Truth
The truth is ALS is hard. Vacation was a bust.
Everything was set up, hospice had the hospital bed delivered, the meds were delivered, the van was packed we left for the beach. This year something was missing though, the excitement wasn’t there, it wasn’t the same. It is year 5 with ALS, but it’s different now. Nothing works, Bert cannot use his arms or legs, he cannot drive his own wheelchair anymore. He cannot hold his core up, his neck flops, he can only eat things that slide down easily and there is usually still some choking and drooling. Travel is hard, he is not comfortable in the wheelchair for long. The three plus hour drive was too long. He was uncomfortable and in pain the last 20 minutes of the drive. We still had hope though, we could make it a good trip. But it just wasn’t good. The hotel bathroom was awkward the toilet low and the shower had an edge, so they added a wooden ramp to make it a roll in, the wheelchair didn’t fit. I couldn’t change rooms because the bed was already delivered and set up.
It was hot 90 degrees, hazy and humid. We attempted the beach, but beach wheelchairs are not high back and we were nervous to make the transfer, thinking it seemed like it would be uncomfortable. We ended up just going back to the hotel that first day. Later we went back to the beach and just drove the power chair out on the short mat that was on the beach. It was nerve wracking because even with the beach mat a heavy power wheelchair sinks and the mat gets caught up, we made it though and it was small victory. Day 2 we decided to try again, we made it back out on the mat, set up and made it an hour or so. The kids and I got in the water for a short time, but one eye had to stay on Bert. I got back to him only to find him in tears because flies were biting him, and he could do nothing about it. Later he said it didn’t hurt, it was just the fact that he was helpless to do anything. I tried to find dinner that would be soft enough for Bert to manage but he couldn’t tolerate anything. It was instant noodles from the grocery store. Vacation is supposed to be a time to relax, eat, drink, have fun. ALS makes everything like ground hog day, its all the same. Beach towns aren’t meant for huge power wheelchairs that another person must try and steer, the sand isn’t meant for them to roll onto easily. Hotels do what is required to be accessible, but the halls are still narrow, and the restaurants still have tables that are close together. The pools have a lift but when it’s crowded, and transfers are already very sketchy it just doesn’t seem worth it to go through all the risk to get in a pool lift that is hard and not very supportive to be wet for a few minutes. It’s no one’s fault, it is just hard to navigate the world now.
Then if things couldn’t get worse they did, not sure if it was heat, dehydration from the trip, constipation or what but Sophia and I were standing in line for ice cream at the creamery and Alex called, he said dad is throwing up. I left Sophia in the ice cream shop to pay and raced back to the hotel. We made it through the night and as soon as he felt well enough the next day I packed us up and drove us home. It was sad and disappointing because we felt like we failed, like ALS won. Phase two of this disease became real and it was hard to accept. We are home now, and everything is better. We have everything we need, and our hospice nurse came right away to check Bert and reassure us that she was there for us. Our sweet CNA was back this morning stretching and making things better. And now the massage therapist is here, and things are much more comfortable. Sometimes the best place to be is home.
I have been training for a Spartan race and journaling my workouts with an ALS fact for the last week. I left off at day 11, so where am I now? Truth, I could do a Spartan race ten times over and it would be easier than ALS. I will keep journaling my training but if you don’t see a post for a day or two know that I am doing something much harder than a workout…I am caring for my husband and family and fighting ALS till the end with them.
xo~Jennifer
The truth is ALS is hard. Vacation was a bust.
Everything was set up, hospice had the hospital bed delivered, the meds were delivered, the van was packed we left for the beach. This year something was missing though, the excitement wasn’t there, it wasn’t the same. It is year 5 with ALS, but it’s different now. Nothing works, Bert cannot use his arms or legs, he cannot drive his own wheelchair anymore. He cannot hold his core up, his neck flops, he can only eat things that slide down easily and there is usually still some choking and drooling. Travel is hard, he is not comfortable in the wheelchair for long. The three plus hour drive was too long. He was uncomfortable and in pain the last 20 minutes of the drive. We still had hope though, we could make it a good trip. But it just wasn’t good. The hotel bathroom was awkward the toilet low and the shower had an edge, so they added a wooden ramp to make it a roll in, the wheelchair didn’t fit. I couldn’t change rooms because the bed was already delivered and set up.
It was hot 90 degrees, hazy and humid. We attempted the beach, but beach wheelchairs are not high back and we were nervous to make the transfer, thinking it seemed like it would be uncomfortable. We ended up just going back to the hotel that first day. Later we went back to the beach and just drove the power chair out on the short mat that was on the beach. It was nerve wracking because even with the beach mat a heavy power wheelchair sinks and the mat gets caught up, we made it though and it was small victory. Day 2 we decided to try again, we made it back out on the mat, set up and made it an hour or so. The kids and I got in the water for a short time, but one eye had to stay on Bert. I got back to him only to find him in tears because flies were biting him, and he could do nothing about it. Later he said it didn’t hurt, it was just the fact that he was helpless to do anything. I tried to find dinner that would be soft enough for Bert to manage but he couldn’t tolerate anything. It was instant noodles from the grocery store. Vacation is supposed to be a time to relax, eat, drink, have fun. ALS makes everything like ground hog day, its all the same. Beach towns aren’t meant for huge power wheelchairs that another person must try and steer, the sand isn’t meant for them to roll onto easily. Hotels do what is required to be accessible, but the halls are still narrow, and the restaurants still have tables that are close together. The pools have a lift but when it’s crowded, and transfers are already very sketchy it just doesn’t seem worth it to go through all the risk to get in a pool lift that is hard and not very supportive to be wet for a few minutes. It’s no one’s fault, it is just hard to navigate the world now.
Then if things couldn’t get worse they did, not sure if it was heat, dehydration from the trip, constipation or what but Sophia and I were standing in line for ice cream at the creamery and Alex called, he said dad is throwing up. I left Sophia in the ice cream shop to pay and raced back to the hotel. We made it through the night and as soon as he felt well enough the next day I packed us up and drove us home. It was sad and disappointing because we felt like we failed, like ALS won. Phase two of this disease became real and it was hard to accept. We are home now, and everything is better. We have everything we need, and our hospice nurse came right away to check Bert and reassure us that she was there for us. Our sweet CNA was back this morning stretching and making things better. And now the massage therapist is here, and things are much more comfortable. Sometimes the best place to be is home.
I have been training for a Spartan race and journaling my workouts with an ALS fact for the last week. I left off at day 11, so where am I now? Truth, I could do a Spartan race ten times over and it would be easier than ALS. I will keep journaling my training but if you don’t see a post for a day or two know that I am doing something much harder than a workout…I am caring for my husband and family and fighting ALS till the end with them.
xo~Jennifer
