(This article appeared previously on Caring.com.)
“What do you know now about dementia that you didn’t know five years ago?” asked a friend who has shared my struggles with caring for cognitively-challenged parents.
Where do I begin? Responding to repetitive statements and questions used to drive me crazy. It doesn’t anymore. I’ve found an unexpected reservoir of patience. Taking over financial and legal matters was daunting, but I’ve learned to oversee mom’s affairs and now have the routine down.
Perhaps the biggest lesson I’ve learned as a dementia caregiver is that there are helpers out there, both in person and online. If I’m facing a challenge related to caring for a loved one with dementia, someone else has likely been there, done that.
I am somewhat of a stranger to myself, so I must really be difficult for my wife and son to understand.
— Anonymous Lewy body dementia blogger
Reading blogs dedicated to Alzheimer’s disease and other types of dementia — and the roughly 15 million Americans who provide care for loved ones with dementia — helps enormously. If you’re looking for community support with a personal point of view, do yourself a favor and check out these 10 sharp, dementia-related websites. I chose them for their wisdom, diversity, humanity, information and humor in the face of a situation that, on the surface, is far from funny.
Packed with everything from tips on spotting early warning signs to fighting elder fraud, author Kay Bransford’s blog helps other caregivers based on what she has learned from managing her parents’ dementia. Several organizations provide helpful information, but blogs like Bransford’s also offer caregivers the human-to-human connection you need when you’re struggling to cope.
“My mom stopped liking her favorite foods and my dad stopped joking around,” Bransford writes in one entry. “Some changes were subtle while others were so overwhelming and no one else seemed to notice — then a dear friend suggested I start to mourn the loss of my parents. Gut-punched.”
In March 2012, Cassandra Jones’ mother was diagnosed with semantic dementia, a rare form of the disease that impacts the brain’s language control center. While semantic dementia took over her mom’s ability to speak, Jones found her own voice by writing about caregiving. She launched Dementia Diaries as a way to chronicle her experiences caring for her mother.
“Five years goes by in a blink,” Jones wrote recently. “I’m fairly certain that we don’t have another five years with her; I’d be surprised if we have two (although I never thought we’d make it this long!). But as long as she is here, I will continue to love her and care for her to the best of my ability. Like my dad said, one day we’ll miss this.”
The thing I like best about this blog, written by a man who doesn’t provide his name, is how frank he is about his disease. He started writing about Lewy body dementia in 2009, sharing his diagnosis, interactions with doctors and medical specialists, fears for himself and his future and, most touchingly, his relationship with his wife.
“I do not like who I am now,” he shares in one entry. “I am somewhat of a stranger to myself so I must really be difficult for my wife and son to understand. This truly is a cruel and perplexing disease.”
In another post he writes, “I have watched how different diseases impact married relationships… I see spouses of dementia patients that protect their spouse and shield them from life. And I see spouses who dump their spouse in assisted living and never visit them. This ‘disease divorce’ happens in all debilitating diseases that I see here.”
Kathy Ritchie left her job in New York City in 2006 and moved to Phoenix to be her mother’s primary caregiver. You know the outcome of that decision immediately when you read Ritchie’s blog, which she started soon after her mom was diagnosed with multi-infarct dementia when Kathy was 31 and her mom was 71. Her mother died in 2015, but Ritchie’s blog remains a highly personal account of managing illness and mourning loss.
The resources and insights Ritchie offers are as timely now as they were 11 years ago when she started, and her public story of someone so young who changed her life to accommodate her parent’s needs will resonate with other younger adult caregivers coping with a parent’s disease. “As young adult caregivers in our 20s and 30s, navigating the demands and challenges of our own lives — personally and professionally — with that of our parent’s disease is hard,” Ritchie writes.
Blogger Rachael Wonderlin is a dementia-care consultant with a master’s degree in gerontology and the author of When Someone You Know Is Living in a Dementia Care Community. What you notice immediately about her blog isn’t the dementia-care tales, tips and suggestions. It’s her fresh approach. “Dementia care is my passion,” she writes. “I’m always looking for new ways to connect with caregivers.”
In particular, two of her posts stood out to me. In “10 Steps to Making a Dementia Care Plan” she gives actionable advice that includes “Find respite care” and “decide what you’re going to be doing about that person’s driver’s license.” And in “16 Things I Would Want If I Got Dementia” she says, “If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.”
What do you get when a health expert, former nurse and current writer turns her focus on her own experience living with dementia? The result is one of the best blogs on the subject. “Living well with dementia is all about adapting,” writes British blogger Wendy Mitchell, 60, who was diagnosed with early onset Alzheimer’s disease in 2014. “Adapting to new ways to enable us to live better for longer with dementia.”
“I started my blog to allow me, in the first instance, to write all my thoughts before they’re lost,” she told online news site HU12 last year. “I have calendars that take care of the future, but this blog serves as a reminder of what I’ve done and said in the past. It now serves as my memory.”
Written by a woman who goes simply by her first name, Laurie, this blog focuses on how someone can come to terms with dementia — which Laurie has been attempting for four years — along with insights into the disease for caregivers. My favorite parts of the blog are the relatable pop culture touchstones she shares in her poignant and often humorous posts.
In a recent post, she compares her illness to a Christmas tree: “Dementia doesn’t just happen overnight. Think of a beautiful tree all decorated with lots of new lights, ornaments and ribbons. One day, one of the bulbs start to flicker. You tap it a little and it goes back on. Over time, another starts to flicker, and another. Sometimes you can get them to come back on and sometimes they will not come back on.”
In another post, she ponders whether popular children’s book character Winnie the Pooh had dementia, based on his utterings such as “‘When you are a bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thinkish inside you is quite different when it gets out into the open and has other people looking at it.'”
Click on this blog and under the title you see the subhead: “Dedicated to my dear wife, who is still — recognizably and remarkably — the same person I have known and loved since 1995.”
The man who writes this blog (or did until September; it hasn’t been updated) remains anonymous. That can feel at odds with his intensely personal posts. His wife first attended a memory clinic in 2000 when she was 52, and went through what he refers to as a “marked decline” in 2011 when he started the blog. He shares the frustrations many feel while waiting for a clear, specific diagnosis, which may, in fact, never come.
Through posts that both share information as well as the minutiae of what a caregiver must deal with throughout endless doctors’ visits, his dedication to his wife and to enjoying whatever quality time together they can shines through.
Along the way, he provides direct support like the following to other caregivers: “The most important thing to remember when thinking about all the issues around caring for someone with dementia is everybody is different. People often pay lip service to the truth of this statement, then these same people go on to make sweeping generalizations about people with dementia.”
No longer a singing rhinestone cowboy, country music icon Glen Campbell was diagnosed with Alzheimer’s disease in 2011. His wife Kim now writes this blog urging caregivers to take care of themselves and shares new research and information about dementia and Alzheimer’s disease. As Kim told The Charlotte Observer last year: “You can’t become the second victim of this disease.”
One of the best recent guest posts on the blog focuses on the importance of identifying the type of dementia your loved one has, so you can best forecast what to expect. It’s especially useful since so much caregiver worry and heartache is caused by not knowing what to anticipate.
“It can help to understand what is happening to your loved one if you think of the four dozen or so different forms of dementia as being like infections,” Dr. Tam Cummings writes on the blog. “Many dementias start in specific areas of the brain, which also helps us identify them. This includes the multiple categories of the Alzheimer’s dementias, the Lewy bodies dementias and the frontal temporal dementias or FTDs. The type of dementia a person has generally determines how the disease will progress throughout the brain.”
The blogger’s bio reads, “I am Lyn’s sister. She’s in her 40s, intellectually disabled and has Alzheimer’s. I’m here to tell her story and learn about dementia along the way.” While I’ve seen a number of blogs by partners and spouses, I haven’t found many from siblings caring for another sibling. There is a genuine sweetness and light humor to this blog that complements the tips, resources and experiences of Lyn’s sister (the only name we know her by).
“Yesterday morning, as Lyn and Mom were watching the Macy’s [Thanksgiving] Day Parade, Mom asked Lyn what she was thankful for,” Lyn’s sister writes in one of my favorite posts. “Lyn responded with ‘Christmas!’ Mom suggested there were other things to be thankful for, such as living in New Mexico, their home and their family. Lyn thought for a second and then stated, ‘I only have one brain cell today. You’re going to have to wait for me to think.’ Mom struggled not to laugh at her response.”
As Mom cut their pieces of pie for dessert, she tried again. “‘Is your one brain cell able to say what it is thankful for?’ She shook her head and said: ‘for you.’ Mom thanked her and asked if there was anything else. ‘No, I’m good.'”
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