In light of the recent deaths of Gene Hackman and his wife Betsy Arakawa, and the commentary by Bruce Willis’ wife Emma Hemming Willis, it seems appropriate to talk about the need for caregivers to get care for themselves too. As anyone caring for an ill spouse or friend can tell you, caregiving takes it out of you. It is normal for caregivers to postpone their own medical treatment, lose weight and appetite, and generally put off their own needs in order to take care of a loved one.
In the community of aging residents where I live, I helped some friends start a support group for caregivers. We all had different experiences of caregiving, but the stress of doing it well could not be denied.
Whether you’re caring for a family member with a chronic illness, disability, or aging-related issues, it can often feel overwhelming. Here’s a deeper look at some of the key aspects of caregiving:
1. Physical Demands
Caregiving often requires physically strenuous tasks, such as assisting with mobility, personal hygiene, or administering medications. These responsibilities can lead to caregiver fatigue, as the physical strain can take a toll on the caregiver’s health. I know that trying to pull my husband out of a chair was hard on my back, but he needed to move and I didn’t have any help in the beginning stages of his disability.
2. Emotional Strain
Watching a loved one go through health challenges can be emotionally taxing. Caregivers may feel sadness, helplessness, and anxiety. They might also experience feelings of guilt, especially if they feel they are unable to provide the level of care their loved one deserves. There are many times when a caregiver can feel frustrated and even lash out at their partner for not trying hard enough or stubbornly refusing medication or assistance. It’s important for caregivers to give themselves a break from feeling guilty. Yes, you will be angry. Yes, you may say things you wish you had not, but you’re human not a saint.
3. Isolation
Caregivers can experience social isolation as they may have limited time for friends, hobbies, or social activities. This can contribute to feelings of loneliness, as the primary focus becomes on the care recipient. This is the point when joining a group — or convening a group– becomes crucial. Just being able to listen to and respond to others with the same experiences is beneficial. There are no easy answers, but it is helpful to know others are going through the same thing. Groups also offer resources to share — one person may have solved the problem of getting their spouse to take their meds, and sharing that solution can help others in the group as well.
4. Financial Impact
Caregiving often involves extra costs. This can include medical expenses, assistive devices, or modifications to the home, and sometimes caregivers may have to reduce work hours or even quit their jobs to provide care. This can cause significant financial stress. There are a variety of resources to help caregivers — social services in the community, churches, accountants, financial advisors. All of these resources can help the caregiver figure out how to deal with the added cost of getting the help that is needed. But sometimes there isn’t even enough time to look for help.
5. Loss of Personal Time
Caregivers can feel as though they have no time for themselves. Personal interests, rest, and even basic self-care may fall to the side as the focus is entirely on the person being cared for. I remember struggling to find the time to get my hair cut, because it involved being away for an hour or two. In those hours, my spouse could fall and I wouldn’t be there to help. Respite care is sometimes available through health insurance or even friends or family, but for most caregivers respite is infrequent and sometimes impossible to obtain. Going out to lunch with a friend? What a concept! Being able to shop for something you can’t get online? Seeing a movie in a theater? These all seem impossible when you are a caregiver, but even doing something once a month can be beneficial.
6. Role Reversal
For those caring for aging parents or relatives, the role reversal can be emotionally complex. It can feel unnatural or difficult to take on the responsibility of caring for someone who once took care of you. This role reversal in marital relationships can also be stressful. Your spouse was the one who did the taxes or took care of car insurance. Now you need to do that. He or she may resent not being control and that resentment can fester and grow. When you find yourself in a situation where you are doing an increasing amount of decision making, it is best if you can discuss it before it becomes a problem. Start by staying something like — “I know you used to do the taxes; but now it’s my turn to take on that awful job. Let me help out.”
7. Guilt and Resentment
Caregivers may feel guilty for having negative feelings, such as frustration or resentment, toward the person they’re caring for, especially if the care is long-term. This can add an extra layer of mental burden.
8. Lack of Support or Resources
Many caregivers struggle to find adequate support, whether it’s through professional help, support groups, or financial assistance. The lack of resources can exacerbate the stress and burnout. It is too often just easier to do it yourself, even as you realize you are not doing it all that well.
9. Health Consequences
The constant stress and demands of caregiving can negatively impact the caregiver’s own physical and mental health. They may experience sleep deprivation, depression, or even chronic illness due to the physical and emotional strain.
While caregiving can be rewarding, it’s also essential for caregivers to find support and ways to care for their own well-being. If you’re going through this or know someone who is, reaching out to support networks, whether professional or community-based, can make a significant difference. It’s also okay to ask for help and take breaks when needed. Just getting together with other caregivers over a cup of coffee can be helpful, because you realize you are not alone.
As the population ages, we will all find ourselves in situations where the needs of our family will conflict with our need to earn a living or even take care of ourselves adequately. I don’t know when there will be enough financial support for caregivers; I only know that the time will come when it is a crisis that affects almost every family.