Caregiver: Comforting Those Who Comfort

COMFORTING THOSE WHO COMFORT

Chances are pretty good that you know someone who is a family caregiver. According to the AARP, in 2020, more than one in five Americans were providing care to someone with an illness or special need.

Family caregiving is usually an unpaid position, done out of love or necessity. In addition to attending to the needs of a loved one, many caregivers still hold down a job while maintaining their own households. They may have financial or personal health issues to deal with, adding to an already difficult situation. The “job” of a caregiver can be frustrating, costly, and stressful — so what can be done to help?

FAMILY SUPPORT

Karen Stobbe was a caregiver for both of her parents before they died. She was a long-distance caregiver for her father, who had Alzheimer’s disease, then one year after he died, her mother was diagnosed with Alzheimer’s, and Karen became the primary caregiver to her for 17 years.

Karen was lucky to have a strong support system from her husband and daughter. “I think it’s very important to have somebody who’s not blood related [to help out]. My husband did not have the baggage that I have because I wanted Mom to be Mom. You need someone who just accepts the person as they are, not wanting them to be someone they used to be,” says Karen.

If Karen’s husband was out chopping wood, he would say to her mom, “Come on and sit out on the back deck and give me some advice.” That gave Karen a break to do her work. Plus, Karen says, “Mom didn’t see him as the enforcer of rules. He was the fun guy. And if he did have to enforce anything, she didn’t care because he was the good guy without family baggage.”

Karen’s daughter was 4 when her grandma was first diagnosed. “She would sit with her and color. Play dolls for hours and do it again the next day. At the age of 12, she would sit with her and do homework,” says Karen.

A LOT OF CAREGIVERS REALLY LOVE WHAT THEY DO, AND ARE HAPPY TO DO IT, BUT THEY NEED TO BE ABLE TO DO OTHER THINGS BESIDES CAREGIVING.

Karen enjoyed taking her mom to the grocery. “But to go by yourself and just be, and get away from the house for a few hours to get your head straight and just breathe…it makes such a huge difference for someone to say, ‘I can come and be with your mom for a while to give you a break.’ Start slow, maybe half an hour to an hour,” Karen advises.

After about three years, Karen began sending her mom to adult day services. “That made a huge difference for us.” She started going about one day a week and eventually got up to five days a week. “It was good for her to be around people her own age, and she was seeing herself as a volunteer in that setting. She would help people in wheelchairs; she was very physically able. Even if they didn’t need help, she would help them. My mom was ambulatory and she could speak, so if you looked at her, you couldn’t tell until she started repeating herself over and over, or didn’t understand what you were talking about,” says Karen.

Despite the dementia, Karen appreciates the time she had with her parents. “You can still have a great relationship and great moments of joy. If my dad had died (suddenly) with a heart attack or stroke, I wouldn't have had some really good years with him. It’s hard though, losing your life. That’s why you need respite and help. A lot of caregivers really love what they do, and are happy to do it, but they need to be able to do other things besides caregiving.”

CAREGIVER CONNECTION

Jackie McCulloch cares for her mother in her mother's home due to numerous medical issues, including blindness, which requires around-the-clock care. Jackie has a brother who helps out, relieving her on Friday evenings through Saturday afternoons. However, his work obligations sometimes interfere with their caregiving schedule, which means Jackie may not get a break for two weeks. When she does get that break, she goes back to her own home. Jackie does receive help from Hosparus Health, an organization that provides hospice or palliative care to patients in their own home, but sometimes even that can be difficult because Jackie’s mother is particular about who comes into her home. Fortunately, there is one particular nurse that Jackie's mother really likes, and she is happy to see her on a regular basis. The connection her mother shares with this nurse is a comfort to Jackie, and to her mother.

HOSPARUS HELP

Terry Patterson cares for her fiance, Ron Warner, who has coronary heart disease. His medical history includes open heart surgery in 2004, 10 stents, a pacemaker, and diabetes. He also has ministrokes and neuropathy. “The hardest thing is watching him go through this,” says Terry. Last year, the doctor told Ron there wasn’t anything else they could do. “I told Ron I would be here for him, and if he wants to be at home, I'm not going to put him in some hospital; this is where he’s going to stay.”

Terry and Ron then decided to get help from Hosparus Health. “They’re God’s angels,” Terry says. Various professionals visit Ron at home through Hosparus: a nurse, a social worker, a chaplain, and a doctor. Terry continues, “All I have to do is pick up the phone and call them. Whatever nurse is on call will be here. It gives you a sense of relief because you know you’re not by yourself.”

Early one morning Terry called Ron’s nurse, Tammy, because he had been sick with chest pain and anxiety. “She told him to take some deep breaths and told me to put a little fan right there beside him and let the air just blow across him and that would help him calm down,” says Terry. “When he got off the phone, I set up the fan and he calmed down and went to sleep.”

CAREGIVER COPING TIPS

Caring for a parent or loved one at the end of life is not an easy task. It can bring a unique set of problems to the caregiver. According to Amedisys, a provider of agingin-place home health care, some problematic symptoms may include: despair, loneliness, guilt, regret, anger, sadness, fatigue, weight loss, and insomnia. Amedisys offers these tips for dealing with caregiver related issues.

• Don't suppress your feelings. Accept and express them.

• Maintain a strong support network and don't be afraid to reach out.

• Consider joining a hospice support group.

• Consider caregiver counseling to get professional advice on dealing with your feelings.

• Spend quality time with your loved one, reminiscing, looking through old photos, listening to music, reading aloud, and don't forget the importance of touch. Give a massage to reduce pain or stiffness.

• Make time for yourself.

• Stay organized.

• Share caregiver responsibilities with family and friends.

• Recognize and prepare for grief symptoms that may occur even before a loss or death.

By Cheryl Stuck

Today's Transitions / Fall 2023