My fear of Dad coming down with the pneumonia bug was not unwarranted. As I began to recover his throat started hurting. Followed by a cough, which was followed by a chest wracking, wheezing that was hard to stop. Things began to go downhill from there. Dad hasn't eaten anything of substance since Friday. He takes in very little liquid. He continues to pee with surprising regularity. He's also been quite restless though not in an excessive amount of pain.
It all makes for long days and nights for both Dad and I. Since Dad is the one whose body is shutting down I dare not make this about me. But it's really the only point of view I have. As a caregiver I swing from compassionate and kind to frustrated and angry. Some times I understand what he wants/needs and other times I'm on the phone with triage playing a guessing game of matching up Dad's symptoms with suggested remedies. Many has been the night when I've poured out my heart to a person on the other end of the line, only to find out it is the answering service. That's a complaint, but a slight one. Most every Hospice person I have talked to has angel wings of one size or another.
Yet as the week progressed I've seen Dad begin to wither away. I've read Crossing the Creek and the Butterfly Book enough times to see that he is moving closer to the "process" though I've never been sure how you know where the demarcation line is. Not eating is getting pretty close.
Finally I got to the place where I had to ask for help. I knew there was a good chance I was going to wear out and didn't want it to be before he did. After a guarded assessment this afternoon, with knowing looks passing between the doctor and the nurse we decided to move Dad to an inpatient facility to maybe rebuild his strength and to give me a chance to take off my caregiver hat and put on the daughter hat again. It sounded good in theory.
Dad half-heartedly agreed. Maybe more for me than for him. An ambulance drove up to the house, two men put my fragile father on a stretcher and took him away. I pray, earnestly pray, that my failing short term memory will kick in and I will forget the look of fear that filled his eyes as they began their retreat.
Sweetie and I followed a short time later. By the time I was got to the facility, Dad was in a bed, propped up with pillows. Not the kind of propping up where you are surrounded by plump feather pillows and covered by 600 thread count sheets, while you wait for room service to bring you some kind of treat. No this is a hospital room, and even though it is dressed up to look like a Holiday Inn Express to make you feel good, everyone knows you aren't going to feel good or you wouldn't be here.
I got a tour of the hallways. The vending machine stocked kitchen, the "family room" with a TV and computer to use, the patio. All very nice, but it didn't take away the knot in my gut. The knot that continued to grow as Dad began to get restless. The nurses call button/hand and foot raising device looks oddly like a video game control. Dad's engineer brain kicked in and he spent several minutes "seeing how it works." He never quite got it which is an indicator in itself how he failing.
After the thrill of the gadgets wore off he asked "can we go home now?" in a plaintive voice that broke my heart He repeated the request a few more times as he grew more restless. When the nurse came in to inject him with some medication (nothing by mouth as the risk of aspirating is high), he almost vetoed the procedure which was totally within his rights. The old lion tried to roar but it didn't have much umphf in it. Finally he agreed, asked where I was going to sleep and the day's toll started leaking out of my eyes and doesn't want to stop.
I sit in the chair next to his bed, close enough to reach out should he wake up and assure him that he is not alone. The cot where I am to sleep and get the much needed rest I was promised is folded in half by the door, waiting for me to put it to use. Looking at it, I'm asking myself can we go home now?
I feel both relieved and guilty at the same time. I feel like I've made a good decision and I feel like a big fat wimpy baby. They are going to have to prove to me that this is for the best or we'll be back home where I will complain about the hour long trips to the toilet but at least feel comfortable in our own surroundings.
I'm not saying anything bad about hospice or this facility. I imagine it is as good as it can be. Still, like the Hotel California, people come in and never leave. Well, they leave, but not through the front door.
How is it that this whole dying thing has been on the playbill for almost two years and now when the dress rehearsals are over and we're actually in the wings peaking around the curtain, I've got stage fright? I can't have stage fright. I have to be strong. I know my lines, they are fine tuned. I've told Dad it's okay to leave. I've painted a picture of Mom and Black Beauty standing at the Pearly Gates waiting for Dad to cross over. Trouble is the word "goodbye" sticks in my throat and doesn't want to come out.
I've been writing for an hour. The meds kicked in and Dad is sleeping soundly. I guess it's time to open up that really comfortable looking cot and try to sleep. Who knows what tomorrow will bring? Sorry for the rambling. I've got to get the words out of my head.
Wishing for you a sweet goodnight,
Not so Merry ME