hospital

I WANNA GO — HOME?

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 house-guest 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.

Originally posted 2010-06-28 07:22:40.

SPEAK UP — IT JUST MIGHT SAVE YOUR LIFE

In early February I wrote a blog titled “This’ll either cure ya or kill ya”, http://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 this afternoon.  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 moved.  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.

Originally posted 2010-06-21 06:42:00.

HAPPY BIRTHDAY TO US

My sisters and I have unusual birthdates.  Not because 2, 6 and 9 are unusual, it’s that all three numbers are in March, and had I not been born in a leap year, the day of my birth would have fallen on March 3 instead of March 2.  That one day would have made the three of us three years, three days apart.  Even without me messing up the numbers by arriving a day early, the closeness of the dates is still rather unusual.

Consequently, my middle sister, Janet, and I often shared a party:  a few of her friends and a few of mine.  This was acceptable until we outgrew parties with little friends, “Pin The Tail On The Donkey,” and the need for a party.  But do we ever outgrow that need for a day of celebration and recognition for our arrival on planet Earth?  Thinking about it in that manner, birth is really a very big deal, as is its yearly anniversary.

The first year of our marriage, Ken prepared a special dinner for my birthday.  As a former Navy cook, he liked to cook and had a lot of experience, serving me an entree of stuffed pork chops with complemenary side dishes.  What the side dishes were I don’t recall, but I will always remember the delicious pork chops.

Our old movie  camera and 35mm snapshots recorded the Kodak moments of our children’s parties with the neighborhood kids as guests.  All of them dressed in their Sunday finery, arriving through the side gate to celebrate each gala in the back yard where spilled drinks, ice cream and cake could be washed away with the garden hose.

Then as the old film commercial crooned, “Turn around, turn around…..” ending in something like “…with babes of their own.”  In agreement, it seemed that as quickly as our babies came into our lives, all of them grew up into adults and now have families — “babes of their own,” but the birthday parties continue, the family having extended into four generations.

Our daughter, Julie, entertainer extraordinaire, with Ken’s input and help, took it upon herself to host my birthday celebrations with lovely dinner parties at her home.  When that didn’t happen we went out for dinner; birthdays being something to place in a fond memory bank.

This year, my birthday was two weeks after the accident and was spent in the hospital.  Family came for a visit as did friends.  One of my younger friends, Christine — a beautiful purple orchid in hand to mark the occasion — assured me that my neck brace would take away any signs of a double chin, or chins.  Of course, she lied, but I loved her for it.

“We’ll have a bar-b-cue at the ranch when you’re better,” promised Keith.  “My birthday is in May,” added our friend Don.  “We can celebrate together when the weather is good.”  “That will be something for me to look forward to,” I replied.  I needed that — a  happy time to think about beyond the neck brace, broken ribs and bruises.  So for the first time in my life, and with warm weather prevailing I celebrated my winter March 2, birthday in late spring.

In all the years of our marriage, there has always been a party for Ken.  June 10, is his birthday, or as some purest say, “the anniversary of his birthday.”  Some parties were smaller than others, but the important people were always there:  our family.  Other years, especially when time ticked off another decade, we had “grand” parties inviting lots of friends, as well as family.  Some were surprise parties, others were not.  In any event, he was definitely “the birthday boy,” finding joy in the celebration.

“Are you going to have a party for Ken’s birthday,” asked Ben, Ken’s caregiver of four months.  For a moment I was left without an answer.  Ken no longer knew “up from down,” nor did June 10, have any meaning for him.  Furthermore, he no longer had “wants” and all of his needs were met.  “A little party,” I answered, seeing that Ben didn’t understand my lack of enthusiasm.

Ben brought a party bag with cookies inside when he came to work on June 10, and I gave Ken a card and more cookies.  Our children called or dropped by.  If  it was convenient and the phone was close he would speak to them.  If he had to get up to answer, he didn’t bother, saying, “No.  Now now.”  They understood.

At dinner we sang “Happy Birthday,” presented him with a flaming candle stuck in a scoop of ice cream and cookies, and presents.  “Blow out the candle,” we coaxed.  “You blow it out,” Ken grumbled, not interested in the silliness of the exercise.  If birthday wishes were meaningful to him, it was hard to tell.  He opened the cards, read them aloud and tossed them aside. Quickly forgotten, he ate his ice cream and cookies.  Birthdays had lost their charm and  meaning.  Like all of the other pleasurable things in life, Alzheimer’s had taken away that last bit of joy.

However, in the midst of being sad about memory lost, I remembered a few lines from one of my favorite poems:   “Intimations of Immortality” by Wordsworth: “Our birth is but a sleep and a forgetting, the soul that rises with us, our life star, hath had elsewhere it’s setting, and cometh from afar…………”  Believing we have always been “us” — individual spirit children of God — living before in a pre-mortal state of being makes us eternal.  What’s more is that I continue to believe the same “us” will  go on existing after this life.  I find comfort that somewhere in time and in another place, Ken will remember and celebrate his day of arrival in that future place.  I doubt it will be known as a “birthday,” but it will be a day to commemorate which, surrounded by loved ones, will bring him, once again, joy.

Originally posted 2010-06-14 00:55:21.

KUDOS FOR MY KIDS

I can’t imagine what it must have been like to receive the kind of phone call my children received the night our car was hit by a drunk driver; when life, as we all knew it, suddenly came to a screeching halt leaving dinners uneaten, appointments canceled, meetings unattended, young children bewildered as our adult children and their spouses gathered in disbelief.  In retrospect I realize how naive humanity really is, all of us thinking we are so in control — masters of our very existence — when in reality we are not.  Life pulls the rug from under our feet every so often, perhaps to remind us of how frail and vulnerable we really are, and how dependent we are on one another.

Now what?  I suppose that was the paramount question.  Suddenly, the responsibility of mom and dad fell upon the shoulders of the next generation with absolutely no warning.  Even with Ken’s Alzheimer’s he and I are the generational buffer zone between all of them and the great beyond.  You know, the older generation that keeps those of middle age somewhat “young” because their parents are still alive; grandparents to their children and like a rock we have always been there.

Then, unexpectedly things change and major decisions must be made by five adult children.  Five different opinions need to be considered, and five solutions weighed for the dozens of problems which lay ahead.  Could they work together or would they pull in opposite directions?  Could they get past “personalities” and agree even if it was agreeing to disagree, and be able to get on with the tasks at hand which included health-care decisions based on existing Advance Directives.  Who could and would handle the varying components and who would be accountable for mom and dad’s finances?  What about dad?  What would they do with their dependent father once he was released from the hospital:  caregivers at home or a care facility — or what?

I now refer to Keith as my CEO.  It seems that someone in the family steps forward and takes over.  Not that there isn’t that same capability of leadership in all of our children, it’s just that this time it was Keith who took charge — delegating and assigning what needed to be done.  Whether the others grumbled or disagreed I don’t know, nor do I want to know.  What I do know is that my children — with families of their own, business and work schedules to attend — set aside their own priorities to care for our needs.  Together, perhaps prodded and encouraged by Keith, they worked like a finely-tuned machine; each doing what was assigned in the best way they knew.

As I recovered, I was able to spend a good amount of time with each one of them: three men and two women, and their families.  It was quality time, relaxed time, alone time, intimate time, and stolen time from their busy lives, but I treasured those hours with them, rediscovering who they were, finding them to be the kind of people Ken and I had hoped they would become.  I also realized how very different they are, which I found rather amazing.  Coming from the same parents they are not carbon copies of mom and dad.  They have, however, grown into their own diverse persons while embracing the same values and qualities they had been taught: they are vigilant and hard working; and they are good, kind, loving and giving people.  I understand they don’t always agree with one another, nor do they always agree with us, and that’s all right.  The important thing is they are there for each other, and they are there for us.  Not only do I love them, but I like them; could a parent ask for anything more?

Originally posted 2010-05-13 19:55:14.

SOME KIND OF ACCIDENT?

“Ow!  That hurts my back,” I groaned, not knowing where I was, who was moving me or why.  Aware of bright lights, sirens and men’s voices, I heard someone say, while enclosing my neck in a brace, “Broken neck, possible broken leg.”  I thought, “Are they talking about me?  I don’t want a broken leg, much less a broken neck.”  I had no way of knowing what had happened, but suddenly the thought ran through my mind that I had been in some kind of accident.

Across the inside of my head stretched a blackboard which appeared to be blank.  Slowly, printed in white, as if someone were writing with chalk, there flashed a phone number.  Call my son,” I mumbled, repeating the numbers before me.  Then, as surely as I knew Keith’s phone number, I repeated both Ken’s and my HMO medical numbers.   “I have a pacemaker and my husband has severe Alzheimer’s.  Don’t let him wander away,” I added, somehow knowing he would need all of the important information.  “Can you tell me your name and birth date?” another voice asked.  I answered his question and gave him Ken’s name and birth date as well, then faded into an unconscious place.

Obviously, the driver of the maverick car did not correct as I had assumed.  Instead, his vehicle must have remained in the diagonal line aimed in my direction.  I was like a sitting duck in a shooting gallery, the trajectory of his set course was fixed on me.  He couldn’t miss.  In retrospect, who could have known he had spent the afternoon drinking and was drunk out of his mind?   Authorities could only calculate the speed of his car as it broadsided my SUV just behind the driver’s seat.  Out of control, the maverick bounced off before slamming once again into the rear of my vehicle, spinning it wildly before coming to a stop — facing in a southerly direction.

Inside, I had been unaware of  impact, the first blow no doubt knowking me out cold.  I can only speculate on what followed.  The seat belt, which I had buckled, failed.  I believe it retracted on impact, and in so doing snapped the metal-locking end into my lip, cutting it just left of my nose at the same time knocking out one bottom tooth.  The air bag deployed, but without the seat belt holding me in place it was ineffective.  Lacking any restraint, I became air born and was somehow hurled through the driver’s side window onto the street where I lay until paramedics arrived.  (By comparison, Ken’s injuries were minor, but still required several days of observation in the hospital.  Restrained, confused, combative and unhappy, our concerned children insisted he be released for better care at home).

While my family waited and worried outside the trauma unit, I was finally stablized by a group of dedicated and extraordinarily skilled doctors following an hour and a half  of intense effort.  Medically, I was a mess.  The team of professionals battled shut-down kidneys, stabilization worries; there were cuts, contusions, blood loss, massive bruising, broken ribs, a broken neck, head fracture with concussion and I had inhaled glass shards while exiting through the closed window  They worried I could suffer a stroke or be paralyzed as the neck fracture was a top vertebrae protecting vital areas and nerves which commanded life itself.

During a moment of consciousness I requested a blessing of healing from the clergy of my church.  Their anointing words of comfort, hope and promise fell upon me like a warm blanket on a cold night.  Finding peace among the turmoil I also found rest, allowingy myself to let go and let God further work His  miracles.  When awareness allowed me to ponder, I reviewed my broken and bruised body and while I will never dismiss the seriousness of my many and varied injuries, I am still amazed that I only suffered a broken neck, head fracture and broken ribs.  In actuality, I should be dead.  I can only believe there must be some part of my life’s mission which has not been completed.  Why else would Heavenly guided unseen hands cushion my descent to the pavement?

Originally posted 2010-05-09 00:35:36.

NOT ON MY WATCH

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.

Originally posted 2011-01-30 21:30:16.

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