Saturday, October 25, 2014
Honey started calling me about 6:30 am today. He must have called 5 times before 3. I was out on the mower trying to catch up on some of the yard work the last time he called and had to turn off the engine to hear him. He wasn't talking clearly today. I realized that even though he was not coming out and asking, he wanted me to come. I put everything up, dressed and went on down to the hospital. He was anxious and waiting. Same ol' same ol'. He had surgery last night, his abdomen is extremely tender, his legs are cramping and all he gets is Tylenol...and not very often. We called for it just after 5pm. At 5:50 the nurse popped her head in and said he could have it at 6. She came back about 6:40pm, tested his blood glucose, gave him insulin (by the way, Honey was NOT diabetic when he went into the hospital), and then apparently gave him the pain med. It was after 7 before it began to take effect. I rubbed his legs, practiced his swallowing exercises with him, gave him a mani and pedicure, read cards with him, ANYthing to distract him, but the agony of despair is on him like a leach. I've never seen him express any depression or frustration, but tonight he was very clear as he clenched his fists and raised his voice to declare, "You cannot imagine just how miserable I am". I asked him several questions .."Can you see any improvement in how you're functioning from 2 weeks ago?, Is everything all right between you and God?, Would you rather I not come so often, am I frustrating you by smothering you?, What's the greatest thing that has happened this last year?, What is your goal?, What's the worst thing that can happen?, Can you settle for half-way?" and on and on. He seemed to answer honestly. He has reason to be depressed, but he insists that "I'll get over it".
If I could I would touch him, pray and get my own way, but this is in God's hands. He asks for prayer and I pray and I stumble over words and fight not to let him see my own beliefs and concerns. He is down to about 170 pounds now. Still fighting to get his independence back and still wanting his favorite foods. I heard staff giving report at the shift change talking about Honey and felt bad when I heard "He's really been needy today until she came and we haven't heard much from his since. You shouldn't have to do anything for awhile" Later, just before I left, I called and asks for help to reposition him so that he could rest. In came a young woman with a face shield on and the standard gown and gloves. No eye contact, no conversation, no warmth...just business. I tried to draw her in, but the response was ice cold. Prayed for her before I left...he's down enough without being treated like he's poison. It amazes me that even though he's supposed to be in isolation, any time he leaves the area...nobody wears any protective gear and neither does he. He doesn't seem to notice. I doubt he cares. He told a staff member yesterday that he felt like nobody cared whether he was in pain or not. 52 days and counting. God has a plan. Praying for a submissive spirit and willing heart. God is good
Thursday, October 23, 2014
In from daily visit with Honey. Excellent Speech and swallow therapist with us tonight. Honey is not able to consistently complete therapy sessions and the staffer told us that that biggest concern was the extreme lethargy and weakness that all the different clinicians are seeing. He has lost most of his muscle mass, the dialysis completely exhausts him, and he has to push to get through each aspect of his care. He's been put on the side of the bed several times and begs to lie down because he has no core strength left and fights to balance himself. His motivation right now is to be able to enjoy a chocolate milk shake, some peanut butter pie, and of course, a rib eye steak. He wants to sit down in his recliner and hold his cats and nap. Simple dreams. He has failed the last 3 swallow studies and he is impossible to understand from time to time. I'm still trying to do passive exercises with him and the therapist that was there tonight gave us a series of exercises that we will do with him every time we visit. His next swallow study will be 3 weeks from now. Until then he will get his nutrition through the doppler tube. The internal bleeding still seems to be under control, the heart rhythm is still off but more acceptable, and the central line has been successful. The staff frustration comes when he begs for a Tylenol and can't have one but asks again....and again...and again.... My question to the staff is ...can't you give him Something? But I'm told that the doctor is VERY conservative in his medication choices for his patients that have swallowing or body control issues. I get the impression that no medication is supposed to be the best medication.
Try some of these exercises. Stick you tongue out as far as you can, hold it down with your teeth and try to swallow. Easy?? Now stick your tongue out for 3-5 seconds and then pull it back in against the back of your mouth for the same time limit. Say each of the following words 10 times each with force (not volume)...Earl, hug, cook, walk. Last...repeat "eh" rapidly 4 times in a row for 10 sets...like a machine gun. Can you imagine Honey having patience with repetitions and motions like these? I told him the day after he was cleared to swallow that I would make him that peanut butter pie. He knows I don't cook...but I have a few friends who do and I think I can get some help and then lie and tell him I did it all by myself. I'm sure he'll believe me.
I was blessed by my boss to have time off today and was able to get several 'hurry up" chores completed before I went to the hospital. Honey's truck had a low tire and I made a quick run to check all the tires and wash the dust off. I need 3 of me. But people have been so kind and generous with their help that I feel more blessed than I ever have in my life. I have my list and am checking things off. God is good.
Wednesday, October 22, 2014
I have been avoiding posting like the plague for the last week. I feel like Iím pulled in so many different directions. I have a friend who lost a son a couple of years ago, her only child, and her cousin was sharing with me that the grief had torn the parents apart. One parent will not show any emotion and the other cannot stop displaying the raging agony sheís feeling. The mother went on a stop-by shopping trip with the cousin and when they walked into the large chain store, Christmas music was playing and, as had been their custom since childhood, the girls broke out into a silly dance that they had choreographed as children. They reached a point where they were supposed to spin around and clap hands after the turn. Cousin spun and suddenly faced the horrified eyes of the mother who froze for a second, took a step back and then headed out the door. The mother had accidently fallen into normal life and it terrified her. Back in the car, sobbing, she kept apologizing to the cousin who tried to reassure her that it was alright to laugh again. But the mother felt, and still feels, that to go on living and enjoying life is a betrayal to her little boy who was only in his twenties when he died.
Iím relating to that motherÖonly itís Honey thatís on my mind. Heís so bored and frustrated but Iím being ministered to when I sing on the Praise Team, or finish a project, or talk to my grandson, and have the energy to keep moving. I feel guilty that I can stand and walk and eat what I will and go where I want to and nothing stands in my way. Iím not suffering, he is. I have silly little arthritis pain that I can work through, he canít turn himself over and has started crying out if I move his leg too fast. I feel shame that I leave him in the care of people I donít trust, but he never says anything bad about any of them. Iím lonely for my mornings with him, and for my Sunday afternoons, and for our drives, and bickering, and disagreements, and for the adventures he took me on. And thereís where the pain is for me. We are not connected, but he is the center of my days. I do not belong to him and yet I am chained to him...He makes me laugh, he encourages me, he brags on me, he teases and provokes and ignores me and now I canít do a thing to pull him away from this deteriorated body and back into our life. Iíve finally set a routine but itís too different from the way we liked life. I get up about 4:30 am, dress, go to his house, do chores and talk to the cats, head for work, finish the day and pick up his mail on my way to the hospital. If I hit traffic I donít get to have as much time with him. I try to stay a couple of hours and head home to get ready for the next day. I am stranded. There is no time unless it is stolen and then I feel guilt for taking it from where ever it comes.
People have asked what they can do to help. I donít know. I have no organization. I have no plan. I have no idea of what needs to be accomplished and what has to be done seems frivolous. If I laugh people say Iím slap happy from lack of sleep, if I cry Iím told to trust in the Lord, if I make a statement that is not emotion based Iím in defense mode, and if I say a better day is comingÖthen Iím in denial. I weigh my words on the scales of what response can I handle in the here and now.
Honey is in his own cycle. He has dialysis every other day. That means that he is attached to the big box for 3-5 hours at a time. It makes noise. It is intrusive. He is approached by strangers who push buttons that turn his bed into a chair and he is told to sit for 2 hours. He is not repositioned and canít lean or pull himself for comfort and pushes the call light to ask for help. No one comes. He calls out when he hears voices passing in the hall, but no one responds. Sometimes he is shown mercy and a staff member will come and recreate his bed position, but always with scolding that the doctor says he is to stay up for 2 hours and needs to push himself to do just that. He is in the hands of people with power to do as they please who have been taught repeatedly that they can only do what they can do and to let the rest go. Nursing staff members work on 12 hour shifts that last 2-3 days at a time. He gets excellent care for one brief period and then falls into the hands of the inept or uncaring. Night time comes and he is alone to his thinking. This once busy, attentive man lies and tries to calm the rolling thoughts that shoulder into his mind. He has no guarantee that he will heal, he has no time line, he has no information, he has no plan of action. Honey has reminded me often that a funeral is not the end of the story. Life goes on and people forget that those who remain still need to be remembered. So, Honey has always made a point to visit families or call even after the potato salad has been put away. He misses his friends. He misses his cats, and he misses himself.
Shift report, that period of time when the staff from the day gives information to the staff who will work the night, or vice versa, often happens in the hall by his door. They overlook his ability to hear while they discuss his condition, his planned care, his reaction to medication, and his personality. They talk, and if Iím there in the evening, I listen too. We are not objects. We are humans who happen to be in this particular season of life without any idea of how long we will tarry here. They do not mean to be cruel or detached, but they are. They always stress the phrase, ďHeís a no codeĒ. For some, this is a summation of our world today. There is no hope, there are orders not to resuscitate, there is no reason to pay attention. Stay in the walls of the Church and sing the songs and read the lesson and go to Cracker Barrel for lunch and smile and shake hands and come back next week, yaíll where weíll do it again. But thatís not what we were commanded to do. I did not become a nurse to leave humanity behind and care for empty shelled bodies. I did not become a Christian to isolate myself and pick and choose my blessings and leave my responsibility to serve behind. The service men I work with often tout proudly ďleave no man behindĒ. We Christians donít seem to share that determination. We are at war with principalities that discourage and threaten our families and we often shrug sermons off that would lead us to a more involved lifestyle declaring that we just donít have time.
I donít have time. I donít have time to go to Honey. I have fields to cut, plants to get in, leaves to rake, a sister who needs companionship, a baby to see, chores to complete, paintings that need attention, and animals that need tending to, and parties that are skipped, and on, and on, and on. But priority dictates first things first. Weíre running out of time. What has priority for us? I love to shop for crafts and art supplies and canvases and plants a now nothing seems important. I keep losing things. I keep looking for time. The Lord is coming back and Iím still worried about the insignificant things in my life when I should be focused on Honey and the needs of others and I just canít find time. Today I get the call from him that begs me to do somethingÖheís asks for pain med (Tylenol) for over 3 hours, but his doppler feeding tube has come out again. I call the nurse who's taking care of him and she says that she's waiting for the doctor to call back. Three hours?GIVE HIM A SHOT!!! But she doesn't have an order for one. So go get the unit manager and get some back up and get the man something for pain. He doesn't ask for much, and only when he really needs something. So ..TAKE CARE OF HIM!!!! I'm angry, frustrated and scared and sick of systems that do not function and I'm worried about this when I should be worried about praying and witnessing and reading the Word. So help me, in the midst of all this if that Tom L didn't preach on forgiveness last Sunday and hang me over the coals. Forgive???Is there a difference between forgiving and tolerating and ignoring ???Again I'm back to the point of saying "Lord?" and Beloveds ...THIS is why I have avoided posting for the last week. I'm not stable enough to make sense. So...over look the negative, hang on to the positive and know that God really does love us...and everything will be all right.
Sunday, October 12, 2014
Not a good day for Honey. Very ill. God is good.
Saturday, October 11, 2014
Spent the afternoon with Honey. The routine is slowly being established. A man came to look at my barn and see if it can be refurbished or not. I took the dog to the vet. A friend met me at Honey's and we cleared all of the sticks and branches out of the yard...she was smarter than me, wearing high boots to wade through the lake of water standing all over his yard in the lower spots and hidden in the grass. She gave me the sad news that a mutual friend had passed away and I had time to get home, clean up, and then attend the funeral. I left the service and headed for the Hospital. One of the conversations I passed tonight was between a tall father and a pretty little girl who was holding a bottle of pop in each hand. He was telling her that she might have to share her soft drink with her mother who might have an upset tummy. The little girl was informing him that Mommy had something to drink in her room and wouldn't need her Sprite. Daddy was still talking when the door closed behind me.
These solo trips to and from Louisville have really brought advice from John Lowry to the front of my mind. "Pay attention. Look at color, shapes, patterns and really pay attention." The leaves are starting to change, many fields have been harvested and there are rows of stubble or tall grass all along the side of the road, and many people have already decorated for Fall. What I seem to be paying attention to most is the expression on the faces I pass. At the hospital people are tired and anxious and huddle in groups or walk quickly down passageways to get to rooms or out of the building. Staff is usually disconnected, tired after shifts or hurrying to get in to their stations to clock in on time.
The smells are there too. There's a cafť that promises a daily special and delivery service all over town. The odor of heavy grease hits hallway down the passage and lingers out the exit door. Passing the inner emergency room entrance pungent cleaners and sterilizing agents fill the lungs and in just a few more yards that scent is replaced with the hint of cinnamon hiding behind the doors of the cafeteria on the opposite side of the elevator hall.
I pass Honey's oldest daughter in the hall. She plans to head for church and we compare notes on what we need to get for Honey's comfort. She'll look for something that he can play DVDs on so that he can watch the Gaither's while he's sitting up in the chair and I plan to bring him a fleece blanket to wrap up on dialysis days. The machine cools the blood as it washes it and puts it back in the body and it causes extreme chilling to the system. Honey had 5 folded thermo blankets on top of him and was still shivering and asking for more cover. I also want to get copies of church services. He needs to hear the encouragement of the Word. I was able to contact the nursing manager and tell her that I was impressed with the care I'd seen for the last 2 days. I want to speak words of encouragement as much as words of scolding. People need to hear when they're doing something right.
God sent us a messenger tonight. Her name was Diane and she was a fireball. She came into the room announcing "I'm working on staying saved today, yes I am!". She looked after Honey and talked the whole time. She talked about salvation, trusting God, learning to wait on His healing. She said that the woman we heard singing in the hall the other night was called 'Sissy' and she sings all the time. Sissy was healed from addiction to cocaine 20 years ago and has been singing ever since then. Diane put her hand on Honey's hand and looked him straight in the eye. She told him that God's healing was not just about touching his body, but it was also about healing in the family at large. She talked of extended blessings that come when a person is trapped in sickness that causes the whole family to come together. We talked of Daniel, and the Hebrew children and how God did not keep them from the trouble...He just went with them into the trouble. She testified and I praised the Lord.
Honey had a lot of trouble staying awake today. Diane told me that when she came in at 7am he was trying to climb out of bed and told her that he had to exercise. He'd been up in the cardio chair for over 2 hours...and I found out that the bed is so they can keep accurate weights on him for the dialysis. She said that it was clear that his spirit and determination was fighting to make his body recover.
Everyday is a new day and this has been a ride I wish I'd never had to get on. But there is a reason for each challenge and there is a Father Who knows exactly where we are in every situation. He knows my name and is in the room with Honey when I can't be there. I will trust Him. He has never failed me yet. Praise His Holy Name
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