Support for Spousal Caregivers

By Kelley Brunn

High school kids come bursting through the front door.  "Hi, Mom, we're home!". As they head back to Stacy's room, they wave and shout, "Hi Mr. Brunn!"  I sit in the family room chair with a smile on my face. Of the five enthusiastic kids only one of them, Stacy, is actually our child.  Yet, these kids act like they're entering a normal home.  Is that possible?  Is it possible that we have found a normal life in the most abnormal of circumstances?

 I never thought anyone would want to burst through our front door.  In fact, I thought, fewer and fewer people felt comfortable with my husband Bill's declining health.  I thought that those entering the door of our house felt more like they were climbing on a horror ride at an amusement park  Especially at the point we are now.  After all, as a person enters our front door, immediately to the right, is a view of Bill lying in a hospital bed, right in the middle of the family room.Bill has Multiple Sclerosis, most definitely the uninvited resident in our home.

 In the early years of our relationship and marriage Bill played tennis, golf and jogged five days a week.  He was the most fit and healthy person in both our families, so we thought.  Occasional tingling in his extremities, problems with balance and tripping just seemed like insignificant minor distractions.  Then they grew to be more serious falls, bladder dysfunction and extreme fatigue.  When symptoms escalated Bill went to the doctor and the battery of tests seemed extreme.  We thought going to the doctor two weeks later for the test results was just going to be a routine visit to confirm that Bill just needed to get more rest and be careful, especially since by then most of the symptoms had subsided.  When Bill walked out of the doctor's office, his hands full of papers and publications, his face was stone white.  As we were walking out he whispered, " have Multiple Sclerosis." My heart raced.  My mind swirled with emotions. "What? That can't be." My mom is wheelchair bound with MS; that journey started when I was 13. Our daughter, Stacy, is 2 months old, no way!  We got to the car, put Stacy in the car seat and started to drive home.  Bill just stopped the car and burst into tears, "This can't be happening.  That was the beginning of living with chronic illness in our family. 

The next few months and years were filled with a strong determination to beat the disease -- and the odds, and to continue on with life as "normal."  What living with illness teaches you, though, is that you have to redefine "normal."  You have to create your own normal, within the boundaries of the disease's limitations.

As the MS progressed and the little inconveniences became bigger obstacles, the voids and losses started.  The former jogger and tennis player struggled to walk long distances.  Mood swings and loss of bladder control became more frequent.  Then, we hit our first huge transition.  Bill collapsed in the driveway and after evaluation in the ER it was determined that Bill was having a major MS exacerbation.  Thirty days later he was discharged from neurological-rehab. He came home in a wheelchair.  A new MS lesion right in the center of his spinal cord caused increased disability. 

There became a gradual awareness that MS was directing our lives.  Almost all decisions, financial, personal, business, and educational were made with MS as a component.  How much ability would the disease take from Bill? How should we prepare for further decline?  Is preparing for decline, giving up?  Finally we just held to the motto "We'll hope and fight for the best while preparing and planning for the worst.  As disease invaded our family life more and more, we came to be quite thankful for the early preparation.  Denial is a short phase of facing chronic illness entering the home.  But as soon as reality sinks in, searching for the keys to maintaining hope and not dwelling on the bad becomes critical.  Especially because dwelling on the bad can be all consuming.

Facing the fact that illness affects all members of the family requires a change of perspective and openness to new ways of living¦at least that's what worked for us.  Living that doesn't emphasize disease, loss or hurt.  MS became a big challenge to face on a daily basis.  As it affected every aspect of my life, Stacy's life, in addition to Bill's, a rediscovery occurred.  We had to define our normal.  Our lives were dramatically different from most but we didn't need to meet preconceived ideas of how life should be.  We just had to define how best to construct our lives.  The only other option was for the healthy individuals in our family to pack up and start a new life, without Bill.  That option was just too painful to entertain, let alone execute.  But if serious transitions were not made it might become the only option.

In my first visit to a local Well Spouse Foundation Support Group (after living with Bill's illness for 10 years) I found the expertise of fellow caregivers who emphasized the key element was to balance my mental, physical, spiritual and emotional being.  Taking care of myself, the caregiver became one of the priorities.  After all, if I sacrificed all of myself to Bill's illness, eventually I'd be no good to anyone, sick or healthy. 

I had already found great release in just going for a walk around the neighborhood a few days a week.  I used that time to solve work issues, pray or just release the emotions and tears.  Bill saw the benefits in that I was less stressed and gentler in dealing with issues at home.   Bill and I had been extremely sensitive to encouraging Stacy's activities because she dealt with 3 years of health issues from age 1-4.  Realizing the gift of a second chance that she was given encouraged her to stay active.  As a freshman in high school she started running cross-country.  Like me, she discovered it was a great release of stress and gave her alone time to think.  She received an award for most improved runner for the season.  Individual accomplishment yielded more confidence and ability to keep her dad's illness in perspective and not make it an all-consuming element in her life.   Many times Stacy and I found ways to combine our "me time."  I walked the track, while she trained in running.

Sometimes that time was used to entertain new ideas and force myself to think outside of the box.  Thinking of the extremes, both positive and negative can be hard but I found comfort in thinking up possible solutions or ways to emphasize the positive while seeing the negatives in the rearview mirror headed toward us.  When I felt I was limiting my thinking I brainstormed with friends and co-workers for new ideas on how to do things.  That's when the biggest discovery and success in our journey with chronic illness was made.  We desperately needed to redefine what a family room included in our version of normal. 

When Bill became too disabled and weak to safely transfer himself in and out of his wheelchair, frustration and disruption to all our lives escalated.  Eventually the disability advanced to the inability to stay in the wheelchair for long periods of time and we all knew we were at a breaking point.  Bill was missing out on too much daily life.  Stuck in the bedroom and desiring that we come in and share what was happening, just wasn't working."  We really needed to reconstruct once again "our normal."

I decided I was going to make a bold move.  When Bill returned from a hospital stay we decided he needed a hospital bed.  Rather than put the bed in the "logical" place¦the bedroom, I had the bed set up in the family room.  We decided what's more family than Bill, the husband, Bill the father, Bill still the person, taking center stage in our home.  Since our kitchen is completely open to the family room it meant Bill could be a part of many daily and evening activities.  He liked the psychological change of not been in the bedroom, and although he was more disabled than ever, he felt less "sick being in the center of activity."  Stacy and I didn't need to make numerous modifications to fix and eat dinner, work on homework or constantly interrupt activities to visit with Bill.  We were all sharing the time and space together.

Admittedly many friends and family had initial shock when they experienced walking through the front door and seeing Bill's bed right there in the center of everything, but over time it really did become our normal.  As it became more normal for us, it became acceptable to others that this was our life. 

Many days my closest friend in this well spouse journey is my journal because the feelings are just too raw and frightening to share with anyone but myself.  Hope sometimes seems impossible to find.  There are those days, though, when kids come bursting through the front door as though nothing at all is abnormal and comfort is found.  It's times like that when there is a deep sense of accomplishment that fills my heart.  It doesn't erase the disease.  It doesn't eliminate the fear, but it propels the motivation to face the continual changes that go with living with chronic illness in the house. 

There isn't one answer on how to cope, and there certainly is no magic solution to dealing with all the emotion, loss of dreams or hurt.  However, finding what works best and defining your normal certainly are beginnings.   

Copyright, Well Spouse® Association.  

Address

63 West Main St, Suite H
63 West Main St, Suite H
Freehold, NJ 07728
Freehold, NJ 07728
Phone: (800) 838-0879
Phone: (800) 838-0879