As our population ages, the number of people with Alzheimer’s disease is soaring. Today, one out of every nine people over 65 has the condition, according to the Alzheimer’s Association.
There are more than 9.9 million people caring for someone who has Alzheimer’s — spouses, children, family members, and friends. These are people who give their time with no pay, many making extraordinary sacrifices in order to care for their loved one. It’s a demanding and stressful task.
We spoke with Dr. Elizabeth Edgerly about the challenges caregivers face, and what tools they can use to weather the ups and downs. Dr. Edgerly is chief program officer of the Northern California and Northern Nevada Chapter of the Alzheimer’s Association.
It can be difficult to deal with a friend or loved one who is experiencing memory loss or a diminished ability to process information — key symptoms of Alzheimer’s disease. As caregiver, you may find yourself having to repeat questions or re-explain earlier discussions, sometimes many times over. Naturally, this can be frustrating.
“You find yourself saying and doing things you never expected when dealing with a parent or spouse who has cognitive difficulties,” says Dr. Edgerly. “Not everyone is ideally suited to it.”
Keep in mind, though, that the person you’re caring for truly doesn’t have the ability to remember things. Very often, they’re more frustrated than you are.
“Alzheimer’s is such an individual disease,” says Dr. Edgerly. “You have to be able to act very flexibly.”
As the disease progresses, people with Alzheimer’s require more and more help with daily tasks, such as bathing, dressing, and eating. These tasks are made more difficult if the person is confused or agitated. But if you put on your thinking cap, you can find solutions that make these obstacles manageable. For example, if they’re upset or getting agitated, look for pleasant distractions. These could be as simple as music, looking at old photos, or having them help you with a simple task.
Being a caregiver requires physical and emotional stamina. “You have to manage the highs and lows. You can be pleased when things go well but prepared for the next challenge,” says Dr. Edgerly.
Although it can be difficult at times, make sure you are eating a well-rounded diet.]
A Gallup survey found that 55 percent of caregivers report that they’ve been providing care for three years or more. Then there’s the immediate need for stamina in managing the daily tasks of caring for an individual who increasingly needs more help.
“I think of it as a marathon, not a short distance race,” says Dr. Edgerly. “Along the way, you’ll address different issues and barriers. So you have to have the stamina to make it through.”
It’s important for you to take care of both your physical and mental well-being. That means everything from making sure you’re on top of your own medical and dental care, to eating right and taking time for yourself.
“Money, caregiving, and Alzheimer’s… each are difficult topics in themselves. In this case, we’re talking about all three together,” says Dr. Edgerly.
Often, more than one family member is involved in making decisions on behalf of a parent or spouse who has Alzheimer’s. Decisions include:
- Is it time for our loved one to stop driving, and who’s going to tell them?
- How do we tell our loved one that we have concerns?
- What level of care is needed?
- What services can we afford?
- Who will be responsible for what portion of care?
It’s important to make one decision at a time. You don’t have to make a roadmap for the future in a marathon session. If tensions threaten the decision-making process, seek the intervention of a social worker, a clergy member, or a trusted friend.
Dr. Edgerly reminds us that joyfulness is part of being a caregiver.
“What’s not talked about enough is the joy and positive feelings people get from being a caregiver. We tend to talk more about how stressful and difficult caregiving is,” she says.
“But when we talk to caregivers, many feel really good that they’re able to do this for someone they love.”
Get the Support You Need
Having support is absolutely crucial for caregivers. “I meet many caregivers who are so strong and think they don’t need anyone else,” says Dr. Edgerly. “But it’s impossible and unnecessary to go it alone.” Fortunately, there are many resources for caregivers, including: