Monday, December 22, 2014

When Illness Turns Your Relationship Upside Down

When we were interviewing couples living with illness for our book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness), one phrase we heard over and over about the impact of illness on the couple relationship was:

"A partnership of equals becomes one of patient and caregiver."

Pre-illness, each partner does have roles he/she plays in the relationship.  One person may deal with the financial while the other deals with the emotional.  One person may be the planner, while the other is the spontaneous do-er.  And of course these roles are not immutable.  They are preferences, and either person can most likely undertake any role - but each person has his/her comfort zone.

Illness disrupts the established order of routines and roles.  The ill parter may not be able to buy the groceries, keep the household budget, or even keep working.  The well, caregiving partner takes on not only these extra chores, but may also need to help the ill partner manage the physical and emotional impact of illness.  The well partner may need to help the ill partner dress, bathe, get to doctors' appointments, while also boosting the ill partner's hope and holding the ill partner when he/she despairs.  And while taking all this on, the well partner is also coping with his/her own overload of exhaustion and anxiety.

So how can a couple whose equilibrium has been overthrown by illness and replaced by an imbalance of dependency still be a partnership of equals?

Here are some suggestions:

  1. The ill partner should try to stay as close to "normal" as possible.  Do what you can do, while taking care of yourself so you don't overload and wind up paying for the exertion.
  2. The well, caregiving partner, as hard as it may be for some, needs to ask for help.  That help can be in the form of having friends/family/others pitch in to do chores like laundry, meal preparation, chauffeuring.  Helpers can also carry some of the emotional load - yours and the ill partner's - by sitting and listening.
  3. While the ill partner may not be able to do activities, she/he can try to be emotionally present and supportive to the caregiving partner.  Often being is more important than doing.
  4. The well, caregiving partner should not get so caught up in doing that he/she neglects the being part.  If both partners can be emotionally present for each, other loads will feel lighter.

The illness can foster a relationship between partners that is one of an overfunctioning well partner taking care of a dependent ill partner.  If the partners can find that emotional connection that binds them, they can each do their part to sustain it, as equals.  This is one way of restoring the balance illness upsets.

Of course, not all partners can find that emotional connection.   It may never have been strong enough or may have weakened over the years and turned to animosity.  Ot the long haul of chronic illness may have eroded it.  What can partners in this situation do?

One approach may be to try to rekindle that emotional bond.  Some couples find that illness has the power to slice through the resentments and the noise and help the them focus on the essential - the love they shared and the compassion they can still feel for each other.  Working with a therapist can help.

Others who don't find love when they search their bedrock may need to buoy themselves with the love and support of friends and family.  Filled with this support, the partners may be able approach each other with kindness, if not love.

How have you been able to be both partner and caregiver/patient?  Have you found a way to hold onto a relationship with you partner that is balanced, or has illness made that too difficult?  I'm interested in  your experiences.


good bad and ugly but trying said...

I am the caregiver in my marriage. We've been married for 21 years and he has been dealing with chronic pain for about the last 10 years with the past three years being the worst. When his pain reaches the upper end of the scale, his PTSD is triggered and he becomes abusive and scary. This has been complicated even further by two head injuries in the past year which has affected his "regular" personality as well. He has far fewer moments of kindness, patience and love toward myself and our children. Worse even is that he is especially cruel to our youngest. When I call him on it, all hell breaks loose. I have help from my family, am in therapy and have a very strong connection to my church. These things keep me from losing it completely. To actually address your question: there is no balance for us. I am caregiver, advocate and emotion in our relationship at the moment. I guess key for me is the term "at the moment". The only constant in life is change so I know things will change. Lately it all seems to be headed in a negative direction and I struggle with my wishing for his death for my freedom. I thought that was bad enough but recently, I find myself intrigued by the attenentions of a man whom I just really realized has been flirting with me... and me with him.I've tried nine ways to Sunday to justify these thoughts but I know I cannot. The only solace I have in this is that I recognize that what I am seeking is a connection that I am mourning the loss of in my marriage. I have to remind myself that this is a form of escapism that is ultimately destructive and a sign that I need to find something positive instead.Actually, this really does not address your question much at all. In my relationship, there is no current "we" at all so this all falls squarely on my shoulders, period. I choose to preserver out of love, obligation and the vows I made 21 years ago. I won't lie. The temptation is strong and quite bothersome but it is forcing me to be vigilant about how I treat my husband and to really cherish the few moments when his true, loving self is briefly revealed. I am by no means a saint. I lose it frequently and find I must always forgive myself those transgressions of thought and action which is easier said than done. Wow. I just realized this writing has been cathartic and affirming. My therapist would be proud.

Emily said...

Wonderful Post, I highly appreciate those people who share some good information, because I like those people who actually share :).

Barbara Kivowitz said...

good, bad, and ugly - thank you for sharing your story. Your therapist would indeed be proud. Sometimes all we have is our honesty and compassion for ourself and our partner. And the support of our community. I wish you continued clarity and more generosity directed your way.