How to cope with a sick spouse?
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By Judith Graham, Kaiser Health News
How to cope with a sick spouse?
Experts offer practical advice on how compassionate love can help support someone cope with a sick spouse with a chronic illness and care for themselves at the same time.
For a dozen years, Larry Bocchiere, 68, didnβt find it especially difficult to care for his wife, Deborah, who struggled with breathing problems. But as her illness took a downward turn, he became overwhelmed by stress. He didnβt knowΒ how to cope with a sick spouse with a chronic illness.
βI was constantly on guard for any change in her breathing. If she moved during the night, Iβd jump up and see if something was wrong,β he said recently in a phone conversation.Β βItβs the kind of alertness to threat that a combat soldier feels. I donβt think I got a good nightβs sleep for five years. I gained 150 pounds.β
As her chronic obstructive pulmonary disease worsened and heart failure set in, Deborah was taking 24 medications each day and rushing to the hospital every few weeks for emergency treatments.
βToward the end, I couldnβt stay in the same room with her for too long because I couldnβt stand to watch her being so sick,β Bocchiere said. His wife died in 2013.
What is Compassionate Love?
βCompassionate love, also called companionate love, is about intimacy, trust, commitment, and affection. β¦ This type of love involves caring deeply for the other person, truly knowing the other individual, and is committed to the other person through both good times and bad.β
Kendra Cherry
Is divorcing a chronically ill spouse really what you want?
Marriages are often shaken to the core when one spouse becomes sick or disabled and the other takes on new responsibilities. For some people, divorcing a chronically ill spouse is seen as a credible option rather than trying to adjust to the new reality. Other people want to support their partner but donβt know-how.
If you want to know how to cope with a sick spouse with a chronic illness βyou have to rewrite the relationshipβs expectations. And the longer youβve been married, the harder that is to do,β which is why some people think divorcing a chronically ill spouse is an option, said Zachary White, an associate professor of communications at the Queens University of Charlotte. With Donna Thomson, heβs the author of βThe Unexpected Journey of Caring: The Transformation From Loved One to Caregiver.β
Compared to adult children who care for their parents, peopleΒ married to a chronically ill spouse perform more tasks and assume greater physical and financial burdens when they become caregivers, an analysis of 168 studies shows. Symptoms of depression, as well as strains on relationships, are more common whenΒ living with a sick spouse.
Communication often becomes problematic, as husbands and wives feel disoriented and uncertain about how to respond to each other. Especially early on, the illness tends to βheighten emotion and short-circuit communication,β write Barbara Kivowitz and Roanne Weisman in their book, βLove In The Time of Chronic Illness: How to Fight the Sickness β Not Each Other.β
Both women were cared for by their husbands (Kivowitz suffered from chronic pain; Weisman had a stroke). βWe were gobsmacked by how much illness took over the relationship,β Kivowitz said earlier this year in aΒ video presentation.
Coping with a spouse that has chronic pain often includes a feeling of isolation
Complicating these issues is isolation living with a spouse that has chronic pain. βWe often hear about family members who wonβt get involved or are overly critical of the well spouse but never pitch in or visit,β said Robert Mastrogiovanni, 72, president of theΒ Well Spouse Association, which offers support groups to members. βAnd then there are lifelong friends who drop out of the picture.β
Most of the time (55%), older spouses are caregiving alone as husbands or wives come to the end of their lives, without help from their children, other family members or friends, or paid home health aides, according toΒ research published earlier this year.
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Read more:Β What is it like to be married to a person with epilepsy
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When a personΒ married to a chronically ill spouse is left alone to cope with the chronically ill spouse, there is a real risk that the marriage will be undermined by illness and essential emotional connections lost. Living with a spouse that has chronic pain places significant strain on the marriage.
βThe well spouse can go from being a partner and a lover to a nurse and a caregiver, which is an entirely different kind of relationship,β said Mastrogiovanni, who cared for his wife, Kathleen. She hadΒ multiple sclerosisΒ for 50 years before she passed away last year. For MastrogiovanniΒ divorcing a chronically ill spouse wasnβt an option he really considered.
Spouses can become distant as they struggle to cope with a sick spouse with feelings of loss, fear, and β frequently β misunderstanding and anger.
βHe wouldnβt talk to me. He would seem like he was angry at me, but I didnβt really understand,β said Terri Corcoran, 69, whose ill husband Vincent had Fragile-X associated tremor/ataxia syndrome, a neurodegenerative disorder.
It took five years for her ill husband to get a diagnosis. During that time, Corcoran said, βI felt like I married someone I didnβt know. It was devastating. It took me a long time to realize his brain was impaired.β
How to cope with a sick spouse with chronic pain
How can older couples navigate these challenges when they are not interested inΒ divorcing their chronically ill spouse. When all they want to do is protect their relationships β an essential source of comfort and support β when illness strikes? Β Several experts offered suggestions:
Reset expectations when dealing with a sick spouse. Couples need to face what is being lost as a result of illness and, at the same time, focus on what remains intact.
Dr. John Rolland, an adjunct professor of psychiatry at Northwestern Universityβs Feinberg School of Medicine and author of βHelping Couples and Families Navigate Illness and Disability: An Integrated Approach,β tells of a couple in their early 70s heβs counseling. Both were working when the wife started having symptoms ofΒ Parkinsonβs diseaseΒ five years ago.
In retirement, the couple had planned to do a lot of biking, hiking, and adventure travel. Now her mobility is limited, heβs down in the dumps and tension has invaded the relationship. He wants to be aΒ loving husband caring for his sick wife but it is a challenge.
Rollandβs advice: Figure out what you can do together, and what each of you can do separately. He helped them see that they can share some cherished activities β reading books together and attending the theater β and add new ones, such as cooking. And the husband can still go biking, without worrying about making his wife feel bad, so long as they communicate openly about respecting each otherβs needs.
To better cope with a sick spouse with a chronic illness, it is important to divvy up responsibilities. When thinking aboutΒ how to support a partner with chronic illness couples need to retain a sense of balance in their relationships, to the extent possible. Often this is threatened as one sick spouse becomes less able to function and the other takes on more responsibilities.
Kivowitz has a practical suggestion:Β create a list of everything that needs to be done in your household, then divide up tasks. If there are things that neither of you wants to do, brainstorm ways to find help.
In her video, she describes how she and her husband Richard did this. Kivowitz signed up for laundry, meal preparation, keeping medical records in order, researching her condition, and arranging help at home. Richard took on grocery shopping, getting medications, dealing with insurance, paying bills, financial planning, and working to keep the household afloat. Neither wanted to do housecleaning β a task that could be given to someone else.
When thinking aboutΒ how to support a partner with chronic illness, include the ill spouse in divvying up responsibilities. Avoid assigning the ill spouse to a passive role of being βcared for.β To the extent possible, set boundaries around caregiving and maintain reciprocity in the relationship.
Rolland tells of a woman with polycystic kidney disease whose husband helped administer home dialysis three times a week: βThey would go into a room where all the equipment was kept, and, when dialysis was over, close the door and focus on being a couple.β
When Mastrogiovanni retired from an accounting job with the government, he and his wife bought a van with a ramp and traveled all over the country. When she could no longer feed herself, theyβd still go out to restaurants where heβd feed her by hand β something the coupleβs therapist had encouraged.
When joint activities are no longer possible, just being with someone can express closeness and solidarity.
Although Corcoranβs husband couldnβt talk, sheβd sit with him and talk to him about what she was feeling: βHe would put his arms around me, and I would say βIβm doing the best I can. I know this isnβt your fault, but itβs really hard.β And I always ended up feeling better.β
Expand your network. If friends and family members donβt seem to understand what youβre going through, find people who do. Well and ill spouses may need to find support in different places including a well spouse association or support group for spouses of chronically ill partners.
Bocchiere, whoβs chairman of the Well Spouse Association, aΒ support group for spouses of chronically ill people, said that when a spouse is seriously ill, βwe lose our best friend, our love, our future. But your children, friends, relatives β they donβt get it.β
The first time he went to one of the associationβs support groups and listened to other spouses tell their stories, βI was home,β he said.
Make meaning. βAt some point,β White said, βyou have to be able to make meaning of what youβre going through as a caregiver and incorporate this into a new sense of identity.β
For many people, meaning revolves around the notion of βfidelityβ β the commitment to their spouse, their vows, and the βweβ of their relationship, he said.
Corcoran converted to Catholicism the year that her husband was diagnosed and found solace in her faith and her church. βI kept praying that our marriage would have meaning,β she said.
Learning that people from her church saw her marriage as βcompassionate loveβ gave a deep sense of satisfaction. Ultimately, Corcoran came to understand βthis is a cross my husband and I were carrying together.β
Kivowitz has observed a profound shift in herself and others, from βcaregiving as a set of daily responsibilitiesβ to caregiving as an expression of compassion.
βMeasure success,β she said, βby how well you connect, love, and feel loved.β
Caption:
Coping with a sick spouse often includes a feeling of isolation.