A Full Measure of Devotion: Spousal Caregiving



After stroke, spouses often find themselves in the role of primary caregiver, sometimes overnight. The stresses of this responsibility can have a negative impact on a relationship that has been suddenly and drastically altered.

Caregiver Joan Sherman with husband George

Joan Sherman, 73, of Clearwater, Fla., has been providing care to her husband George, 72, since his stroke six years ago. She identified the spouse caregiver’s dilemma this way: “People don’t realize spouse caregivers are different from other caregivers,” she said. “We have lost our emotional ‘cushion,’the shoulder we leaned on, the one we went to when we got down, who made us feel better, our companion and best friend. No matter how many friends or children we may have, there is only one spouse. And for all intents and purposes, we’ve lost them and we’re dealing with the physical care and the healthcare system and finances and the house — all of it on our own. It can be a daunting, never ending task, and then, where do we go for comfort?”

Every stroke is different, so the care required is also different. One survivor may have all cognitive abilities but no speech, while another has dementia and cannot handle daily activities. Still another may be in a wheelchair and unable to feed himself. Some caregivers find it physically taxing but emotionally fulfilling. Others feel abused, overwhelmed and resentful. Whether it’s sexual intimacy, conversation or future plans, the relationship changes when a spouse becomes a caregiver. As one wife put it, “How do you cope with losing your husband and gaining the equivalent of a special needs child?”

We talked with psychologist Dr. Barry Jacobs, director of behavioral sciences at Crozer-Keystone Family Medicine Residency Program in Springfield, Penn. about how these essential caregivers can gird themselves for the rigors of their role.

"I talk to spouses about coming to terms with the fact that the person they married is gone, at least in part." - Dr. Barry Jacobs

Loss

Although all strokes are different, most have one thing in common — some sort of physical or cognitive loss is involved. Only about 10 percent of stroke survivors make a complete recovery. “I talk to spouses about coming to terms with the fact that the person they married is gone, at least in part,” Dr. Jacobs said. “They have to befriend, if not fall in love with, this new person with whom they find themselves. What do they still like about their loved one? I also talk about grieving the loss of the old spouse as a means of better accepting the new one. That can be very difficult.”

Every deficit a survivor experiences is a loss for his or her caregiver as well, but not all losses are equal. Personal communication and personality changes are generally the losses that are the most difficult to handle. As Dr. Jacob pointed out, most caregivers can cope with pushing a wheelchair if their spouse can talk with them, share a joke or be a confidante.

Grieving these losses is an important step in getting beyond them; it is the beginning of acceptance. Ceremonies and rituals are often effective ways for people to mark transitions in their lives. “Ceremonies and rituals help spouses accept the new and recalibrate their expectations for the future,” Dr. Jacobs said. “Acceptance is at least half the challenge of adjustment. It helps them go on.”

Many caregivers believe that caring for a loved one is their responsibility and that asking for and accepting outside help is tantamount to shirking their duties. 

Dr. Barry Jacobs

The personality and behavior changes many survivors experience are often the result of changes to their brains that cause cognitive changes like getting frustrated more easily, diminished impulse control or a loss of empathy. Clinical depression after stroke is common and may lead survivors to lash out verbally. It is vital that they be evaluated, so that if depression is diagnosed, they can be treated. “Antidepressant medications can make a real difference,” Dr. Jacobs said, “and improve the patient’s outlook and behavior.”

Some survivors lose control and lash out, and in those cases Dr. Jacobs emphasized that caregivers must react quickly and decisively. For example, if yelled at, the caregiver should leave the room so that the survivor learns that yelling does not produce the outcome he or she wants.“I tell caregivers repeatedly that they may feel obliged to help their loved ones, but they aren’t required to allow themselves to be abused,” Dr. Jacobs said.

“When the stroke survivor gets angry with you, it helps to remember he is angry at his situation and don’t take personally,” caregiver Joan Sherman said.

Caregiver Christine Brimer-Gilboe with husband Don

There may also be a loss of freedom. Caregiver Christine Brimer-Gilboe, 59, of Fountain Hills, Ariz., said: “Sometimes I feel like I am in prison, stuck at home, unable to travel. Making friends becomes difficult. What happened to our retirement we worked so hard to achieve?” She has been her husband Don’s caregiver since his stroke in 2008 at age 66.

Although a couple like Christine and Don need to acknowledge and grieve the abrupt changes to their retirement plans, they don’t have to abandon all their dreams. Couples have to develop new, if less ambitious, dreams that are more conducive to the survivor’s capabilities and their finances,” Dr. Jacobs said. For instance, instead of a cross-country RV trip, they take outings to a park. It is still something they plan and enjoy together. “If spouses simply dwell on the dreams that have been lost, they will never find their way back to enjoying each other again,” Dr. Jacobs said.

Negotiating a New Relationship 

Spouses must make adjustments and define new boundaries. Joan Sherman found what didn’t work in this regard: “One big mistake I made was doing everything for him instead of insisting he do things that I knew he could do for himself,” she said. “He became totally dependent on me and still is for everything. I am making him do things now, but it’s a fight every time.”

Dr. Jacobs acknowledged that this is a tricky situation because caregivers don’t want to ask more of the survivor than he or she is capable of doing. At the same time, they don’t want to do too much and make the survivor dependent, compounding his or her degree of disability. “I suggest to caregivers that they think of themselves as the survivor’s coach,” Dr. Jacobs said. “A coach provides encouragement and motivation to do the most he can with his remaining strengths. That’s the way to maximize stroke recovery and help maintain the survivor’s dignity. Coaches sometimes can be hard on players to help them learn to perform better.”

Depending on the survivor’s capabilities, couples have to redefine their respective roles. Part of that is reassessing the division of labor in the relationship. However that is worked out, it is important that couples preserve a sense that they are taking care of each other, not just the well spouse taking care of the survivor. “If they can maintain some semblance of mutual give-and-take, then they are more likely to preserve emotional closeness as well as physical intimacy,” Dr. Jacobs said. “They also need to be able to draw on their connections to family members and friends to prevent becoming isolated.”

Getting Help and Support

Many caregivers believe that caring for a loved one is their responsibility and that asking for and accepting outside help is tantamount to shirking their duties. As a result they may judge themselves harshly and fear that others will judge them as a neglectful spouse. “I always focus on whether accepting help would empower caregivers to better pursue their mission—care of their loved ones,” Dr. Jacobs said. “If they believe it is empowering to get help, then they are much more likely to accept help.”

“When people ask if there is anything they can do, say ‘yes,’ and be prepared with suggestions as to how they can help,” Joan Sherman advised. “Stroke caregiving is a long haul and it gets old fast. Help is usually offered in the beginning, so take it, because it isn’t offered indefinitely. People figure you don’t need it after a couple of years.”

Christine Brimer-Gilboe asked a question that many caregivers wrestle with: “When you have limited resources to spend on hiring help, who should you hire it for: The survivor, to get out, exercise, etc.; or the caregiver who is exhausted from doing all the work at home or her job or both?”

Of course, the answer depends on the circumstances, such as the survivor’s functional limitations and the caregiver’s emotional state. “In general, I think you get the most bang for your buck by hiring home health aides to assist with personal care such as grooming, toileting and dressing or by simply keeping the survivor company so that the caregiver can get out of the house to do errands or even enjoy herself,” Dr. Jacobs said.

Dealing With Unwanted Advice

Irritating relatives seem to be a universal human experience, and many caregivers ask some form of this question from Christine Brimer-Gilboe: “How do you handle relatives who always have lots of suggestions for how you should do things, though they have no idea what it is you do?”

Though they mean well and think they’re helping, their unsolicited advice and uninformed opinions prove the point that not all help is helpful. Dr. Jacobs suggests that caregivers thank their relatives for being so concerned and then invite them to choose from a list of specific ways they can be helpful.

“One caregiver I knew actually had a box of index cards with a specific chore on each card. One of two things will happen: The relative will step up and take responsibility for completing a concrete task that really needs to be done. Or that relative will back off completely, never to get involved by offering advice again. Either way, the caregiver wins,” Dr. Jacobs said.

How Spousal Caregiving is Different

Dr. Jacobs confirmed what many caregivers say: Spouses feel differently about the role of caregiver than those caring for a parent. Research on dementia caregiving indicates that adult children caring for a demented parent are twice as likely to be depressed as same-age peers who aren’t caregiving.“For spouses, the likelihood of becoming depressed is six times greater than for non-caregiving peers,” Dr. Jacobs said. “I think the same trend is probably true for stroke caregivers. Spouses suffer more than adult children. The marital relationship is quite different — both more fragile and more intimate — than even a loving parent-child relationship. Spouses look for more emotional closeness than do adult children. Most spouses take seriously their vow to care for their loved ones through sickness and health.”


Self-Care

No matter how great your love for your spouse, it does not make you immortal or immune to the stresses of caring for someone who is disabled. After all, you are taking responsibility for two lives. If you don’t take care of yourself, you will wear out. Caregiver Joan Sherman learned this lesson early on: “I didn’t get out of the house for about four days one time in the first year, and I got so depressed I called the doctor. While waiting for a call back, I had to run out to do an errand. I felt so much better after just that little break, I didn’t need the doctor. I learned a valuable lesson: Find time to get away, if only for an hour or two every couple of days.”

Dr. Jacobs counseled that this time has to be built into the caregiving plan and then defended against the many requirements and emergencies that arise. “If they don’t protect the time, mission creep will set in, and their duties will consume it,” Dr. Jacobs said.


Finding Support

There’s no getting around it. The caregiver role is stressful and physically demanding. Caregivers last longer if they find support. Some benefit from talking about their situations with others, yet spouses may feel it is somehow betraying the relationship to discuss their feelings outside the family.

Dr. Jacobs pointed out that it is not a betrayal if it enables caregivers to be more loving and do their jobs better. In fact, it is the responsible thing to do. Support groups are valuable because the members can empathize with the situation, but having been there, they can also offer real-world solutions. “Many people prefer online support groups because they don’t have to leave home to attend and because they offer greater anonymity,” Dr. Jacobs said.


When faced with challenges recovering from stroke, it’s important to have emotional support. That is why we created a network to connect patients and and family caregivers with others who've been their. Join the Support Network. 

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