Voice of the Caregiver: ‘Hospice is a Safety Net’

Beth Peters, 85, met her husband Charles on a blind date while he was in law school at the University of Virginia. They were married a few months later after Charles graduated in 1957. Now 94, Charles Peters has entered hospice with congestive heart failure, and Beth has joined the legions of Americans who are providing care to a loved one in the home.

A U.S. Army veteran, Charles Peters helped to establish the Peace Corps in 1961 and founded the magazine The Washington Monthly in 1969. In 2001, the American Society of Magazine Editors gave him their Hall of Fame Award in recognition of his editorial achievements and enduring contributions to the magazine industry. 

Beth Peters has been caring for him in their home since he suffered a serious fall in 2015.

As of 2015, nearly 43.5 million people in the United States were providing unpaid care to a family member or friend each year, according to a 2020 report from the National Alliance for Caregiving (NAC) and AARP. The combined economic value of that care reached $470 billion in 2013, exceeding the dollars amount of paid home care and total Medicaid spending that year. By comparison, the world’s largest corporation, Wal-Mart (NYSE: WMT), earned $477 billion that year.

Family caregivers spend an average of 24.4 hours-per-week providing care. Nearly 1-in-4 caregivers spend 41 hours or more per week providing care, NAC and AARP found. This can also adversely impact their own health.

Hospice News spoke with Beth Peters about her experience as a caregiver and what families need and value from their hospice providers.

Are you comfortable sharing information about your husband’s condition and diagnosis?

He’s been diagnosed with heart failure, and his mobility is severely limited because of his leg condition. He can’t walk around and must remain seated in a chair or be in bed. With his heart condition, I’ve been told that he can survive for a fair amount of time, but he’s always in danger.

He’s said that he’s had a wonderful life, and he isn’t in any kind of discomfort or pain. I’ve come to accept that he’s at the end of his life. We’re hoping that he can have some more time, but we know that hospice care is there for us.

Before we were connected with a hospice, if anything happened I would have to call an ambulance or take him to the hospital. I didn’t want to be in a situation where I had to do that, because it’s traumatic and with his age and condition it’s not necessary. About a year ago in July somebody suggested that I get in touch with a hospice. A doctor and another person from Capital Caring Health came over and set us up, and we have been with them ever since.

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How long has he been ill, and how long have you been caring for him in your home?

He had a bad fall in 2015. He tripped outside our house, hit his head on a rock and broke four ribs. He had a severe head wound. That was a major turning point. Then he developed problems with his heart and contingent problems with his breathing. Since that time, he’s been steadily losing ground health-wise, but it’s been very gradual.

I had been taking care of him. About the time hospice intervened, I realized I couldn’t do the round-the-clock care anymore. I needed more and more care. I have caregivers every day now from an outstanding agency, Family & Nursing Care in Maryland. They have four caregivers who come at various times. It was very hard for me when I was trying to do it by myself.

I think it’s working out as well as they expected. He’s mainly comfortable, and his mind is clear as a bell. That is always what kept him going. The fact that he’s physically very frail is not such a big thing for him as long as his mind works well.

How would you describe your experience as a caregiver?

I felt this scary responsibility before hospice got involved. Before he fell [in 2015], he had pneumonia. All I could think to do was call an ambulance, and they rightly took him to the hospital. But it left me with this sense that the great burden was on me. I wondered what the heck I would do if there were a fall down the stairs or a serious illness.

Now I can call the hospice. There was a night when something was wrong and I called. They sent a nurse over late in the evening, and it turns out she was able to deal with it. That’s the difference. That would have been a situation where I would have not known what to do.

We don’t have any family in this area. They’re all in California, so I really don’t have any support system except hospice care. At 85, I’m trying very hard to keep myself in very good physical condition so that I can cope and physically do whatever is needed.

As long as I have the combination of the hospice and the caregivers, I’m not panicking anymore. I feel my husband is taken care of as well as he possibly could be. I wasn’t so sure that I could provide him with enough care by myself for extended periods. That wouldn’t have worked.

I’m clearly sad that he doesn’t have long to live, but I feel that he’s in the best possible circumstances for the end of his life. He’s not unhappy. He loves life and would like to be here longer, but his experience now is a positive one.

Can you talk about the support you’ve received from your hospice provider?

They’re so valuable. They have medical people and wonderful nurses that come anytime I ask them as well as their regular visits to check up on him. Every couple of months, the hospice doctor comes in to do an evaluation.

My husband has a personal doctor, but that’s not the person I would call in an emergency. It’s a different kind of feeling to have this team and to know that they’re going to respond to you anytime you try to get in touch with them. That’s the main thing about hospice care: They’re there. They come immediately if they think the situation requires it. If I am very anxious and I want to talk to a medical professional, they respond to that.

When you have a loved one who’s had a lot of health issues and is dying, it’s good to have that safety net. I won’t crash, because I know it’s there.

Is there anything that you feel needs to change regarding the ways that the larger health care system supports family caregivers?

In the regular health care system, they don’t usually come in an emergency. Most people’s doctors would tell you to go to the hospital. They wouldn’t run over to help, whereas hospice care does.

I think that in the regular health care system, you can’t expect anybody to come and give you help if you’re just worried, or if your loved one or yourself were not feeling well. You have to go to them; they don’t come to you. I wouldn’t feel comfortable calling most doctors to come and support me in some way, but I feel comfortable calling the hospice.

Were there any aspects of hospice care that took you by surprise or that you didn’t expect?

The reality of my experience of care is much different than what I thought it would be. I’ve learned that they supply care over a period of time when it seems pretty clear that someone is medically declining. My husband has been receiving this care for a year and a half. My sense is now there are a few months left now at best.

I always thought hospice care was a situation where your loved one was actually on his or her deathbed, didn’t have much time left and they rushed over and gave them a lot of painkillers or narcotics. I thought they came in at the last minute, the last day or couple of days.