Community//

Bringing Back the Joy

How to Find Happiness for Caregivers and Survivors

When a stroke or other sudden health event has wreaked havoc on a couple’s life together, retaining intimacy and joy may pale in the face of preeminent life and death issues.

Yet after the shock dissipates and life continues for both the survivor and the caregiver, finding ways to reawaken joy and intimacy can be crucial for the survival of the couple. And if each partner chooses to seek happiness in the new circumstances, both joy and intimacy can be rediscovered in new ways, so that life can once again be fulfilling, even if it is also irrevocably changed.

“We all have challenges in life, no matter what they are,” said Deborah Massaglia, president of the Hope After Stroke Foundation and a leader of support groups for stroke survivors and caregivers. “You owe happiness to yourself and to others by trying to find the happiness and joy in your life. If you don’t try to seek it, it’s not going to come to you.”

The ways to rediscovering joy are varied and may begin with attending support groups, listening to experts and experimenting with new ways to look at yourself and others. It will also be a process that takes time because challenges inevitably crop up for both survivors and caregivers. The challenges run the gamut.

For example, with stroke survivors in particular, there may be withdrawing from life due to physical changes that affect their speech or ability to move the way they formerly could. A grandfather may no longer be able to throw a football with the grandkids, or a grandmother may be unable to share heart-to-heart talks in the same manner. This may cause a grandparent to avoid the grandchild due to shame or guilt, but the grandparent hurts a beloved grandchild more than anything by this choice.

“Kids adapt,” Massaglia said. “They do. You want to allow them to adapt, because otherwise you’re making that choice for them and that’s not fair too.”

Inevitably, these issues also affect the caregivers, whose whole lives are shattered too. A part of that means that they can no longer share simple activities with their partners that they used to treasure, whether visiting with grandchildren or just going out into the world to dinner or a movie.

“It’s really sad; it’s a whole new relationship,” Massaglia said. For example, recently a retired couple came to her support group, and the man was vigorous and full of life, while his wife had suffered a stroke and “was just giving up.” Massaglia wanted to tell her, “You are going to lose your husband. He doesn’t want to leave you. He just wants you to go to the movies. You’re going to lose him if you don’t go. You see his side of it. You see the pain in his face. He’s trying. He wants us to encourage her.”

The danger though is that if Massaglia pushes too hard, the wife, who had the stroke 18 months before, may stop coming to the support group, which did indeed happen, although she has again started to attend, so change may be coming. Generally, Massaglia finds that when people arrive at the support group, they are ready to change.

So, what do you do as a caregiver to reverse a difficult situation and help joy and/or intimacy reemerge with a hurting partner? Here are some tips that Massaglia has seen help many couples over the years.

  1. Establish Boundaries

When a partner is suddenly hurting from a stroke or other ailment, anger is often abundant, and the caregiver can end up taking the brunt of it. This is not okay, and the caregiver may need to reteach the partner to speak respectfully, especially if the brain is affected as with strokes. To do so, Massaglia said, “Say ‘I love you and I’m going to be there for you, but you’re not going to talk with me disrespectfully.’” If the survivor is yelling, ascertain that the person is safe, then leave after saying “I’m going to be back when you’re not talking to me that way.” Just as a parent does with a screaming kid, “You have to treat that behavior. Let them know that it’s okay to be mad, but they’re not going to take it to the next level of abuse.”

  1. Accept Help

Caregivers tend to decline help, and when asked why, they tend to respond with ‘I don’t know,’ Massaglia said. Yet, no caregiver is able to manage alone, and when they attempt to do so, they generally become withdrawn and exhausted. “You see it in their shoulders,” Massaglia said. “You see it in their faces. You see this person who looks like they’ve been beaten up.” In general, caregivers tend to be overlooked compared to their loved ones, but they also tend to say no to real offers of assistance. Massaglia recommends changing that behavior. If someone wants to help, they will offer specific suggestions, such as bringing dinner or taking the patient to a doctor’s appointment. Say yes to these offers, Massaglia said, “Let them do it. Don’t say ‘No, no, no.’ If somebody tells you they want to help you, let them.”

  1. Attend a Support Group

Support groups can be a source of strength and guidance for attendees. Just sitting and listening can help members learn that the stroke or disability doesn’t have to define life for either the survivor or caregiver and that there is hope in the road ahead, Massaglia said. They learn to accept changes, which may mean that some friends are no longer there, but other relationships grow stronger. Letting go of anger or guilt can also be addressed with a support group. To thrive post-stroke, Massaglia said “You’ve got to get off the pity party train. I know you feel you should be on it because of what happened to you, but staying on it will get you nowhere. All you’re going to do is cry.” Survivors and caregivers who thrive “have jumped off that pity party train and gone on to live great lives.” She added, “It’s a hard leap to make,” but certainly worth it.

  1. Address Physical Intimacy

Depending on the age and desires of a couple, physical intimacy may be an issue. Support groups may help with this, but only if the group has a substantial number of members who feel similarly. Each situation is different, but there are inevitably ways to revive intimacy when someone has suffered an accident or stroke. Experts can help provide direction with physical impediments, and discussion between partners may provide helpful ideas. Regardless, she said, “You don’t want to ignore it.”

A last tip really isn’t for the caregivers, but for the survivors of strokes or other issues. Massaglia recommends that survivors not only speak respectfully to their caregivers, but also express appreciation for their care. Caregivers “don’t have to stay. There’s no contract. They’re choosing to stay with you because they love you. You have to respect that and say thank you.” So if you aren’t hearing a thank you from your loved one, here’s a thank you from us: “Thanks for all your doing. You have been amazing this year.”

Kathi Koll is the founder of The Kathi Koll Foundation and author of Kick-Ass Kinda Girl: A Memoir of Life, Love and Caregiving. Please visit KathiKollFoundation.org or KathiKoll.com to learn more and read an excerpt.

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