Caregiver Advocacy

Montrose Daily Press [February 12, 2017] Kathryn R. Burke

Caregivers need to be sure the one they care for (their Careé) has basic needs met: enough rest, healthy diet, medical care, physical exercise, and social stimulation. But, there is a lot more to Caregiving than what amounts to basic babysitting.

Caregivers are also advocates. It’s a big part of the job, and only gets bigger as your Careé’s health declines and more care is required. It’s easier if you start out gradually, “learn the ropes,” and figure out what’s needed and when. But when it comes to push and shove, Caregivers make the rules, set the policy, oversee care.

Caregivers advocating for someone at home work with their medical team, social workers, and their home-care team. All of this requires a lot of juggling of personal and caregiving time and responsibility, especially if you are still working outside of the home. It also means you are likely to be short on rest, and therefore, short of temper. Somebody helps out during your work day, but when you get home, you may be tired, grouchy, and probably not excited about making dinner or watching some silly TV show to keep your Careé company. If your Careé is a night owl, as are many suffering from dementia, you won’t get enough sleep. If they are ill or you have to get up frequently to deal with pain, sufficient rest is illusive. A respite stint in a facility starts to look attractive.

Caregivers advocating for someone in a care facility, are still not off the Caregiving hook, however. Whether a short respite stay or a long-term care placement, you must watch out for quantity and quality of care—except that you have less control over both. The facility has a staff, yes, but it also has a lot more patients than just your Careé. Thus, 1:1 hands-on care will not be at the level or consistency you provide at home. So your job doubles; you are both Caregiver and watchdog.

Caregivers opting for respite care (generally a week long to provide you with a brief “respite” from Caregiving) experience relief (from what can be overwhelming responsibility), then guilt (from feeling relieved), and anxiety (that proper care is not being given). If you are at that stage of Caregiving, and you choose to take advantage of respite care (in many cases paid for by insurance), get out, get away, and go someplace (vacation, family visit) where you cannot be running back and forth to the facility—which defeats the purpose of respite. And, accept that you will feel guilty when you return, because respite (and the freedom it gave you) is over. You are back at the same situation that warranted respite in the first place.

Caregivers who must make the hard decision to place their Careé in a long-term care facility now have three roles: primary Caregiver, advocate, and grief counselor for themselves and their Careé. Your Careé is not coming home again. This is, perhaps, the toughest time of all, and it is where I am today. My husband’s diagnosis makes it impossible for me to care for him at home any longer. (We both wound up in the hospital.) I have to relinquish some of his direct care to others, and not just on a daily basis (as we had done at home), but 24/7. No matter how frequently I visit, or how often my private-pay CNAs go there to help out, my role now is more advocate and less hands-on Caregiver. I’m carrying an even larger load now that I am an advocate as well as a Caregiver.

Kathryn R Burke is the author of The Caregiver’s Journey, Navigating the Path and The Caregiver’s Journey, Building Your Care Team. Both books are available at, which also lists current speaking engagements and book signings.