Lynn St. John looked fondly upon her husband, Randy, as he sat in a motorized wheelchair in their cozy Loveland home.
“I think it’s the mutual love and respect we have for each other that gets us through,” she said. “But it is difficult, and I can’t imagine if I hadn’t already been trained for this.”
Lynn cut back her hours as a certified nursing assistant (CNA) to be the sole caregiver for her husband of 14 years, a 67-year-old veteran with stage 4 kidney cancer and peripheral artery disease, as well as for her 93-year-old father, who just passed away this October. Her training helps her handle common caregiving tasks, such as helping with a shower, which can be a source of anger, resentment or embarrassment in other caregiving relationships, she said.
“As a CNA, I see the different dynamics of [caregiver] situations, and there is a lot to be said about the importance of taking care of yourself as well as your loved one,” Lynn added.
“I use the analogy of the oxygen masks on an airplane,” said Victoria Jerome, a psychologist with UCHealth’s Mountain Crest Behavioral Health Center in Fort Collins. “You need to put your mask on first before you can assist others.”
Ask for help
“I see caregivers who are overly fatigued, depressed or resentful from providing care,” Jerome said. “They feel they are the only one who can help — that no one else can do it — but in reality, if they would just reach out, there often is that support.”
And be open-minded about the ways others can help, said Geriatric Clinical Nurse Specialist Peggy Budai of UCHealth Northern Colorado, who, along with being a nurse, also was a caregiver for her mother.
“Everyone might not be a caregiver type of person, but that doesn’t mean they can’t help in other ways,” she said.
Ask family members who might feel uncomfortable with the care aspect to help with transportation, cooking meals, cleaning the house or handling yard work, she added. And not just one time, Budai stressed. “It’s important that caregivers make it clear that this help is needed on a regular basis.”
“I try to help caregivers recognize the importance of asking for help and the importance of balancing work, play and rest,” Jerome said. “People tend to feel they don’t have time or can’t afford help. We look at all those roadblocks and figure out ways we can overcome them.”
Find resources, education and training…
Powerful Tools for Caregivers is a six-week class offered several times a year through a community partnership that includes UCHealth’s Aspen Club. The class provides helpful strategies for current and future caregivers.
“Caregivers can call our program (Caregiver Support Program at 970.498.7758) as a first point of contact to help them get started on creating a plan that lifts some of the stress of caring for someone else. The program can also offer respite assistance to encourage them to get an occasional break,” said Lynette McGowan, caregiver support coordinator with Larimer County Office on Aging. “Many caregivers feel isolated. They don’t know where to start and feel overwhelmed. They don’t have to do this alone. What they do is important and they deserve to be supported by their community.”
Improving to better serve the caregiver
“Family caregivers are the backbone of our long-term care system, and are truly our ‘first-responders’ and need to be viewed as an integral part of the health care team,” McGowan said.
UCHealth’s hospitals in northern Colorado and metro Denver are NICHE (Nurses Improving Care for Healthsystem Elders) designated sites. NICHE sites implement a variety of best practices to address the special needs of older adult patients and their families.
Patient’s Passport as a resource
One initiative is the Patient’s Passport, Budai said.
The Patient’s Passport program gives caregivers a plastic pouch containing a booklet in which the caregiver enters important health care information about the person they are caring for. Daily routines and communication preferences — essential information the caregiver has noted while caring for the person — is all in one place so health care providers and others have that information when helping with care.
Eligibility for veteran services
Randy’s veteran’s benefits have been a good resource, but Lynn said it wasn’t easy to get them. She had to “keep at them,” asking several times over for the benefits she thought her husband deserved.
To really understand eligibility for benefits through the VA system, a good starting point is Larimer County Veterans Service, McGowan said.
Take a break and stay connected
A caregiver should take at least 15 minutes a day to meditate, read a book or take a walk, Budai said.
“Without taking breaks — just like working without breaks — it is very stressful and can lead to physical or mental debilitation, such as not sleeping, losing weight or neglecting your own personal health,” Jerome said.
Find a motivating activity and a group of people who share your situation, such as other caregivers; or find that friend who will continue to motivate you to take a break from caregiving, she said.
Lynn found her motivation with community service.
“I work and am active on the I Love Loveland committee, so even when I think I’m not in the mood to do something for me, it gets me out of the house,” Lynn said. “It’s so easy to feel like you’re stuck in the home because your loved one might not be able to go with you. But that time away is important, and I’m lucky that Randy is wonderful and understands that.”
Budai said she feels caregivers need an outside friend persistently encouraging them to do things outside the home.
“A caregiver will probably turn down a coffee date over and over because they feel they don’t have time or are guilty for the inconvenience they think it will create,” Budai said. “But keep asking because when you are in the middle of caregiving, you don’t see how you are isolating yourself. For me, it took a friend pressuring me.”
“I had periods where I wasn’t taking care of myself, and I saw the care I provide suffered,” she added. “You need to reach out to friends and family or even counseling if you need to. There are resources for mental health or spiritual support. It’s not a one size fits all, but do what’s right for you.”