*hugs* Hon. It truelly is a horrible disease.
I am so sorry your husband has it. I know how stressful and feeling overwhelmed, overworked, unappreciated, and crying yourself to sleep. My only advice is try to do as much together as possible. You won't regret it.
Near Jason's last days, we took our 3 year old to see Thomas the Train, went to the Zoo, to the Children's Museum. We went on dates. I know we got several stares when we went places. Going out to eat, as I drove his chair in for him (with a "diaper bag" of sorts for him), reclined it to get the pressure off his tailbone, placed a towel over his chest (as a bib), got out the "bendy straws" (that were smaller in circumference and with the bend, easier to get in the small crack on the side of his mouth where the muscles still worked and minimal liquid so he wouldn't choke) to put in his drink. Pulling out the menu, watching where his eyes went to, asking him if thats what he wanted, him giving me the affirative look. Me, ordering for us both. Feeding us both at the same time, his fork in my right and my fork in my left. Watching for him to glance at his drink to give his drink etc. Talking as if this was our normal, and a conversation that he could look at me affirmatively, or with a smile where a laugh use to be.
I can remember our last valentines day together, here I had dressed Jason in a t-shirt and shorts, socks and tennis shoes. And I dressed in about the same attire. We went to a fancy restaraunt, where everone was dressed up to the "nines", and here we came in all causal. Jason in his chair, with his "chuck" under him, with me driving him, holding his "diaper bag", etc. It was quite crowded and busy that night. Everyone seemed to be a bit irritated by the wait. But we didn't seem to mind. We were on a date and were together by ourselves. Time seems to take on a different meaning altogether somehow. We were seated, both got alcoholic beverages, appetizer, the works. We took our time and enjoyed our time together. When we were done, I went to try to pay for our bill (which was over $70.00) and was told by our server, that someone in the restaraunt had saw us and had wanted to pay for our meals anonymously. To this day, I still don't know who blessed us, but it definately made us speechless.
2 weeks before he passed, we went to our old school's homecoming concert, that had several artists, one of which was Dierks Bentley. If you knew the auditorium, it has steap incline aisles that narrow as you get to the stage. Here I had my purse, his portable oxygen tank, his "diaper bag", and was driving his motorized chair backwards down this aisle. I must have looked like a sight! It was insane, but to see the look on his face, the smile, the twinkle in his eyes as he listened to them perform, it was all worth it. Sure, I was giving him morphene during the concert, and date, but he/we didn't let death's inevitability rob us of our time together.
Trust me, I know you will think how utterly exhausting it is to get him ready to go out on special outtings, but when you're on the other side, you won't regret it, and you and your son will have those times to remember. Sure, your son may not have memories, but he'll have pictures, and you will be able to share stories of how you guys had fun times together.
My 4 year old on a weekly, even daily basis, will ask me to show him pictures of Dadda on the "peuter" (computer) or videos of him and Dadda. He never tires from that. At the breakfast table, he will ask me "Momma, tell me another story about Dadda.." Even at the funeral (which we video-taped), you can hear (on the tape) our son in the background as the picture collage was streaming with music.... "that's me and Dadda"... "thats Dadda"... "that's Dadda and me and my Momma"...
*hugs* and much love hon.
It will make you feel better too...I am just overwhelmed with love and compassion for you. Not pity. But strength of fortitude and character. You are an amazing woman and I am proud to have known you in this way....((((Hugs)))))
