By Deborah Jeanne Sergeant
Caring for a relative with Alzheimer’s or another form of dementia takes an increasing amount of sacrifice, especially as the disease progresses.
Often described as “caregiving creep,” the support can begin even before sharing a dwelling.
Future dementia patients may need help with “confusing” documents previously handled with ease. Navigating their usual stores becomes taxing, so a relative helps with shopping or sets up automated delivery. They become addled when using formerly familiar appliances or equipment.
As the disease progresses on its mission of debilitation, patients require more help. However, it’s not always linear. Some days they may seem nearly like themselves for short periods. On other days, they need significantly more help. Occasionally a forgotten skill or slipped memory comes back for a time. But most often, the skill or memory is gone for good. Some patients become combative as frustration mounts with their own disability. Many people experience shifts in mood and personality and a lack of inhibition.
The degression in skills and behavioral changes adds stress to the caregiver role. The “sandwich generation” feels an especially big challenge in that they’re still raising their own children while caring for an older relative. Members of the sandwich generation are typically in their mid-40s through 50s and juggling all of this care while at the busiest point in their career and trying to prepare for retirement. Seeking help through outside organizations can make a big difference between burnout and providing quality family care.
Phil Shippers, a program director at the Alzheimer’s Association Rochester Finger Lakes Chapter, was a caregiver for his parents and has been working with the Alzheimer’s Association for a few years.
“People are overwhelmed,” Shippers said. “They face new challenges every day. Joining a support network they learn that there are others going through the same thing. It’s a safe place to ask questions and get support. People can get affirmation. They know someone understands.”
Doing it alone can feel depressing and isolating, especially since friends who have not cared for a person with dementia do not understand. It can be difficult to take the loved one places because of behavioral problems and increasing medical needs. This factor causes further isolation.
“It’s easy to get into a downward spiral,” Shippers said. “You can get perspective by joining a group. You can also get information, such as learning to change your expectations. A ‘good day’ can be just eating, taking medication and watching TV. I’m a big fan of support groups.”
He added that the Alzheimer’s Association can help people find informational resources and local help. A local organization that Shippers recommends is Lifespan. The Alzheimer’s Association also provides information on its website, www.alz.org, and operates a 24/7 tip line staffed by master-level clinicians.
“We have social workers on our staff who do care consultation to prioritize what we need to do first,” Shippers said. “We’re not one-and-done.”
Seeking help in caring for a loved one can lighten the load. Sometimes it’s as simple as asking a friend or family member who has offered, “Call if you need anything.” Spending a few hours playing a game and sharing a meal can give caregivers a much-needed break.
Adult day programs can keep a watchful eye on patients who don’t have significant impairment but still should not be left alone. As the name indicates, it’s a daytime program that congregates adults who need care. Most provide a meal and snacks and offer mental stimulation. This can be a good choice for families whose loved one is still stable and could benefit from getting out of the house more. It can also enable the caregiver to continue working.
Medical day programs are a subset of adult day programs. These provide more help for people with memory care needs, disabilities or more complex needs. Some insurers cover this care.
Home health companies can provide care from aides ranging from companion care (which includes mental stimulation, medication reminders and light housekeeping) to more medically oriented care for patients with more challenges. Agencies typically charge by the hour and require a minimum number of hours per visit, usually four. This can be a good option for scheduling periodic breaks to recharge and spend time away from home. However, insurance doesn’t cover this type of care unless the patient has long-term care insurance. Most insurance companies no longer provide long-term care insurance in New York.
Some well-qualified home health aides work independently and charge far less than home health companies. However, it’s up to families to vet and screen them to ensure they’re insured, qualified and a good fit with their family member. Long-term care insurance typically covers only aides who work through a company.
Respite care at a nursing home can offer short-term stays for family caregivers who want more extended time away. This is a good option for a loved one with medical needs.
Alzheimer’s Association operates a 24/7 helpline (800-272-3900) and provides copious information at www.alz.org.