people that I have grown fond of (co-workers and members) that unfortunately I am going to have to resign my position. My siblings and I had always discussed the fact that we would never put Mom in a nursing home or assisted living facility. Since I am the only one not married and no children (although I do have a girlfriend of 10 years now) it seems I would now have to take on the responsibility of taking care of Mom. Needless to say I had no idea what I was getting into.
I left Boston and the girl (this is like the 7th time I have left her now by the way) on Memorial Weekend and drove back to Florida. It’s really amazing when I think about it that Keri has stayed with me this long after all I have put her through, but that’s a separate story. Anyway, 2016 was without a doubt the most challenging and stressful year of my life. Mom was in and out of rehab and in and out of the hospital. There were a few incidents where she had a high fever and she would get dehydrated. There were several projectile vomiting scenes (literally, The Exorcist type stuff). I had to call 911 and have her taken back to the hospital at least 1/2 a dozen times. Then there is the bowel movements and the clean up which I am not going to go into detail about.
With the advice of her PCP, we started looking into the Mayo Clinic in Jacksonville because it is the best hospital in the state and they have an exceptional Neurology Department. We made our first appointment in September of “16” and my mother became a patient of the Neurology team at Mayo clinic. Our first session was with her Neurologist Dr. Huang. They did several tests over the next few weeks and decided to do an LP (lumbar puncture) to see if in fact she had NPH. I’m not a doctor so I’m not going to get very technical but for lack of a better term, Normal Pressure Hydro is an abnormal amount of spinal fluid around the cranium (not water on the brain as my sister likes to say). This condition effects Gait and movement and it also causes problems with incontinence in elderly woman which were definitely the 2 main issues my mom was having at home after all the rehab she had done. The LP is where they would go into her spine and drain 30ml of SF and see if that helped at all. That is the major test they perform to see if someone actually has NPH. A week later we met with Dr. Reimer, the Neurosurgeon who would eventually perform the Shunt procedure if we decided that it would be beneficial.
The first time we went back up to Mayo for the LP in November of 2016 was a nightmare. They were suppose to have us in at 9 am, but the nurse wasn’t there until 11. Then they sent us up to the Neurology Department and they were going to try and do the LP right there which they claim they have done thousands of times. Both Dr. Huang and Dr. Reimer told us that the procedure was short and virtually painless. When we got up there and the nurse finally came in she had my mother lay on her side and bring her legs all the way up so her knees were into her chest. My mother is almost 80 years old and obviously doesn’t move well so bending her in half like a pretzel was not easy to watch. Then the nurse pulls out what looked to me to be a lot like an epidural needle and say ” Ok, I’m going to shove this into your back now”. This was excruciating to watch and after a few seconds mom began to scream in pain and I told the nurse to stop immediately. This obviously wasn’t going to work. So the nurse then proceeded to tell us that we can go down to radiology and have one of the doctors down there try to perform the LP. The nurse made a call and set an appointment for us to go down there. When we went down to radiology the doctors there got her right in and made her lie on her stomach, then they used and x-ray camera so they could find the right spot in the spinal column to go in. She felt no pain and the whole process only took about 20 minutes. My feeling then was, why the hell didn’t they just give us this option to begin with.
It wasn’t very apparent that the LP helped right away and I just wanted to be thorough and because the first time was such a screw up on their part we decided to do it again. So after the holidays in late January of this year we went back for the 2nd LP. This time they did a before video of my mother walking the hall and a couple other exercises, then we went straight down to radiology, did the LP, came back up and they did some after videos of her walking and doing the exercises again and then we came back the next day because Dr. Reimer wanted to see how she walked 24 hours later. It was finally clear that the LP had made a significant difference and so we all agreed that it was time to prepare for the Shunt surgery.
It was so great having my sister here to help me for the whole week leading up to the day of the surgery and she was here when mom came out of the operating room. The three of us spent the night at the Mayo Inn because they were going to do the surgery at 6 am. Dr. Reimer informed us that the surgery went as well as could be expected, but when mom regained consciousness she couldn’t walk and her bladder wasn’t working at all so Dr. Reimer suggested she go to Brooks Rehab. She was there for 20 days and then she did another 20 days at their skilled nursing facility next door. She has been home since and it has been almost miraculous the way she is moving now, getting up and down out of chairs, her gait and movement are much improved and her incontinence is almost non-existent.
This one nice thing I did for my mother and I continue to do everyday hopefully has improved the quality of her life and will keep her spirits high so she can enjoy the next ten, fifteen or maybe even twenty years or whatever time she has left. I know as frustrating as it has been for me, I’m glad I was able to help my mother and I know she appreciates it.