It is estimated that there are approximately 62 million family caregivers of adults in the United States today, so chances are, if you are a healthcare professional, at least some of your patients have a family caregiver assisting them. It is believed that the stress from providing care to a loved one significantly increases a caregiver’s chance of developing a chronic illness herself, so while you are caring for your senior patients, don’t forget to care for the caregivers.
But how can you help your clients’ caregivers maintain their own health while caring for the health of another?
Stress the Importance of Self Care
One of the most important things for a caregiver to understand is that his own care also needs to be a priority. Some might argue that a caregiver’s own care is even more important than the care he is providing — if he doesn’t take care of himself, who will be there for the his loved one? Even so, although this may be easy to understand in theory, it is much harder to put into practice, particularly when the caregiver is dealing with a crisis situation.
While this might be the most common advice given to a family caregiver, unless he knows how to take care of himself, the advice is not really all that helpful. Giving him actual suggestions on how to take care of himself can be much more helpful if you personalize it to what you know about him. You might suggest more frequent check-in visits to keep his own health issues under control and encourage him to continue to do activities he enjoys, like yoga, walks with friends, or other healthy activities.
Sugarcoating the situation can set up a family for failure. If the situation is likely to be long-term and chronic, it’s important that the family and the caregiver are aware of this so that they use their resources accordingly. It may be fine for a family to provide 24-hour care for a short-term need like post-hospitalization or end-of-life hospice, but if the needs of the patient are likely to increase and continue over time, caregivers need to make sure that they do not burn themselves out in the early stages of the illness and have nothing left to give within a few months.
Pay Attention to Her Mental Health
A 2006 study indicates that 40–70 percent of family caregivers have symptoms of depression, and as many as half of them meet the criteria to be diagnosed with major depression. Because so many of the symptoms of depression can also come from a lack of self care, the caregiver may write them off as just a part of being a caregiver; things like exhaustion and weight gain or weight loss are easily explained away unless a healthcare professional explains the dangers of letting depression go untreated.
Remind Her It Takes a Village
Many family caregivers take on the role on their own, which makes it even harder to find a way to include self care in their routine. They may be more likely to listen to you as a trusted professional than some of their well-meaning friends who offer assistance. Encourage them to take friends, family, and neighbors up on their offers of help — no matter how small — and to ask for help when they need it. It might also be helpful to offer them referrals to home health providers, geriatric care managers, or adult day programs you have experience with, so that they at least begin to consider outside assistance.
To Work or Not to Work
Many caregivers are not in a position to quit their jobs to become full-time caregivers, yet they feel significant pressure to be available at work and at home. Be a listening ear as they share their situation, and offer suggestions such as speaking to their human resources department about temporarily going to a part-time schedule, telecommuting, or even taking a leave of absence. Many people are not aware of the Family and Medical Leave Act (FMLA), which requires that companies over a certain size must hold a position for someone who needs to take a leave of absence due to a family illness.
How to Handle Role Reversal
One of the challenges of caring for an aging parent is the role reversal that caregivers often experience, particularly if their parent has any kind of dementia. Many adult children feel compelled to make decisions for their parent, and it often results in resentment and noncompliance. Encourage the family caregiver to include her parent in decisions as much as possible. One way she can do that is to say, “I’ve been thinking about this, and I wonder what you think about some ideas I came up with.” Even someone with early-stage dementia may be able to share his thoughts and opinions on a decision if the question is posed at the right time, when the person is able to both understand the question and participate in the discussion.
Encourage Family Involvement
Encourage your clients to include other family members in the care. That may mean giving up some control, but it can benefit everyone in the long run. Even if some family members don’t live in the area, there may still be ways they can participate in caring for their loved one. They may be able to provide relief for the hands-on caregiver once or twice a year; they may be able to do some research on professional care options like in-home care providers or adult day programs, which will provide some relief to the hands-on caregiver; or they may be able to offer support in the form of someone to listen and offer suggestions when the hands-on caregiver is too close to the situation.
Advise Him to Create a Backup Plan
The reality is that anything can happen to any of us, but if you have a client who is a family caregiver, any kind of catastrophic event can have repercussions well beyond his own needs. Encourage your client to think about what would happen if he were unavailable for a day, a week, or a month and to start working on a plan for each situation. Would someone be able to get into the home if she were called in to help at the last minute? Would she know what to do?
Join a Support Group
Encouraging your caregiver client to find a support group may be one of the best things you can do. There is significant value in knowing you are not alone and in learning from those who are going through the same thing you are. There are general caregiver support groups and those specifically designed for caregivers caring for someone with a specific illness such as cancer, dementia, or Parkinson’s disease. There are also specific groups based on the caregiver himself, such as LGBT, spouse, or adult child groups.
While face-to-face support groups may offer the most benefit for many caregivers, it can difficult to get away from their role — or when they do, they often want to do something completely unrelated to their caregiving. In cases like these, a growing number of virtual support groups are available, either via phone or video conference.
Spouse caregivers frequently do not identify as a caregiver and instead assume it is just another part of their role as wife, husband, or partner. Remind them that it is important to maintain the partner relationship despite the new role they have taken on. Continuing with the special traditions, routines, and celebrations that have been established in their relationship can help them maintain the foundation of the relationship and reduce the resentment that can often creep up in caregiving. Sometimes bringing in outside help is a way that they can continue to have special times with their spouse or partner so that they’re not always the caregiver.
It’s essential not to discount the importance of a caregiver who lives a long distance from the person in need of care. A long-distance caregiver often feels a tremendous amount of stress because she can’t control the day-to-day needs of her loved one, and she likely often struggles to get the information she needs to help manage the care. Encourage her to enlist the help of someone close, to take frequent trips if feasible, and to go easy on herself when she can’t do all that she thinks she needs to do.
The Sandwich Generation
The “sandwich generation” are the family caregivers who care for an aging parent while also raising their children. With more and more women waiting to have children until their 30s and 40s, this segment of the caregiver population is likely to continue to grow. Juggling work and family is challenging enough without the added role of being a caregiver, so these caregivers need to be especially certain that they’re taking care of themselves and doing what they can to lighten the load in other areas of their lives for as long as the caregiving role will continue.
No matter who a family caregiver is providing care for, she needs you, as a trusted care provider, to look out for her best interests. Sharing observations about her own health, sharing trusted resources, and providing a kind, listening ear is the first step to helping her continue to focus on her own health.