The Unfiltered Story of Dementialand (a.k.a Why Facebook Isn’t Totally Terrible)

I came across an article in the New York Times about how Barack Obama read ten letters a day from citizens while he was in office. For his staff, the challenge was paring down the letters to ten to put into the back of his binder. The criteria by which letters were chosen interested me, and I enjoyed reading about the staff that filtered through the letters to choose the “winners.” And the “winners” were not always the letters that complimented the former president.

If you are interested, you can read the article here:

The tagline refers to the “unfiltered story of a nation.”

I’m not sure why I am drawn to this phrase, but it made me wonder where one might go to find the “unfiltered story of dementia.”

And then it occurred to me…Facebook.

Facebook offers many groups for provide support and education for the dementia community. Although I spend time at face-to-face support groups and chat frequently with dementia families, nowhere is there a more honest representation of where people affected by dementia (primarily caregivers) are than in private Facebook groups. There’s a certain comfort in being relatively anonymous when you need to rant.

Facebook drives me crazy about 60% of the time. Obviously, the campaign, election, and inauguration have not helped the situation. And then the other day there was this guy who decided to start a fight about his slowpitch softball league. And more and more people are using Facebook to promote their pyramid schemes and messaging me guilt trips for not hosting a party. (My response is always that I don’t have enough friends to have a party.) Oh, and I don’t need to hear about your kid’s diarrhea. There’s the unfollow button though, so it’s all good.

Of course, Facebook does have value. I think it actually has a lot of value. Less than two weeks ago, I shared that our old mastiff Karl had finally succumbed to old age. (Our vet put him to sleep while he was eating Burger King chicken fries and EZ spray cheese from a can. In a way, it was perfect.) People responded with heartfelt comments that made a difficult day a bit better.

And those dementia Facebook groups I have been talking about…A lot of people consider them lifelines. A place to vent when no one else is listening. A way to connect with people in a similar situation. A platform to share tips and ideas.

Where do you find love and support flowing between Trump supporters, Clinton supporters, Obama supporters, marchers for women, non-marchers for women, the pro-life and the pro-choice? It’s not a trick question. You see it in the private dementia Facebook groups. I know we are supposed to make America great again, but I see people of all backgrounds supporting each other and I think we are doing okay. (And I should add, not everyone in these groups is American.)

Obama’s staffers went through all of the letters addressed to him each day and forwarded ten that they felt represented where the American people “were at.” I’m not president of anything (except the exclusive and elite Cedar Valley Winery Club which includes myself and seven friends) and I don’t work in the White House (or a white house), but I thought I’d give myself a similar challenge today. I decided to do a very loosely-defined content analysis of the Facebook dementia groups and come up with ten points about where Dementialand “is at.”

I was originally planning to list these for myself so I could work on writing posts in the future that would be helpful to the dementia community. However, I decided I’d list them for you in no particular order.

Here we go:

10. Doctors don’t give whole person advice to individuals with dementia. A woman wrote a post recently about whether or not she should follow through on her doctor’s suggestion to schedule a colonoscopy for her mother, who was close to end-stage dementia. The crowd response was an emphatic “Hell no.” And I agree with the crowd. If you wouldn’t treat the illness, do you really wanna put someone through the test? My scientific (or not) Facebook analysis has also reminded me that some people in the medical profession do not understand that a procedure like an MRI, mammogram, root canal, or strep throat culture is likely to be anxiety-provoking for someone with dementia.

9. Families and friends don’t always get it. Caregivers need a break, and many people in their lives don’t understand the intensity of caregiving. One women finally got an opportunity to go to a movie when her sister-in-law agreed to watch her mom with dementia for a while. Then her sister-in-law sent her a text to ask if she could come home early because her mom was being annoying and asking too many questions. Facebook nation did not take kindly to the sister-in-law’s behavior.

8. The system is hard to navigate. Is there a way to get financial assistance for in home care? How does one see if they are eligible for Medicaid? What if they’re younger than 65? Are they eligible for a memory care community, or should I be googling nursing homes? The answers differ by state and situation, but what is consistent is that we ask people to navigate a challenging system at a time when they are already struggling to keep their head above water. Who wouldn’t want to play phone tag with a bunch of people when they are adjusting to their loved one’s declining health and increasing dependence?

7. Dementia is fatal, and we don’t tell people this at the start of the process. Although many people live a several years after being diagnosed with Alzheimer’s or a related dementia, most families don’t form an accurate picture of what “the end” will be like. We don’t prepare people for the final months, weeks, and days.

6. Dementia impacts emotion regulation. People don’t see this one coming. Dementia is about failure of the brain, and your brain regulates your mood. People with dementia may be irritable and moody. They may cry for no apparent reason. Caregivers aren’t prepared for the roller coaster of emotions. To be fair, people with dementia aren’t either.

5. It’s okay to wish for it to be over. I’ve seen many caregivers in Facebook support groups ask if they are bad people for wishing their loved one’s struggle to be over. And I’ve seen many virtual friends jump in and say they’ve felt the same way. It’s normal to hope for death when your loved one doesn’t have what you perceive to be an adequate quality of life. It doesn’t make you a monster. It makes you a human being.

4. Lots of people are being prescribed dementia medications without appropriate education. I cringe whenever I see a post about how Aricept is supposed to slow the progress of dementia. It makes me sick when I see a family member with hope that Namenda is going to make their loved one better. These medications only treat the symptoms and (at best) help people to function at a higher level. They do not stop or slow the progress of the disease. People with dementia may go through periods of time where they plateau, but they don’t get better. There is no cure.

3. Marijuana. Yep, marijuana. I am seeing more discussion of the use of marijuana to alieve anxiety among those with dementia. I’m not gonna comment on this because I haven’t done enough research to be confident in my opinions. Maybe I’m just afraid to go there. But, yeah, marijuana. I should probably get myself up to speed for when someone asks me about cannabis and dementia when I’m doing a presentation.

2. Food is love. When our loved ones with dementia struggle to eat, we will go to the end of the earth to find them something that is appetizing. We exchange tips to get people to eat. We will do anything to get 300 calories in Grandpa who is enduring the final stage of dementia. If we feed people, it means we love them. That’s why it’s so hard at the end of life to accept that our loved one just isn’t hungry anymore. And, no, a feeding tube won’t be helpful. It doesn’t work to force food into a system that is no longer equipped to handle food.

1.We are in this together. In my workplace, there were these two guys who had been what I would call office enemies (not even frenemies) for years. I would have thought they’d never get along, but they eventually did. Why? A woman whom they both disliked more than each other moved into our hallway. There is nothing like a common enemy to bring people together. Dementia is that common enemy. I don’t care who you voted for or what religion you are…as long as you hate something as passionately as I hate it. Then we’re a team. Then we can forget our differences because I’ve got your back.

Some people think that technology is making our society impersonal and disconnected. I could find some evidence to argue for that. However, I can also make the opposite case.

Dementia caregivers may not be able to leave the house much, but they can sit down at their laptop in the midst of a stressful day and ask for support from someone who’s right there with them. And be assured that somebody will be there to talk them off the ledge. Social media can be horrible, but it can also be pretty amazing.

Maybe our world isn’t going to hell in a handbasket after all.

P.S. My cheap self has impulsively decided to dish out $2.99 per month to WordPress to be “ad free.” Although I see people on reality TV shows with the title “professional blogger” under their mug, I have not yet figured out how to be a professional in the sense of actual turning any profit, even if small, from this blog. And now I’m out $35.88 over the next year. I mention this because I have been accused at times of shamelessly promoting my blog for my own gain. I haven’t figured out exactly what that gain is yet. For the record, I am not a professional blogger. If you have ideas on how I can become a professional blogger and make enough money to buy a vacation home in South Carolina, give me a shout out. Until then, I will keep my day job.



5 thoughts on “The Unfiltered Story of Dementialand (a.k.a Why Facebook Isn’t Totally Terrible)

  1. I can not sell my house, I am thinking about retiring soon as a nurse, and my mother has 24/7 care in her home for ALZ, and both grandmother’s died of ALZ. I watched the PBS show about ALZ and how we will be so short on care facilities and caregivers and that some states are actually restricting the licenses for such facilities to keep there Medicare state expenses down (Vermont). This looks like a perfect storm for chaos in many American families and it scares me to think I am just a few family members away from calamity with my own mom. Does anyone out there have experience starting an adult day care facility that is drop in or daily for adults with dementia? I would very much like to look into this and would love some tips from experts. I looked into the state licensure process and it isn’t that complicated (NE). Would love any recommendations from you and your followers. I think most people determined to keep their parents in their homes just need a place to go for emergency respite or daily day time care, and then pick up their mother or father on the way home from work or errands. Makes sense to me but is it being done well anywhere?


  2. I am so very grateful for you, Elaine … an honest and compassionate voice, advocate, educator, and friend. Your writing of reality is such a welcome gift to folks like me. 😊


  3. For people who aren’t used to Facebook, perhaps you could let them know that there are some quite specific groups; for example, there’s the Association for Frontotemporal Dementia but there’s also FTD Spouse which is only for spouses of people with FTD. The latter means that one needn’t worry about spouse, family,or friends reading the posts. I wonder if there’s a site for bvFTD-slow progress but I assume that would be hoping too much.

    Thank you for your blog. It informed me so that I knew to help a woman in the airport.


  4. This is a powerful post Elaine. It made me cry. As I read your list of 10, I found myself relating and reacting to each and every one. I plan to reach out on FB to dementia support groups. It never occurred to me that something like this would be found on FB. I’m looking forward to joining a community of caring individuals.

    Thanks so much for writing. You provide so much information for those of us touched by dementia. I’ve learned a lot, and for that I will always be grateful.


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