Personal and Family Caregiving Issues

Caregivers often have complicated roles that can include love, hatred, guilt, joy and resignation. People become caregivers for different reasons, and the reasons are not always their own preferences. During my years as a hospice volunteer, I have spoken to many caregivers. They shared their stories. These are three examples from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

1) “We held a family meeting when Mom and Pops continued to deteriorate in their health. They had reached the stage where they couldn’t live alone any longer. Mom almost burned the house down, and Pops started roaming all over the neighborhood asking people where he lived. At the meeting, everybody had reasons why they couldn’t be primary caregivers. They either lived out of town or had other obligations they said interfered. Several of them mentioned that I lived in town and didn’t have as many responsibilities as they did. I don’t know how they could make assumptions like that about what’s going on in my life. I don’t tell them most of my personal business. Anyway, I finally agreed to be the primary caregiver, but only if they would all make a written commitment with me. We made a list of what everybody would do to help on a regular basis. I can truthfully say they all are doing what they promised, including contributing money to our parents’ care. Knowing I can always count on them helps me a lot and makes my parents proud of the way we are handling things.”

2) “If you look at who’s taking care of my daddy now, you wouldn’t know he had three other children besides me. The others hardly do anything for him, and I’m always asking them to help out. Before you start thinking he was a bad father when we were growing up, let me tell you he wasn’t. If you want to know the truth, he was too good to us. My trifling sisters and brothers just took him for granted. Now they know Daddy is confused with Alzheimer’s disease, so they use that as another excuse not to come see him. They figure he won’t miss them. My siblings are a disgrace. Everything is on me.”

3) “My mother was the kind of person who never should have had children. She was into drugs and the fast life for as long as I can remember. As a child, I prayed for her to change, but she never did. She left us alone a lot, even at night. Finally, my grandmother stepped up and raised my sisters and me. Bless her soul. She died six years ago. We made sure she didn’t want for anything. My mother is dying now, and I’m the only one who will go see about her. My sisters say she’s getting what she deserves for all those years she chose dope over us. I don’t judge them because I know how they feel. I’m still angry with her myself, but I come see about her anyway. I guess I want to be a better person than she is.”

Most people don’t set out to become primary caregivers. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out, except the death of persons in their care. Millions of people provide care to an ill or disabled adult. While many embrace their responsibilities and welcome the chance to serve others, there are also many who feel alone and abandoned. Caregivers all need ongoing support to be effective as caregivers and as healthy people themselves. Assistance is available from your city and state agencies. AARP assistance is available for caregivers at this website and these phone numbers: aarp.org/caregiving 

Phone: Toll-Free Nationwide: 1-877-333-5885

Toll-Free Spanish: 1-877-342-2277

International Calls: +1-202-434-3525

TTY user dial 711
    -English: 1-877-434-7598
    -Spanish: 1-866-238-9488

Hours: Monday - Friday from 7 a.m. - 11 p.m. ET

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Frances Shani Parker's Website

Unwilling, End-of-Life, Family Caregivers (Research, Video 2:29)

Let’s be honest about end-of-life caregivers. While their contributions can be significant, they don’t always choose to have that role. Some caregivers enjoy nurturing loved ones and find the experience challenging and  rewarding. But few people talk about family caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. 

Maybe unwilling caregivers were the only siblings living near the loved ones, the only relatives or friends with resources to provide care, or the only persons willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of their situations. If they had a choice, would they do it again? Some say they would not.

In a study about family caregivers and unwillingness to serve again, questions were asked about the following:

1)   Whether someone close to them died within past 5 years (25%)

2)   Relationship to the deceased

3)   Provision, intensity, and duration of care

4)   Supportive/palliative care services used

5)   Willingness to care again 

Former caregivers (9%) indicated they would be unwilling to provide care again regardless of time since the death, duration of care, education, and income.

It is interesting to note that older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. Clearly, caregiving a loved one at the end of life can have negative ramifications that need to be addressed. In this video from the National Hospice and Palliative Care Organization, Anita Brikman explains caregiver stress and how to cope with it.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog