Caring for a family member means also caring for yourself

Elizabeth Mulvaney, MSW, LCSW

Healthcare | Stories | Nov 20, 2017

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. This is the first in a two-part series.

With Thanksgiving a few days away, reminders to be grateful are everywhere — radio commercials on the drive to work, cheerful signs in the grocery store, television ads, messages that pop up on our Facebook feeds.

But for those of us caring for family members with physical and mental illnesses, gratitude can be tangled with other emotions. Feeling sad, frustrated, or upset when you are a caregiver is common. I’ve been there too.

I’ve experienced this with my own family, specifically, my father. In addition to being a caregiver, I’m also a geriatric social worker who works with people impacted by Alzheimer’s disease. I want you to know that there is support for what you are going through.

On one particularly memorable Thanksgiving, my to-do list included getting a turkey, preparing the guest room, and convincing my dad to take a bath — after a  month without one.

The day turned into one of tears, anger, and an empty chair at the Thanksgiving dinner table because my dad, who had Alzheimer’s disease, simply would not take a bath and join us for the holiday meal.

He wasn’t upset for long, nor did he think he had missed anything. The next morning, he woke up and took a shower as if Thanksgiving — never mind the argument — had never happened.

Yet we all knew that it had and felt the heaviness and sadness of the day.

This is a familiar story for anyone caring for a family member while they are living with a condition like Alzheimer’s disease. We watch as our loved one’s mind and body progressively deteriorates and we have no control over it, despite doing everything in our power to alleviate their suffering.

We are constantly stretched thin as we manage their care, work with their providers, and plan for the future. This is on top of juggling our own lives and responsibilities of work, being a spouse, parent, and friend. At times, it may seem easier to compartmentalize the impact of the situation on our own emotions and day-to-day life.

Here’s a difficult truth: we cannot be the best possible caregivers if we do not take care of ourselves first.

As I cared for my dad along with my mom and siblings,  none of us were formally assessed for mental health needs related to caregiver burden. Beyond the offhand mention from my dad’s care team that everything “seemed to be taking a toll on us, ” we were not offered recommendations for services that would support our own mental health or ease the strain on us.

Unfortunately, this is a common experience among the more than 43.5 million people in this country who are in a caregiving role this year.  Family caregivers have a significantly increased risk for mental health conditions — as many as 40 to 70 percent have clinical symptoms of depression.

If you are not healthy yourself — and that absolutely includes your mental health — being a caregiver becomes even more difficult.

Caregivers tend to put a strong face forward despite facing their own mental health challenges. Providers should consistently use assessment tools to screen for depression and caregiver burden.

If you are caring for a family member, ask about support resources. Social support and resources for caregivers have been shown to decrease the impact of emotional, physical, and financial stressors.

For me, it was helpful when nurses would check in on me when I was at the hospital with my dad — but it wasn’t enough. Here are the options I recommend to my patients — one or a combination may work best for you:

Seek support from family and friends. They want to help you. They want to be there for you. They just may not know how, so they’ll often wait for you to come to them. It’s ok to ask for help.

Join a formal peer or group support network. Connections to such networks provide caregivers a safe place to discuss stresses and challenges with fellow caregivers. Find local support here.

Connect with a therapist. Talking to someone like me, who specializes in support for caregivers, can equip you with tools to help  manage your own stress levels and mediate the impact of caregiving on your health. A counselor is typically on staff in home health care programs, community-based programs, hospices, and rehab centers.

You can also seek help from a therapist outside of the program. If your doctor works with Quartet, ask them to connect you to care this way. Quartet can help connect you with a local mental health provider that can best support you. If your doctor does not yet work with a company like Quartet, you can contact your insurance company for mental health providers in your area.

The bottom line: don’t hesitate to ask for help. Reach out to friends, join a community group, find a therapist with whom you feel a connection Support is available, and you are not alone.

Elizabeth Mulvaney, MSW, LCSW is a Lecturer on the faculty of the University of Pittsburgh’s School of Social Work and was a former coordinator of the Hartford Partnership Program for Aging Education (HPPAE).  Her clinical experience includes eight years in long-term care, with an emphasis on working primarily with persons who have dementia and their families. Her work has included behavioral care planning related to dementia and depression, end of life care planning, and provision of family support, including facilitation of a family caregiver support group. Most importantly, Ms. Mulvaney, with her siblings, is a family caregiver for her mother along with a fantastic team of professionals.

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