Voices of Care

My husband, John, was diagnosed with ALS (amyotrophic lateral sclerosis) five years ago. Six months later, he retired from his job as a financial advisor, and I became his primary caregiver. Previously, I worked as a hospice volunteer coordinator in Illinois, so I knew a bit about dealing with a serious illness.

Now, caregiving is my 24/7 job and it can be exhausting. It requires a lot of work, patience, and assistance. In recognition of National Family Caregivers Month, I’d like to share four tips to help others who are caring for someone with a serious illness:

Don’t be afraid to reach out for help, and cast a wide net – When John was diagnosed with ALS, I knew what the disease was, but I didn’t know the agencies that were available to help. I went to an informational meeting of the ALS Association, which connected me to several agencies that helped with home modifications and other resources. North Shore Elder Services coordinated home health care before John qualified for hospice.

Even though many families have members who want to help care for their loved one, they often have to work to keep their households running. Their time is limited, so networking is a great way to find resources that can help. Often when I go to an ALS meeting and see a new caregiver, I can tell they’re worried about whether they’ll be able to afford everything their loved one needs. So I pass along info that has helped me and John – like loan closets for medical equipment.

Another good network we tapped into is our church. By asking for assistance from your congregation, you’re giving them a gift because they are looking for ways to help others. There’s always someone who’s willing to help, and making connections can open new doors.
  Make time for yourself – Caring for someone 24/7 takes a lot out of you. It’s important to have a little “me time” every day. It may be harder than it sounds, but you have to be committed to it, which is why you cannot be afraid to ask for help (see #1). For example, when Moses (a Care Dimensions hospice aide) visits from 12:30 to 2 p.m., I know I have that time to go out and run errands, get my nails done, or attend a fitness class. Sometimes, we can schedule Nancy (a Care Dimensions massage therapist) just before Moses, so that gives me an even bigger block of time for myself. I know I am leaving John in good hands, so it’s a good mental break.

Try to find something to laugh about – I couldn’t be a full-time caregiver without a sense of humor. So, John and I still joke around and try to make each other laugh. We take each day as it comes. I love watching reruns of “The Golden Girls” and “Seinfeld” – they’re still funny. It also helps to have some goofy people in our lives from time to time.

Be open to hospice – I understand that people are reluctant to use hospice and maybe even afraid of it. But dealing with a serious illness is a lot of work, and the Care Dimensions hospice team has put a great system in place for John. We kind of fell into it last year when we discovered that John’s physical therapist had a daughter who swam with the daughter of a Care Dimensions physician. The doctor came to our home for a palliative care consultation and determined that John qualified for hospice.

Hospice has made such a difference in our lives, and we are so grateful for the help. Our hospice team really feels like family to us. Everyone is so professional and kind. We never feel like we’re alone – I know that help is only a phone call away, even on weekends. Having a caring and supportive system in place not only gives John the help he needs to make the most of each day, it gives me peace of mind and eases stress. For a full-time caregiver, that’s priceless.

Learn about Care Dimensions’ caregiver support resources: https://www.caredimensions.org/education-and-resources/patients-and-families.cfm.