The pandemic has changed the face of caregiving and the emergence of social media sites offering caregiving advice has exploded. As part of the marketing program for my book, One Caregiver’s Journey, I joined a caregiving site based in my area. The Aging Tribe has provided many young caregivers with sound advice and solutions. There are a number of professionals on the site who have been able to assist with navigating government systems and finding appropriate placement. Many people reside out of state and are looking for advice for their parents in an area unfamiliar to them. In the same breath, the sites are also a breeding ground for the proverbial crutch when the going gets tough. People look for advice when they are in a dark hour, and while the advice is given from the heart, it is no substitute for dealing with the issue with compassion, love, and head-on alone. The majority looking for advice are millennials who are the fastest-growing segment of caregivers. They rely on social media and not their instincts.

Recently I was thrown off The Aging Tribe by the administrator who thought my advice was not “kind.” I want to share that experience. A young millennial posted that her mother had dementia, and she had become extremely repetitive. The young lady indicated she could no longer deal with the constant repetitive nature of her mother. The post truly sounded like a cry for help to avoid abusing her mother. She was asking for suggestions from other caregivers for herself. The post made my radar go up, and periodically, throughout the day, I checked to see what advice she was being given by other caregivers. Most often, the advice was to seek therapy, to take care of herself first, and to avoid her mother for a while. Can you afford to pay a therapist to be told you need to learn coping skills? Call me old, but who is going to stay with grandma while you sit on a couch crying about your mother’s repetitive dementia? You’re the lady’s caregiver, you cannot avoid the person you are caring for. Early in the evening, I finally replied to the post, basically saying it is ok to discover and admit you are not a caregiver – not everyone has skills to endure the rigors of caregiving. I mentioned the post sounded like her mother could be in danger of elder abuse because of her wanting to be away from her. Well, the site administrator sent me 8, count them 8, posts telling me what an awful person I was to suggest this woman was not a caregiver and that I was not very kind. The site was to provide assistance and suggestions, no negativity.

I stewed for a while then responded. I am kind – I cared for my mother 24/7, alone in my home for nearly a decade. She had dementia, and I endured repetitive comments for days. The way you deal with repetitive dementia is to engage with the person, talk to them and divert the conversation from the repetitive topic. That is the time that person needs compassion and a companion, not to be shunned and shamed. I indicated that my mother was 102 when she passed in my home, so I did a helluva job taking care of her. I could tell the caregiver about giving my mother a shower at 2 in the morning after finding her in a soiled bed, laundry at all hours of the night, and dealing with pee, puke, poop, and problems for 10 years. Not everyone has the fortitude to be a caregiver, not everyone can give up their life for 10 years, and not everyone can deal with the constant barrage of unpleasant situations. Caregiving is a difficult gig, but it has numerous rewards, and the biggest one is the love for the person you are caring for. It also makes you stronger and more resilient. The next day the administrator had kicked me off the site.
Social media has some marvelous suggestions and insights for caregivers. There are people who can assist in resolving problems and dilemmas. There are people who just want someone to give them the push and strength they need to continue. And there are people who whine and complain about their situation. Social media caregiving sites offer the opportunity for people to get valuable information and location of services. Millennials spend more time looking at their phones for answers from these sites than using their brains and hearts to deal with the situation.

I provided care when I didn’t have Facebook or Instagram to give me advice or entertainment. People will often ask how I didn’t go insane with the many facets of dementia, and my response is that I asked for patience and looked deep within my soul for ways to continue. One Caregiver’s Journey is a snapshot in time over 9 ½ years of how you endure the changes and challenges and succeed in caregiving. Pick up a copy online at Amazon or Barnes and Noble and see if you think I should’ve been kicked off the Aging Tribe.

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