The emotional cost of caring for a loved one with Alzheimer’s disease

Key points

  • Caring for a loved one with Alzheimer’s disease can be an isolated journey that is physically and emotionally burdensome.
  • Finding people with common experience, forming a care team and spending time on self-care can help prevent burnout.

Alzheimer’s disease is a kind of dementia that destroys memory and other important mental functions. It is an unforgivable disease and unfortunately, there is no cure. It can be very painful to observe its progress in a loved one.

As a labor of love, friends or family members often voluntarily assume the role of caregiver. But this may cost the individual providing care.

An Associated Press-NORC Public Affairs Research Center survey found that nearly half of long-term care workers not only run errands and drive to see a doctor, but also perform medical care, such as changing catheters or inserting feeding tubes. Less than half of these people reported receiving training for these tasks.

This kind of work can bring pressure and requirements, especially for people who lack experience or are not well prepared.

Emotional influence

Nursing is not only a physical challenge, but also an emotional challenge. LMSW psychotherapist Idil Ozturk said that carers are usually family members or friends who are responsible for managing their complex feelings about people and diagnosis.

When a loved one receives a diagnosis of Alzheimer’s, it can be devastating. Feelings of fear, sadness, and anger in this situation may bubble up. Ozturk pointed out that anticipatory grief is also very common, which occurs when the grief process begins before the diagnosed person dies.

Papa Christine, LCSW

It is important to remember that we all need support.

— Kristin Papa, LCSW

Being a caregiver increases the complexity of the situation in the form of exhaustion and irritability, which can damage mental health over time. The Associated Press survey found that caregivers of patients with Alzheimer’s and other diseases that affect their mental state bear more stress and grief than caregivers of patients with other diseases. Research shows that depression and anxiety are common.

Ozturk said that by understanding the symptoms of this disease, you will better understand what happens and how to respond. This way you can more easily avoid pain and depression.

“If a person with Alzheimer’s disease says,’Where am I? I want to go home!’ They may try to express that they are uncomfortable,” Ozturk said. “Instead of saying frustratedly,’We’re home!’ Try to ask them if they need something, is it too hot or too cold? Are they hungry or tired?”

People with Alzheimer’s disease are sometimes prone to exhibit aggressive and irritable behaviors, which can make them feel hurt and frustrated. However, redefining this behavior as a brain malfunction rather than an aggression can help caregivers avoid resentment or overly personal comments or behaviors.

Use care team

Care may be isolated because it requires time and energy. Inability to leave your loved one alone or to deal with low energy levels at the end of the day can lead to social isolation and worsen mental health. It’s important to ask for help.

“It is important to remember that we all need support,” said Kristin Papa of LCSW. “Many of us find it difficult to seek help even when our lives are fulfilling. It is important to practice self-compassion, to be aware of when we are stressed and overwhelmed, and to seek and accept other family members, friends or community members s help. ”

Kristen Osterhoudt, Alzheimer’s Disease Caregiver Support Program

Nursing staff usually wait until they are completely exhausted before seeking help.

— Kristen Osterhoudt, Alzheimer’s Disease Caregiver Support Program

The support group can be very helpful. By joining the community or chatting with other communities who have experienced the same experience, you can not only understand the symptoms and progression of the disease, but you can also gain insights into dealing with more challenging behaviors.

Building a strong nursing team and/or using temporary services can reduce a person’s burden of nursing. Kristen Osterhoudt, Regional Coordinator of Education and Training Services for the Alzheimer’s Care Staff Support Program, recommends making a list of needs, such as planning doctor appointments, medication management, housekeeping, grocery and meal preparation, and then assigning these tasks to the team.

“Usually caregivers wait until they are completely exhausted before seeking help,” Osterhout said. “Don’t wait. Reach out and get the help you need to take care of yourself and yourself.”

When it comes to the people we love, it’s easy to take on too much, but boundaries are important. Although the health and safety of this person may be your top priority, it is important to remember that they are not the only people who need and deserve attention.

Make time for self-care

Dr. Kathy Nickerson, a licensed clinical psychologist, served as his caregiver for eight years when her father was battling Parkinson’s disease and dementia. Although she admitted that it was difficult, she was happy to provide him with the hospice care she hoped everyone could get. For this reason, practicing self-care is absolutely necessary.

“If you don’t take care of yourself, you can’t take care of other people,” Nixon said. “Even if it feels easy to be a caregiver now, slow down and adjust your pace. This is a marathon, not a sprint.”

Casey Nixon

If you do not take care of yourself, you cannot take care of other people. Even if it feels easy to be a caregiver now, slow down and adjust your rhythm. This is a marathon, not a sprint.

— Dr. Casey Nixon

She recommends taking a break and making time for activities that will help you recharge, whether it’s meditation, exercise, reading a book or a day trip. It is also important to make time to rest, eat well, and see a doctor.

It can be difficult to distinguish your role as a caregiver from your normal role in their lives, so it is important to continue to find ways to enjoy the relationship with this person. This may be through meaningful activities such as gardening or listening to music.

“This is a very difficult, messy and often thankless job,” Nixon said. “Remind yourself why you want to give this gift and look for the bright spot. When your loved one connects with you, there will be beautiful moments mixed with ordinary and clear moments. Focus on what you can be grateful for and focus on Today, right now.”

What this means to you

If you take good care of yourself, you can provide enough care for your loved ones with Alzheimer’s disease.