Today, September 21st, is World Alzheimer’s Day.
I often share the challenges of having a loved one with Alzheimer’s, and those challenges are very real for many people, but today I wanted to share some common struggles that you probably never thought of and some light-hearted stories that hopefully spread some laughter on a day that is really challenging for people with an Alzheimer’s-diagnosed loved one.
If you have a loved one with Alzheimer’s or are a caretaker of someone with Alzheimer’s, I understand the complex emotions you probably feel and the unique obstacles you face on a daily basis. I have shared in-depth about my experience with my husband Larry, who was diagnosed with Alzheimer’s in 2016 and passed away in April of this year due to other non-related health issues. You can read more about our journey on my blog: https://www.coachmonique.com/blog/categories/alzheimer-s-the-long-goodbye
I hope some of the stories I share in this blog help you feel less alone and maybe even have a laugh!
The Long Lost Laundry Basket
For years, we had a bright green laundry basket that “lived” in the laundry room. At this point in time, Larry and I were empty nesters. Larry was still able to be home alone for short periods of time but wasn’t driving. One day, this bright green laundry basket simply disappeared. At first, I figured it would turn up the next day or I would run into it while cleaning or looking for something else in another area of the house. After days went by and there was still no sign of the laundry basket, I became really confused and eventually became obsessed with finding it.
I looked in every closet, searched the basement, and tore up every corner of the house… I even searched the outside property. I was literally in the backyard looking over our fence into the woods in search of this laundry basket.
I asked my son, Anso, if he had it and he claimed not to know where it was. I even looked around his apartment the next time I stopped by. My oldest son, Scott, was on an eight month sailing trip so I assumed he didn’t have it. I even asked my twin sons who were away at college if they took it with them by accident and their response was, “Mom, we flew back to college.”
I became obsessed with finding this laundry basket, literally searching under the deck and what felt like everywhere else on the property.
Three months after the disappearance, I came home and the laundry basket was miraculously sitting in the middle of the floor in the laundry room…I almost tripped over it!
When I asked Larry about it, he looked at me like I was crazy.
Still, to this day, I have no idea where he could have put this laundry basket and it boggles my mind every time I think about it.
What the Wok is Going On?
I have a beautifully seasoned iron wok that has “lived” in the cabinet below the stove since the day we moved in over 17 years ago.
Mysteriously, our iron wok faced the same unusual disappearance as the bright green laundry basket.
One day, when I reached under the counter to sauté some vegetables, the wok was not there. Since I’m the only person in my house who ever thinks to sauté a vegetable, I was more than a little confused about its whereabouts.
I looked everywhere for it and eventually even called family members, neighbors, and close friends, asking if I left it somewhere, even though I was 99% sure I didn’t. Needless to say, I think a couple of my friends were beginning to get concerned about me…who loses an oversized wok!
Again, I searched the garage, the laundry room, the bedrooms, bathrooms, office, and the basement. Nothing.
Then, a month later, I reach in the cabinet to grab the olive oil and the wok is sitting right there. When I asked Larry about it, he claimed it had been there all along and was again indignant that I even asked him about it.
Things like this will make you feel like you’re losing your mind… Sometimes it felt like an out-of-body experience… this can’t be happening…
Common sense would tell you to lock up valuables and put a password on the computer so they aren’t able to access financial information or anything of value, but who thinks to lock up their iron wok or their laundry basket? You might spend all morning searching for your car keys that you swore were on the dining room table, only to find them in your refrigerator when you’re making lunch.
Although these random incidents can be funny now, they weren’t then....these are very real situations that can become nearly daily occurrences and make YOU feel like you're losing your mind.
Then there are the questions you never dreamed you would be asking...
For example, what do you do with Gerald, an Alzheimer's patient who, despite being married, flirts inappropriately and is on the prowl for a girlfriend?
How do you handle an Alzheimer’s spouse who wants to have sex, but it’s not exactly a turn on when you just put a clean diaper on them?
Nobody wants a cheating husband, but what do you do when your husband has Alzheimer’s and he’s overtly flirting or wants to pursue a romantic relationship with someone else?
What is Jamie supposed to do when she and her husband are sitting in the living room and all the sudden her husband starts cruising through super inappropriate pornography that he would have never been interested in before?
One story I heard recently involved a pediatrician who started showing warning signs of Alzheimer’s when he began leaving Playboy magazines all over the waiting room and office.
Things like this happen when they normally wouldn’t because an Alzheimer’s patient’s inhibition is lowered… They simply don’t understand the inappropriateness.
These may not have even been things they were interested in when they had their faculties, and if they were, they definitely were things they kept private.
What happens when you have a beloved family member who was an alcoholic and gave up drinking ten years before their diagnoses, but now forgets they don’t drink? You can’t really have alcohol in the house in case he reaches for it, even though some days you’d give anything for a Chardonnay after coming home from a long day of work and then dealing with the drama of the caregiver being thrown out of the house. Who wants to go to a Christmas party with someone who has difficulty finding the bathroom in their own house, but they easily locate the self-serve bar three rooms away in a house they’ve never been to. Now the Alzheimer's patient, who started the evening arguing that they were going to walk home before you even got them into the party, is now refusing to leave or even give up their glass of vodka.
How do you deal with the family member who lets them sneak drinks all evening so now you have a drunk Alzheimer’s patient who can hardly stand up, is argumentative and caps off the evening with peeing all over your hotel room…the furniture, your work laptop, and their suitcase full of clothes for the trip…not exactly the vacation you had hoped for!
What if your mother forgets that she doesn’t drink and starts causing a scene in a restaurant, and is now refusing to leave? It’s awkward at best and downright a problem at worst.
According to Caring.com, “As dementia slowly robs self-awareness, the person becomes less inhibited, losing both the memory of how he or she once behaved as well as a sense of social norms… It's as if an internal filter of what's polite behavior or not is turned off.”
The article also states examples of common behaviors that an Alzheimer’s patient does not realize are inappropriate, like undressing in public, cursing out strangers or attempting to kick out caretakers, and making unwanted sexual advances. Behaviors like these can also indicate a need for something else, for example if they are undressing in public, it may simply be because they are hot. If they begin shouting or cursing at strangers, it may be because they feel stressed or overwhelmed.
In any case, situations like these can be super frustrating, embarrassing and difficult to handle. It is important to explain to others that this person has Alzheimer’s and therefore does not realize what they are doing is inappropriate, while staying respectful of the Alzheimer’s patient and their dignity.
A tip that I found helpful when dealing with situations like these is redirecting the person with Alzheimer’s rather than trying to reason or argue with them.
Arguing will likely escalate the situation and it is nearly impossible to reason with someone who has lost their sense of self-awareness and inhibitions. Although it’s challenging, try to remain calm and comfort them or remove them from the situation. Believe me, I fell into the trap of trying to be logical only to have Larry argue with me that I was crazy and didn’t know what I was talking about.
According to the Centers for Disease Control, caregivers of Alzheimer’s patients are at a greater risk of anxiety, depression, and poor quality of life than caregivers of people with other conditions. Two separate studies reported the rate of suicide attempts in caregivers of patients with Alzheimer’s had a prevalence ranging from 6% to 16%.
Remember that you cannot take care of others if you are emotionally, mentally, and/or physically depleted. The day to day struggles of being an Alzheimer’s caregiver can feel insurmountable and after months and years, they compound and feel like an impossible load to carry. As an Alzheimer’s spouse, I spent several years struggling with the decision to hire caregivers when Larry was adamant he wouldn’t have them in his house and contemplating when I would have no choice but to place him in a memory care facility. I actually toured a memory care facility near our home four times before taking Larry there on a tour under the pretense I was only doing research for one of my clients. He followed along on the tour and when I asked him for his opinion, he responded with, “It’s a beautiful place and the right choice for some people, but I would never live here. I would feel unloved.”
The feelings of guilt that can come with these decisions can seem like too much to bear. You are not crazy and it is normal to have emotions that are complex and even contradictory.