“Today, an increasing number of older Americans are living longer. While this is something to celebrate, it also means that more of us are likely to require some form of supportive care and assistance for various health needs at some point,” says Susie Sarkisian, Director of Family Services at The Kensington in White Plains, N.Y.
“This is particularly true of loved ones with Parkinson’s disease, multiple sclerosis, ALS, memory loss, cancer and chronic illnesses. While the health problems of a family member can impact a whole family, the effect on that person’s spouse can be especially dramatic, even life-changing.”
Effects of Chronic Illness on Spousal Caregivers
Medical experts agree that quality of life is an increasingly important element of outcome evaluation in medicine and healthcare. In the past, quality of life studies focused almost exclusively on changes in the quality of life of patients, but increasing attention is now being paid to the impact of chronic disease on caregivers.
Most studies assessing the impact of chronic illness on the partner/caregiver show that burden of care does detract from caregivers’ quality of life. For example, one study found that caring for an incapacitated individual worsened health, impaired social and family life and increased stress, anxiety and depression. Another study on Alzheimer’s caregivers showed that many of them were both physically and emotionally exhausted.
As reported in the National Institutes of Health (NIH) research abstract “Quality of life: Impact of Chronic Illness on the Partner,” the spouses of loved ones with chronic illnesses are faced with several significant problems and concerns, including:
- Fear of the future
- Depression and/or anxiety
- Deterioration in partner relationship and/or sex life – decreased interest and enjoyment
- Concern about suffering of patient
- Implications of caregiving role on own health (particularly in the elderly)
- Fatigue/sleep deprivation
- Social disruption – either through looking after spouse or unwillingness to attend social functions alone
- Financial difficulties – patient and/or partner unable to continue working, expense of private care and adaptations to home
If you are a spouse caregiver facing these challenges, organizations such as the Well Spouse® Association provide helpful resources for husbands, wives or partners looking after a spouse or partner with a chronic illness and/or long-term disability.
Tips for Dealing with Changing Relationships Caused by Chronic Illness
Ms. Sarkisian adds, “Fortunately, there are important steps spousal caregivers can take to help them cope with the changes in their role and relationship with their husband, wife or partner.”
According to Psychologist Rosalind Kalb, PhD. Vice President of the Professional Resource Center at the National Multiple Sclerosis Society, “Even in the best marriages, it’s hard. You feel trapped, out of control and helpless. But with patience and commitment, there are ways you and your spouse can deal with the strain a chronic illness can place on your relationship.”
In the WebMD article “7 Ways to Keep Your Relationship Strong Despite a Chronic Illness,” Dr. Kalb offers some helpful advice. For example:
- Communicate – Relationships can suffer when people don’t discuss problems that have no easy or obvious solution. And that lack of discussion can lead to feelings of distance and a lack of connectedness. Finding ways to talk openly about challenges is the first step toward effective problem-solving and the feelings of closeness that come from good teamwork.
- Ease Stressful Emotions – It’s normal to feel sad and to have anxiety because of a chronic illness. Many chronic illnesses, such as MS, are unpredictable, which only adds to the anxiety. The best way to deal with this is to identify the root of the worry and find strategies and resources to address it.
- State Your Need – A spouse with a chronic illness may give mixed messages. When feeling good, your partner may want to do things on his or her own, but then become resentful when others don’t step up to help when he or she isn’t feeling as well. If you are the person with the illness, be clear and direct about what you want because your partner isn’t a mind reader.
- The Caregiver’s Health Is Vital – The spousal caregiver needs to pay attention to his or her own physical and emotional health. If they don’t, they won’t be able to help their loved one. Finding a release for stress is extremely important.
- Strengthen Social Connections – Chronic illness can be isolating. Having strong friendships is a buffer against depression. If you’re the caregiver, you should feel free to socialize alone without feeling guilty about it. Keeping your own identity is important.
- Address Financial Strain – Money can be a strain for any couple, and chronic illness can be a huge financial burden. You and your spouse may want to work with a financial planner who has expertise in handling chronic medical conditions. You can also contact the National Association of Personal Financial Advisors for help.
- Prize Each Other – As one spousal caregiver says, “The illness has made the marriage stronger in some ways. We’re a team. It’s been tough, but we try to keep the important things in mind. We’re together all the time. We’ve kind of morphed into one being. Do something kind for your spouse every day.”
Get the Help and Support You Both Need
Experts make the key point that professional supportive care and lifestyle services should be provided in a planned manner and not just as a response to crises in caring – for the benefit of both the spouse and the loved one in need of assistance.
Adds Ms. Sarkisian, “At The Kensington, we provide a variety of resources for the benefit of seniors, adult children, caregivers and their families. All are designed to respond to the changing needs of older Americans. We invite you to check our monthly calendar of events and join us for one of our free educational programs that are open to the public.
“The Kensington also provides exceptional care and lifestyles with enhanced Assisted Living and Memory Care services in a beautiful, family-centered environment. This takes the burden and stress away from caregivers and enables them to enjoy quality time and special moments with their loved ones every day.”