Many individuals with Alzheimer’s or other forms of dementia are able to live alone during early stages. But as the disease progresses most require help with things such as meals, chores, paying bills, safety measures, transportation, medication reminders, personal cares, and daily contact.
Some caregivers try to coordinate help from a distance. Others provide care 24/7.
In 2016, 15 million Americans provided an estimated 18.2 billion hours of unpaid care for people with Alzheimer’s or other dementias. Thirty-five percent of these caregivers reported that their health has gotten worse due to care responsibilities.
Care Partners has been supporting caregivers for many years through a variety of classes, resource referral, respite volunteers, and groups. Caregiver Coffees provide caregivers the chance to meet with other caregivers to share resources and support each other. They meet once a month in both Grand Marais and Tofte. Care Partners Nurse Care Coordinator Marnie Hovland provides caregiver coaching and education, helping caregivers sort out their needs and goals and find ways to reduce their stress. She is also trained to assist caregivers to problem-solve around specific behavior issues common in those with mid-stage dementias.
How can you as a friend, neighbor or family member support those caring for someone with dementia? Learn more about dementia by reading, going online or attending classes. Let the caregiver know you understand and find ways to stay connected. Ask how you can help. If they hesitate, make specific suggestions (bring dinner, clean, offer rides, set up a photo album or an iPad). Offer to stay with the person with dementia or bring them on an outing so that the caregiver can take a break. Encourage them to find help.
In addition to Care Partners services, the Alzheimer’s Association provides excellent resources including a 24/7 helpline (1-800-272-3900). Recruit other friends and neighbors to provide a team of support. Volunteer for a trial study to help researchers find a cure for Alzheimer’s at www.alz.org.
In October, Care Partners invited Heidi Haley-Franklin of the Twin Cities Alzheimer’s Association to present a program on Emotional Wellness for Caregivers. She urged caregivers to recognize the feelings that may come up including grief, guilt, frustration, stress, and anxiety. Heidi stressed that it is important to acknowledge these feelings, so they don’t impair our health and relationships. Grief can be ongoing with the slow progression of the disease with many “secondary” losses, such the inability to drive any more.
Heidi shared some of the major lessons she’s learned from working with caregivers through the Alzheimer’s Association: The grief process needs to occur. It’s not easy to ask for help. Most caregivers wish they would’ve set up help sooner. Relationships can get sticky. Caregivers manage better when they recognize what can and can’t be controlled.
Acceptance is huge. It allows people to blame the disease, not the person, and to be gentle with themselves and their family and friends. It’s good to talk about the disease and know that there will be shifts in roles and responsibilities. It’s helpful to accept that no matter how dedicated a person is to be a caregiver, they also have their own needs.
Heidi’s parting advice to caregivers: “Connect, keep learning, ask for help and be specific, complete an advanced directive and have a ‘plan B.’ Awareness is important—be mindful of your thoughts. Choose to focus on the present, on whatever gives you strength or brings you gratitude.”
For more information about resources or caregiver support contact Care Partners at (218) 387-3788 or visit their website at www.carepartnersofcookcounty.org.
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