For the family members who find themselves caring for a loved one with dementia, stroke or disability, the 24/7 caring routine often leaves no time for a break.
Denise Turner, director of Posada Life Adult Day Services, said what family caregivers need is time, advocacy and easy access to resources.
“Ideally, a family caregiver should have an advocate, someone knowledgeable about all the resources available and able to do the footwork for family caregivers. Taking care of the day-to-day tasks that the rest of us take for granted is next to impossible for family caregivers,” she said.
Many who she helps are veterans and have Parkinson’s disease. Turner said she loves to help them and feels she is making a positive difference.
What types of health situations cause a caregiver to seek respite while ensuring their loved one is in a safe and caring environment?
Alzheimer’s disease, other forms of dementia, stroke and Parkinson’s disease are leading causes for help.
About how many residents in Green Valley and Pima County are affected by Alzheimer’s disease or other dementias, and what is the ratio of men to women?
Posada Life Adult Day Services currently serves 30 clients a week and provides care for 15 a day for six and a half hours.
Turner said some “help” services assume family caregivers have the time to stop by and fill out an application or spend time on the phone setting up appointments or sitting through an interview.
“Family caregiving is not just about caring for your loved one; it’s about caring for everything, often without support,” she said.
She offered some common quotes from caregivers:
•“My husband always took care of the taxes, finances, vehicle maintenance and his own medications. Now, it’s all on me and I’m clueless.”
•“My spouse is like a shadow. I can’t get away, ever. I can’t have a moment to myself.”
•“My spouse won’t accept help from anybody but me, and I am no longer able to take care of him/her.”
•“It does me no good to wait on hold for respite services.”
Morgen Hartford, Regional Director for the Desert Southwest Chapter of the Alzheimer’s Association, said there’s an estimated 30,000 people living with dementia in Southern Arizona’s six counties — Cochise, Graham, Greenlee, Pima, Santa Cruz and Yuma.
More than two-thirds are women.
At Pima Council on Aging (PCOA) Debra Waring, Coordinator of Family Caregiver Services and Harbhajan Khalsa of Dementia Capable Southern Arizona said an estimated 20,442 people with Alzheimer’s Disease and Related Dementias (ADRD) live in Pima County. By 2029 the number is expected to be more than 29,000.
“More women than men have ADRD. Almost two-thirds of Americans with Alzheimer’s are women.
Of the 6.2 million people 65 and older with ADRD in the U.S., 3.8 million are women and 2.4 million are men, Waring and Khalsa reported.
At what point does a family caregiver realize help is needed for their loved one?
When the caregiver can’t leave the house or leave their loved one alone and has given up all their pastimes and friends, it’s time to get help.
“There’s a lot of shame and guilt by the caregiver because they feel they’re giving up on their loved one,” Turner said.
“Family caregivers often wait until their own health and well-being are compromised before they seek help.
“As reported in the Alzheimer’s Association 2021 Facts & Figures Report, dementia caregivers in Arizona face a higher burden than any other place in the country as they provide over 38 hours of care per week compared to the national average of 26 hours per week,” Hartford reported.
At PCOA, Waring and Khalsa said it’s common to hear from family caregivers who feel they may have waited too long before seeking assistance.
Family caregivers often feel alone, isolated and wait until there is a crisis before they ask for help. Often, by the time family caregivers reach out to programs such as PCOA’s Family Caregiver Support, they are exhausted, lacking sleep and unsure what steps to take next, they explained.
Family Caregiver Support offers resources, options, planning assistance, problem solving, respite services, support groups and relevant trainings. The caregiver learns he or she is not alone and the support team is there to assist.
Do caregivers often say they feel guilty for needing a break?
Turner said she hears it “all the time.”
Hartford said it’s normal for dementia caregivers to feel guilty when they need a break from caregiving.
“We encourage caregivers to be thoughtful about what they expect from themselves… Caregivers often find that they hold themselves to unreasonably high standards. By allowing themselves to recharge through respite care, they are actually making an investment in their loved one’s future.”
Waring and Khalsa at PCOA said spouses often feel it’s their job to be the only one giving care. Caring for another is valued higher than caring for oneself, so that taking a break for self-care can be misinterpreted as selfish. This is an inaccurate interpretation of what it means to take care of oneself.
Family caregivers who take care of themselves through respite, support groups and receiving other supports are better able to care for their loved one when they engage in self-care.
Have you seen resistance by the patient not wanting to come to activities or spend time with others?
“A person with dementia may make up excuses not to come to day care. The spouse leaves and we take over and say, ‘It’s so nice to see you.’ The person with dementia then puts their best foot forward for “strangers” and soon forgets the caregiver has gone.
“They became family to us,” Turner said.
Hartford said a person with dementia becomes reliant on things that are most familiar to them and often the caregiver is their lifeline.
“When leaving, caregivers may create a distraction by having their respite caregiver engage the person with dementia in an activity they enjoy. This can provide an opportunity for the family caregiver to slip away without concern,” he explained.
Waring and Khalsa at PCOA said persons with ADRD tend to experience anxiety when they are with strangers, which can be one of many triggers for resistive or fearful behaviors.
“People with ADRD often do not feel safe without familiar people, environments and routine activity… if hiring a paid caregiver, building trust and familiarity with them can be important before the family caregiver leaves for respite,” they said.
Once a person has adjusted to coming to Adult Day Care or another adult group setting what activities are enjoyed most?
Music, and emotional and physical touching, Turner said. She will often do group activities like Jeopardy asking long-term questions because their memory can often bring back facts from years or decades ago.
Hartford has seen dementia patients have different preferences with activities, yet group activities like singing, story-telling, chit-chat with others and art activities can be engaging and stimulating.
He said caregivers should tell respite caregivers important details about their loved one’s former work. If a person with dementia was formerly a CEO that person may not be interested in art activities but may thrive in a decision-making activity or a leadership role to help others.
Waring and Khalsa have seen a variety of activities that people with ADRD enjoy. They include music therapy, animal therapy, crafts, gardening, exercise, physical activity and exploring nature.
They said the main thing to keep in mind is knowing what kinds of activities they have enjoyed in the past as those activities are most likely to remain a source of pleasure.