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Susie's musings

An open letter to Mom

Dear Mom. Everyone says to me, "don’t wear yourself out; take care of yourself," and I think of you, making your way through 2 1/2 years taking care of Jack after his stroke and hospitalization, after your own breast cancer surgery, on the awful Tamoxifin drug, tired, and sad. And I can only answer, "Thank you Mom for teaching me Love." I did not understand when you were buying pre-mashed potatoes, and now I often eat "only cereal." I didn’t understand how Jack just sat and waited for you to come, not interested in television and books as he used to be, only waiting for you, until I saw Chuck waiting for me. I’m blessed to be out of the hospital, and I am blessed that he waits for me to come. God bless you Mom; you are one of God’s angels, and you have taught me to Love.

Our leisurely day began today with 8AM Mass where I read as a lector from the book of Isaiah, a mile walk with Chuck, a shower and shave given to Chuck by his geisha Susie, a visit from Mike and Lois as Chuck ate steak, potatoes, and eggs. A nap for Chuck to get him well rested up for a 4:30 PT session. Then the phone rang. Chuck is scheduled for a CT scan that the neuro surgeon needs for Chuck’s 11:30 Wednesday appointment. "OK", I said, "where?" When I mapquested the directions I knew we were in a ballgame. Travel north on the Palmetto Expressway about a million miles into Hialeah where all the street numbers mean nothing (like Coral Gables). The Palmetto has been under construction by a drunken rabble of men who didn’t pass 2nd grade. Many people fall into the Palmetto and are never seen again. With mapquest directions clutched in hand, I woke the sleeping Chuck, and we hurtled North into hell. Actually found the place and didn’t get killed doing it. After the CT scan, fortified with a chocolate shake, we headed south to Kendall drive for PT. Sat in a freezing waiting room (note to self, bring coats next time) counting my blessings that the PT location, 107 Ave and Kendall, is a straight shot home. Chuck went off into the bowells of the place with Edgar who came out all proud of where Chuck is and fired up about getting Chuck better, "walking a mile! keep it up!" This is going to be good for both of us. I haven’t walked a mile in years. If you come to visit bring sneakers. God bless us, everyone. Love Susie

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Susie's musings

My midnight walker

My dears… Have you ever wakened "in the middle of the night", cracked one eye open towards the clock, "2 AM," and heard water running? My next glance is toward’s Chuck’s side which is empty. Find my glasses and go into the bathroom on a stealth mission… He’s there in the shower. Now what do you do to a man who loves his own way, his privacy, is stubborn as a big oak tree, and who does things when HE wants. Well you gently advise him, "It’s the MIDDLE OF THE NIGHT!!!! Finish the shower and come back to bed! No coffee, no movies, BED, SLEEP!" Indeed, he reluctantly, with grumbling, climbed back into bed, and I lay there thanking God for those gentle breathing snores! This morning we watched a John Wayne movie called "On the Wings of Eagles" that had John Wayne overcoming a broken back and paralysis to walk again. He played a Navy guy who helped develop air craft carrier planes. Oh I love the patriotic movies. I went out to the grocery store in the middle of the movie and came back to find Chuck eating a bowl of cereal he made for himself. He’s OK! We then started an On Demand movie with Paul Newman, and friend Rob came over. The boys are sitting down by the lake now… All is well. Tomorrow we begin out patient rehab and Chuck will obediently do what rehab people say. He’s actually using the walker as rehab people taught him to, getting up slowly and carefully, etc. Chuck will be triple teamed next week with rehab, me, and cousin Carol cracking the whip. Have a wonderful sunny Sunday. God bless you. Love Sue

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Troopers in the house!!!

Chuck is presently sitting and talking with 3 troopers (Dave and Al are retired) and Andy, Chuck’s "new partner", plus our beloved neighbor Mike. WOW! I sneak off when people visit to pay bills, to write about drugs, and to negotiate getting drugs and rehab. I am so blessed to have help! Chuck took a nap yesterday and it was too long. He went to bed at 6pm and slept until midnight when he got up to make coffee. Made the coffee fine, but when I found him… I said "It’s midnight!!!!" He wasn’t allowed to get up in the hospital so here he says, "there’s no hospital rules here." So after a mile walk this morning I let him sleep one hour and got him up when Andy came with burger and shake. I warned him he had to get up to see Andy with burger, also he will sleep at night. If I don’t kill him with wakefulness, walks and messing up his drugs, he will survive and come out stronger. Cousin Carol is coming to crack the rehab whip, and friend Karen cracks the whip too. I actually made it out to shop some sales while Dave was here this morning. One more ride out to pick up drugs and then we’ll watch an Audie Murphy movie… and of course…. John Wayne. Happy Thanksgiving weekend!!! Thank you thank you for prayers! Love Sue

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Susie's musings

Home Sweet Home!!!

Chuck was released today from rehab (will return on an out patient basis). He just finished a burger and beans and is sleepy. We are home at the lake house all weekend and next week. He should take an afternoon nap, but we would love to see visitors in the afternoon and definitely for sunset. Please come and "do" sunsets ! I understand many of you are visiting relatives for Thanksgiving – Have a wonderful Thanksgiving! Next week is a good time to visit too. Love and thanks so much for prayers. Now, we’ve got him back and we start work on the cognitive "deficits…" (planning, problem solving, dee stuff). He already did a suduku… Thank God for many blessings. Love Sue

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Anticipation! How sweet the anticipation of freedom!

Today at the 3:00 meeting actually held at 3:45, the rehab team said Chuck has got a few deficits…. but there’s no reason for him to sleep at the rehab hospital any more, he can walk and talk, eat and eliminate, shower and live at home!!!! he can come to outpatient rehab to continue to tweak the recovery. I had my hand on the suitcase, but believe it or not… there’s paperwork to be done. Of the most importance is the doctor’s orders and other "sign offs." Chuck himself is excited to go home and I am very excited. I have to move slow and be quiet because he is still recovering! He said, "good thing we built that bathroom with a walk in shower and a bench." He showered himself tonight "in anticipation." This Thanksgiving we can say "thanks be to God for blessings" and we know a true miracle. I will keep you posted and I thank so many of our friends who were with us through this and have pledged to be with us until "the man is back" grumbling because he has lists of things to do, grumbling because he has to jog, etc… what else? Love to you this time of Thanksgiving. I’ll continue to blog especially tomorrow. God’s Angels have cleared many boulders out of the way, and I am sure tomorrow will go smoothly. Until tomorrow evening…. say a little prayer for Karen Skipp’s Mom who went into the hospital with pneumonia in Orlando. Karen is worried. God bless Karen, her Mom, and her family. Love to you all my readers, Sue

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Susie's musings

The good, the bad, and the wonderful

Chuck loves an early Clint Eastwood movie "The good, the bad, and the ugly"… well with all the blessings poured out on us, I can’t think of anything ugly. Today was, like Chuck’s injury, interesting. I made a special carry-in meal for Chuck today and as he ate, I asked about rehab. He answered: "The rehab girl walked me all over the place and she doesn’t make me use a wheelchair. We walked out side all around the gazebo." He went on and on about this walk outside, and I thought "He’s hallucinating. About what he wants, or what I do with him. He wants to go out, but they won’t let him." (The nurses on his ward make him stay in a wheelchair "for his own protection.") A few minutes after lunch, Chuck was wheeled away by rehab; I called Karen, and out of the corner of my eye, there goes Chuck with a PT girl, strolling all around the gazebo, walking a maze, waving to say "Hi" to people, doing leg stretches and all kinds of upper body coordination tricks the PT people do. "Oh I feel so guilty for doubting him!!!" He’s all up in arms because the nurses make him stay in a wheelchair and call when he needs to toilet. Protect him like wrapping him in cotton, and even gave him a full time assistant to protect him. I swear! Her name is Veronica; she’s at his beck and call. He will be so spoiled. We meet with the staff tomorrow and with the managing doctor who is making him stay in a wheelchair (anyone here heard of liability?) to protect him…. Chuck will say, "Let me have a walker! PT lets me walk!!!" My dog is in a fight. My first instinct is to fight for him, to say, "stop waking him up 4 times a night, let him sleep…. let him walk!" But my first reality is "rehab him." Friend Karen will try to come to the meeting and I’ll bow to hers and the doctor’s wills.

My own adventure for the morning was cooking a chicken dish for Chuck, packing 3 bags (Chuck’s clean laundry, my big bag, 2 sweaters, and the food) into the car and getting to the corner and having the tire light flash and ding. "Oh you sissy," I said to car, "it’s not winter yet." Car hates cold weather. But I’m not foolish either so I turned around to head back home and give the problem to Chuck. Realized he isn’t home, and turned around into Dick’s driveway…. Some of you have already heard my plaintive, "I need your help" and responded with much love. Dick walked around the car and we spotted a screw stuck in the tire. I then handed Dick my car key and asked to borrow their car and had all my stuff moved to their car when I said, "Wait! I have the van!" My brain only works on one thing at a time lately as you can probably tell from this rambling narrative. What used to be my competent brain is reduced to one cylinder and that one works slowly. Diane and I drove her car to my house and unloaded all the stuff into the van and off I went to give Chuck the special lunch. He then also ate from the tray they give him at the hospital. If Chuck lost any weight being on IVs and a stomach tube… he’s eating like a truck driver now.

So what’s the good, the bad, and the wonderful?
The good? Chuck’s progress; he’s alive… I thought he would die in post op, my prayer as I walked the surgery halls was his name. "Chuck… fight… Chuck fight." Today he took a 10 minute cat nap after lunch and then PT came – like clockwork. He woke up and moved off the bed, albeit grudgingly… and went off to rehab.
The bad? The screws that get into our tires (and our life?) when we least expect or need them. Not being able to sleep at night… I am finally sleeping well at night. Chuck has to deal with nurses taking his blood pressure at 2am and then getting back to sleep…
The wonderful? Friends that I can wake up at 5am and who will drive me to the hospital and stay with me there bringing me milk to drink, friends I can hand my keys to, friends who are praying for Chuck and me. Chuck is lookin’ good! Our God is an awesome God. Love Susie

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Yikes ! No rehab today

Our boy Chuck was ready for a jog when I got to the rehab today. The nurses had him in the secretarial position with a tablet I had given to him… he was writing and I noticed his writing has improved. But bored. On Tuesday I get to meet with all the rehab people and I’m going to ask them to consider giving him a walker to walk the halls and work off some energy. Sitting in a wheelchair is just frustrating him. I think he needs a good workout morning and afternoon. If there is no rehab, I will need to entertain him on Thanksgiving so will welcome visits all day. I am torn between "overdoing it" with too many visitors (which I think contributed to his relapse back to the ER – something I hope I never have to do again) and letting him nap vs him chomping and jerking at the bit. Yikes this is delicate business. I will write to tell you all if he has rehab on Thursday and if not… we would love a short visit any time. If there is rehab then he’ll need that rest from 3-4. I certainly hope there are some football games on. Today he watched the NASCAR race and then… there was no football on (the TV in his room has odd stations… there might have been football, but not on the channels the hospital gets). Well dears, please continue to pray for Chuck to regain decision making and patience. He’s having trouble with patience and what is called the executive function which helps him to make the right "conscious" decisions. I know you pray for us, and believe me, your prayers are heard in heaven. And thank you for the beautiful dinners. If I lost a few pound in the beginning you are helping me find them!!!! Love Susie

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learning to knit

Well my dears, Chuck had a good day of rehab, visitors from Coral Gables old neighborhood, speech therapy which involves moving stuff around in mazes, very complicated stuff… and only a one hour nap.. so I assume he is deep in dreams right now. I left him in mid dinner which is very hard for me to leave him at all, but it was dark and I am not a great driver at night and very tired so I ask forgiveness… He is fine as he has a nurse and a nurse’s aid on a floor that has only about 10 patients. Karen and Peter Skipp invited me for dinner and I ate great food! We are now watching a replay of the Gershwin award given to Paul McCartney in the White House…. beautiful music that makes me proud of the USA. Karen is teaching me to knit and Chuck will get a "rehab scarf" for Christmas. I will sleep here tonight amidst people who love me and have known Chuck since he was 14 (Peter). So my dears, I continue to ask for your prayers for Chuck. I want him back 100%. I am thanking you for the beautiful cards you are sending, and I have every hope of complete recovery so Chuck and I can continue to visit you and entertain you and love you. God bless you. Susie

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leaping and bounding and napping

Hi dear friends and family. I’ve observed two full days of rehab and Chuck is settling into a routine that I hope will be a full 2 weeks. We might hate being in an institution (being awakened, given food that is good, but not "Susie cooked", being taken to the toilet and then someone hovering outside the door waiting for you, being showered by someone…. although I think he enjoys being shaved… ) yikes not like home, but he gets rehab 9 to 11:30, lunch, back to rehab 1 to 3:30 and then he falls into bed! Today he had his glasses off and his head hit the pillow and I heard soft snoring noises! He’s up again about 4:30 to 5pm and I take him for a ride all around the grounds in his wheelchair for about an hour and then we wait for food!!!! he’s hungry. He has to work hard and he has to heal. The brain was stunned, and damage at this point is an unknown factor. He’s walking and talking and his sense of humor is intact. All systems seem to be go. He thinks he’s OK so he’s impulsive and trying to go faster than rehab folks want him to … some cognition and planning issues to deal with. Just need to heal. Friends have brought burgers and chocolate shakes i think twice or three times – probably need to think about cholesterol, but a couple of burgers is like manna when you are on salt free hospital food… and tonight I found the mother load! He sucked down his milk so I went to the desk and asked if he could have another milk. "Take what you want" she said, showing me where the refrigerator is…. OH boy! applesauce, milk, and ice cream!!!! He ate all 3. It’s the simple pleasures that make icky OK. Thanking God for many blessings. Love Sue

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Rehab 201 (19 out of 20)

Hi dear friends and family. Chuck had a full day of rehab. This morning he took 2 tests on a computer: they flash different colored boxes and you have to push a button when you see a yellow box. He got 19 out of 20. Then they played tones and you had to push the button when you heard the right tone. 19 out of 20. They are exercizing his legs and walking, but they make him stay in the wheel chair during rest times which drives him nuts. They know there were seizures and a day of dizziness at Baptist so they are all over Chuck to be careful. So he learned to drive the wheel chair. When I took him for a walk today to the gazebo in the gardens outside his bedroom window at the back of the hospital; we were talking and he drove out down the walk. "What are you doing?" I asked, and he answered, "I wanted to be sure it is raining". I guess he saw the rain and wanted to go out and feel it – and indeed it was sprinkling. Then we road to the front of the hospital and I saw parking spots and said I wanted to go to his room and get the car key to move my car from a back lot. I parked him in front of a lovely water garden and when I came back he was gone. I thought….. "Oh we are going to get in so much trouble." He was headed across the driveway to another garden. "You stay here in the garden!" I fiercely said and went to get my car and indeed he stayed, driving up into the garden and was waiting for me. He is rehabbing quickly and not having any dizziness, but he is ready for a nap after the 2nd rehab. Today he got to the room at 2:30 and was snoring at 2:45. I love to hear him sleeping as I know the brain is down and healing. He wakes very slowly so let’s say he rests between 2:30 and 4:30. … He is eating well. Tonight he ate dinner and then Peter came with burger and shake and he ate that too. I hope he won’t have discomfort from all that food, but I don’t think he got a lot for lunch in rehab. … He’s being pretty good and behaving and the staff is very good at taking care of him. He liked the male nurse who washed and shaved him this morning, and he likes "Julie" who drives him to rehab and brings him back! Thank you Lord for 19 out of 20! Love Susie