I have interacted with countless professional and informal caregivers over the years, and I’ve noticed two prominent patterns that characterized my own experiences and those that others have shared with me. It seems that family caregivers generally earn their job title in one of two ways. The first is what I call “the sneak up” and the second is “the crisis.”
Whether more responsibilities for your aging loved one have slowly creeped into your daily life over the past few months or you’re suddenly facing some very difficult decisions following a serious health scare, there are a few pointers that can help you start this difficult journey off on the right foot.
My caregiving journey began after an elderly neighbor’s spouse passed away and he needed a bit of assistance and company. This “assistance” slowly grew into a five-year stint of elder care that started in his own home and eventually ended in a skilled nursing facility. After my neighbor passed away, my duties were quickly replaced by the ever-increasing needs of six of my own family members. Before I knew it, running a few errands and stopping by to assist with chores from time to time had taken over my life.
I can clearly remember the day when it finally hit me that I had become a full-time caregiver. If I had had more experienced family caregivers to communicate with, I may have realized earlier on how much this role had evolved and crowded out other aspects of my life. But would this knowledge have helped me understand that I needed to rebalance my priorities and take better care of myself? I don't know.
Hindsight is interesting, but it doesn't change the past. My caregiving years occurred at a time when taking on this role wasn't big news. You just did what you could to help your loved one(s) and figured things out as you went. There wasn't a great deal of official or casual support available back then, but fortunately that is changing.
My dad was the only person I cared for whose needs didn’t gradually increase over time. He was feeling the effects of age, but he was still relatively independent. That is, until he underwent brain surgery to correct a World War II injury. The procedure was supposed to prevent him from developing dementia, but instead it catapulted him right into it. He woke up in a demented state, suddenly needing immense assistance. Since I was already heavily involved in caregiving for other family members by the time my dad's needs escalated, the event, emotionally devastating as it was, didn't change my role and responsibilities all that much. Dad's new post-operative reality just immersed me deeper in my role.
Many people, however, are just living their lives—working, raising their children and visiting relatively healthy parents from time to time—when, bam! Out of the blue, Mom has a stroke and winds up in the hospital. She survives, but she's partially paralyzed, will need months of rehabilitation and therapy, and will likely never be the same again. Spouses, adult children and other family members who respond to these health crises essentially hit the graduate level of caregiving before they even have a chance to attempt undergraduate study.
Crisis scenarios happens all the time. A simple fall, heart attack, stroke, broken hip or car accident can have significant, long-lasting changes on a loved one’s life. What many people fail to consider is that this event can have a serious impact on family members’ lives as well.
Getting Started in Your New Role
No matter how you begin your caregiving role, you will have to make changes in your life. Of course, sneak-up mode affords caregivers more time to acclimate and prepare for the future, but keep in mind that low-key caregiving can ramp up without notice, too.
So, where do you start? Tackling a couple of fundamental goals, like setting boundaries, mastering flexibility and conducting research for future care needs is crucial. You must begin to plan if you are not going to undermine your own physical and mental health while caring for others.
Setting boundaries with those I love has never come naturally to me. Yet, I had to learn this valuable lesson and so must you. When caregivers have no boundaries and just blindly do everything that is asked of them, it is a guaranteed recipe for burnout. You may think that you’re prepared to stand up for yourself and maintain some normalcy while caregiving, but it’s harder to say “no” to an ill loved one than you’d think.
Healthy emotional boundaries are important in helping a caregiver distinguish between their own needs and those of the person being cared for. Boundaries remind both of you that you are adults and that there must be expectations of mutual respect and autonomy for your relationship to be successful.
For boundaries to work, they must be realistic, firm and clearly communicated to your care recipient and everyone on their care team. For example, one boundary that many adult children set when they begin taking care of their parents is that they will never quit their job to take on caregiving full time. This boundary is practical financially, but others must be set to safeguard your mental and physical health as well. For instance, visits to and phone calls from a loved one can add up fast. One way of limiting these things from overwhelming your mind and your schedule is to choose set days and hours for visits and stop taking calls between 7 p.m. and 8 a.m. (unless there is an emergency, of course).
Sit down and write out some non-negotiable boundaries that you want to stick to no matter what happens. Remember, you can always set new boundaries as needed. When you feel your priorities are getting a little jumbled, look back at your list and see if you (and other members of the care team) have respected them. If the answer is no, then you have some changes to make.
A Little Flexibility Goes a Long Way
Once you’ve put a care plan in place, it’s highly likely you’ll need to tweak your boundaries. Life is unpredictable, especially for caregivers. If your mom has another stroke, you're not going to say, “It’s 7 p.m. and I'm done for the day. Someone else can meet her at the hospital and arrange her rehab stay.” The one thing we can count on is that progress is very limited when it comes to aging. There’s no telling how or when your loved one’s needs will increase, but it is guaranteed. Fine-tuning your boundaries so that they mesh with the ever-evolving reality of your situation is crucial.
Building some flexibility into your schedule and priorities is important, but where it really matters is being open to all sources of help. You must be willing and able to step away and let someone else take over from time to time. Doing so does not constitute laziness, abandonment or a reason to feel guilty. The fact of the matter is that one person cannot possibly do it all. It’s important to understand that as your loved one’s needs increase, the importance of your own needs and those of your family does not diminish.
Flexibility is a fundamental part of being a caregiver but be warned that it can get out of hand. This is especially true if other care team members are constantly relying on you to shift your schedule around or pick up their slack. Even care recipients can become inflexible and demanding, placing the entire burden on their caregivers to adapt. This is unacceptable. If this happens, you must work on enforcing your boundaries or putting stricter ones in place.
Research, Discuss and Plan
Caregiving is a multi-faceted job that requires a whole slew of skills: medical, financial, legal, interpersonal, etc. The more you can learn about what lies ahead for your loved one and yourself, the better prepared you will be throughout this journey.
Whether Dad was just diagnosed with the early stages of Alzheimer’s disease, a chronic condition that yields a notoriously long caregiving road, or your healthy spouse has just fallen and broken their hip, it’s important to learn everything you can about their medical condition(s), the type of care they need now, their prognosis and the type of care they will need in the future. Understanding the details will help you know what to expect medically, financially and even emotionally.
Look to your loved one’s doctors, clergy, financial advisors, attorneys and any individuals who have gone through similar experiences for support and guidance. A caregiver support group, whether in person or online like the Caregiver Forum, is an invaluable tool for people who are new to elder care. Ask people who have been in the trenches what they did that worked, what they wish they had done differently, and what they recommend. Fellow caregivers possess a wealth of often untapped wisdom.
As you learn things, discuss them with your loved one and their care team to ensure you all are on the same page and formulate a care plan. This includes difficult topics, such as financial planning, appointing a power of attorney, preferences for long-term and end-of-life care, and funeral planning. There are numerous sources of information and assistance available online, through your state and through your local community. Finding them can be a challenge, but your local Area Agency on Aging (AAA) is an excellent starting point.
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