Adjusting Others To Routine

Tuesday, 6 March 2007

Picked up some lunch and went to visit Dad at the hospice home. By the time I got there, Uncle Gary and Uncle Ray had just left from visiting and bringing some sushi for lunch for Dad. I stayed until the evening, often adjusting Dad's bi-pap machine and trying to clear his nose of mucus and helping him to surf the internet and write emails when the stick control for his mouth would get frustrating.

When it came time to bathe and toilet, Dad wanted to be flipped over on his stomach so that he could spit out his mucus stuck in his throat. But, he got frustrated with me and the nurses as he couldn't communicate his needs clearly. Throughout the sponge bath, he continued to remind me about how I should know and should have told them. Yes and no. I don't want to step on their toes either. They are nurses after all. They should have an idea of what to do to take care of their patients. It's their job.

ALS can be a frustrating disease though. Not only for the patient, but for the caregiver as well. My dad's mind is fully functioning and he knows exactly what he wants. He just cannot physically do what he wants to. So, he tends to become very bossy (but he probably was before the disease too); though I can also understand that when you have lost all control of your body and your independence, if all you can control is your voice and your mind, it tends to lead you to use that to control others. It's a pretty common trend among patients who have progressive ALS, and can you blame them? Caring for him over the past year, I've noticed that if we're not actively "doing" something (crossword puzzle, reading the paper, etc.), he will be more demanding and find things for us to do (fix his mask, move his legs, change the channel on the TV, etc.)....It's almost as if more interaction and stimulation is better, which makes sense. I mean, who wants to sit in the same position in the same place all day and be bored with nothing to do??

After he was sponge bathed and situated back in bed, he "let" me go to get some fresh air, and the nurses invited me to eat some food they had barbequed in the backyard. The nurse Marina, who worked closely with my dad today, reminded me that a lot of times the illness makes patients act as they do, frustrated, etc. It was reassuring to hear. The hospice staff was having a monthly meeting with all of their nurses and volunteers. I got to meet one of the family members of a patient. She is here from Boston, visiting her sister who has been in the hospice home with an incurable lung cancer. We talked about our loved ones' illnesses and how they are both young (her sister just turned 58) and how they are both frustrated with their inability to communicate clearly (as her sister's cancer has left her without a voice).

It is sad, yet it is nice to be in a "home" vs. a hospital. It doesn't feel like there are sick people all around. The nurse put a bird feeder outside Dad's window so that he can watch the different birds come by. We brought Dad's telephone from home so now he has a speaker phone he can talk on when people call. Although I'm still coming here everyday after work and perhaps it's not quite respite for me, it's kind of neat to be in a different atmosphere (and an air conditioned one at that). Besides, I have been restricted from exercise this week and have to take it easy, so it's not that bad to come and visit Dad and meet new people.

After I fed Dad dinner (he enjoyed the salmon and mashed potatoes and broccoli they had made for him), I showed the nurse on the next shift how to adjust his mask and when she asked about his pills, I said, "Don't worry, he'll tell you what he wants or needs." Then, the 'third shift' showed up....my dad's friends Frank and Sharon and my stepmom Bernice. So, I left around 8:30 pm and headed home to the husband.