Dad moved out of ICU and back into his original cardiac care room. He goes in today for surgery for a PEG feeding tube through his stomach.
That’s the date on the sputum canister that is filled to the top with a murky grey froth…Today, he breathes without congestion. The man of so few words has been reduced to none by the tracheotomy. His pale, blue/gray blinking eyes do all the talking for him.
I watch Dad’s face as he watches the nurse feed chalky liquid through his stomach tube. Despair. He has been without real food or drink for 34 days. It all feels like too much to bear. It’s so hard to see him this way—unable to roll over in bed without help, to keep from drooling when sitting up. What prepares us for this?
Tried to give blood today at the blood bank outside the hospital. Halfway through my blood clotted and stop flowing. Have a meeting at 1:30 with Dad’s doctors. Prognosis poor – they say we’re looking at long-term care. We need to talk about living will and power of attorney. The social worker is going to initiate the conversation – phew.
Yesterday was a bad day. We had Mom do us a favor and drive over to Dad’s house to turn the furnace on to keep the pipes from freezing. She turned the one without the vent on, which could cause an explosion. So I’ve got Mom on the phone yelling at me and Dad in the hospital bed going into conniptions. Day 40 and I’m not sure how long I can keep holding things together. Just got a message from a friend whom I haven’t heard from since this whole thing started, calling to “See how it’s going”…
Dad moved his left leg several times! He will come out of this and walk again. And if he walks again he may get his life back. He’ll prove those doctors wrong.
Dad was bright eyed and cooperative this morning. The antidepressant must be helping. Surprised that he agreed to it. I’m feeling very unproductive. Went for my break at the beach. Didn’t run, didn’t swim, didn’t read, didn’t write, didn’t sleep. Back at the hospital now.
Dad startled me today. I had my back to him and was writing him a note that I came by again since he had fallen asleep. “Aren’t you cold?” he asked, his voice strong and husky. This is the best his voice has sounded and the first time he initiated conversation or asked about me.
Dad looked good this morning, then threw up and wasn’t doing so well. It’s like New England weather—unpredictable and mostly unpleasant. One day, I think we are on the road to recovery, the next, it looks like we still might lose him. 50 days in the hospital. I can’t believe my best friend hasn’t called all this time…I asked Greg to start looking into facilities for Dad in CA…
Dad can move his left arm! I saw him moving it in his sleep – not reflex moves, but intentional readjustments. When I asked him, he said he couldn’t. Now the PT confirmed it- she held his arm in a conducive position and he moved it ever so slightly. (In sleep, he is uninhibited by his thoughts.) He was off oxygen all day today too.
Before I left last night, Dad asked me to read Mom’s cards to him again. He said he wanted to know what she was thinking of him. It hit me – could he still be in love with her after all these years?
Been bugging Greg to come back…He said MAYBE he will make it out in a week.
Life changes tomorrow. Dad goes to a rehab hospital in Honolulu. It will be a different commute for me. Dad said something on the phone to Greg about how I am the only one who knows how to take care of him. I can only imagine what he’s thinking…
They think Dad will be able to partially walk with a cane and personal assistance. They say it’s where the person is at the six month point that is telling as to how much they’ll recover…Dad’s spirits are up. He’s telling jokes and I’ve actually seen him laughing.
Dad had a cognitive evaluation the other day. He read a paragraph from the newspaper and then summed up what he had read. He did fine. In the hospital he had me read his Calvin & Hobbes to him because he said the print was too small…not so apparently… At least I was doing something for him that he wanted. Perhaps he knew I would be better doing something. There seem to be deficits here and there – he spelled his last name with 3 b’s and wrote 11K instead of 1k. The therapist did not seem alarmed, just said Dad would need to work on attention to detail. I’ve been handling all his bills anyway. He is starting to talk more and more spontaneously with the speech device in the trach—rarely resorting to the clipboard. Hopefully he will kick the infection and pneumonia soon…
Dad was in a bad mood. They keep putting diapers on him. It’s more convenient for the nurses. I don’t care. He is not incontinent—just needs help to the toilet. Also, I noticed that there is no consistency with how the aids put him back in bed and they do not encourage him to help. I thought this was rehab?! Will talk to them.
I’m exhausted. I think it’s going to be a while before I feel like myself again.
Need to talk to discharge planner about dates so we can lineup the facility and flights. If only his ability to swallow would come back in time for Thanksgiving—that would be something to be thankful for. Need to make phone calls and figure out Dad’s insurance details. Need to figure out what I am going to do for work when I get home.
Took my friend’s dogs for a hike. Made phone calls to sort out the insurance mess.
I have a headache. Spent most the day with Dad. He surprised me by saying “Thanks for coming. It was great.”
So the day has finally come. I’m going home and Dad’s coming with me. The other day he gave a direct blue-eyed gaze and quietly asked, “Will you come live with me?” Ugh. Part of me wants to do anything to make him feel better, but …I evaded the question the best I could. That would certainly be the end of life as I know it. At 35, I feel as if I haven’t even had a chance to really live myself.
I’m a little concerned about the flight for Dad. He hasn’t been doing so well these last 2 days. He pulled his trach out the other night because he couldn’t breathe. He could have ended up back in ICU or worse.