forgive this discombobulated update. I am piecing together notes from the week.
Wednesday Night: Today we met with the director of palliative care to make arrangements for Dad to come home. Dad is resistant to having a hospital bed. Very resistant. While we want with all our hearts to accommodate his wishes, we must balance them with practicality and the state of my mom's back. We finally got it all settled and thought he would be sent home tomorrow via ambulance into a nice comfy hospital bed. In the afternoon he received his steroid treatment. He is on 'aggressive' steroid treatment and it makes him very agitated. This time was no exception. He was suddenly hitting his arms on the bed and then said, "After all these years, Gladys, this is how you're going to be? Well, I won't let you. I'm NOT having a hospital bed. AND the girls don't listen to me." Mom and I laughed which did not improve his mood. Funnily, when my mom told my sisters what he said about them listening, she said that they all replied at almost the same time that he must be talking about the NURSES.
On Thursday morning, we met with hospice and agreed to their care. The paperwork and logistics to do this are ridiculous. His O2 concentrator must be picked up by one company and replaced with the exact same thing by another company. Same with his bi-pap. Prescriptions are another confusing thing. It's just a lot in addition to understanding their philosophy and (not-so-impressive) methods. He was to be moved to the hospice unit at noon so that we could complete our training and get him home today. They finally moved him around 2:30 pm. This is not so, so late but after a week of disappointing news, this was a light at he end of the tunnel finally and any delays (unexplained and uncommunicated) were very frustrating for him and us. I should mention that on the same morning his general doctor stopped by and told my dad that he had anything from days to six weeks left. Considering that Dad didn't ask for this information and that the doctor isn't a specialist, this was poor bedside manner to say the lease. He really scared my dad and left him without much information.
When they took him down to hospice, they took him on a cart and Mom and I moved our cars because the wing is on the other side of the complex. When we got there, Dad was in his new room with the door shut and we were told that they were getting him settled. {you are about to find out why so many people die under hospice care} At one point, a nurse calmly asked me to check the set up of his bi-pap machine. I looked it over but said I'd get my mom because she knows the system and I do not. I got my mom and then my dad started to struggle. My mom looked at the system and said, "There's no oxygen hooked up!" We scrambled to get it for him and help him to calm down. Hospice gave him morphine. We questioned them on the lack of oxygen and were told that they weren't familiar with the system. I asked why they switched him over to a system they were unfamiliar with and got no response. We then decided that Mom would have to stay overnight. I must give Joe some major props here. He had just gotten home from work when I called him to ask him to take Nora to my mom's and figure out dinner with the girls. He did that, went over spelling words and bible verses, made sure baths were taken, and moved the cable system to the room that my dad will be in with a hospital bed. I am so thankful for him. Later, my pastor came by and offered us some comfort. He's such a good pastor and my dad really opened up to him. What a blessing. While talking, I asked my dad if he would give me a sign after he crosses over (as prompted by M.). He said that he would and when I asked what it would be he replied, "A twinkling in the night sky." Of course, I promptly said, "DAD! I see that every night! I need something that I'll KNOW!" He laughed and said he'll think about it. My pastor then told us that when we pass we are immediately with God and that he thinks this will make us even closer to the ones we can't bear to leave in that God is in all of us. He assured me that I would know the sign. A good thing about hospice care is that Dad can have whatever he wants to eat. He asked for a rootbeer float last night and I ran out to get it. He thoroughly enjoyed it. {Thanks to Y, he's coming home to his favorite famous beans.}
This morning while getting ready, Nora told me, "I want to be the little sister!" I suspect that this feeling comes from hanging out with Auntie Nisey last night. LOL - Nise never really got over Johna coming behind her... At hospice this morning, dad was doing well. A nurse came in to bathe Dad before going home. We went out to the waiting room and Mom wanted to discuss funeral arrangements. This is huge because my mom has been in a bit of denial. We talked about a few things - none of us have a clue how to do any of it or what it costs -- nothing big, just good that we talked. When we returned to his room, Dad looked good -- cleanshaven and such. Only... NO OXYGEN, again! For obvious reasons, I am more than pleased to tell you that Dad was brought home by ambulance and is resting comfortably. What a relief.
On the way home from the hospital today, I stopped at the store to pick up beer for Joe to have black and tans as a tiny little thank you for all that he's done these past few weeks. When I went up to the register, the owner had to look up the price. He told me that he never sells the 'expensive' beer anymore. I laughed and said what an indicator of the economy it was. He said, you're not kidding -- I have my regular Miller Light six pack guys who now have switched to Keystone.
While I don't know what comes next, I want to be sure that we take advantage of the time we have with Dad. I'm going to contact a local photographer to take pictures of all of us with Dad and will work with the girls to be sure that we all tell him whatever we need to or want to. If any of you have input on what to do next, I'm all ears and hearts and tears.
I will update on Nisey later. Thank you for all of your prayers and well wishes. They've meant the world. And Y, thank you for your famous beans. They make a Dad happy.
So uh, what do you like?
2 weeks ago
