What I Learned From Being on the Other Side

I don’t post about my personal life on the blog, since my goal is to give you the information you need to make the right medical choices for yourself or your loved ones.

But today I want to talk about something personal that can also help you with necessary, but often painful, decisions. A week ago, my granddad passed away. He was 90 years old.

Although I’ve been working in senior health care for a while, experiencing my grandfather’s terminal illness and death was the first time I was on the other side. For the first time, I was the family member facing fear and grief. And while I wasn’t the one making medical decisions, I did support my mom throughout the ordeal.

Our family dealt with the full range of issues facing caregivers: serious terminal illness, deteriorating health, ambulance transports, extended hospital stays, nursing home admissions, hospice care, and finally, funeral homes.

Here is what I learned from the experience, and I hope it can help some of our readers who find themselves in a similar situation.

1. Remember to say “I love you.”

In a way, our family was fortunate that Grandpa’s death was a gradual process. We were able to come together, bring up the things we never had the courage to talk about before, and say our goodbyes. We had the time to ask him forgiveness, to tell him we loved him, to receive his blessings.

Not everyone has that opportunity. Some people lose their loved ones in an instant to a heart attack or stroke. Others might still be with their parents physically, but their parents no longer recognize them. Don’t wait to tell the people close to you how much they mean to you.

2. Everyone grieves differently.

And that’s okay. We don’t all have to mourn the same way. Don’t make a family member feel bad for “not being sad enough.” And the reverse is true as well—some people just need to cry until they feel better. And others just need to laugh to help through their grief.

The main thing is to process the grief and not to let it come out in unhealthy ways, such as drinking or binge-eating.

3. Signing a DNR can be traumatic.

At some point in your loved one’s illness, you may realize that signing a DNR is the best thing you can do for them. It may even be something they themselves requested. Even if it was always on the table, actually signing an order not to resuscitate your loved one can be wrenching. My mom said later that it felt like signing her father’s death warrant.

When you know you’re going to sign the order, prepare yourself in advance. Practice deep breathing and use positive affirmations to help you through the process. You may want to repeat a statement like, “I am doing what’s best for my spouse/dad/mom” until you feel strong enough to sign the paper.

4. Don’t underestimate the power of a support group.

All caregiving children should join a support group for family caregivers. Members of support groups provide emotional support and valuable advice to each other. Having people who know what you’re going through hold your hand throughout your journey is a tremendous help when you’re dealing with a sick parent.

My mom is part of an incredible group of devoted caregivers who meet weekly to support each other. They carried her through my grandfather’s last days, and now that she’s emerged in one piece, she can give back to others in the same situation.

5. Consider palliative care or hospice early on.

Palliative care and hospice care are two sides of the same coin. They both focus on easing the patient’s pain and helping them stay as comfortable as possible. The main difference between them is that palliative care provides pain relief and symptom management in conjunction with treatments, and hospice care stops treatment and focuses on dying with dignity.

Consider these options soon after diagnosis of a terminal illness, so the patient has the best chance of living out his last days at home or his long-term care facility, in comfort and dignity.