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Archive for the ‘hospital’ Category

My adult children were relieved when they were told that Ken and I would, ultimately, with time, rest and therapy; recover physically following our automobile accident last February.  There were no guarantees, but the prognosis was good. While I remained in intensive care for a week, and then was transferred to our HMO facility, Ken was released from the hospital in five days. Weakened and changed by the accident and his stay, the volunteer wheeled him from the hospital to the waiting car while Debbie took photos of him each step of the way as he struggled from hospital care, to car, to walker and up our driveway.

“I don’t want those pictures all over Face Book,” instructed our son, Keith, who had stepped into the role of CEO for the family during my absence.  Needing to do what needed to be done, he outlined a course of duties, assignments and restrictions for each of our five grown children.  “Dad’s been through enough without having him look less than who he is, less of the man than who he was.  There is no need for the entire world to see him on the Internet as he looks right now.  My father deserves better.”

I doubt if it was the intent of Debbie to display Ken for everyone to see.  She knew her already disease-stricken father had received a double whammy with the accident piling more traumas on top of his already debilitating problems.  The photos were for family.

Not only is Keith a fixer of whatever is broken he is also a fiercely private person: kind, compassionate, sympathetic, and more – empathetic and beyond – as he often steps quietly out of his comfort zone to “lift up” his fellow man.  At the same time, don’t cross him, because he can draw a line in the sand which is not to be crossed or treaded upon.

He also has a motto, “Never put anything in writing unless you don’t care who sees it or reads it.” That goes for photos as well. I agree with him totally.  Many times those feathers – words, photos — which have been cast carelessly into the wind, may at times, manage to flutter back and “bite you in the butt.”

I read a lot about Alzheimer’s from many sources, always looking for how others are managing, new ways and encouragement on how to be a better caregiver – a better person — even though life becomes more and more difficult as the disease progresses.  I also read various blogs about many of the diseases under the Dementia Umbrella.  They all touch my heart, some deeper than others bringing tears to my eyes, especially those who are victims of Early-Onset Alzheimer’s:  Young people, some still in their 30s, who have a lifetime before them with growing families, goals to accomplish and careers to fulfill; their lives — never to reach full realization; their minds — never to reach full potential, and through it all I read of a devoted spouse, adult child or relative, any of whom is often the author of the work.

When I was younger, one of my neighbors called and asked if I could help with her husband.  Stan was in the last stages of cancer and she was caring for him at home.  Other than medical people helping with showers, Val was his sole caregiver except when she might need aid from a friend or neighbor.  “I just need some help turning him,” she explained.  I was glad to be of service.  I could see she was quite capable of caring for him by herself as his disease had ravaged his emaciated body to where nothing was left except skin and bones.  He greeted me, even managed to mumble, “Thank you,” as Val and I carefully shifted him from one side to the other.  Her work with him was such an act of love.   Watching them together, I marveled as she chattered in answer to his bits of labored conversation.  She continued fussing over him, with Stan thanking her profusely for doing for him those things which he could no longer do for himself.

Looking around I noticed the house was immaculate, as always.  I used to tell Ken that Val was so clean she even swept the dust from the dirt in the backyard.  Keeping it all up, she must have been exhausted, yet, never did I hear her complain or tell about some of the dreadfully unpleasant duties her care giving demanded.

Stan was her third husband – the third one she would bury – nursing all of them through their various ills until death led them away and Val was able to pick up the pieces and move on.  Even when she spoke of the first two men in her life and their illnesses, it was without complaint – and no details.  She never mentioned what it was that took each of them only that she was the caregiver.  While Ken and I were filled with admiration, we were much too young to be totally appreciative of her efforts, neither of us having experienced the overwhelming and extensive effort she had performed.  Val chose that those years of caring were to be her memories – unshared – unspoken.

No matter what the illness, there are aspects of caring for the infirmed which are, to say the least, extremely difficult – private – and, perhaps better left unsaid – unwritten.   That’s been my decision whenever I write anything about Ken and our shared journey through this disease; I always ask myself this question, “If I were the one who was ill, would I want him to share each and every facet of my failing health on his blog, with society and all of the neighbors?” My answer would be, “No.  Please — be discrete.”  Discretion is the word I keep in mind.

Someday, after it’s all over, and Ken has been laid to rest – the Lord willing as often the caregiver goes first — I want him remembered for who he was, not for what the monster AD has done to him. Long ago I decided that everything – every labor of this journey – every detail of caregiving — will not be posted on my watch.  As Keith has said, “My father deserves better.”  So does my husband.

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After three weeks in the hospital I was tansferred to a convalescent/rehab center and still felt — comfortable — if that’s the right word — being a patient.  “Just leave me alone in my bed so I can get better,” was my plea, but the goal at rehab is to get you up and going and out — and home.  However, when I looked down my road to recovery I found that I didn’t want to go home.  As injured as I was, I didn’t want to pick up and continue with where I had been in February.

Ken was home.  After the accident he stayed several days in the hospital as my daughter, Debbie, wrote about in her guest blog titled   “One Simple Phone Call. ”   From the beginning I felt at ease knowing he was being cared for by her and the caregivers she had managed to assemble: all good people.  With everything in place, Debbie returned to her home in Utah several weeks after the accident to be with her family.  For me, the thought of going home was beyond comprehension.  I wasn’t ready to assume the responsibility of home and Ken and all it entailed.  I was still too caught up with me.

A few years back my neighbor mentioned she felt my family wasn’t doing enough to help me with Ken.  “They should take time and be with him for a while so you could catch up on some rest, take a trip — something — just get away.”  I smiled at my friend and jokingly asked, “If you lived in Hell and someone told you they would be willing to take your place for a week so you could get away, and you took them up on it and managed to have a wonderful rest and vacation, would you come back?”  All joking aside, while I dearly love my husband and the life we have had together, living with Alzheimer’s is Hell.

Laying there in rehab, that’s how I was feeling.  I had been given time off from Hell and I didn’t want to go back.  “Time off.”  That was almost laughable.  I hardly considered my hospital experience a vacation of choice.  I felt terrible not wanting to go home, guilty in fact, and sad, but after six years of being Ken’s only caregiver watching helplessly while my husband slipped away into the awfulness of Alzheimer’s, the cycle — the routine — the dedication —  all were gone; shattered by the thoughtless decision of someone who believed he could drink and drive.  My neck remained in a brace, my head and face were still healing from wounds, cuts and contusions, and my legs felt like cooked spaghetti when I managed to walk.  I just wanted to stay in bed.

Rehab was a zoo.  The halls were filled with visitors coming and going, and patients in all degrees of recovery.  Some strolled the halls hanging onto their walkers, some were wheeled about in wheel chairs either by friends, family or staff.  Doctors and nurses gathered around the nurses’ stations; medical aids, nurses’ aids and housekeepers busied themselves with whatever needed to be done while therapists of all kinds guided their charges to and from the exercise rooms.  The only time the halls were empty was after midnight.

No matter how badly I wanted to rest, it would only happen in rehab after I had done my part in getting stronger.  This was a workplace and I was part of their work.  So was Sabina.  They taught her how to change my neck brace making her an important part of recovery after I left.   I soon learned that it was necessary to turn my whole body, never my neck  if I needed to look around, how to shower safely,  to use my walker for support, to climb stairs even though my wobbly legs would rather do nothing, and to get into and out of a car without hurting my neck. 

I went to therapy every afternoon at 2:30, and then returned to my room where I cried — not from pain — it was more from the frustration of  everything combined.  Hadn’t I had enough on my life’s plate taking care of Ken, our finances, our business, maintaining the house and lastly — myself — without this added burden of dealing with a long list of serious injuries.  And so I cried.  My afternoon sessions with weeping seemed to be a release of pent-up worries and struggles, prior unshed tears, so much time lost, and the long aftermath yet to come where I would be contemplating, “What’s next?”  But even more, I was homesick.

I thought of the orange tree growing to the side of our house.  This time of year it should still have been filled with the succulent fruit and I imagined myself picking one, and then sitting down on the steps.  In my daydream it was warm — spring was just beginning.  Slowly, I dug my finger nails into the peel pulling it away from the fruit and tossing the discarded evidence under the juniper bushes telling myself  it was good compost for the soil.  I could almost feel the juice run down my chin as I relished my prize.   The  reverie vanished and I cried some more.  I wanted so badly to leave, but I knew I didn’t want to go home.

“You don’t have to go home,” said Julie, her husband Tim agreeing.  “Come and stay at our house until you feel strong.  Stay as long as you like, we’d love to have you.”

With my walker for support, Rehab discharged me after three weeks.  I walked to the car, got in without banging my head or straining  my neck.  Sabina drove me to Julie and Tim’s home, where they were waiting to welcome me.    Having been there countless times, it now felt rather odd.  No longer was I just Mom paying a visit, I was a houseguest with a room of my own.

That day was sunny, bright and blue — April — I have always loved April.  The countryside flourished green with spring and a few scattered daffodils bounced their yellow heads as if bowing to a passing breeze.  I sat on the front porch wrapped in a warm blanket on pleasant days just watching the season awaken.  Blossoms opened before my eyes as the days and weeks passed.  Wisteria vines flowered into full cascading clusters, followed by tiny leaves wiggling free from deep inside the gnarled branches.  Spring was healing winter’s visit — and me — making everything new again.   How grateful I was for this bonus time so badly needed to mend my body, my sadness and my broken spirit.

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In early February I wrote a blog titled “This’ll either cure ya or kill ya”, https://annromick.wordpress.com/2010/02/15/thisll-either-cure-ya-or-killya-or/ about the importance of doing research regarding your own and your family’s medications. My husband started displaying psychotic behavior following a long period of taking and combining certain o.t.c. remedies and prescription medications.   I ended up weaning him on my own, which did temper the bad behavior.  He now takes only one pill for high blood pressure.   However, it is so easy to trust, believing that medical people are always right, but that assumption is so wrong.  Not only is it wise to be alert with what cures you take at home, it is even more prudent to challenge medical people if you end up in the hospital.  And most important — if you are unable to speak up for yourself, ask a friend or a family member to monitor your medications and progress.  A good watch dog may save you extra days in the hospital and just might save your life.

A week after the automobile accident of February 15, I was transferred from ICU and the trauma unit of one hospital to the CCU of my own HMO hospital.  While my family continued to hover over me, I was improving, which was the good news.  The bad news seemed to be the attitude from some of my HMO’s medical people. 

The disadvantage of my HMO (I don’t know about others) is that your own doctor — your primary care physician — is not part of your hospital stay.  He/she sees you only in the office, and while the doctor and patient may become very well acquainted, the doctor has very little, if any, say in your health care while you are confined to a hospital bed — nor does he/she ever come to see how you’re doing.  I suppose I’ve been spoiled by my former medical plans where my doctor’s daily visits were so beneficial.

The HMO doctors assigned to me were, no doubt, skilled in their profession, but appeared to be lacking in sincere concern as to my physical and mental well being.  It seemed the main focus was how quickly they could eliminate my need for being there, and how long would I have to remain before they were allowed to discharge me and ship me off to a convalescent/rehab facility.   They often made me feel as if my expenses were taken directly from their salaries.

Several days after being admitted, one of the doctors said to my daughter-in-law, Sabina, “We are going to send her to rehab.  I find no medical reason for her to remain here.”  Surprised by the declaration, and checking through a chart which she personally kept on my condition, Sabina listed all of my medical problems which had not been resolved, insisting they be addressed before I left.  ‘Do you want me to commit fraud?” questioned the doctor, annoyed at being challenged, but still not motivated to look into my remaining health issues.

That same afternoon I developed a terrible ache which seemed concentrated in the left side of my back.  With each breath, I felt stabbing pains.  Sabina discussed the new condition with Dr. Stubborn, insisting that the pain be checked, forcing the doctor into action.  I was sent for further examinations resulting in treatment.   Apparently, my left lung had been collecting fluid and needed to be drained with a tube inserted through the chest wall and attached to a drainage bag, plus another round of antibiodics.   Without Sabina speaking up for me, I would have been transferred to rehab with at least one serious medical condition.  Speaking up for myself was difficult because I wasn’t sure of my own medical needs making it easy for a medical professional to convince me I was perfectly all right and ready for the move.  I remained in the hospital for another week.

It was the same with medication.  One doctor would remove a drug, and if it wasn’t so noted on my charts, another medical person would want to continue the dosage.  “I know you aren’t familiar with the names of your medicines, so count the pills,” suggested Sabina.  “If there are more than seven, ask the nurse what each pill is supposed to do.”  That I could do, and I began my own questioning, even spitting out pills which had been discontinued.  I used the same system while at rehab, and many a time, the prescribed meds offered were no longer needed.

Fortunately, during those occasions when I was unable to speak for myself, I had an excellent watch dog.  Without Sabina’s voice challenging doctor’s decisions and being so vigilant in overseeing my medications, I could have slipped into a serious decline, and, at other times, would have been way over medicated.  None of the above is good for any patient.

Personally, I find it difficult to move on from the days when your doctor knew you and your family’s medical conditions as well as his own, and was sympathetic to your needs.  However, reality tells us that with medical people being pulled in so many directions in today’s world, and dictated to by the profit portion of  HMO’s insurance policy makers, those memorable days of yesteryear are gone forever.  It’s now up to us and our loved ones to be responsible for taking charge of our medical needs.  If something doesn’t sound right, speak up or have someone do it for you — it just might save your life.

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