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Franchise Player
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Since we are sharing, I thought I might as well share as well. I haven't spoken too much about this with people, and definitely haven't done so on a public forum for relative strangers to read, but here goes...
My mother had ALS. Now, for anyone with experience with ALS, it is something that not only devastates the sick person, but is also relatively devastating to a family. The care level required is enormous. However, we were behind the 8-ball right from the start. You see, this was a decade and a half ago. Maybe the diagnosis was more difficult back then - I really don't know. What I do know is that as my mother slowly got ill, got more 'clumsy', and then stopped being able to walk, we kept running into the most incompetent of doctors.
A long time family doctor - prognosis? "You need to lose weight." now, my mom was overweight (she had a hysterectomy years before, and did put on weight, but hardly the type that you see on TV that is bedridden and requiring a crane to get her out of the house), but she was very strong and vibrant.
We got a few of these from various doctors. Honestly, though horrible, they weren't the worst.
There was a number of doctors who came out and said: "I believe you are just faking it.", and scolded my mom right in front of us. Well, at least until I would cut him off, insist that if he doesn't turn around and walk out of the room he would require the assistance of other medical professionals. They couldn't be bothered to even refer her to a specialist. "Gee, she has loads of strength in her legs, so there is absolutely no underlying medical condition for her not to walk"
There was one time that a doctor even got angry at the hospital (we would take her into emergency once a month at various hospitals in an effort to get a diagnosis - we knew she was not faking it). My mom was slipping off the examination table, and he said to her face: "If you slip off, I am not picking you up." Out of frustration, I grabbed him by his lab coat, picked him up, and screamed into his face "She is not faking it, and when we find out what is wrong with her, I am coming back here to have a chat with you, as well as the medical board, and I will make dam sure you don't treat another person in this disgusting manner. You also better hope I don't see you anywhere outside this office, or I will consider you fair game."
If you know me in person, you would say I am too relaxed. Too easygoing. Everyone has a breaking point. I could have handled it better, but I was exasperated. I had just quit university in order to help take care of my mom, and help with trying to buy expensive medical equipment to try and make her life easier. They weren't even willing to send her to a specialist - so sure of themselves that my mom was faking it. Sure, I get that ALS isn't exactly easy to spot... but....
She finally got her diagnosis - 2 months before she passed away. In hindsight, maybe that was for the better. At least we always had the 'hope' that there was an easy fix, or that she would recover somehow. I remember getting called in for the neurologist diagnosis one time - yet another emergency hospital visit (and we had to call the ambulance to make sure she would get seen at arrival, believe it or not - the staff would always try to get her to see her family physician, as it was not an 'emergency'). I remember he said: "I am very sorry to tell you, but you have Amyotrophic Lateral Sclerosis". No idea what that was. We all just stood there blinking back at the doc. He asked us if we had any questions. We looked at each other, and then looked back at him, and said: "No, not right now." None of us knew what she had, but by the 'sorry' and his genuine displeasure at giving my mom the news, we knew it was going to take her life and there was nothing we could do about it. The timing couldn't have been worse either - the day before, my grandmother - my mom's mom - had passed away. That's tough.
I think now with the ice bucket challenge, we all have heard of it, and we all know it is something that doesn't have a cure. We know it leaves you paralyzed. If only things were really that simple.
What people don't know is that only your motor neurons are affected. Your sensory neurons stay intact - good as ever, unfortunately. Why unfortunately? Well, imagine not being able to move your leg, but you can fell the 'needles', the numbness, the sores, the tickles, the itches, the cramps - and be unable to do a damn thing about it. You have to call for help, and calling for help was something my mom always refused to do.
Things got easier after she got the diagnosis. Home Support got involved. Before that, we had to pick her up. At first, we just needed to help her off the sofa, and hold her arm as she walked. Then she had a couple of falls, so we got a walker for her. That worked well for a couple of months, but then she couldn't 'move' her feet forward, even as a shuffle. I used to go on my hands and knees and push her feet forward one step at a time. When she stopped walking, I had to carry her. I would research equipment online and then save up and buy it. I was a struggling university student, and well... my dad didn't have savings to dip into. He had a car accident that prevented him from working years before he could retire. I had to work, and a lot of my money went into trying to improve her quality of life. With home support, they brought in a lift machine so we wouldn't have to carry her any longer, a hospital bed so she could be more comfortable, and care aids that would help us in her care, and help keep her dignity (bathing, etc).
What you may not know about ALS is just how devastating it is to ALL your motor neurons.
Stop for a minute and think about it. You can 'move' a part of our body because your muscles 'work'. What tells your muscles to work? Nerves - they carry the electric impulses from the brain and 'fire' at the connection sites so your muscles can contract and you can perform a movement. People right away think of walking. What about eating? The ability to grasp a fork, move it to your food, and be able to carry the food into your mouth? What about chewing? What about swallowing? Choking was a daily and frightening occurrence. What people don't think about either is speaking - the person gradually stops being able to speak. The voice changes, and then, after a while, a single word is impossible to say.
Now how can you move a leg that is cramping up and in pain, but you don't have the ability to move it, and you don't have the ability to even ask someone to do it? That is ALS. That is why I call it evil. There are lots of horrible diseases, but ALS has always struck me as some mad scientist's creation about how he could make someone suffer.
Finally, in the last stages - if the person hasn't already aspirated on water - they stop breathing. Your breathing is regulated by your brain, but they still need the motor neurons firing in order to expand and contract your chest, right? That is why you can alter your breathing any way you wish. You can pant, you can hold your breath, you can take deep relaxing breaths, etc. You lose this ability.. until finally you can't breathe at all.
The doctor that finally took good care of my mom was there at the end too. He looked at my mom earlier, and apologized for the negligent care she received. I look back and I am not sure I would have changed it - we would have been better off with more equipment earlier on, and help with her care, but there would be no hope. I am not sure I was (or my mom was) ready to exchange that hope for anything. He was a teaching doctor, with a number of degrees, and he went around to all the doctors that I 'took a number' from, and scolded them, and reported a couple to the board.
I know doctors have a tough time. I know they can not be experts in everything. However, there is no excuse for telling a patient she is faking it, rather than try and send her to someone else who just may have the answers. My mom saw one single neurologist, and within 48 hours, he returned with the diagnosis. I can only imagine how many other quacks there are working here. According to a few doctors I spoke with, apparently there are a great deal many doctors who are so incompetent. If you have a doctor that doesn't send you to a specialist, or doesn't seem to be taking your care as seriously as you think he (or she) should, please go see another doctor. In my mom's case, we as a family are relieved we didn't get the diagnosis earlier - it was way more difficult, but we had hope until then. Whether we got it early on or at the very end, there would be nothing we could do about it.
The funny thing is, that often a doctor becomes incompetent over time. You see, I told you that my mom had a hysterectomy. She had a long-time family doctor that she was very comfortable with and trusted. She started having abdominal pain, and kept going back to her doctor, and her doctor would say it was nothing. Maybe gas. Maybe indigestion. Maybe this, maybe that, but never sent her to a specialist of any sort. The discomfort and pain only increased in time, and she agreed to see my dad's doctor. He examined her, suspected it was cancer, and had her booked for surgery later in the week. It was the size of a grapefruit apparently. Had she waited a few more months, it probably would have been another ugly and terrible disease that took her.
That same doctor who diagnosed her (and performed the surgery - he was a very respected surgeon in Calgary) became her family doctor. He made a house-call to see her - something most doctors don't do. He examined her, shook his head, and said: "You needed to lose some weight. Now it may be too late." He didn't bother sending her onto a specialist. So just because your doctor was great for something, or at one time, keep in mind they are people too who make mistakes, get tired, and maybe have some off-days where they just shouldn't be working at all. Always get a 2nd, and if need be, a 14th opinion. We don't know exactly how many doctors we had to go through, but it was between 12 and 15 before we got a diagnosis.
Unfortunately, my mom was not just faking it.
To everyone that knows a family that is dealing with a member having ALS - or even other long-term conditions that don't have any 'hope' - it doesn't take much to drop off a dinner, drop off a coffee, or even just call and either listen to them vent a bit or distract them with stories. Trust me, they may put up brave faces and tell you they are fine, but they sure could use it now and then. Trust me, I know.
If anyone is helping a family memeber with ALS, and needs a chat, just pm me. Same goes for dementia - my father is almost 90, and for the last 5 years I have been taking care of him full time as he is an extreme choking risk (you will see notices about elderly people passing away due to complications of alzheimer's or dementia, these 'complications' are often falls or aspirations). I will be glad to share any tips and tricks I have learned over the years, and sometimes we just need someone to listen for a few minutes. Don't forget the good people in your life who love you - don't be afraid to lean on them now and then when you need it - that is what good people are for.
Sorry for the long post. I could easily write 50x more than this regarding this topic, but if I did I would maybe bring you (and myself) to tears, and neither one of us wants that I think.
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