BellesDaughter
New member
- Joined
- Jun 25, 2021
- Messages
- 4
- Reason
- CALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Buffalo
Hi everyone. This is a long post but I am dire need of advice and any compassionate guidance would be so appreciated. I'm new here but my mom has had Bulbar Onset ALS for the past 3 years. At her current stage of her disease, her entire upper body is essentially no longer functional (she still has use of 3 fingers and she can tip her head back sometimes). She can still breathe on her own. She has a G-tube for feedings that my dad gives her. She also requires regular saliva suctioning from a machine. She needs a lot of help walking and going to the bathroom. They use a stairlift to get her up and down the stairs. She is not yet in a power scooter but I feel that will happen in a few months or less.
Here is my situation: Due to my husband and I living in Baltimore and my parents in Buffalo, I have not seen my mother in almost 11 months. Now, we are finally all vaccinated and feel safer traveling. To add to this, we cannot go see them because I am pregnant with twins and due in just 2.5 weeks (we also have a toddler at home and when the twins arrive, we'll have 3 kids under 2). My husband and I have discussed the possibility of flying to Buffalo when the twins are 4-6 months. However, my dad is adamant about coming down to see us and the newborn twins sometime soon after they arrive. My mom feels scared and reluctant. They have traveled here before when my mom was already diagnosed, but my mom was so much more mobile and able bodied then.
Of course, I want my parents to see their grandchildren more than anything. And with my mom's condition, waiting yet another 4-6 months to see her and for her to see her own grandchildren seems cruel after a year of no visitation. However, I just don't know (a) if traveling with a person with ALS at my mom's stage is even possible and (b) if it possible, what is the best and safest way?! I see a million things that look unsafe or could go wrong. Not to mention where they should stay when they get here. We have discussed everything from setting up a bed in our dining room so my mom won't have to use the stairs to getting a hotel nearby that is disability-friendly. I just do not know what to do on this scenario.
For the travel portion, I see two options: 1. Get a disability-friendly van that can seat my mom and hire a driver to do the driving so my dad can sit next to my mom and give her continuous suction and pay attention to her cues for the bathroom, comfort etc. This way all of her medical equipment could be transported down with her. We'd keep the van while we're down here and hire a different person to drive back. I have no idea about the minuatae of all of this but I have heard such a thing exists! (2). My parents fly on a plane. This looks appealing as well bc the flight is so short (45 min) and because airports are safe in that there are a ton of ppl around to help if something goes wrong w my mom. However, I see so many issues here too: can my mom's suction device just sit out in the aisle? It's big and clunky. Can she reserve a seat that is super close to the bathroom ahead of time? And When she goes to the bathroom, I cannot imagine my dad and her both fitting in there and the door closing...and the plane jostling around (she has no arm mobility to catch on to things.) Even right now in our regular-sized half bathroom in their home, my dad has to pull her pants down in the hallway and then ease her into the bathroom with pants down and position her on the toilet. She also can't wipe herself. How is this even possible in a tiny airplane?
Sorry this is long, but I just do not know where else to turn. Everyone on here seems so kind and I'm hoping for insight. I am devastated not only with my mother's illness but at the fact that we live far apart and I am immobilized with this pregnancy. If the best course of action is to just wait until the newborns are. Few months older, we can do it, but I'm looking for other ways to bring a grandparent's joy to my deserving mother. Please help!!!!
Here is my situation: Due to my husband and I living in Baltimore and my parents in Buffalo, I have not seen my mother in almost 11 months. Now, we are finally all vaccinated and feel safer traveling. To add to this, we cannot go see them because I am pregnant with twins and due in just 2.5 weeks (we also have a toddler at home and when the twins arrive, we'll have 3 kids under 2). My husband and I have discussed the possibility of flying to Buffalo when the twins are 4-6 months. However, my dad is adamant about coming down to see us and the newborn twins sometime soon after they arrive. My mom feels scared and reluctant. They have traveled here before when my mom was already diagnosed, but my mom was so much more mobile and able bodied then.
Of course, I want my parents to see their grandchildren more than anything. And with my mom's condition, waiting yet another 4-6 months to see her and for her to see her own grandchildren seems cruel after a year of no visitation. However, I just don't know (a) if traveling with a person with ALS at my mom's stage is even possible and (b) if it possible, what is the best and safest way?! I see a million things that look unsafe or could go wrong. Not to mention where they should stay when they get here. We have discussed everything from setting up a bed in our dining room so my mom won't have to use the stairs to getting a hotel nearby that is disability-friendly. I just do not know what to do on this scenario.
For the travel portion, I see two options: 1. Get a disability-friendly van that can seat my mom and hire a driver to do the driving so my dad can sit next to my mom and give her continuous suction and pay attention to her cues for the bathroom, comfort etc. This way all of her medical equipment could be transported down with her. We'd keep the van while we're down here and hire a different person to drive back. I have no idea about the minuatae of all of this but I have heard such a thing exists! (2). My parents fly on a plane. This looks appealing as well bc the flight is so short (45 min) and because airports are safe in that there are a ton of ppl around to help if something goes wrong w my mom. However, I see so many issues here too: can my mom's suction device just sit out in the aisle? It's big and clunky. Can she reserve a seat that is super close to the bathroom ahead of time? And When she goes to the bathroom, I cannot imagine my dad and her both fitting in there and the door closing...and the plane jostling around (she has no arm mobility to catch on to things.) Even right now in our regular-sized half bathroom in their home, my dad has to pull her pants down in the hallway and then ease her into the bathroom with pants down and position her on the toilet. She also can't wipe herself. How is this even possible in a tiny airplane?
Sorry this is long, but I just do not know where else to turn. Everyone on here seems so kind and I'm hoping for insight. I am devastated not only with my mother's illness but at the fact that we live far apart and I am immobilized with this pregnancy. If the best course of action is to just wait until the newborns are. Few months older, we can do it, but I'm looking for other ways to bring a grandparent's joy to my deserving mother. Please help!!!!