By Beth Lawrence

 

There are 358,000 people across North Carolina providing care for someone with Alzheimer’s or dementia. November is set aside to recognize the often demanding labors of love these people perform.

In 2020 nursing provided by family and friends accounted for approximately 517 million hours, an average of 92 hours monthly, of unpaid healthcare for North Carolinians, according to the Alzheimer’s Association. Those 517 million hours amounted to $7.3 billion worth of healthcare.

“The demands of being a caregiver, particularly for someone with dementia or Alzheimer’s, is really just all-encompassing,” said Denise Young, Alzheimer’s Association program manager. “That becomes your day-to-day life.”

Friends, family and other unpaid volunteers account for 83 percent of the assistance older people receive in the United States, and 48 percent of those are taking care of someone with Alzheimer’s or dementia.

Caring for a terminally ill or dependent elderly person is time consuming, and overwhelming particularly if that person has Alzheimer’s. Such care requires time, physical and mental labor, and sometimes a financial commitment.

“As the disease progresses, those responsibilities increase more and more as time goes by,” Young said. “And the person with dementia normally becomes very attached to whoever their caregiver is, to the point that … they don’t want you to be out of their sight. It can become so overwhelming for a caregiver to be with that 24 hours a day. That’s the reason having some respite care is so important for a caregiver.”

Respite care can mean bringing in professional caregivers, friends or family to sit with the patient, or organized adult day programs.

A caregiver’s daily life is demanding. They are responsible for more than offering medication and preparing meals. Caring for someone with Alzheimer’s can include taking care of all aspects of an individual’s life from morning routines such as waking them, helping them brush their teeth and get dressed to planning activities throughout the day along with managing their healthcare and other aspects of life such as housework and finances.

“It’s not just laying their clothes out, but as the disease progresses, you actually have to help them get dressed,” Young said. “You have to help them go to the bathroom; you have to help them eat. It’s a 24 hour a day job.”

Time is even spent mitigating and managing symptoms such as keeping the house well-lit in the evening to prevent sundowning (worsening of confusion in the evening) or making sure windows are covered to prevent a patient being startled by reflections.

Patients often resist assistance because they still want to perform tasks themselves, tasks they may no longer be able to perform properly.

On top of daily care routines, the caregiver is watching someone they love decline physically and mentally.

“This is a person that is becoming somebody completely different from the person that you’ve always known them to be,” Young said. “That in and of itself is more stress than most people would be able to handle, but on top of that you’ve got to learn all these new processes of being able to help them just live their day to day life.”

The best thing those not directly involved in care can do is to educate themselves about the disease, how it progresses and what symptoms and behaviors someone with Alzheimer’s might experience. Learning more helps others understand what the patient is suffering and what the caregiver faces. It also helps to understand the caregiver’s decision to bring in outside help or place the patient in a healthcare facility.

“At some point with this disease, most people will not be able to be cared for at home by a single caregiver,” Young said. “They will require more care than a single caregiver at home will be able to give them.”

Providing such rigorous care can be isolating, exhausting and overwhelming. It is important for caregivers to take care of themselves both physically and mentally.

“There’s so many things the caregiver has to think about,” Young said. “That respite care becomes so important for them because it can actually start affecting the health of the caregiver being in that environment 24 hours a day.”

It can be tempting to use free time to run errands, but it is important that the caregiver focus on themselves.

Selfcare like taking a bath, taking a walk or reading a book gives the caregiver time to focus on their needs and mentally regroup 

It is easy for a caregiver to become “possessive” of a patient’s care, thinking no one else can care for their family member the way they can making it hard to accept help, but that is unhealthy behavior, Young said.

Caregivers often don’t realize the stress they feel until they are out of the situation for a while. They may realize later how crucial time for selfcare is.

Experiencing life outside of patient care such as social activities and hobbies helps caregivers when it is time to move on with their lives.

“At some point the person they’re caring for is going to pass away,” Young said. “What we often see with caregivers that have not had respite care and have been living in that caregiving environment for sometimes years, when the person passes away, they don’t know what to do with themselves because they have lost themselves in that caregiving role. They’ve almost forgotten who they were before they started taking on this role.”

Finding a support group is important, particularly if the support group is specific to the patient’s illness.

To find educational resources and support, visit alz.org/northcarolina or call 800-272-3900.