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TPALS Home Stories: Diagnosis Stopping driving Going to a wheelchair Positioning in Bed Feeding tubes Using a BiPAP Getting a trach Life on a Vent Power outages Resources: Communication Aids ALS Links.com ALS Survival Guide ALS Links More Links ALS Association MDA Misc. Issues: My Meds My Treatment Dr. Meagher & Pergonal Ron Leeb & ricin |
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Life on a Vent: Paula's dad My dad was diagnosed with ALS in 1999, He had no idea what was wrong with him, how he found out he had ALS, was he had gone to the clinic to be tested for his thyroid gland because the doctor thought that the gland was over working itself. My dad (George) began to notice a few years earlier that he was starting to loose his voice, he had some problems swallowing also but thought nothing of it after seeing doctors about him loosing his voice, they found nothing wrong. He then went to a neurologist. It was 1999 when they told him he had ALS. He got very upset and walked right out of the room. My mom wanted to find out more about it but my dad told her no. My dad got very sick the beginning of December not even 2 months after he was diagnosed. He started to loose a lot of weight. He started falling down more, and having a hard time swallowing. In March of 2000, he got very sick, his body started turing green. My mom had tried to take him to the hospital, but once a gain he refused to face the truth, and refused to go. She then took him to the pastor to see if he could maybe talk some sense into him. He finally went. Thank goodness he did go. He was automatically put on a breathing machine. The doctors had told my mom that he not only had pneumonia in one lung, but both. He also was getting poison throughout his body. They got him stable, in was in C.C.U. Hooked up to a lot of machines. He looked like death warmed over. When the doctor tried explaining to us that being on life support would not be a good idea, and there really is not much to live for when you have ALS. It was up to my dad to decide, we could not decide for our dad. He was at a sound mind, and had to make the decision if he wanted to live.The doctor basically thought it was a waste of time for my dad to be on life support. At one point when we went in to see him with the pastor, my mom thought that he died. But it was the medication that made him relaxed. But at first when she thought he died, she pounded on his chest, and cried. And told him daddy daddy don't die. That was hard to see. Then the nurse told her she was fine. The doctor came in and asked my dad if he wanted to live he shook his head yes. So the took him down to surgery and put a trach and feeding tube in. He started to look a little better, but not much. He was transferred down to Plymouth WI to a nursing home that takes ALS patients. Because where we live they don't treat ALS patients. That was about 2 to 3 hours where we lived. My mom left us behind to move down there with no where to live, because they have been married for going on 32 years and never had been apart not even one day. They had unconditional love for each other, and where ever my dad went my mom was there too. My dad even went to baby and bridal showers with my mom. My dad has been on life support for over a year now[as of July 2001]. He communicates by blinking his eyes, and tapping on the phone when my mom calls. Life for him on the vent is not easy. They have to clean him out a few times because of him not being able to swallow. That is the sad part, because he cries. He has lost a lot of weight. Once he was at 240, but now he at 155. He is starting to have breathing problems and is not doing well. He is still trying to walk once in awhile, but he just wants to lay in bed. He is still in denial, and being away from my mom is hard for him. The only reason why he chose life support, because he does not want to leave my mom behind, he is afraid that she will not be taken care of. Allowing a breathing machine breathe for him is the only reason why he is alive today. And he can be on this for awhile longer yet, but he is getting worse, and the doctor gives him medication to help clear up the infections he gets. They use to do breathing exercises, but they stopped because my dad gets scared that if he tries to breathe on his own, he will die. He is just afraid to die. He is only 63, and thinks that he will be able to come home again. But in reality he won't. As far as my mom, well she has a difficult time excepting the truth, and has become some what depressed. But she is getting help to get better, and to realize that when he does die, he will be in a better place. We take lots of pictures of my dad. Some days are good for him other days are not. He just stays on the machine, and watches movies that we use to watch while I was growing up. I am his daughter Paula, and I am 29. I will always be my dad's little girl no matter what. After he dies, I will continue to find help on how this terrible disease will be treated. I will not give up on my dad. Everyone is different, with my dad he started loosing his voice, then he ability to swallow, now he can no longer lift his head. I try not to cry, but I need to be the strong one in the family. I have one sister, her name is Cheri. But she too thinks my dad is coming home. Maybe one day she will wake up and realize that he never will. But this is how she deals with it. Why he chose life support, and being able to never eat, swallow, talk, and only communicate with his eyes, I only know is that he loves my mom too much to let go, and my mom is afraid to let him go. I also love my dad too much to let him go too, but I know he will die soon, and I need to realize that it is ok for him to die. But, just not today. I am trying to hold back the tears, but today I can't. There are a lot of good memories. I will continue on and share my story of my dad with other people. And I would like people to realize to make life as comfortable as you can with someone who is on life support, that has ALS and take pictures of the good times. Everyone has a choice in life, and in my dad's case, he chose life support.
Paula Life on a Vent: David A.'s Story I got a tracheotomy in Jan. 2000 and used the vent at night only at first. Then full time after a few months. I come off the vent for an hour or two each morning for bathroom & shower visits. I can breathe on my own well enough for that. We have a cap (Passey-Muir valve) that goes on my trach tube so that I can speak. The doctors didn't think I would be able to come off the vent at all after a month or two but I'm doing it still 4 years later. What do they know? LOL My decision to go on a vent was easy for me to make and I have no regrets. I was 29 and in the Navy when I was dxd with ALS, so I get all my care through the VA Hospital. I live in my own home with my dad as my primary caregiver. I also have a hired caregiver and my 2 sisters and my brother to help. I required 24 hour care before the vent because I didn't have use of my arms. As for being on a vent, I feel better and don't have to worry about breathing. My family were all taught how to care for my trach and how to suction me. It's not as difficult as it seems. I have a tray on the back of my wheelchair that holds the vent, so it goes wherever I go. As far as function. If you can speak before getting a trach usually you can speak after a trach. Going on a ventilator will not stop the progression of ALS but it will give you more time and who knows what the future will bring. You can always change your mind and decide you no longer wish to be on a vent. My progression was very rapid at first and seems to have slowed the past few years. I know having the vent I don't think about breathing. When it's off I have to work hard to breathe. My quality of life is better than I ever imagined it could be. I've gotten 4 extra years so far to watch my son grow into the pain in the butt teenager that I was. :) He's 16 and driving now. (Yeah) I am not bedridden. I'm up in my wheelchair from 10 AM till bedtime at about 11:30 PM. I am able to use the computer via an Eyegaze System. http://www.eyegaze.com/ Using the computer is my link to the world and my greatest asset in keeping me involved. I can watch TV when I want (Tivo is great for me) and rent movies to watch with family and friends. I know I'm blessed with great caregivers and family support and medical expenses paid by the VA. I'm grateful and for the most part happy with my life. This is a personal decision that needs careful thought by all involved PALS & CALS. You should get all the info on your options before making the decision.
Best Wishes, David A. |