When we talk about chronic life limiting diseases, there is a group of people that usually gets left out. So much of the attention is focused on the patient, the disease, or the medications, that this supporting role is simply ignored. It is quite possibly the hardest job anyone will ever be asked to do, yet there is no financial compensation or societal reward given for the task. In fact 2 out of every 3 people will at some point have this unpaid job. This job is adult caregiving.
Caregivers have an enormous task. They provide for the needs of people who cannot do so for themselves. It’s more than just a meal, or helping someone dress. Caregiving for someone with a chronic disease involves sorting medications and treating symptoms. It entails sleepless nights and cleaning up accidents.
To those unfamiliar with caring for an adult, this may remind you of caring for young children. This is much more, though. Add to the similar tasks of childrearing the emotional toll of having your spouse’s personality change, such that they now belittle or berate you or worse, don’t know you. Add in the discomfort and invasiveness of having to bathe or change your own parent. Or consider the physical strain of lifting a 200lb person out of their chair, all the while worrying they may fall on you.
We aren’t through, because now, you must remember that often the caregiver is also giving up something. They may have their own family or children that they cannot spend time with, or they may have a job they must take a leave of absence from, or even school, or trips that cannot be taken.
Unfortunately, this sacrifice is often taken for granted or overlooked, and by ignoring this important job the caregiver becomes isolated, depressed, and their personal health suffers.
What help can we offer caregivers? To start, if you know someone who is a caregiver, offer them a break. This can be as simple as a going over for coffee and letting them talk about their strain or volunteering to sit with their loved one to let them get out of the house. Affirming their workload in anyway is helpful.
If the person being cared for qualifies for hospice, this may be a consideration, as one of hospice’s main benefits is directed at relieving the stress of caregiving. Hospice provides a nurse or an aid to come into the home for a visit, or an actual 5 day respite where the patient leaves the home to allow the caregiver a chance to rest.
The most helpful advice is also the hardest. Caregivers must learn to ask for and actually receive help offered. There is tremendous guilt associated with caregiving. Caregivers think it is a failure if they need help or must move their loved one out of the home. Isn’t it a greater failure, though, if your own health is permanently lost at the cost of doing it all on your own?
Finally, let me publicly say, “Caregivers, you are amazing. Hang in there. You are doing a terrific job!”