I attended Digital Book World in Nashville last week. It’s always inspiring to be surrounded by authors and others in the publishing industry who are pursuing their dreams and creating worthwhile projects.
It came as a bit of a surprise to me that voice-activated technology was among the biggest trend. As a writer, I’ve always concerned myself with the written word, whether it was in print or more likely, digital form. While I’m aware of voice-activated home devices like Alexa, and own one, I never thought about storytelling through such devices. Well, I learned last week that plenty of people are thinking about voice-first as an emerging platform for authors.
While many of the early examples and success stories involve children’s stories, I started thinking about how those of us involved in elder care may be more familiar with voice-activated technology than we think. Life Alert’s, “I’ve fallen and I can’t get up,” slogan has become a meme, but the company developed one of the earlier forms of a voice-activated devices that was adopted by the masses and has helped save countless lives.
Now there is a focus on using voice to create entertainment options, and I can think of ways this could benefit those with dementia. Witlingo’s Drill Skills could be useful for dementia caregivers to engage their loved ones in a fun mental exercise. Those with dementia who can no longer read longer works may enjoy the shorter “microstory” format that voice first publishing uses.
I will be following the developments in voice first publishing and look forward to seeing how it could be used by caregivers to entertain and engage their loved ones.
I think all caregivers end up on a guilt trip at some point, but this blog post from gerontologist Dr. Elaine Eshbaugh is another good reminder to let go of that guilt. She discusses the negative emotions that many family members feel when placing their loved ones with dementia in a nursing home, and why caregivers shouldn’t be so hard on themselves.
And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.” I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.
via Nursing Homes and Guilt Traps in Dementialand — Welcome to Dementialand
I’m excited to announce that The Reluctant Caregiver, my collection of caregiving essays, has been published and is available on Amazon and most digital bookstore platforms. It will be available as a paperback soon.
Those of you who have followed The Memories Project for awhile know that I’ve been talking about publishing such a book for quite some time. It was very satisfying to hit the publish button.
I hope you’ll consider reading the collection, and telling others about it. Do keep in mind that the book presents a nontraditional perspective on family caregiving, and does contain some profanity. There are some graphic details about caregiving included in the essays, but also some humorous moments.
I think many caregivers will be able to relate to the roller coaster of emotions that accompanies any caregiving journey. I try to capture the good days and the bad days, the inspirational moments and those trying times that have sparked my interest in being a caregiver advocate. My ultimate goal is to reassure those caregivers who may be struggling, and to encourage caregivers to reach out if they need help.
Where to buy The Reluctant Caregiver:
Other digital bookstores (including iBooks): http://books2read.com/u/3L9DnN
I’m available as a guest blogger and if you are promoting a book yourself, please reach out to me for cross-promotion opportunities.
Thanks for your support of The Memories Project. The feedback I’ve received from the blog and the connections I’ve made have helped turn The Reluctant Caregiver project into a reality.
A local story caught my interest today. It’s a sad one, and a story that no one wants to hear, especially if you have a loved one in an Alzheimer’s care facility. The caregivers at a metro Atlanta memory care center are facing 72 abuse-related charges. The allegations include restraining patients with bedsheets, throwing water at patients and putting multiple diapers on patients so they wouldn’t have to change them as often.
The facility was immediately shut down and both current and past caregivers will have their day in court. The most surprising aspect of the case to me was the interviews with the relatives of patients who were residing at this facility. The ones the local news interviewed were shocked by the allegations. One woman had even moved her mother from another facility to this one because she was receiving inferior care at the first facility. No one interviewed had seen anything related to the charges filed. Either the case is overblown or the caregivers were good at hiding their abusive actions.
The relatives were also upset about having to “claim” their loved one at a moment’s notice, since the facility was immediately shut down. It is a shame that there is not some safety net in place so that families are not left looking for another care center on their own while having to take care of their loved one at home. (One woman said it took months to find the right center, and I’ve read stories from bloggers who have said the same thing.)
The takeaways from this case for me is to really look at a care center from top to bottom as objectively as you can. Try to visit outside of normal business hours if possible. With Dad, we were not able to visit as regularly as we’d have liked, but with Mom I was there almost every day. Did it make a difference? I feel like they received a similar quality of care but I felt more in control by being a daily presence. Of course, visiting daily is not viable for everyone and should not be required for your loved one to receive compassionate care.
The second takeaway for me is having a backup plan. If the facility where your loved one resides is suddenly shut down, are you prepared to house them indefinitely? I know my house with stairs is not safe for a dementia patient. If you have siblings or other relatives, have you discussed with them if they would be willing to provide temporary housing? Taking in a dementia patient requires 24/7 care as we all know. Are there sufficient at-home services in your area? I know where my mom lives, the home care resources are very limited.
A tragic case provides some food for thought.
I’ve written about this before, but it is worth beating the drum again. Dementia care is expensive. If we think the past few years in the U.S. were bad with the housing crisis and the rising unemployment rate, just wait until dementia meets the baby boomers in a terrible perfect storm.
What this most recent study reveals is something that family caregivers of dementia sufferers have known for quite awhile. It’s not medical care that most dementia patients need, but the necessity of institutional or professional home care that drives up costs astronomically. The per-person cost was estimated to be between $40,000-$60,000 per year. My father only required a year of institutional care, but my aunt that recently passed away who had Alzheimer’s spent the last several years of her life in a facility. You do the math, it’s depressing. The average family will go bankrupt very quickly if something is not done to remedy this situation.
As I’ve said before, I don’t know what the answers are. If there were more support, financially and otherwise for family caregivers, some families would choose to keep their loved ones with dementia at home for longer. I’m not a fan of more taxes or government programs, but it does seem as a government and as a society we are letting down the elderly generation. We pay property taxes so children can get a free public education. Fine. But what happens after you grow up, you work all of your life, pay taxes while saving up as much as you can, and then your mind gets sick? You lose everything and it becomes a family problem.
Really though, Alzheimer’s is a world dilemma. Whether or not it touches everyone’s family directly, this disease has a lasting impact on society.
A new community for those suffering with dementia is being built in Switzerland. It’s been nicknamed by locals as “Dementiaville” and what makes it unique is that it is a fully-functioning village designed to mimic the 1950’s era. Caregivers will dress up as gardeners, shop assistants, hairdressers, etc. while taking care of the residents, who will be free to roam throughout the village and who will reside in home settings with a retro flair. It’s a fascinating concept and I’m eager to see how it works out.
I think my dad would have liked a community like this. I often thought of him as being stuck in a time warp, because even when he was mentally sound, most conversations with him centered on topics of the past, such as World War II, Hollywood’s silver screen era, the Kennedy family and the great crooners like Frank Sinatra and Bing Crosby. I’m sure it’s natural for many people as they get older to start to feel out of touch with the modern world around them, but for my dad, I felt like he really had a soft spot for say, the early to mid 1960’s. I’m not sure if he would have preferred New York City, where he first lived after immigrating to this country from Ireland, or if he would have liked Los Angeles better, where he met my mom and raised his family.
I once wrote about my dad for a college paper: “He would have liked nothing more than to step back in time and never leave the past.” It sounds like with this new residential concept for dementia patients, my dad could have done just that.