Breathing Difficulty

Sunday, 8 April 2007

Since the beginning, my dad has felt like he doesn't want to burden us. But, I moved home to take care of him. I made that choice, as I was living away overseas at the time. And, I knew that it was my choice to do that. I don't regret my choice, as it has given me valuable time to spend with my Dad. Even now, I know he feels bad that I am newly married and pregnant, and he doesn't want to put undue pressure on me or my marriage/relationship. But, Chris is very supportive and understanding, and knows what we are doing is best for my father. I always try and tell my dad that he is not a burden, even though the day to day frustrations may sometimes convey otherwise. It's a reality that 24/7 caregiving is emotionally and physically draining, especially when you don't have a lot of help. But, it's bittersweet really, as I feel like it also gives us valuable time, time that I otherwise might not have spent getting to hear my dad's stories from the past, seeing his old friends stop by and reminisce, and looking through old photos and recalling fond memories. Time is precious. So, I try my best to remember that, and to not take things out on my dad if I've had a long day at work, etc. because I know that he never asked to get ALS, he never expected to lose his independence so young...I figure it's okay to be selfless for awhile and give time to my dad, because it's that precious time that I'll never get back later. And, I'm grateful that he's still here with us.

Today was spent waking up late since I went out last night for Stacy's bachelorette party. Chris and I made waffles and bacon for a late brunch. Dad's former coworker Bert brought over a DVD for Dad and visited for a bit. All the boys soon fell into naps, so I napped out on the couch near Dad. It was so hot and muggy in the house, that it just turned into a lazy afternoon. Chris and I were able to get away for a quiet Italian dinner at Verbano for about an hour, while reflecting on my stepmom's recent request to return to her house. Right now, we just want him to be comfortable where he is, without any stress or anxiety.

2:37 am Dad woke up and was anxious as he didn't feel the air from the bi-pap was strong. His voice was definitely not as strong, and he was having difficulty talking. He said he could not suck the air in. I checked all the hoses to make sure they were properly connected (as sometimes in the night, they have come loose before). He wanted me to switch the hose directly from the machine to the mask, instead of from the humidifier to the mask. After checking for leaks in his mask, and assuring him that everything was okay, he still did not feel right. He said the machine wasn't working. I woke up Jay to reassure him. I pulled the hose out of the machine for a couple of seconds so that he could hear the forceful air being pushed out, the loud drone sounding like that of a vaccuum cleaner. But Dad still felt uneasy.

At 7 am, I called the respiratory therapist and asked for the bi-pap level to be pumped up, as due to Dad's lethargy all weekend (I nearly had to wake him up for meals because he was sleeping all day) and his anxiety and voice, I don't think the current level is working efficiently for him.