Family caregivers generally earn their job title in one of two ways. The first is what I call the "sneak up mode." The second is "crisis mode."
For me, caregiving began with an elderly neighbor who needed some assistance. This "assistance" turned into a five-year stint of elder care, closely followed by the ever increasing needs of six of my own family members. For all but one of my elders – my dad whose failed brain surgery sent him into severe dementia – care needs gradually increased.
I can clearly remember the day when I finally woke up to the fact that I had a full-time job as a caregiver, even though, technically, I wasn't "working" at the time. Had I had more family caregivers to communicate with, I may have realized earlier how much my caregiver role had slowly overtaken my life.
Would the knowledge have helped me understand that I needed to take better care of myself? I don't know. Hindsight is interesting, but doesn't change the past. My caregiving years started at a time when family caregiving wasn't big news. You just did what you did, and there wasn't a great deal of support – official or casual.
Since I was already heavily involved in family caregiving by the time my dad's surgery sent him into instant dementia, the event, emotionally devastating as it was, didn't change my caregiving situation all that much. Dad's terrible outcome from the surgery just immersed me deeper into my role.
Many people, however, are just living their lives – working their jobs, raising their children and visiting relatively healthy parents from time to time – when, bam! Out of the blue, Dad has a stroke. He's hospitalized. He survives. However, he's partially paralyzed, will need months of therapy, and will not likely ever be the same again. Caregivers experiencing these crisis events hit the graduate level of caregiving before they even have a chance to do undergraduate study.
No matter how you entered into your caregiving role, you will have to make changes in your life. There is a considerable amount of help these days through sites like AgingCare.com and many diseases specific websites, as well as your state website.
Family Caregiving Recognized by Professionals
Even the government website, Medicare.gov, has ramped up efforts to help family caregivers. I find this significant, since during my early days of caregiving the average doctor was very ready to dismiss the opinion of a family caregiver, or even considered the caregiver a nuisance. Certainly no government site was out to support the caregivers of our elderly and disabled.
So, yes, there is help out there. But where do you start? You must begin to plan if you are not going to undermine your own health while you care for others.
Setting boundaries has never come naturally to me when it comes to someone I love. Yet, I had to learn and so must you. If caregivers have no boundaries and just blindly do whatever is asked of them at all times, they may burnout before they know what's happening.
Healthy emotional boundaries are important in helping the caregiver distinguish between his or her own needs and the needs of the person being cared for. Boundaries remind you and your loved one that your relationship is between two adults and that there need to be expectations of mutual respect and autonomy for the relationship to be successful. set boundaries and make them clear.
Be Flexible as You Settle In
If you've been in crisis mode, after the crisis settles down and you've figured out some kind of care plan you will likely need to tweak your boundaries. Naturally, if your dad has another stroke, you're not going to say, "I'm done for the day. Someone else handle this." Life happens. However, even long-term caregiving will shift as life moves forward and the care receiver's needs increase. This is the time when, if you haven't done so before, you'll likely need to get outside help.
Research Types of Help for Different Needs
- There are ways to get help with caregiving, though not as many as we'd like. Many are expensive. Still, organizations such as Catholic Charities offer the help of people who can sit with your elder while you do errands.
- Your state website will have a version of the National Family Caregiver Support Program, where you can contact people who have been in your shoes. Go to your state website, type "aging" in the search box, and you should find some state resources.
- Talk with other caregivers through support groups either online or in person. The AgingCare.com community is a great place to start!
- The Alzheimer's Association offers a broad range of support and can answer many of your questions.
- Your local hospital, your local religious organizations and even nursing homes will likely have lists of in-person support groups you can attend.
- Online sites are fantastic, in that most caregivers are pressed for time and many have a hard time getting to a group meeting.
The point is, get support from other caregivers. Ask people who have been in the trenches what they did that worked, what they did that they'd do differently, and what they advise. Then, take a look at your boundaries, do more soul searching, and get some help.
You need to look inward to yourself as much as outward to your loved one. If you develop severe caregiver health problems, you may not be able to help this person you have nearly given your life for. Put on your oxygen mask before your put one on the person you love. If you don't, you both may go down.