If your loved one wouldn't understand or know what to do if the police called your home because you'd been in an accident, you need to wear a medical ID bracelet. With the right info, it alerts first responders that your spouse has dementia. ...
If your loved one wouldn't understand or know what to do if the police called your home because you'd been in an accident, you need to wear a medical ID bracelet. With the right info, it alerts first responders that your spouse has dementia.
Check out LaurensHope.com for a variety of medical jewelry.
Please join me on Facebook at "My Spouse Has Dementia." By sharing our stories, we can help each other survive.
I wear a medical ID bracelet. It’s not ugly. It’s not clunky. And, fortunately, I don’t have any medical issues. But there IS a medical emergency message engraved on my bracelet. If you’re the spouse of someone with dementia, you need a new piece of jewelry. You might also need sleighbells.
My husband was diagnosed with dementia in 2014. In the first few years, I was certainly concerned but I wasn’t alarmed. That changed in 2017. That was the year we stopped going out to eat. Being in a restaurant, even our favorite neighborhood restaurant, made him anxious. He couldn’t read any more. When the server came to take our order, I’d say something about leaving his glasses at home, then I’d order for both of us. The restaurant didn’t have a family bathroom, so that became a challenge, too.
That year, 2017, was also the year Dick had to give up the car. He hadn’t been driving for over a year, but his car was still parked in front of our house. (That’s a story for another time.)
That was also the year he had the worst of the nightmares. One in particular was so violent, so threatening, I slept in the guest room for three nights…with the door locked. I contacted his neurologist who adjusted one of his medications. It worked. Dick still has nightmares now and then but nothing like the ones in 2017.
I officiated a lot of weddings that year. I married couples in Connecticut, Rhode Island, and Massachusetts. Dick often came with me to the rehearsal. I’d find a quiet place where he could sit and watch. As long as he could see me, he was fine. Rehearsals are casual, filled with laughter, families smiling, couples kissing. Dick enjoyed the atmosphere. I enjoyed having him with me on drives that were often an hour, sometimes two.
Eventually, he couldn’t simply sit and watch. He couldn’t remember where he was, or why he was there. He’d get up and take a walk. Worrying about my husband meant I wasn’t being fully attentive to the rehearsal.
So I told Dick that from then on I needed some quiet time before the rehearsal, that it would be best if I went alone. In the years that followed, that was one of many little lies I would tell my husband.
On the day of a wedding, my neighbor would come over and stay with Dick. If she wasn’t available, I’d ask my daughter, Laurie. As willing as both women were, I knew I had to make other arrangements. My neighbor is a busy woman and my daughter, also a busy woman, lives 90 minutes away. And, now I needed someone to stay with him for both the rehearsal and the wedding. Over several years, I tried working with several caregivers, through both private arrangements and through agencies. For a variety of reasons, they didn’t work long-term.
I decided to book only half the number of couples I usually serve. When arranging for help still proved too troublesome, I decided to put my work as an officiant on hold. Couples book me anywhere from 8 to 18 months in advance, so even though I decided not to book any new weddings, I still had several on the calendar for that year and the next.
Again, I asked my daughter for help. Depending on the time of the ceremony, she might have to come to my house the night before, or spend the night on the day of the wedding. She always said yes. I went back to my neighbor and asked her to cover the rehearsals. She said yes. I assured both there would be no additional dates.
I’m telling you this story because if you’re a caregiver of a spouse with dementia and you don’t have family or friends who can help, your world is going to shrink. Every patient is different so there’s no way to predict what part will shrink, how much will shrink, or how fast it will happen, but your world will shrink. You might find you don’t have the time you once had. Or maybe you won’t travel as far as you used to – not only for day trips but for simple errands. And forget about vacations. Disrupting your spouse’s daily routine can be a real source of anxiety for your spouse.
The neurology nurse I work with explained that a healthy person can experience a disruption in routine and recover. Not so for a person with dementia. Recovery is much slower. If the disruption is serious, the person might not recover at all. I do what I can to maintain a routine.
If Dick is sitting in his recliner and I’m in the dining room, he can see me. If I’m in the kitchen, he can hear me. But if I’m upstairs in my office, he can’t see or hear me. So he calls out, “Help me. Help me. Help me.” I come downstairs. There’s nothing to warrant the alarm. He’s not in any kind of physical pain, or danger. He’s not hungry. He doesn’t have to use the bathroom. It’s not time for his meds. He’s alone in the room. And I think feeling alone makes him feel unsafe. It scares him.
So now in addition to the desktop computer in my office, which is where I prefer to work, I keep my laptop in the living room. And I’ve turned the dining room into my sewing room. I used to keep my sewing machine and fabric in the basement. Turns out, I like sewing in the dining room. I get to work in natural light and Dick can see me. Right now, I don’t have the big room in the basement that I used to have. My dining room table is covered with yards and yards of linen and lace. I’m learning to live with the mess.
Medical ID Bracelet
An early symbol of my shrinking world came in the form of jewelry.
At Christmas of 2018, or maybe it was 2017, Laurie gave me a medical alert bracelet. As I said at the beginning of this episode, the bracelet wasn’t ugly, or clunky. The centerpiece had a rose-gold finish. The band was a series of heart-shaped links. The rose-gold hearets were solid, the silvery ones were open. It was quite pretty. Still is.
I didn’t have a medical condition that warranted wearing a bracelet. But the bracelet really wasn’t for me. On the back of the centerpiece were three lines of text. Keep in mind there’s not a lot of space. The first line was my name. The last line said “ICE” for “in case of emergency” followed by my daughter’s cell phone number. The line in the middle said: “Husband w/Alzhmr.”
Think about it. Imagine that I’m on the road somewhere. Dick is at home alone. I have an accident and am unconscious. The police would get my driver’s license and call my home. Dick would answer. The police might say something like, “Your wife has been in an accident. The ambulance is taking her to xyz hospital.” And let’s just say xyz hospital is an hour away.
Under ordinary circumstances, the police would assume that Dick understood the message. The police would hang up and assume Dick would soon be on his way to the hospital. But if they checked for a medical alert bracelet (which they do), they would know right away that my husband has Alzheimer’s, that he probably wouldn’t understand the message, that he might become agitated, that he certainly shouldn’t be encouraged to drive a car. – And all of that is assuming he could still answer a phone.
I realize there are a lot of flaws in that scenario, the biggest being that I would have left him alone. Still, the basic need for that bracelet is clear. If your loved one has reached the stage that he or she can’t comprehend and act on emergency information, particularly if the information is about you, you need a medical alert bracelet.
Laurie found mine at “Lauren’s Hope - Med ID Jewelry.” The website is laurenshope.com. They have necklaces, bracelets, and cuffs. They have styles for men, women, and children.
Sleighbells Ring – On Your Door
Sometimes, you are the one who needs to be alerted.
If your spouse is given to wandering, you need to either find a way to lock the door from the inside – like having a deadbolt that opens with a key from the inside. Of course, if there’s a fire and you’re inside and you can’t find the key to unlock the deadbolt, well, you see the problem.
Or, instead of a deadbolt on the inside, just make sure you know whenever the door is opened.
I do say “if” your spouse wanders because not everyone with Alzheimer’s or other dementia wanders. My husband hasn’t yet seriously wandered off to parts unknown but he has gone for a walk around our condo complex and gotten confused. I talk about that in episode #3.
It’s important to remember that an incident is not a pattern. But if your spouse does wander off – even just one time – that could be one time too many. An easy and inexpensive solution is to hang a generous cluster of sleighbells on the doorknob, or on a hook at the top of the door – that’s the front door and the back door. You need something that will make noise whenever the door is opened.
Prepare for a Silver Alert
If you’ve listened to the other episodes, you know my husband is … was…a hiker. He likes to walk. He likes to be outside. I’m a planner. A year or two after Dick was diagnosed with Alzheimer’s, we went down to our local police department. I said I wanted to meet with a community officer.
I explained that Dick has Alzheimer’s, that he likes to walk and that should he get lost, I wanted the police to have whatever information they needed, in advance, in order for them to issue a Silver Alert. The officer asked questions, took Dick’s picture, and thanked us for being pro-active.
Alzheimer’s is a disease that progresses at a different pace for different people. You might not think it was necessary for Dick and me to go to the police department and plan for something that might never happen. But, at whatever pace the disease progresses for your spouse, you’re the caregiver and it’s easy to get overwhelmed. If your spouse does wander off and you do need to call the police for help, you might not have a photo handy. My point is: do what you can in advance.
While we were at the police department, the community officer told me that should Dick fall and I needed help getting him up, assuming he wasn’t injured, I should call the dispatch desk, not 911, and say I needed lift assistance. They would send someone to our home, no sirens, no flashing lights. Obviously, if Dick fell and were injured, I would immediately call 911. In addition to my cell phone, I still have a landline. And I’ve taped the police dispatch number on every handset in the house.
Look, if your spouse just got a dementia diagnosis, chances are you don’t need to rush out and buy a medical alert bracelet, or hang sleigh bells on your door, or visit your police department. But don’t wait too long.
And, as the disease progresses and your world shrinks, don’t give in. Push back. Stretch yourself. Four years ago, when I decided I would no longer officiate weddings, I launched my other podcast. It’s called Ritual Recipes. I offer rituals for the big milestones of life – the weddings and funerals – as well as for smaller life events such as moving into a new home, or sending your child off to college. I create rituals to celebrate the seasons, too – that’s the physical seasons and the season’s of a woman’s life. And I work with clients to create personal, healing rituals.
Right now, I’m working on a ritual for dementia caregivers. I’m looking for a few volunteers who will help me test it. You’ll need a fresh avocado pit, an ultra fine black Sharpie, and a notebook. And when the time comes, I’ll ask you to tell me about your experience. If you’re willing to help me shape this new ritual, let me know. Send me an email: firstname.lastname@example.org
In the meantime, if you know someone who is caring for a spouse – or any family member – with dementia, tell them about this podcast. We caregivers need to stick together. We need to remember what my friend, retired hospice chaplain Victoria Burdick, told me: “Between now and dead, you’ve got a purpose. Don’t be timid.”
Take care of yourself. I’m serious. We need to survive.