And It Continues ...

The last couple of nights have been more peaceful and restful for which we are thankful.  Dad has a hard time getting comfortable in the hospital bed, so continues to spend much of his time in the recliner.  He did request some morphine right away this morning.  His appetite is poor, so we are glad to see any bites he takes of anything.  He did admit that chewing is getting harder for him, so that puts a huge limit on the things he can eat.  In addition to that, he is just not hungry and we have to respect that.  The social worker pointed out that we seem to express a lot of love with food.  I could make a fat joke here, directed at myself, but suffice it to say I am a very loving person!!  An example of what we need to change is that for Dad's birthday I would often just buy him a lot of snacks he loves.  We have to change away from that and also change our thinking.

Increased arm weakness, particularly on his right side.

Mom said that my brother called last night and dad was not able to talk to him.  This is kind of a big deal because Dad would never want to miss Bill's call under normal circumstances.  He told me he can feel a change in how he gets words to come out.  I pray his voice and ability to speak level out and do not continue to decline.

I re-visited the ventilator topic with Dad this morning.  My main concern is that I do not want him to opt to not get a vent because he feels he would be burdening us.  Dad assured me that is not why he has chosen not to use a ventilator.  I feel very confident in my Dad's decisions and that they are the right ones for him.  I believe he is very confident in his decisions too, most importantly, and we as a family support his choices.

I think to fully support his decisions, we needed to understand this beast he is fighting as much as possible.  ALS is a monster, and causes my dad to carry a very heavy burden in his heart and on his shoulders.  I can only imagine what he is facing each day.  He is so mentally and emotionally strong.  It's really something to see!

We were thrown a loop because the average lifespan for ALS patients is 2-5 years.  This disease has progressed rapidly for Dad, so adjusting to the fact that we likely do not have the average has been hard.  Nathan said it best last night, "Mom I wish Grandpa didn't have ALS because then he could be here longer."  Simply, perfectly said.