ALS Caregiver Suggestions: My Perspective

We’re not alone on this journey through ALS. My husband, Patrick, had ALS and I cared for him throughout his illness.

As caregivers, we have the potential to burn out both emotionally and physically. My biggest piece of advice is don’t! I wore myself out, and that caused my husband more anguish.

Take care of yourself

• Get enough sleep. Figure ways to help the person you care for sleep through the night so you can too. Loss of sleep can affect both your physical stamina and your cognitive abilities. I became so tired I had trouble with third-grade math!
• Exercise. Doing something for yourself feels decadent, but a 20-minute walk around the block can release stress and refresh your soul.
• Talk. Talk therapy saved my life. Talking with someone like a counselor or a minister will help you process all the changes that affect you. Denying stress only exacerbates it and causes more problems.

Educate yourself

It’s important to be familiar with all the changes happening to you and the person you care for. By educating yourself about ALS, medical supplies, insurance coverage and finances, for example, you’ll become an informed consumer. This will help you prepare for necessary adjustments and unexpected events. By becoming an educated consumer, I was able to be a levelheaded advocate for my husband.

Ask for help

Patrick and Alison Teichgraeber with their sons, Matthew, now 10, and Justin, now 7.

Get help early. As a caregiver, you can overextend yourself.

There are ways to avoid this. Many people offered me help, and I was too proud to accept it. Finally, a friend told me, “Take the food!” I did, and twice a week neighbors and church members brought a special dinner for my kids and me. These meals would often be enough to feed a small army; the leftovers lasted all week. So say yes!

For example:

• Ask four people to mow the grass: Your friends mow only once a month and your lawn looks manicured year-round.
• Ask friends to drop off and pick up your dry cleaning when they go to the dry cleaners; that way, they aren‘t even making extra trips.
• Ask friends to pick up a few items at the grocery store when they go; you save a trip and they have the satisfaction of helping.
• Ask friends to bring photos or other “props” over to share with the person you care for. He or she can have company, and you can have a moment to yourself. I loved props; they made everyone feel more comfortable.

Stay ahead of ALS

ALS is relentless. By staying ahead of it, you have a greater chance of being prepared for the unexpected twists and turns of the disease.

• Have the person you care for use a walker before one is needed. There’s nothing worse for him or her than falling and getting stuck. My husband was once stuck on the floor for 30 minutes before I came home from work. My kids found him on the floor and they all had a good (albeit embarrassing) laugh.
• Order the wheelchair before your person with ALS needs it. It can take months to receive the chair and only one fall or the flu to suddenly need one.
• Allow time for the person you care for to adjust to the BiPAP. My husband hated it. By “practicing,” he slowly got used to his “space mask.”

ALS isn't your whole life

An ALS caregiver experiences the same challenges as the person with ALS. Each step along the ALS path can be debilitating, exhausting and overwhelming. But, it’s only part of the picture.

There’s much more to life than ALS. It’s important to pay attention to the other aspects of your life such as your children, education, and friends.

We all know life sometimes gives us lemons. By enlisting friends and family, you and the person you care for can make lemonade. One of the most challenging tasks of a caregiver is making life feel “normal.” People who aren’t used to the changes ALS produces feel uncomfortable about them, and it’s up to the caregiver to help ease this discomfort.

For visitors who feel squirmy, I suggest keeping a “chat list” list like this one:

Ways to feel less uncomfortable visiting someone with ALS

• Talk about the weather
• Talk about your kids
• Talk about sports!
• Talk about your work
• Talk about the person with ALS
• Don’t talk, just enjoy the game/movie/etc.
• Bring a friend/spouse/child

Sometimes, a visit with few words spoken is the best visit of all.

ALS can be isolating. It’s up to you to reach out to others, not only for the person you care for, but also for yourself. Although spending a third of your time on yourself, a third of your time on your family, and a third of your time on your career is probably impossible, it should be a goal. Balance is optimal.

By taking care of yourself, educating yourself, asking for help, staying ahead of ALS and not allowing ALS to be your whole life, you can be the best caregiver possible.

Alison Teichgraeber, of Houston, is a writer, advocate for the severely disabled and mother of Matthew, 10, and Justin, 7. Her husband, Patrick Teichgraeber, was a major in the Marine Corps when he received a diagnosis of ALS in 2001. He died in September 2004, at age 40.