Support for Spousal Caregivers

By Richard Sater

For twelve years, my wife, Dolores, struggled with the ravages of Parkinson’s Disease.  It took a toll on her mind as well as her body.  During that time, I served as her primary caregiver.  It was my job, 24 hours a day and seven days a week – a difficult but rewarding job.

But the time came when my services as a care giver were no longer required, when she passed away unexpectedly in June of 2012.  All of a sudden, I was forced to take a new job – one I was neither prepared nor equipped to handle: the job of being alone after nearly 54 years of marriage.

Just as I had to learn how to be a caregiver, I now needed to learn how to grieve and to adjust to a life without my wife.  The new job was even more difficult because I had so many conflicting emotions – shock, disbelief, anger, sadness, loneliness – and some loss of identity from the recognition that I was no longer the most important person in someone else’s life.

A special challenge was dealing with all these issues at once.  Some have an immediate impact and some linger for extended periods of time.  In addition to these struggles, I needed to recognize that while I had lost my spouse, my children had lost their mother.  Even though they are adults, they needed support from me as they too, grieved.  I felt overwhelmed on more than one occasion.  Hopefully, we will all be available to help support each other as we go through the grieving stages, recognizing that the process will be different for each one of us.

A year and a half after my wife’s death, I can report that I have made progress.  In the past 18 months, I have learned a lot about my new position.  Slowly, I’ve grown more adept at it, although it has never been easy.  Dolores had been a part of my life for more than half a century.

The noted psychiatrist, Dr. Elisabeth Kubler-Ross, in her 1969 book “Death and Dying” identified five stages of grief.  These are denial, anger, bargaining, depression and acceptance.   Looking back over the past year and a half, I can see that I went through all of these stages at one time or another.  Grieving is a very personal experience and it is different for everyone who has lost a significant person in his or her life, but I found things that helped me and I want to share some of those.

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I learned very quickly that I could not grieve alone.  I needed someone that I could talk with, whom I could trust – someone who was a good listener, non-judgmental, and available when I felt the need to talk.  My goal was to understand the multiple conflicting feelings that I was experiencing and not try to deal with all of them at the same time.  This person may be a close friend, family member, minister or counselor.  In fact, it did take more than one person to fill all  these roles.

One of the first emotions that I had to deal with was anger.  Not because my wife had been taken from me so suddenly – I would not have wanted her to suffer – but because she had been stricken with Parkinson’s Disease in the first place.  My anger got so intense that I could not sleep.  Finally, I made an appointment with our priest to talk about it.  In our first session, we talked about the anger that I was experiencing and other topics relating to how I was coping with losing her.  The most important aspect of this meeting was that, after it was over, I wasn’t angry any more.  We had a few more meetings that were also helpful for me.

In addition to having several confidents (some very good friends as well as the priest), I also relied on a network of other friends to help get on with the process of living.  As the primary caregiver for my wife, I had become isolated from much of our former social group.  It was up to me to initiate contact with others to let them know that I was interested in social activities.  I rejoined a group of golfers that I had played with in the past.  I started having breakfast with a group from church on Sunday mornings and I frequently walked in my neighborhood with a close friend.  All of these activities were beneficial, even therapeutic for me.

I realized that while I was busy caring for my wife, new families had moved into our neighborhood whom I had not met.  With more than a little encouragement, I hosted a neighborhood gathering at my home.  The act of planning and organizing it pushed me  a little out of my normal comfort zone.  The event proved to be a success, as I got acquainted with more of my neighbors and they with each other.  I made some new friends, and I think that it also helped bring our neighborhood together a little.

There is no question that doing things with other people is essential, but I learned that it was equally important to develop interests of my own.  For me, remaining active and busy was important for my survival.  The routine tasks of taking care of the house and yard helped fill some of the daytime hours.  Home projects were also helpful.

I rediscovered the importance of exercise – walking, riding a bicycle, golfing, working in the yard.  Anything that required movement and focus helped me.  I acquired an MP3 player and, with some help from my oldest grandson, loaded music onto it so I had something to listen to while I walked.

After the chores were done, I had plenty of time to read, listen to music and watch movies on TV – other pastimes that I had put aside due to the fulltime task of caregiving.  I started reading again – a mixture of fiction and non-fiction – something that I had not done in a long time.  I also caught up on some overdue letter writing, starting with thank-you notes to everyone who had sent cards of sympathy or flowers in memory of Dolores or food to help us get through the funeral period.  I also kept in touch with other friends through e-mail messages.

I have never been one who enjoyed a special hobby, other than participating in sports, but I felt the need to do something that mattered to me, something that required thought and energy and a little creativity.  I came up with the idea of generating a history of the life that my wife and I had together.

Over the course of several months, I put together a scrapbook of photos of her and us and our family and friends, including special events and activities.  I wrote captions to describe the pictures and asked others to contribute their memories, and everything ended up in the book.  It helped me remember the good times we had together and it gave me something to share with everyone who knew her.  It became a beautiful tribute, and it continues to comfort me.  It will be there for my children and grandchildren when I am no longer around.  My children have asked me to write about my youth and some of my family activities, and I intend to do that as well.

A good friend suggested another project for me.  I had faced numerous challenges during the years that I cared for Dolores, and my friend suggested that my experiences might help others going through the same situations.  I enjoy writing, so I began putting together an article about the problems I faced and the solutions I found while providing that care.  The article is a comprehensive summary of safety considerations, caring activities and information about pertinent legal documents.  Writing it gave me a focus and a reason to believe that I could do something, in my wife’s memory that could benefit people who had the same challenges that I faced.  I submitted the article for publication online and had a very good response – it gave me a real lift.

As Parkinson’s took its toll on Dolores, our world became smaller and smaller.  For the last year or so of her life, she was unable to travel, so we stayed home.  After she passed away, our son, Richard, encouraged me to visit him and his partner in Seattle – my own hometown.  I hadn’t visited there in many years, though my brother and his family still live there as well as my son.  I did visit Seattle, and reconnected with a cousin and a few old friends as well.  i made two other trips out west to participate in special events.

Nearer to home, I’ve become closer to my younger daughter, Doris, and her family, who live only ten miles away.  It has been a pleasure to spend more time with my local grandsons and granddaughter.  They all play soccer and I have gone to watch some of their games.  I am also helping them get introduced to skiing.  I have dinner with Doris and the family about once a week and I usually make the dessert for that meal (I feel useful and it helps her with the meal preparation).  I keep in touch with Janet (my older daughter) and Richard by phone, on a regular basis.

Holidays are still difficult.  On our wedding anniversary and on my wife’s birthday, i can’t help but remember previous events on those days.  I visit the cemetery and take flowers – and talk to Dolores while I am there.  Christmas is especially hard for me, especially my first one alone.  I tried to maintain the same traditions that we had observed for so many years – with some adjustments to account for the fact that things were no longer the same.  I put up a Christmas tree and hosted a family gathering for dinner.  We left her usual place at the table empty, to remind the family that she was with us in spirit.  She had collected sets of the US quarters for each of the grandchildren, and I wrapped them as gifts from her.  That first Christmas was tough.  The second one was still difficult.

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Many resources are available to help anyone who is going through bereavement.  There are numerous organized groups that can provide information about the grieving process and may be able to provide help through the stages of grieving and, possibly, provide some social networking.  It can be comforting to learn that others are going through the same process.  Do some research online, or even in the old-fashioned phone book to see what’s available in your area.  Some of the groups are hosted by senior centers, funeral homes or are specifically for people who have lost loved ones to cancer, or multiple sclerosis or Parkinson’s, etc..  Some groups are led by trained guidance counselors and others are more informal.  

Are there hobbies that you have not had time for, books that you have wanted to read, concerts or theater programs that you would like to attend?  These activities can be done alone or provide an opportunity to meet other people.  Stay in touch with friends by phone or e-mail.  Keep a journal.

Activities with family members or close friends are a good place to start.  Join a club   Senior Centers offer a wide variety of activities that may be of interest.  Many colleges – like our local community college – offer free or reduced tuition to seniors.  Let people know that you are receptive and interested in some social activities.  Just being with others will help you focus on things besides your own grief.

You may have had experiences with care giving that that you would like to share with others.  Many organizations have newsletters and are receptive to including short articles describing those experiences.

It helps a great deal, to give yourself something to look forward to, something that you can anticipate with pleasure.  Be creative – do something different.  Volunteer.  Travel.  Ski.  Fish.  Ride a horse.  Hike.  Go somewhere just to have a change of scenery.  That will not stop you from thinking about your lost partner, but it will be different  - and that is desirable.

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My goal, after losing my wife, was to build a life without her.  I don’t think I will ever be entirely adjusted to her absence.  But I have made progress these past 18 months.  Grief is intensely personal, and people experience it in different ways.  I think that grief is a journey of small steps.  I move ahead.  I have my work cut out for me, but it will keep me busy and engaged for the rest of my life.  It’s up to me – by myself – to work at it, to make something meaningful; of it.

 

Written by Richard N. Sater

March 10, 2014

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