You’re the caregiver. That means you can never get sick, never get injured and otherwise never miss a beat. Or so you may tell yourself. If you alone handle the care of a loved one with dementia, building strong support early on is in order, according to an expert on caring for people living with Alzheimer’s disease.
“So many caregivers tend to put their own needs to the side because they want to be able to do everything,” said Monica Moreno, senior director of care and support at the Alzheimer’s Association. “It’s really hard for people in general—whether you’re an Alzheimer’s caregiver or not—to ask for help. People think, ‘Well, if I have to ask for help, it means I’m not doing a good enough job.’ That’s not the case, especially when you’re dealing with a disease that’s progressive, and as it continues to progress, the caregiver is going to have to take on more and more responsibilities.”
It’s imperative to plan ahead for help, Moreno said. She offered the following tips to make sure you have the support and knowledge you need should something unexpected interrupt your ability to care for your loved one:
Educate yourself
“There’s no guidebook a caregiver can open up and say, ‘Okay, my family member is in this stage of the disease, and these are the symptoms, and now I know what’s going to come next.’ You’re really kind of learning as you’re going because the disease affects everyone differently. The first thing, especially for caregivers who are new to this, is to get educated. Learn about what’s to come and what are the things that they need to do to start planning.”
Create a care team
“It’s important very early on to create a care team. As the disease progresses, having a care team around helps to support that caregiver in the event that they get sick or need respite. Caregivers need to take time to take care of themselves, whether it’s just to go off to have lunch with friends or to keep their annual appointments with their doctors. Then this team is already in place as those needs continue to increase.
“Maybe there’s one family member who can manage medical appointments. Maybe there’s someone who can handle prescriptions. Maybe there’s someone who’s willing to spend time with the person living with dementia, if even for a short period of time. Do they know the person and what their likes and dislikes are? Do they know what some triggers might be for dementia-related behaviors? Do they know the medications that they’re taking? These are all things we want caregivers to think on before something happens, so that they can be proactive versus reactive. These individuals can step in to help remove some responsibilities and help that caregiver still be productive and successful but not have to feel like they have the whole world on their shoulders.”
Get familiar with resources
“For caregivers of those who are living with dementia, it’s not a 9 to 5 job—it’s 24 hours a day. Caregivers for individuals who are living with Alzheimer’s or another dementia tend to use services such as home care more frequently than do caregivers of someone without a cognitive impairment. So, it’s really important to understand what are the resources that are available in their communities? What types of potential funding may be available, like respite grants to help fund those services to come into the home to help with housekeeping or cooking, or even just spending time with the individual so that the caregiver can get that respite?”
The Alzheimer’s Association has a 24/7 Helpline (800-272-3900), as well as its Community Resource Finder, offered in collaboration with AARP.
Take safety measures
“There may be an opportunity to reach out to a physical therapist to come into the home to determine where there might be some safety issues and provide recommendations. That could be simple things like remove throw rugs. It may be adding grab bars to the bathtub or toilet. There are belts that caregivers can use to hold onto the person as they’re walking around the home.”
Accept the changes
“Part of the education process is to really accept the changes. Recognize that as those care needs become greater, there is an opportunity to be able to leverage those resources and services so that you can continue to be the primary caregiver but have the support you need. We know that caregivers are doing the best they can, and they have to be gentle with themselves. If one day doesn’t go as well as they’d like, it’s okay. Just move on and do better the next day.”
The Alzheimer’s Association also provides guidance on:
Caregiver Information Resources: alz.org/care
Caregiver Health: alz.org/help-support/caregiving/caregiver-health/be_a_healthy_caregiver
Caregiver Stress & Tips to Manage Stress: alz.org/help-support/caregiving/caregiver-health/caregiver-stress
