Online support groups can be a life-saver for caregivers. It is important for us to know others are going through similar situations so we don’t feel alone or so we can learn something new about caring for our loved one that others have tried and that works. (I learned quite a bit about incontinence care and the importance of maintaining a person’s dignity from my soul sister, Kathy Lowrey, who cared for her husband when he had Lewy Body Dementia.)
I am involved in several online caregiver support groups. Sometimes I actively participate and sometimes I look at the comments and information posted but scroll past without commenting. Most of the time I am heartened by the love and care people show one another.
Occasionally, though, I cringe when scrolling through comments made to people reaching out for help. The majority of the time people are kind but sometimes people are judgmental and harsh and impatient toward other caregivers. People in similar situations!
Every caregiving situation is different with different people doing their best caring for loved ones in a variety of situations. Caregivers can be in different stages of caregiving, can have other life situations that make their situation difficult and can have different emotional strength and attitudes at this particular time in their lives.
It is important to remember that each of us is only who we are at this moment in time in this set of circumstances based on our past experiences and our hopes for the future. Everyone is different and it does not help to make someone feel guilty because they are not handling a situation as well as we think they should.
Caregivers can help themselves and others keeping these reminders in mind.
- Listen instead of comparing yourself to other caregivers. Please. I have never met a caregiver who thinks their situation is the worst. Caregivers may think they have it difficult but most think someone has it worse than them – no matter the situation. It is not helpful to minimize our caregiving situation (or someone else's) because another caregiver’s situation seems worse (or better) than our own. It doesn’t matter. Each caregiving situation is different yet we all go through the same emotions, struggles and heart-wrenching decisions at some point.
- Be supportive instead of judging other caregivers. Robert goes to a Day Program and he sleeps a lot. My husband is my co-caregiver and gives me a tremendous amount of help with Robert. He has lived on his own, in a Skilled Nursing Facility, in an Assisted Living Facility, was living in a Residential Home for the Disabled. Each of these situations is difficult in its own way. I know other caregivers who made the decision to permanently place their loved one in a facility and they are either relieved, devastated or a little of both. There are caregivers who work full-time and have to leave their loved one at home with the knowledge they could have a devastating seizure or fall at any minute. These caregivers are worried sick enough and need support, not judgment or a declaration that they are not “real” caregivers because their loved one lives elsewhere or is not cared for by them 24/7.
- Educate instead of thinking less of other caregivers. Here’s my confession: I was unsure how to put a brief on my 220 lb incontinent, adult brother. I know how to put a diaper on a baby but a standing, wobbly adult? I struggled. At first I needed an extra hand or two to get it on snuggly and, I actually wasn’t even sure at first if the tabs should go in the front or back! (The tabs go in the back and then tape to the front of the brief.) Help new caregivers learn the basics without making them regret asking the questions.
- Recognize when we want to vent instead of problem solving. Sometimes we are losing our minds when caregiving and have no one to talk to. Let us rant and rave and tell you how tired and awful (and then guilty) we feel without telling us it is time to put our loved one in a home or that we need a vacation (especially since respite is so difficult to get sometimes).
- Let’s laugh together and not always be so serious. Caregiving is full of serious health issues, impossible medical decisions and extreme concentration so mistakes are not made. But we can’t be serious all the time! Caregivers know (but may not admit) that there can be some very funny caregiving situations. We have to laugh! Whether we laugh together or alone let’s at least recognize the absurdity of some of our caregiving situations! Some of the best friends I made while caregiving are ones I could laugh with about our crazy situations.
Everyone knows caregivers need more support from non-caregivers, from the government, from our employers and from our families but we also need support, love and kindness from each other.
We can all use more kindness in our world so let’s keep this in mind when dealing with each other. Let’s also remind ourselves to be kind not only to one another but to ourselves.
We can do that for each other.
We can do that for each other.