A typical day

There is no such thing as a "typical day" when somebody is dying. Every day provides new surprises and challenges. Most days I am up at 5:30, and down at Daddy's house by 7:30 or 8:00. I asked the Aide with hospice to change her schedule if she could, so that I can come down later in the day. Scott gets home about 9:00am and I miss seeing him for those few precious hours.

Today is the first day of the new change, so we will see how this works out.

I get his mail, walk in the door, and immediately starts whatever laundry Sandy puts in the washer for me. Bedding, soiled clothing, whatever. Then I go see Daddy. Some days he is doing better than others, and some days are pretty rough. He fell the other day, and split his arm from wrist to elbow, so I have to change the bandages on that wound, clean it, add steri-strips if needed, then re-bandage it up. He also has a wound on his leg from running into the edge of a table, that I have to do that exact thing to, as well.

If he hasn't had a shower, I help him do that. Hopefully, with Sandy coming later in the morning, I won't have to do that. He also has a rash, that he has had for 3 months. We have tried every pill known to man, every cream that is RX or OTC, to cure this rash, and finally may have found a solution. But, with this rash, I have to put cream on him from his neck to his knees. He seems to almost come out of his skin because it itches so bad. Hopefully, Sandy can start doing this for me as well. I have to make sure he has taken his morning meds, fill up the medicine box, and make sure he hasn't gotten confused and taken the wrong day or time.

Then I start my chores. I have to sort through the bills, insurance EOB's, and whatever else has come in the mail. I only pay his bills once per week, which makes him crazy, because as soon as a bill comes, he thinks it has to be paid that day. I have to make cookies for him, because that is about all he seems to eat. We are "pleasure feeding" at this point.. so he wants cookies, he gets cookies. Any messes that he has made, since I was there the previous day, need to be cleaned up. Vacuuming, dusting, mopping, dishes, taking out the trash, taking the trash to the dump, cleaning the carpet - whatever needs to be done, I do it. I do his grocery shopping whenever he needs a few things, so that is only once per week.

He has always thought of something the has to be done, while I am gone, so whatever else he dreams up for me to do, I do. My goal is to be down there 2 hours. It usually ends up being 3 to 6 hours, and I am trying to work on that, because my health is starting to suffer.

Then I sit down and write down his vitals, and any health changes for the nurse on the pad that we share. I also have to write down any meds that need refills or questions about meds. By then, the laundry is done and I switch it over to the dryer. If there is some in the dryer, I fold it an and put it away.

Then I make sure he has everything he needs, and I head home to start my jobs here. Homeschooling, cleaning my own house, laundry, cooking, all the normal things to take care of my family and household.

My goal is to not have to work myself to death at his house, but to be able to actually have time to just sit with him and listen to his stories, or whatever he wants to talk about. I am going to have to initiate some changes to make this happen, but I will make it happen.