ALS

Recently my father was diagnosed with ALS or better known as Lou Gehrig's disease. It's a terrible disease in which little is known. Amyotrophic lateral sclerosis aka ALS is basically a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord. As the disease progresses your ability to talk, breath, walk, and other normal daily activities. When the motor neurons die the ability of the brain to initiate and control muscle movement is lost. Basically you become paralyzed but your brain still works just fine to an extent. So you're trapped in a body that doesn't work and some choose to go on life support and others choose not to. It's a really difficult person choice that varies from person to person. Regardless of life support the end result is death. There is no cure for this disease. My father is dying and the disease is progressing very quickly. 


My father also has heart disease and Diabetes type II. Around the time that he was diagnosed with ALS he had a quintuple bypass and soon after that he got the diagnosis. A week or so after that one of the bypasses failed and he had to go into surgery again to fix it. There is the thought that the weakened state of his body with the surgery has caused the disease to be so aggressive. I've talked with my doctor about it because I was concerned it would be genetic. Sometimes the disease is genetic and other times it shows up without warning. This time it isn't genetic which honestly was a relief to me because I already have problems with arthritis and fibromyalgia combined with Orthostatic Hypo-tension which makes me dizzy and black out when I stand up. The combination of my medical issues makes doing even simple house work difficult. 


I don't see the day to day progression of the disease because I don't live where my father and stepmother do. We're close enough to visit once a month because it's only a 5 to 6 hour drive. He was doing okay last time I saw him but since then so much has happened. His speech is slurred because the muscles that work the voice box are losing their ability to work. His right side is nearly useless and many other things. He's in an electric wheelchair and they have a van which is made for wheelchairs which means getting out is much easier especially on my stepmother. It's hard for her to help lift him because she's a rather tiny woman and dad is not the smallest man in the world. Not to mention she has several medical conditions that cause her near constant pain.


They love each other so dearly and I've seen how good she has been for him. I'm glad that he found someone that he loves and has a wonderful loving relationship with. I also appreciate that my stepmother can put my dad in his place and push him to do things that he needs to do. I can only imagine how difficult it is for her. She's watching the man she loves become a shell of himself and she is well aware of what taking care of him means. She knows that he won't get better and all we can really hope for is that the disease will slow down and plateau so we can get more time with him. I am so eternally grateful for all she is doing for my dad and I know this is hard for both of them but she tries so hard to make his quality of life as best as it can be. 


My two sisters have never met my stepmother or had any sort of relationship with her. My brother and I have met her and she is a wonderful woman. My brother has had more time with her than I have but I still know her better than my sisters. I was really looking forward to moving up to Washington with Carey's job so that I could reforge a healthy relationship with my father and get to know my stepmother more. So many things have gone wrong this year though. I had a miscarriage in February and the day I would have been due passed just last week. It's been tremendously difficult to deal with the death of my baby. The news that my father had to have heart surgery was hard but there was a good deal of hope that he would survive the surgery and then get better. He's been working so hard to get the Diabetes and Heart Disease under control. I've always known that at some point he would have to have heart surgery and I was prepared for that. What I wasn't prepared for was a disease that hit out of left field and is completely and utterly fatal. 


So now on top of grieving the loss of my baby I am grieving for my father. Seeing how far he's declined each time we visit almost breaks me. I had so much hope and now there's just grief and not knowing. We have no idea what the disease will do next. It's completely unpredictable and completely traumatic to deal with. My sisters, brother and I will be spending Christmas with him. It will be the first time my sisters have seen him since my wedding in 2005. It will be the first time he meets his granddaughter Ally and I have no idea what state he will be in when December comes around. Regardless we will make this the best Christmas we can but I know that the elephant in the room is the fact that he will die and by the looks of the disease maybe in the next year. I have a feeling that he won't last to another Christmas. He even feels that he has maybe a year left. 


My sisters will break when they see him. Last time they saw him at my wedding he was vibrant and dancing and a charming ball of energy. He got totally smashed and invited people from the bar in the hotel where our wedding was into the party. It was a wonderful wedding and it was rather funny watching him as smashed as he was. I simply do not know how to prepare them for seeing him. I don't know how I will be able to prepare myself for seeing him because every time we visit he's gone downhill.


There are plans that need to be made. Power of attorney for my step mom because my father really can't write anymore, plans for a will and a living will. Also funeral arrangements will need to be made before he completely loses his ability to communicate. That is the one subject I haven't been able to bring up. I want to know what he wants if he wants to be cremated or buried or if he wants a ceremony at all. Unfortunately these are things that people with terminal illnesses have to deal with. As my step mother said it's not just dad that has ALS it's her that has it too. The disease affects everyone in our family.


I never thought that my father would die before my grandmother's. My paternal grandfather died when my dad was 12 he was 50 at that time. My father jokes that at least he's made it 3 more years than his dad does. I honestly don't now how to respond to his humor but I know that's the way he's dealing with it. It's either laugh or cry and sink into depression. My maternal grandfather is dead but both my grandmother's are alive. I can only imagine how difficult it is for my dad's mother to watch her son die. A parent should never have to bury their child yet so many parents have to. The heartbreak has to be immense. There are so many feelings I have right now and I can barely sort them out. Thankfully I'm seeing a therapist and I intend to see her the entire 4 years that I'm here because I will need help dealing with the death of my father. I'll need help knowing that he probably won't meet my baby which I will start trying for in the new year. That breaks my heart and I can only imagine how he feels about that. 


Emma is 4 1/2 and she doesn't really understand death. We tried our best to explain the death of our baby Rowan and we're doing our best to explain that grandpa has a disease and he will die. I picked up a book that was recommended to me for children to help them understand death a little more. Children her age simply deal with things differently than adults. She will be fine and then she'll randomly tell me she misses Rowan or asks me when I'll have another baby. Today I talked to my step mother to get an update on Dad's condition and after the phone call I was really sad. I asked Emma for snuggles and told her that mommy was sad and she asked me if my daddy had died. I told her no and explained that his disease is progressing quickly and mommy was sad because of that. We are being extremely careful to not use the word sick or illness because I don't want her to think that being sick leads to death. There's so much to deal with and so much that is unknown and all of this is unfair. From the death of my baby to watching my father quickly go downhill and knowing he will die and there is no cure. I never thought that I would ever wish that my father had cancer but at least with cancer there is hope. With ALS there is no hope only a soul crushing acknowledgement that your loved one will die and you simply do not know when.