Left, some weirdo who came in off the street and wanted a picture taken with mare???
Below, my two night angels that gave me rest!
Mare did not even suggest getting out of bed today. I think that took a lot out of her to get out yesterday and to make the trip outside. Her respiratory therapist wanted us to try a full face mask in order to solve the never ending mask problems. We tried it and mare hated it. She felt clastrophobic and we went back to the current one. That is always so stressful for her.
Mare wanted to browse facebook so i put the laptop on her lap and moved her hand in place to use the mouse. She quickly realized she was unable to control her right hand to navigate the page. ALS has finally taken all of mares limbs and even the little tiny pleasures of life she could enjoy. She became very frustrated and then started to cry. I had to wipe the tears from her eyes. How cruel this disease is. It leaves your intact mind to be trapped inside a lifeless body.
There is hope for the future though. Mare and I were alerted to new breakthroughs in familial ALS that could be a possible cure. We shared that with Brian. I could not wait to tell him. I cant wait to tell Lauren. Along with dealing with great sadness of Mare, lingering in the background, laying just as heavy on all our hearts is the fact it could strike again. I could not do this again. I dont know how Gpa is doing it. If this news is true, it is a huge lifting of that weight. Mare told brian is was too late for her but for those in the future who might get this, they have hope. I cant find the link right now but will post tomorrow. It is somewhere on Mares facebook.
Our social worker will visit today. I also have night angels again!!
Last night i dreamt of mare and me before ALS :(
May Mare have a restful and peaceful sleep.