This story out of Alabama is tragic on so many levels. Neighbors called police to perform a wellness check on an elderly couple, one who has dementia. The neighbors reported not seeing the couple for months. When the police arrived, they saw the woman who has dementia moving about the home. Through a window they could see her husband, clearly deceased, on a bed. When the police gained access to the home, they found the woman with dementia in poor health, and two dogs that they believed starved to death. Authorities believe the woman lived with her dead husband in that home for at least a month.
We must strengthen our communities to prevent heartbreaking tragedies like these from happening. In our modern society, it seems we have discarded a true sense of community. I keep to myself and do not socialize with neighbors; I live in a big city and while the neighbors seem harmless enough and I speak to them in passing, urban life tends not to encourage close neighborly relations. I did spend an hour tracking down my neighbors across the street to let them know they had left the trunk of their car wide open, so I’m not completely cold-hearted. I work from home so I naturally observe the routines of my neighbors. If I knew I had a neighbor with dementia, I think I would pay more attention. Of course, people have a right to privacy so communities can’t advertise who has dementia even if it is to provide assistance.
I’m not sure what the answer is but there does need to be more safety nets for our elderly population. Not everyone has children or a group of close friends or family members to check up on them. We shouldn’t let these people fall through the cracks, and end up in tragic situations like what occurred in Alabama.
Does your community offer any programs that check-in on seniors to make sure they are safe?
UsAgainstAlzheimer’s recently sent out an email about planning for your parents’ future, if/when they become incapacitated in body or mind and are unable to care for themselves anymore. The message stressed how important it is to have “the conversation” where you discuss these difficult topics with your family and develop a plan just in case it is ever needed. Of course, I think this is the smart and right thing to do and would encourage all families to do this.
But from my personal experience, easier said than done. As I’ve mentioned before on this blog, my dad had a fear of death so he never wanted to broach the subjects of becoming ill and dying. My mom, ever the chipper one, would respond to my encouragement to fill out the will paperwork by saying, “Well, you already act like we have one foot in the grave. We’re not dead yet!”
I’m hoping that with the baby boomers, such discussions won’t be viewed in such a taboo fashion. And as long as Generation X and younger can fill out a form online, they’ll probably be willing to do it. While the younger generations certainly have earned some fair criticism about their navel-gazing tendencies, in this case, it is a good thing to sit down and spell out exactly how you want these aspects of your life to be. The more introspective, the better!
For those of us who have family members with dementia who did not plan ahead, you often feel like you are stumbling through the dark, hoping you are doing the right thing, but the uncertainty can haunt you in the middle of the night. My dad was afraid of dying, but if he could have understood what his sad reality was going to be with Alzheimer’s, would he have been more inclined to be a DNR? I’m not sure, but I am plagued by what the doctor on duty at the nursing home said the day Dad died. The DNR instructions from the hospital did not make it to the new facility, and the doctor said he thinks the EMS worker broke Dad’s ribs when performing CPR on him. That should not have happened. We as a family should have triple-checked about the DNR order. That’s why it is so vital to discuss these things before an emergency arises, because no one is in a proper frame of mind at that point.
What tactics have worked in your family to discuss these sensitive end-of-life topics?
I am very excited to announce that a story that I wrote about my father, called “French Toast,” will appear in a special edition of the popular “Chicken Soup for the Soul” series. This edition features stories about living with Alzheimer’s and other dementias and is a joint project with the Alzheimer’s Association. All royalties from this special edition will go directly to the Alzheimer’s Association. The book will be released on April 22, 2014.
I am thrilled to be a part of this upcoming book, especially for a publisher as popular and well-respected as the “Chicken Soup for the Soul” folks. From thousands of submissions, 101 stories were chosen to appear in the book. I look forward to reading all of the inspirational stories.
If you’re wondering how I came about submitting my story, it was really just by chance. I was doing my daily “looking for paid writing gigs” web search and was on the Work-at-Home Moms website. Now I’m not a mom (unless you count the pets) but I find that their website sometimes posts opportunities I don’t see elsewhere. It was on their website that I saw the “Chicken Soup for the Soul” callout for Alzheimer’s and dementia stories. I said to myself, “Why not?” I submitted two stories: a depressing one and a funny one. The funny one was accepted.
One of the main goals I had in mind when starting The Memories Project blog was to raise awareness, not just for Alzheimer’s but for family caregivers as well. I’ve virtually met so many wonderful people through my modest but loyal following. The dialogue we have has educated and inspired me and lifted my spirits. Yet I know so many others are struggling silently and I hope by being able to get out the word on a larger platform, more people can get the support they need.
To prepare for the upcoming release of the book, I’ve added a couple of pages to my blog: media appearances and publishing credits. If you or someone you know would be interested in a copy of the book, an interview or a guest blog post, feel free to contact me directly at firstname.lastname@example.org.
I was reading an interview with Gail Sheehy in Today’s Caregiver magazine. In it, she talks about the caregiving journey being akin to navigating a labyrinth. When you make your way through a labyrinth, you must follow the path as it is presented to you, even it takes you forward and then suddenly reverses, taking you back several paces before veering off again. Sheehy talks about requiring patience and faith to reach the center. This can be spiritual faith or faith in nature, yourself, etc. Once you reach the center, think about the physical state of your loved one. Are they on the mend or are they declining? If it is the latter, Sheehy states that you need to accept that you and the loved one you are caring for are on two separate journeys. Their journey through the labyrinth will result in their departing this world soon, where as you must find the path back to your life. Sheehy warns of not sacrificing two lives for one, as she has seen many caregivers do who fail to take care of themselves during their caregiving period.
To me, the concept of a labyrinth perfectly describes the caregiving journey. We move forward, then a setback moves us backwards. We learn more the more time we spend on the caregiving journey. There are frustrations along with successful moves. Eventually, we all reach the same path that includes our exit from this world, but as caregivers we have to recognize that we can only go so far down that path with our loved ones.
Sheehy also discusses the crisis points that caregivers experience and how they can better manage these stages. Sheehy stresses that caregiving should never be a solitary journey; to protect your own health you need to form a circle of care to support you. Easier said than done for many of us, but I think Sheehy’s ideas should receive widespread adoption and community resources should be directed towards these concepts.