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Capedrifter Perspective, points of view, and experiences of a caregiver.


Jun 24 2011

I try to remind myself every couple of days: Don’t forget to keep the houseplants alive.  As I’ve passed through these four years of ever worseningliver illness with my wife, I’ve stumbled across issues that I’ve come to recognize as warning signs of DANGER AHEAD.  They are identified, avoided, or confronted in a different way for each person.  The variables are so many that each patient and each caregiver has a unique situation, I believe.  Still, I thought it useful to list the most egregious and troublesome issues that have bedeviled me repeatedly.  I think instant recognition of a danger signal is key.  An early smack-down of hassle or disorder protects Momma Cape and myself.  I’ve concluded that more then one bad day in a row, for me the caregiver, could have terrible consequences on the general welfare.  The experiences of a single bad day are my warning to stop and get back in control.  An infrequent single bad day is a mentally and physically draining experience.  My difficulty is having the confidence that I will have the discipline and foresight to acknowledge a danger and eliminate its threat.  One can only try.  Following are thoughts on a few of the subjects that worry me.


Fate.  I have no influence over the role fate plays in making problems more troublesome. It is life as it is, not as I want it to be.  For example, over Memorial Day weekend the pain from hemorrhoids caused Momma Cape to use large amounts of Tucks pads, a product she was unfamiliar with until now.  Ongoing but not dangerous constipation was causing increasing volume with bowel movements.  The toilet jammed.  My snake did not clear the jam but sure increased the mess.  The flush hole is set to the back wall so the plunger would not work.  A plumber with an augur would want title to the house to do the work on a holiday weekend.  I tried lye.  Nothing.  I went on “the junction” and quick replies saved the day.  Large amounts of Comet and Lysol cleaner with hot water cleared the jam.  Note:  I can’t describe the value of my friends on the CSG!  My point is I did not have a bedpan or waste receptacles on hand.  I learned to try harder to think ahead about the suddenness of fated events leaving me unprepared and super-charged with stress.  HE causes fated events that make my head spin.  I try to be patient and remind myself that the disease is harming her mind as well as her body.  The stress HE events cause are the most difficult to deal with and require lost of deep breaths.


Fatigue.  Due to her own high fatigue level, added weight from ascites fluid and frequent pain I have to remind myself when I feel tired that my situation is nothing compared to hers.  Whenever she needs to get up during the middle of the night so do I to assist her.  My being tired, day or night, must never become an influence on my behavior.  Sometimes I fail.  I just try to acknowledge failure and commit to try harder.  The Japanese have a word for this good attitude, “ganbatte”.  It’s a state of mind meaning determination to always do your best.  I tell myself:  “If I got sick, it could be a disaster.”  Bad sleep, of course, is a key component in caregiver fatigue.  I find ways to grab a bit of relaxation to compensate when I feel overtired.  I’ll watch a Red Sox or Bruins game or practice Tai Ji Quan to give my body a chance to unwind when the sleep tank is empty or low.  Inadequate sleep is my worst problem.


Attitude:  It’s quite simple for me to understand that any form of negative behavior is ruinous.   It’s just that obvious.  Internecinal actions or disagreeable talk from me will make more complex my performance as a caregiver.  The job is difficult enough as it is and I don’t need to add to my own troubles.  As for ego, I’ve tried to trash it just like I would a spam email.  If I squash any sense of ego it can’t get bruised.  What had always been normal for us was trampled and squished so much that I no longer identify anything about our old life.  Life now is about one subject only: liver disease.  I feel my acceptance of the end or our daily routine was of singular importance.  New beginnings in the best of times can be difficult.  The demands and stress of caregiving necessitated that I adjust my attitude to accept the end of life as I’d always known it and begin anew.


Third Party Help:  I was totally unaware of my shortcomings.  I learned so much from the arrival of our friend from Japan.  Although Momma Cape had often expressed her satisfaction with my efforts, it took a third person to show me how much I was failing at important issues, many of which I lacked the skills to provide.  After two weeks with our friend in the house it was evident I was way short on the nutritious food front and not providing a carefree or happy environment as a matter of daily routine.  We had become stuck in the drudgery of the disease.  I had become incapable of handling these two critical issues.  I could not create laughter but her friend could.  Tasks carelessly bypassed as unimportant, such as tossing out the inedible and bad food accumulating in the refrigerator, were ignored.  I can see a trusted friend or family member, one whose company is a joy for the patient, is necessary from time to time to provide care and assistance; and, whose activities will be instructive to the caregiver.  Caregiving requires a team effort.  There are lots of ways to knit a team together.


Stress:  A caregiver has a life too.  I came to define any outside pressure on me as a danger.  I consider it a problem to be immediately solved.  I don’t need the grief.  Thankfully, any such event is rare but my antenna is always up.  For example, I bought a soft toilet seat to place on top of the hard plastic seat.  But, Momma Cape is tiny and does not want to be higher off the floor.  Although unopened, the medical supply store will not accept a return saying they can’t on bathroom items.  I could get tense and dispute this, win in the end I’m sure, but I don’t need or want the pressure of a dispute.  I own a $24 seat and perhaps one day I will need it myself – if I can remember I have it.


Efficiency:  Whatever I have to do or wherever I have to go I try to carefully schedule so as to not conflict with Momma Cape’s needs.  So, a by-annual check-up at the VA clinic or trip to Trader Joe’s for supplies, you name it, I plan it, post it, talk about it, and am ready to cancel in an instant should Momma Cape need me.


Study:  I don’t want to be blindsided by the events of ongoing illness.  If I am not informed I will become confused and inefficient.  I try not to let questions in my mind linger.  Accordingly, I use me friends on CSG and the Internet in general to keep ahead of what’s around the next curve on this rough road.   How do I prepare for a multitude of unknowns on a curve-laden path?  I must study!


Harmony:  From the first day, I knew argument would be toxic.  I try to ever so gently regularly kiss or hug and never fight.  When something awful happens like incontinence I make light of the matter and blow it off as unimportant.  We have a soft brown leather couch that we love.  The enema and clean-out process damaged her butt badly.  The doc prescribed Anucort-HC, 25 mg, a steroidal suppository treatment.  They melt fast.  One leaked all over the couch leaving a yucky stain, a big one.  We just laughed and I said: “Who cares about an old couch when the issue is a fine butt to protect.”  I Googled the problem and found that maybe saddle soap followed by an application of mink oil will clean up the stain.  Ok, it gives me something new to shop for and try.  Next I grabbed the Anucort box and there it was in bold, 4 point type: “Note, staining of fabric may occur….”!  Stupid is as stupid does.  Lesson learned, read the small print on every new product before using, no exceptions.  Last night she stepped on a HC suppository after dropping it.  She could not find it because it was on the bottom of her slipper and spreading wherever she walked.  The event defined my first task of the day.  Teamwork is harmony and crucial.   I consider it to be at the same intensity of the Seals or Special Forces and to be practiced in the manner of a hockey or basketball team.  Patient and caregiver always working as a team.


Memory:  Being over 70 can be a problem.  Knowing procrastination is a disease, I try to do things without delay; and, I keep a written list, putting notes on a wall calendar when a schedule is involved.  I can see if one is under 60 and working, a whole different set of habits would be necessary.  With luck the in between decade offers options.  We go for blood labs today to prepare for the drainpipe tomorrow.  I forgot if fasting is a day, 12 or 4 hours?  Thankfully, Momma Cape remembered.  This will be her 8th or 9th drain.  I can’t remember.


Reality:  I try to be a good listener.  The technicians at paracentesis, the doctors and their assistants, and other people who have had the experience of assisting someone with a terminal illness often know things I don’t know.  I acknowledge I can inhabit a cocoon or be in a self-induced fog unaware of what to consider next.  So, I always want to pay attention to others as a way of getting a reality check.


Living:  I’ve learned life and living life are quite different.  That happy environment that I mentioned is a tough nut to crack.  I can get caught up with too much worry.  I’ve learned from being in the trenches that all my issues have a strong emotional component.  I often feel too busy.  I tend to block stuff out when fatigue wins.  Before I go to sleep I ask myself if we had enough moments where we were living life today.  Often the answer is hard to swallow.  I must never cease the effort to keep my emotions in check.


Pain:  Momma Cape has pain from many causes.  I can’t feel it.  Her describing it does not help me understand it significantly better.  I fall back on what I have learned about liver disease to decide how best to deal with pain.  Continuing to try hard to learn and educate myself is my best insurance within this difficult realm.  Knowing about medications is a must where pain is concerned.  We learned the hard way that morphine to kill pain will cause terrible constipation and a cascading series of horrible events.  Had I known, I could have put her on a light daily regime of laxatives to prevent the constipation from happening.  I had no clue.  But, during the next crisis at the ER I mentioned this to the doctor, who I’ve come to know on a first name basis, and his response was: “Maybe not.”


Plan:  I never thought to consider that the toilet might get jammed.  It stands as a metaphor and lesson of the importance of good planning.  There are items I need to have on hand just in case. I also have to plan for the emotional changes that will come at me like ocean waves.  I acknowledge that my normal life ended - no more break at Starbucks, no time to get an oil change for the car, no time to chat with old friends.  A new isolation identifies this new beginning.  I need to think carefully about how I will handle the many unexpected difficulties that lie ahead.


Balance:  I’ve found a balanced life is impossible.  But, we still keep reaching for the brass ring.  Our mantra is: eat, exercise, rest, and repeat.  Many would want to add pray.  Events are too sudden and unexpected to have any sense of stability in life.  As time passes the imbalance of life becomes exaggerated.  I’d always remind myself that when the illness exploded four years ago life as we knew it came to a sudden stop.  We had to make a new beginning leaving behind all that had been considered normal.


Tools:  Early on I recognized the importance of discipline and am pleased I put all available tools to good use.  I use written lists, the phone intercom feature, regular computer research, and copious record keeping via logs of meds and a list of daily weight.


Privacy:  Like other personal needs, I shove any desire for privacy under the rug.  I’ve learned to not seek it or want it.  Momma Cape calls and I go running, usually.


Skills:  In our relationship there were clearly defined boundaries.  I found I had to quit my time working around the cars, in the yard, and clumsily repairing this and that.  I had to learn all new skill sets focused on what would be her domain and her workday.  Puttering at my old tasks was a kind of private time, which I had to give up.  If I could re-live the last five years I’d have taken a crash course in learning the skills that made up Momma Cape’s day.  Now I find myself reaching back to what I was taught as a child to try to revive those demanding domestic jobs.


Performance:  No matter how hard I am trying or how long or intense the hours, I know there it is not possible to describe the caregiving effort in terms of success or failure.  All anyone can do is give it their best effort.  The issues are too complex for ratings.  The medical system is to convoluted to master.  The patient is too sick for anyone to minister care on a rating scale. In spite of all of the technology that dazzles us all, the medical system remains byzantine in many ways.  The labyrinth of professionals, complexity of billing systems, and the depressing way one emergency medical intervention can cause another worse situation, can simply be more then any caregiver can navigate as time passes and the disease of liver illness worsens.  What more can any caregiver do except to do their best?


Books:  A friend, mentioned in my prior Diary post on friendship, sent me a book today with this note:  “This book was a great source of information, as well as comfort, for me as Mary was on her journey.  I trust it will be helpful to you also.”  CAREGIVING – The Spiritual Journey of Love, Loss. And Renewal by Beth Witrogen McLeod, 1999, Published by John Wiley & Sons, Inc., ISBN 0-471-39217-0.

Passages by Gail Sheehy, Website:


Comments:  Please post your own stories or add your own DANGER signals or book references.  Thank you.

This post was written just before Momma Cape died on June 13, 2011.  She was a gentle tower of courage and an inspiration to me throughout our life together.  She had a kind heart and powerful spirit.  Directly or indirectly she taught me all I know.  Our beloved home now feels like a roadside motel.  Time is a constant healer.  I must submit to the enduring power of time.  I feel gratitude and good fortune to have all these sincere digital friendships.

Previous diary posts by Capedrifter:
Comments (3)Add Comment
written by GORGEOUSME, June 25, 2011
written by mikealpha1, June 25, 2011
I truly love you, Cape.

I, as a patient, am/was always truly grateful for everything that Perri, or even the kids, did for me. Whether it was accomplished in a manner I might have done did not matter, it was the fact that they cared enough to try. Doing your best as a caregiver always results in a top performance, no matter what. Bless you.
written by twiceshy2, June 30, 2011
Wow - I so enjoyed reading your diary - and am so sorry for your loss. You should be commended for your courage strength and dedication. I too am a caregiver - there are many similarities - but many differences as well to our stories. My husband is in his 40's and has been sick with cirrhosis for about 2 years - prior to that there were addiction issues and many spine surgeries (5 of them) so I must admit it has been quite exhausting at times. I do work full time plus some extra jobs to make ends meet - usually I am able to keep a pretty bright outlook on things... but sometimes it is all just too much. As of late I have been experiencing anxiety and other physical symptoms that I just do not have time for. The HE is the worst part of this all in my opinion- the illness and the diapers on occasion are all Ok- but the craziness is so hard to accept - when my husband says and does hurtful things is spite of what we are going through - sometimes it is just too much. I am also so very worried about what to do when I can not care for him by myself any more. We have been together for 22 years and I love him very much- it is true we give up our own lives.. sometimes I feel very alone with all of this. I have lots of friends- but they don't really understand at all.

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