So we went on our first vacation since he became so disabled. It was truly a learning experience. I learned so much and a lot of it I can't even put into words. First- No one else knows how to take care of Dan so even if I go where they want to take care of him there is only so much they can do because it has now become second nature so I do a lot without thinking about it and I will leave it off a list if I am asked to write one. Second- if someone else volunteers to get him up, dressed and feed him breakfast let them. What a blessing that was. I realized that it was the first time in over 6 months that I didn't do it or at least have a big hand in it.
Third- Let others serve him. It helps them while giving you time out. What a blessed time it was.
No they can't do everything I can but my goodness what a relief it was to not have to do so much.
Fourth- When traveling carry everything (medicine wise) you can ever think he might possibly need. There is a LOT so take a van with lots of space. Take both the electric wheel chair and the manual one. The manual one is much easier to get in other people's houses who have stairs or even a big enough bump that the electric wheelchair can't get in. So you can visit everyone you want to.
Fifth - give yourself plenty of time to get there because it is going to take longer. Much longer than you plan. Plan to spend the night somewhere. We went 10 hours one day and it was a long day and we were all way more tired than you can imagine.
Sixth- lower you expectations.
Seventh- Get a hotel room with a disability setup. Make sure it has a roll in shower because the transfer tub is nice but I could have never gotten Dan in there.
Eighth- If you have hospice let them know a week in advance (or more) because they will set up hospice care for you wherever you go and you will still have support.
Now since I have gotten home I have learned that if you have anything on the inside of the tube of his catheter then it can clog up the works and cause a major blowout and then the pee will flow in his pants instead of down his tube as it is supposed to. After the blowout the bag will fill up quickly because it is now flowing but at that point change out the tube and bag so it won't happen again.
Last but not least, you know how everyone has a "I know someone who died of ALS" story. I got one today that gave me hope. When it first started I was so sad. I am not sure why anyone wants me to hear how their family member suffered and died. But they all do. Today's was good. The father hadn't been suffering at all and just died in his sleep one night. No pain no agony, no pneumonia, no anything bad he just went. So I am now praying that is how Dan goes. What a blessing that family had. Every time Dan says he hurts wherever it hurts me so much that my stomach tightens and I feel a little like I am dying inside. It is horrible to see and feel. Now some people think I am so great because I am still here and still trying to do everything I can do. But that don't see me in my weak times. Some times I just want to curl in a ball and block out the world or just cry until I feel better. But I know it will never happen. In the beginning I thought that I wanted to go first so I didn't care about me or my life anymore. I had to learn how to be careful again. I am just a human in a horrible position. One that I would never wish on anyone. Some days I can just barely survive the day. Then there are days like today when for just a minute after I wake up I think it has just been a bad dream and that he will be okay and then I open my eyes and start another day. Just hang in there no matter what. That is what I keep telling myself. I will make it thru this, too. For this to shall pass.