I have not journaled here for a long time. So much has happened in the mean time. I've healed well from my surgeries of 2 years ago. Mom and Dad have been having some issues.
First, Mom's breast cancer seems to be stable. She was so weak that she spent a week in the hospital last summer. She went on Home Health care when she was discharged as much as she hated it. Then in the fall she developed Volva cancer. After a biopsy she was sent to Wichita to a gynecologic-oncologist. It was determined that she needed radiation therapy in order to have any chance of killing this. We spent 6 weeks in Wichita with Karen & Ron during this treatment time. She now does not show any cancer or pre-cancer cells. Success! Mom really doesn't remember much of this because of the dementia and that is ok. Dad came with us for the whole time and that was good for both of them. Being at Karen's home and having the treatments in Wichita was so much easier on everyone (except maybe Karen & Ron) rather than driving 110 miles one way 5 days a week. Thank you, Karen & Ron.
When we returned to the farm, Dad has been so fatigued and did not go out much while it was cold. When it started getting warmer he seemed even more fatigued and developed a head cold that turned into sinus infection and ear infection. He had no appetite all winter and had lost some weight. With the sinus infection he had so much flehm that it was causing choking and he's cough so hard that he had trouble catching his breath again. He spit and spit out crud. After 3 weeks he was finally convinced to allow me to take him to the doctor. He had blood work, chest x-ray, COVID-19, & Strep tests done. He was put on antibiotics and steroids. Two weeks later he was no better and we went back to the doctor. Another steroid shot and a stronger antibiotic. 5 days later Dad called me and asked me to take him to the hospital. If he wants to go see a doctor or feels he needs the ER I do not argue one bit. Clothes on and out the door I go before he changes his mind again. Dad had not been able to swallow much in food or drink for the past month from being so sick.
In the ER these same tests were run again and this time he did have pneumonia. The ER doctor wanted to admit him but the hospitalist refused because he did not need oxygen. ER doc did not agree with hospitalist and pushed back to get a CT to make sure there was not more going on than the x-ray showed. Hospitalist still refused to admit Dad. The ER doc asked if I wanted to speak in person with the hospitalist and I said, "Heck, yea, I do". He called him to the hospital from the clinic and I explained again about the trouble swallowing and he did finally agree to admit him for some fluids and nourishment. Thank goodness Dad's primary care PA does his own rounds for his patients and we did not have to have the hospitalist! It was determined through speech therapy and swallowing studies that Dad's throat muscles are too weak that they do not squeeze the food or drink down and when the area fills up above those muscles then he chokes and all comes back out with flehm and saliva. Any fluids drop straight into his lungs and any residual from chewing also goes into the lungs. The pneumonia was from aspiration rather than actual pneumonia infection fluid on the lungs. IV antibiotics helped to clear up the infections but he still could not swallow. In fact it kept getting worse. At this point Dad refused a feeding tube. He just wanted to go home. After 5 days in the hospital without fluid or food, the plan was to go home. Dad told his doctor that he just wanted to die, "Just shoot me", he said. Brian decided to keep him over the weekend. There was no improvement but they could not keep him in the hospital since there was a diagnosis and a treatment plan which was to work at getting Ensure or Boost liquid down.
It was decided between Mom & Dad and the doctor with the social worker that maybe going to the rehab center for a while to get stronger and to have daily PT, OT and Speech therapy. Wed, April 20 Dad was transferred to Colby Health and Rehab because he wanted a private room and he would have to share at Prairie Senior Living Center. With our large family, a private room is much better choice.
Admission on Wednesday. Family meeting with all department heads on Thursday. Friday he was to be assessed for therapy that would start on Monday. Things did not quite work out that way. After refusing to consider a feeding tube unless last resort. Dad finally figured out that this is not going away nor is it getting better on its own. If he wanted to live longer, it was not last resort time and Thursday night he chose to have the feeding tube. Derrick, Karen & Mom went to the rehab center early Friday morning to get the ball rolling to get that done. I got a call with appointments for surgery consultation with Dr. Kopriva today, April 26 and the insertion of the feeding tube for May 2. So Dad did not get the therapy workup and no therapy has been started this week.
Going to the rehab center was to be 2-4 weeks to get stronger then go home. The center is to transport him to all appointments with the doctor and hospital. Dad is to get PT, OT and Speech Therapy 5 days a week. The staff came to give Dad a bath Friday morning and he had a choking episode and they took him back to his room because he became light headed. They never came back later to get him showered. He asked Saturday and Sunday over and over and was finally told they could not do that.
Monday morning I met with the nursing director to ask questions and to get clarifications on what we were told and what is happening. She was upset that they never gave him a bath and refused when he asked for it. I also asked about the rehab schedule and she said she would check but she never got back to me on that. Dad asks for ice and never gets it. He is on IV fluids again but we had to throw a fit in order to get them to contact the doctor for it. He will get Pepcid liquid every morning and Liquid Tylenol about the same but he chocks on it and it doesn't go down. He does have a pain patch and is to get an epidural in his back on Thursday although Dad is fighting against that.
Today for Dad's appointment at the hospital, the center told Derrick that they did not have anyone available to take him to that appointment. Thank goodness Derrick stayed because he wheeled Dad over to the hospital himself. Talk about making someone pissed off. Derrick & I are both madder than heck about it. At this time I do not see that the rehab center is doing anything for Dad other than treating him like a long term resident placed there to wait out death alone. The staff doesn't know what to do with a large family that comes to visit all the time. We are the Juenemann Family! Get used to it!
I am so angry. Not at Dad or his doctor. I am angry that Dad has to go through this although I know this is part of the life process. I am angry that there is nothing I can do to help him. That is part of why I'm at the farm is to take care of Dad & Mom and to keep them in their own home rather than a nursing home.
I know God has a plan for each of us individually. I trust God's plan. I do not doubt that at all. I can accept that. My prayer is that whatever the plan is, we do not know what God knows, Dad can have peace and not have to suffer for a long time. To be completely honest, I feel that Dad will improve if he is meant to be on earth longer or he won't improve even with the nutrition and fluids through the feeding tube if it is time for him to return to his heavenly home. I just am selfish enough that I do not want him to suffer just to linger here a little longer. I know that God's plan does not just include Dad but how it affects all of us as well. We all have something to learn through this.
I'm grateful Karen was at the farm for the weekend and stayed when Dad was admitted to the hospital. Having her here has helped to tag team with Mom and time at the hospital. Karen has allowed me to get a break from the hospital and rehab center to have a little time to myself and to rejuvenate. Mom doesn't know where Dad is, how long he has not been home, or that we just left from spending the day with him. Most of the time when we get to the rehab center she knows that Dad is sick. One morning she thought we were going to see her Daddy not mine, her husband. She was so shocked that it was "My husband, Jerry" that we were in town to visit. My heart hurts so much for her.
It is rough. It is hard. It is a blessing at the same time. I have seen more affection between my parents in the past 2 weeks than I have in all my 65 years. My siblings are pulling together to help Mom & Dad. I have had 15 years on the farm with Mom & Dad most every day. I have been able to help them as they have needed more help. They have been my support system as well. They gave me a place to heal & live so I could live within my means when I had to quit work and go on disability. They have been my best friends. I have loved helping Mom around the house and with sewing & quilting projects. I have loved spending time with Dad outside checking or chasing cattle, fixing fences, working on equipment and even learning to drive one of the tractors. Of course I always run the controls a girl way, backwards from how a man does it, and nearly dump him out of the scoop every time.
Love you, Dad. Praying for improvement but God's will be done.
All my love always,
Rose
(Original post April 26, 2022)
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| Trying to eat cheese 4/6/2022 |
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| Ready to feed cattle with Layne 3/23/2022 |
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| Weak in rehab 4/25/2022 |
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| Getting some fresh are at the hospital 4/17/2022 |
