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As y’all know, I am a solutions-oriented kinda gal. However, I must advise that this segment may seem disproportionate with mentions of “Problem.” Today we are talking about an evergreen and universal issue here, a serious matter for all caregivers and those in their orbit.
Caregiving Includes Your Own Care (Shocker, I know)
Yes, as caregivers, we deny ourselves. We become so consumed with the tasks and emotions of caregiving that we do not even realize how far gone we may be.
Others often see it in us before we see it in ourselves, so listen up to this segment for you or someone you may know.
According to the Family Caregiver Alliance, more caregivers are hospitalized due to burnout and stress-related illness than due to worsening medical conditions. The reason is clear: Caregivers tend to put themselves last.
Caregiving can be overwhelming despite its many rewards, including sharing love, honor, and purpose. Especially when caregivers expected to do this work for the short term find themselves in for the long haul, self-care can be, at best, an afterthought.
Let’s look at what can happen to someone when caregiving. As we do, I encourage you to see if you recognize any parts of yourself here or any tendencies. Or maybe you are watching someone important to you become consumed in caregiving, a hard thing to witness.
Rest assured, we will talk about some ways to avoid getting sucked down the swirling vortex and ideas to help you or to help that ‘someone else’ in your life.
Caregiving contains counter-intuitiveness
Just as airline passengers are advised to put on their own oxygen masks before helping others, caregivers must look after themselves first. It seems counterintuitive to those of us who feel compelled to help, those who may live in a mom-mode, or whose M.O. has always been service to others.
There are plenty of emotions in caregiving involving overload, feelings of isolation, stress, guilt, depression, helplessness, anger, and resentment. I wrote separate blogs about the emotions of caregiving, which I refer to as F.U.D.G.E., which include fear, uncertainty, doubt, guilt, and exhaustion. Read that overview here, and you can find them all on my website.
We can lose our way, our selves, and our wits when we are caregiving. Here are some scenarios you may recognize.
Overload – Tracy’s story
“When I first became involved in caring for my parents, there were only a few personal care tasks to do. Gradually, I took on more and more and became responsible not just for their meals and baths but also for their home care, housing modifications, and legal and financial affairs. There was too much to do in a week, even a morning. I became overwhelmed without realizing what was happening.”
Pro Tip: Take a deep breath, step back, and analyze. Assess what your loved one’s needs are today and will be in the future. Make a list of tasks and priorities, ranked according to what you must do personally and what you can delegate. Example: Maybe you need to take Mom shopping, but who takes her to the senior center is not so important.
No time for yourself – said CeCe
“Juggling the demands of parent care, a full-time job with a long commute, and my own marriage and housekeeping, I never felt I could take time for myself. Lost in the role of caregiver, I became unbalanced and lost my health. By the time I made it in to see my GP, I had anxiety and blood pressure issues and was pre-diabetic from all the racing around and grabbing fast food in a pinch. I hate that I did that to me and to my family.”
Pro Tip: Take some time to consider or list your needs, starting with the personal. Protect the time you have with your spouse and children. If you get on a caregiving gerbil wheel, it’s easy to find every minute given away, and there’s no time left for you. Think. Find something that feeds you — a walk, reading, solitude, dancing, exercise, “retail therapy” … and schedule that in.
Trying to do it all – Kathy’s Story
“Because I had been entrusted with my parents’ care, I didn’t believe anyone else should take on the tasks. I truly believed that no one else could care for my parents as well as I could. I was wrong: They were well-cared for by others, but in a different way. After some intervention by a professional, I learned that we could get the work done through other people, freeing me up for some respite and self-care.”
Pro Tip: (Of course, I am going to suggest) Consult with a care manager type. Learn to accept and ask for help, especially from family, friends, and community resources. Call a meeting with siblings or significant others to discuss how tasks might be delegated.
Isolating yourself – Li got lonely
“As the months of caregiving went on, I became more withdrawn. I didn’t feel I was ever doing enough for my parents because I was so overwhelmed by taking on everything myself.”
Pro Tip: When people offer help, let them do so — even having someone bring over a casserole one night. Offer specific things they can do, whether vacuuming, cooking, or watching your loved one, so you can have some time to yourself.
Here is a cool angle from a longtime caregiver that solves a lot: If you find you urgently need human contact, invite over two friends or relatives who’ve volunteered to help at the same time. One can cook and look after your loved one while you and your other companion talk, take a walk, and savor your freedom — then take a walk with your other friend when you come back. Lighten the load!
Not setting limits – An Everybody dilemma
“I used to say yes when something was asked of me. I never felt I could say “no” without being perceived as selfish or resentful. It was something I projected onto myself, and it was false. Then I would beat myself up for always saying “Yes” and having to fit one more thing in. Then, I would resent people and things. Not good.”
Pro Tip: Caregivers can learn to say “no” in cases where they used to say “yes” so they may protect their time and energy. Try this (it works, and many folks have returned to tell of their success and relief): “No, I can’t do that, but what I can do is ____.” Or simply, “No, I am unable to do that right now.” Period.
Don’t try to be all things to all people. You can say no without putting someone out of your heart; it’s not selfish to take care of yourself to give the best possible care to someone else.
Lack of a support network – Tony remembers
“Always being reactive rather than proactive, I was not aware of community resources that could help. Because I didn’t know any other caregivers, either, I felt frustrated and helpless. I felt bad that I didn’t know and had no time to look, research, or reach out. Floundering is no fun.”
Pro Tip: Find support groups — informal or formal — where you can express feelings that you are uncomfortable with, such as frustration and resentment. Solutions live there, too; the Where’s and the How To’s and the folks going down the same path can help you cope. Search locally or online, search by aging or by a diagnosis. Ask within your faith community or your employer’s EAP if there is one.
Declining health – Sandra shares
“My lack of self-care became a vicious cycle: Too tired to exercise. I stopped altogether. Then, I couldn’t sleep well, which made me anxious. To calm down, I had a few shots of vodka every night and then didn’t feel like cooking or eating. Junk food kept me going on the fly.”
Pro Tip: Watch out for destructive ways of coping, such as drinking too much, misusing medication, or overeating. It can also be what you are eating and when. Take stock of where you are physically and emotionally – Are you where you want to be? How can your decisions be different to incorporate longevity and sustainability into your health and routine?
No social activities – Pam’s way back
“Because I felt exhausted and isolated, and because my peers couldn’t relate to what I was going through, I stopped socializing. No time, and they could not understand, so we drifted apart. That only increased my depression and hopelessness. I found myself so very alone.”
Pro Tip: While it may seem counterintuitive (due to all the reasons we are discussing here), try — no matter how difficult it is — to have a life outside your caregiving duties. Take a caregiver ‘vacation.’ Arrange for a bit of respite care to enable you to take breaks for some soul-nourishing activities such as an evening out, quiet time to read and write letters or e-mail, or a weekend get-away. (Respite can be defined as some form of coverage: short-term care in the home or coverage at hospitals, or enrolling your loved one in senior day care if appropriate).
No time out – Will denies himself
“Because I never stopped working or thinking about my parents’ needs, I never took a break from my responsibilities. I completely forgot how to relax, and I had no tools for my own self-help and self-care.”
Pro Tip: Tap into some quick relaxation methods. If you find yourself continually tense and irritable, experts advise using techniques such as deep breathing exercises (no one will realize you are doing it), music, nature walks, massage, visualization, and going to the gym. Some kind of “pattern interrupt” can help change your outlook and keep you positive (and you control the how and when. That’s power). Stepping away, stepping outside, or calling a friend (to hear about their day) can do worlds of good. Studies show that a positive outlook can do more for health than we realize.
Work/family imbalance – Gwen feels guilty
“My employer didn’t have a family-friendly policy, so I never felt comfortable asking for flexible work arrangements or time off. That pressure increased my health problems and resentment. I felt trapped, which messed with my loyalty to my employer and made me feel stuck. Less and less time with my family was resulting in my kids’ testing boundaries and a less-than-stellar marriage.”
Pro Tip: If you work for a mid to large employer find out if your employer has an employee assistance program (EAP) you can use to find out about counseling and other support programs that may be in your benefit package.
If needed, look into federal and state laws to assist employees in maintaining their caregiving responsibilities. One example here are benefits under the Family and Medical Leave Act (FMLA). FMLA allows employees to take up to 12 weeks of unpaid leave to care for an ill family member. Some states also offer paid leave for caregivers. If you are in California, working caregivers may receive 55 percent of their wages for up to six weeks of leave per year.
Hear me when I say: It is not just you. You are not failing. Change is needed and can occur.
Caregivers often struggle alone for years, thinking this is just part of their responsibility before they reach out for help. A survey from the National Family Caregivers Association found that most caregivers wait four to five years before seeking support.
There is a solution. (Don’t you hear me say that often?)
Let’s get into SOLUTION, shall we? What if you reach the point where you feel you just can’t give any more?
Consider hiring help from a home health agency. Or you may need to consider placing your loved one in residential care — especially if you cannot find adequate or affordable in-home care services to replace your own care.
In the most desperate situations, you may want to speak with a family or grief counselor or hire a care manager to organize and monitor your loved one’s care. Good self-care is largely a matter of awareness: Never lose sight of the importance of putting your own health first. Experts advise you to look at the situation realistically and to be forgiving and patient with yourself.
“To Thine Own Self Be True” has a bearing here. Most times, the caregiver must consider their own sustainability since caregiving can often become long-term. Remember also that your whole life is not caregiving. You choose to be there because of your love or sense of duty, but as an individual, you have a right to wellness and to love yourself. A caregiver really has two choices: fall apart or find inner strength.
What I have found and know to be true about caregiving is
- We are not alone. There are folks to soundboard and help solve stuff.
- We don’t have to, nor should we do it all.
- There are times we need to pause and learn to think differently.
- We can divide tasks, build teams, and build in respite.
- Be open to new ideas.
- Care for yourself so you can care for others.
If ever I may assist with any of what we talked about today then consider setting up a conversation with me. You will move forward in just one hour with a plan, action steps, and some resources. Tap my Advo-brain and extensive care management experience to help you and the person you love.
“You can’t drink from an empty cup.”
It is said, and it rings true: “You can’t drink from an empty cup.”
To sum up this segment further, let’s fix this. I am here for you.
Nancy Ruffner is a patient advocate whose focuses include aging strategy, healthcare navigation, and solo aging. Nancy consults with clients in a triage fashion, offering one-hour consultations to find a path, gain a deeper understanding of “how stuff works” in eldercare, or to specifically problem-solve. Schedule your Power Hour now, without obligation of commitment or continuing costs. nancyruffner.com