My Spouse Has Dementia Zita Christian

For a person with Alzheimer's or other form of dementia, wandering can be dangerous. If that person isn't found within 24 hours, the chances that he or she will suffer serious injury, even death, increase dramatically. The family dementia caregiver will likely experience serious stress until the loved one is found. 
According to the Alzheimer's Association 6 in 10 people with dementia will wander. A person with dementia might lose the ability to recognize familiar places and faces. Losing that ability can happen at any stage of the disease.
Connecticut has partnered with the Alzheimer's Association to offer a state-wide registry to help police and first responders locate people with dementia who have wandered. The program is called "Bring Me Back Home." 
When you register your loved one on the program, you'll be asked to complete a form. It asks for a lot of information. Even if you don't live in Connecticut, download the form. Pay attention to the information the authorities find helpful in finding a person who has wandered. 
The Senior Services Department of UPMC (Universithy of Pittsburgh Medical Center) also has a form that can help first responders if your loved one has wandered. That form is called "Wandering Behavior: Individual Profile." You can download it for free, too. 
If you're a family dementia caregiver and you're suddenly asked to provide information about your loved one, you might be under too much stress to remember everything in the moment. So download one, or both, of these forms. Start filling them out now. Have the information handy should you ever need it. 
 
Mentioned in this episode: 
Alzheimer's Association 
Register to the Bring Me Back Home Program
UPMC - Wandering Behavior: Individual Profile

Your spouse has Alzheimer's. You know he - or she - shouldn't be driving. When you bring up the subject, you hear some version of, "That's ridiculous! I know how to drive a car." 
He might be right. He might still know how to drive a car. The problem is that he shouldn't be driving a car. 
No, this isn't a simple matter of semantics. Your spouse may still have the muscle memory to operate a motor vehicle. That doesn't mean he remembers the rules of the road. At some point, the muscle memory fades, too. Plus, medication may cloud both physical and mental functions. 
Getting your spouse to give up the car keys is traumatic for both of you. For weeks, my husband stood at the window and stared at the spot where his car used to be. I watched from the kitchen, knowing we were both at the threshold of a major change in the progression of the disease. 
In this episode, I share some of my own stories, as well as those of my friends. 
Some states require that when a doctor diagnoses dementia, the doctor must report the diagnosis to the state's department of motor vehicles. There's an article about that on MedicalNewsToday.com. 
Not long ago, a personal injury law firm in West Virginia contacted me about a guide the firm had created titled "Dementia and Driving." The guide talks about when a person should stop driving. It gives a list of things to watch for and includes additional links you might find helpful.  
Alzheimer's robs a person of so much. When it comes to driving, you might feel that you're robbing your loved one of even more. It all comes down to your need to be observant, patient, realistic, kind, brave, and responsible.
There's so much at stake. 

Mary Lou Falcone became a caregiver when her father had a massive stroke. She was 10 years old. The experience prepared her for the day, many years later, when her husband, illustrator and 1950s rocker Nicky Zann, was diagnosed with Lewy Body Dementia (LBD). 
In her memoir, I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, Falcone talks about what it was like to have an international career, to be thought of in their social circles as "the golden couple," and then to face the cruel reality that the love of her life had an incurable, fatal disease.  
Falcone talks candidly about three of the most challenging aspects of caring for a spouse with dementia, especially LBD: incontinence, violence, and hyper-sexuality. 
She also shaes the challenges she faced in writing the memoir, particularly when her second editor guided her to reveal the deeply buried emotions that resulted in this personal and poignant story, a winner of the 2023 NYC Big Book Award "Distinguished Favorite" in the category of Caregiving. 
Falcone also shares an overview of the differences between LBD and Alzheimer's Disease, why it can be difficult to get a diagnosis, and her ongoing work as an advocate for LBD awareness. 
The interview portion of thie episode was originally recorded for a show on YouTube called "Page 1." Here's the link to see the video version of this podcast episode. 
The video version on YouTube includes a PSA created to honor my husband's memory. In the PSA is a photo of me and my husband at a wedding reception in 2017. Several hours after that photo was taken, he was rushed by ambulance to the ER. He had choked on a piece of meat. 
The PSA also includes a brief video I took one morning while my husband and I were hiking around a local reservoir. 
For more info in Mary Lou Falcone and her book, see her website: MaryLouFalcone.com  

Sometimes, the dreams we carry inspire us. Then life changes, especially if your spouse has dementia. Now, those same dreams weigh us down… and we have to let go. Advertisements for some memory care facilities and some dementia service agencies don’t help. I find those ads insulting. 
 
You’ve read the message in blogs and brochures.  Depending on where you and your spouse are in the dementia journey, you’ve probably had at least one person from a memory care center or caregiving agency look you in the eye and say – as though they understand exactly how you feel – that they stand ready to take on the burdens of dementia care so that you can go back to just being his wife.  To which I say: What do they think marriage is? One big date? … That when things get tough, the spouse will bail? 
 
My rant is NOT about whether a caregiver is physically weak or strong, emotionally delicate or resilient. People are different. Their experiences are different. Their physical capabilities are different. 
 
My rant is NOT about whether or not you care for your spouse at home or you place your spouse in a memory care facility.  People are different. Their home situations are different. What kind of support they have is different. 

My rant is about advertising that assumes spouses don’t want to take care of the personal needs of their spouse.

This is a cautionary tale about a dear friend, a family caregiver who died first. She was in her mid-70s, a few weeks younger than I am. In mid-April, she had a stroke. She died mid-July, just as I faced the one-year milestone of my husband's death from Alzheimer's. Her death emphasized the reality of caregiver stress and the importance of caregiver support. 
You may not have time to listen to this episode now. You may start and find it triggers something personal and painful.
So here's the one piece of advice I share in the epiode. I hope you will embrace it. My neighbor said this to me last week as I sat on her deck, crying:  Keep living until you feel alive again.