I read an interesting study today that suggested there may be a connection between loneliness and Alzheimer’s. What was most interesting was that it was those who felt lonely versus those who lived alone but didn’t express feelings of loneliness that had a higher incidence of Alzheimer’s.
It was a surprising result to the researchers. I’ve read numerous studies about social isolation leading to everything from dementia to depression. I wonder if these studies have some inbuilt bias towards extroverted people. There are some people who need constant company or they feel lonely; others can interact socially with people once or twice a week and be perfectly happy.
I’m not sure if Dad felt lonely before Alzheimer’s set in. Dad certainly had a passion for “alone time” activities like reading. He also had a solitary job as a security guard for many years. So like me, he was comfortable being alone and entertaining himself. Did he yearn for more socializing? That I will never know.
But what is clear to me is that once Alzheimer’s took hold of my father, he was whisked away into an isolating world, where we really could no longer connect with him in a meaningful way. And I saw that same isolation play out on the faces of every patient in the dementia ward of the residential facility where my dad spent the last year of his life. I remember so many residents reaching out, touching my arm, trying to communicate with me, hoping to make some kind of human connection. I often felt like I let them down when they shuffled away after an awkward, confusing exchange.
I hope there are more studies investigating social isolation and dementia, and I hope they take into account that both introverts and extroverts exist, and that the definition of loneliness is different for every human being.
I had the misfortune of finding myself shopping in Walmart today. Mom wanted to stock up on some things prior to surgery, so she wouldn’t have to worry about it when she is released from the hospital after her surgery.
Any kind of giant store like Walmart makes my vertigo go crazy. The entire store is sensory overload, and then there’s the constant dodging of other customer’s carts. Mom went to get her hair done so I was left alone to shop. (And if you’ve ever shopped with an elderly woman, you know it’s preferable to shop alone!)
As I sped through the Christmas gift section, to get from the pharmacy department to the grocery side of the store, my gaze picked up a gift box of men’s cologne. It immediately gave me a pang in my heart. Every year, I would buy Dad one of those box sets of cologne. I would usually get Stetson or Grey Flannel. It was an easy to select gift that I honestly never put any thought into. Dad wasn’t into presents, so he never asked for anything specifically. I didn’t want him to feel left out so I tried to get him almost as many gifts as I would get my mom, who would gush over every little cheap trinket I would get for her.
Dad always seemed to appreciate the cologne, even if all he did was mumble a thanks when he opened it. He definitely used it every day, and the scent of men’s cologne will always remind me of my father.
I was reading this blog post today about gift ideas for loved ones with dementia. The holiday season can be awkward when you are trying to accommodate those with Alzheimer’s and dementia. I think often, we as family members go to one extreme or another. We either bombard the poor souls or we pretend they don’t exist. As usual, the solution is somewhere in the middle.
First of all, there is no “one size fits all” solution. Each person with dementia will react to the holidays in a different way. For example, Dad was never sentimental about the holidays and his interest didn’t change once dementia took hold. I did buy him a personalized New York Times edition from his birthday and birth year once he was in about the mid-stages of Alzheimer’s. I wish I had bought it for him sooner. I believe he was able to look at the pictures but I believe his reading ability was limited by that point. It was a gift I had meant to buy years earlier, for Dad loved newspapers and history.
So one has to try to relate to their family member with dementia as much as possible. I think generally speaking, low-key, small gatherings are best, because they don’t stress out a dementia sufferer with too many unfamiliar faces and too much commotion. But again, I heard a story recently about a woman who suffered from dementia and who had loved to cook the big holiday meal before dementia took over.
So what did the large, extended family do? They each made a dish from one of her recipes, and pretended that she made it herself. The little old lady took her place at the head of the table, wiped her brow and exclaimed how tired she was from all of that cooking before digging in. The new tradition went on until she passed away.
Sometimes gifts don’t come wrapped in paper and bows. They are recreating memories of a loved one and sharing in the joy of those happy times.
So Mom would probably be mortified if she knew I was revealing this to the world, but it really is something that a lot of caregivers can relate to.
Today, all I wished for was poop.
Mom has a colostomy and after spending a week in the hospital, mainly on a liquid diet, her stoma had “gone asleep” in a manner of speaking. The medical staff warned us it might take a day or two to get things going, but after three days of solid food, Mom was barely outputting any stool. And that in turn was making Mom very sick. (Imagine how you feel when you are really constipated.) I feared another ER visit was in our near future.
But today, angels might as well have sounded from the heavens. Mom had stool in her colostomy bag! Yay for us! Our home care nurse was just as excited, and pointed out how when you are a caregiver, you have to enjoy the small victories in the face of illness.
That’s very true. I remember during Dad’s steady and steep decline into dementia, we would be happy if he was just able to eat, and didn’t have a fall in a day. It’s difficult to believe that one could take pleasure in the face of decline, but if you only focus on the negative, it will swallow your soul whole. I’m the ultimate pessimist, but even I recognize the joy of my mom being regular again. It keeps us out of the hospital, and out of the Grim Reaper’s grasp for a little while longer.
It’s impossible for me not to compare my parents and their completely opposite experiences in the hospital. Of course, there are many reasons for the extreme contrasts. Dad had a mental illness, Alzheimer’s, which dominated any physical ailments that he suffered from. So for Dad, hospital experiences were muted. Sometimes, the physical symptoms could be treated with medications and procedures, but there was no cure for the disease that was robbing his mind. Luckily, he was not an aggressive dementia patient, but he was a shadow of his former self. The nurses and other caregivers that took care of Dad on his numerous hospital visits seemed to be able to see beyond the current shell of a man.
But unlike Mom, Dad never received the high fives and accolades that Mom has, as she recovers from surgeries and other medical setbacks. I thought about that again today, as Mom was wheeled out of the hospital by a nurse. She has developed a hernia from her surgical procedure back in July. She will need to have surgery in the next month, but for now, she can go home. People waved and cheered as she was rolled down the hallway, towards the front door to freedom.
While Dad was never violent, due to his dementia, he could not be a fully cooperative patient. Mom on the other hand is every nurse’s dream. Charming, funny, and always wearing makeup, she is the bright spot in what can be otherwise dreary days for healthcare workers. Mom may be battling physical ailments, but mentally, she can still delight others.
Just like Dad used to be able to do, before Alzheimer’s robbed him of his personality.
I was talking to one of the local shuttle drivers that used to take my dad on errands around town. This was as Dad was beginning to move into mid-stage Alzheimer’s, where he could no longer be trusted to complete even simple tasks independently. One of the chores my mom would send Dad out to do was to get the mail at the post office. The driver would drop Dad off and wait for him. This should have only taken a few minutes. Dad was in there about 10 minutes and the driver got worried, so he went inside to look for him.
He said Dad was wandering around, with a lost look on his face. He said, “I can’t find our box.” Surprisingly, he remembered what number the box was, just not where it was located. This was a task he had easily managed to do hundreds of times before.
The driver helped Dad get the mail but soon after, Mom would have to add one more chore to her growing list, as Dad lost the ability to complete even the most mundane of tasks successfully on his own.
I was pleased to learn that Medicare is no longer requiring the “demonstrable improvements” mandate when it comes to covering the charges for a variety of therapy treatments for those with dementia. Most of us who have cared for a loved one with dementia know that physical therapy, speech therapy and occupational therapy can often improve quality of life. While this improvement was often not at the level Medicare required for reimbursement, it offered benefits that the indifferent eye of bureaucracy could not see.
While I have witnessed firsthand the challenges of successful rehab with a dementia patient, I think there are specific therapy programs that could brighten a dementia patient’s mood and help them better communicate their fears and frustrations. Dad somehow learned to walk again, despite being in the mid-stages of Alzheimer’s. I think it takes specially-trained therapists who know the best ways to reach dementia patients.
I hope more dementia patients can take advantage of therapy programs without their families having to worry about the financial consequences.
Until you spend a good deal of time with a dementia patient, you can easily overlook potential triggers that will create an explosion of confusion, fear and anger in certain people with dementia.
Take for instance, the simple act of getting on and riding in an elevator. I’ve heard that a way to keep dementia patients from crossing a door’s threshold is by putting a black strip of tape on the floor, or painting a black strip on the floor. Dementia patients see this as a black void and are afraid they will fall into it. I think this is what Dad experienced as we ventured towards the elevator. As we coaxed him to join us in the elevator, he jumped back as if he had been shocked. We finally were able to get him safely in the elevator, and had him hang on to the railing at the back for support. He was very unsteady and I could feel his anxiety level rise.
Fortunately, we only had to go a few floors up so the frightening incident for Dad didn’t last very long. He forgot it as soon as he exited the elevator. The trip back down was uneventful. But I remember that “scared out of your wits” gleam in Dad’s eye. It’s not something you ever want to see on a loved one’s face, but with dementia, it becomes an expression that one sees all too often.
What the experience has taught me is to be even more aware of my surroundings, and other’s special needs. What may seem like a routine, mundane task for me may be a journey of terror for someone else.
As we roll into November, I can’t help but think about this time last year, and how the beginning of the end was about to start for Dad. But November 2010 also included a hospital stay. Dad had a gallstone removed and was recovering pretty well in a hospital in Albuquerque. He was about mid-stage in his dementia journey at this point.
Getting Dad to eat was difficult. He could still swallow just fine at this point, but the hospital food was just not appealing to him. Mom would coax and wheedle and he would eat a few bites, but that was all. While in the hospital, he became more frail due to losing weight and being bedridden. This led to his transfer to a nursing home, and his inability to ever live at home again.
But one morning at the hospital, Dad was a bit perkier. A male attendant came in to take his breakfast order. The options for the morning were rattled off: scrambled eggs, cereal or French toast.
Dad didn’t miss a beat. He asked, “Does it speak French?”
The attendant and Mom had a good laugh over that one. Dad got the French toast, and if it spoke to him, only he knew about it.
Decades before Dad developed dementia and started suffering from falls, he had a tumble down the stairs that I remember fairly clearly. In this case, another “d” word was responsible for Dad’s unsteadiness: drink.
Dad always enjoyed a couple of beers to unwind after his swing shift. There was a period when I was a small child that Dad overindulged. But after that, it was a couple of beers and that was it. I never saw him drunk as I got older, except for this one occasion that led to the fall down the stairs. I was probably a pre-teen at the time. I never did find out what caused the overindulgence that night. Did he have a bad day on the job? Did he get into a fight with Mom?
All I remember was hearing a loud crash and bolting out of bed. Turning on the lights to illuminate the stairwell, I saw Dad’s crumpled form at the bottom, trying to get up and steady himself. Mom came rushing out of their bedroom, and the two of us helped him up the stairs.
At the time, I was mildly disgusted and annoyed at being awaken in the middle of the night because my dad was inebriated. I never remember another incident like this happening.
Not until the dementia happened. Then Mom and I were once again by Dad’s side, supporting him when his body and mind could no longer support him.