What does it feel like to have dementia? In Where’s Maria, you experience first hand the confusion, anger and humiliation that people with dementia experience every day. Could this be your mom? Could it be you someday? I don’t remember much before this moment. I don’t recognize exactly where I am, although this recliner chair fits me like a glove. A female talk show host on the television is blathering on and on about some burst of insight, but it’s not Oprah and I don’t care for the knock-off, dime store psychology. The imitation is enough to make me shift in my seat and utter something in annoyance, more of a raspy croak than my usual gentle voice. I glance to my right and the grey-haired man next to me smiles with his eyes and a tangle of memories are suddenly swept out the corner and set adrift, cascading down in my mind as sparkly as water splashing off of sun soaked rocks. I feel a flood of joy and break into a face-splitting grin, which is quickly replaced by a concerned and furrowed brow. He looks surprised as he reaches for my forearm and gives me a gentle pat. “Are you getting Maria off the bus?” I ask him. He continues to pat my arm, turning his attention back to the Oprah Winfrey imposter. Typical. He never responds to anything I ask the first time. I guess I’ll have to go get her myself. I start to stand up, my knees grinding in revolt, and somebody rushes from the across the room and pushes me back down into my seat. This actually hurts a little. I must have strained my back carrying laundry up and down the stairs. I swear the amount of laundry these kids produce… This lady is pointing her finger at me. I’m told to stay . Like a dog-trainer scolding an errant beagle, she says it three times in escalating volume. Why is she so angry? The fourth time she is pushing down on my shoulders so hard that I have no choice but to push back. I realize that the bus is almost at the end of our street and, at this rate, no one will be there to meet her. Sunny must be home with her baby. I think Shane is at football practice with his son. Or maybe with his dad. I can’t keep them straight. Poor Maria won’t know what to do. The thought of her standing there, alone, looking lost and afraid, causes me to panic. I am quicker this time, and get to my feet before the lady can bully me any further. The grey-haired man also protests my actions, reaching for me from his recliner, which makes me really angry considering it’s his six-year-old daughter too. I shout something at Continue reading
I found my purse in the freezer this week. After appropriate jokes about new meaning for the term “cold cash,” I considered what this might really indicate. The thought was chilling.
As a Senior Move Manager, I have taken courses on how memory changes over time, so I know that short term memory loss increases as we age, and brain processing speed slows down. This part of aging is referred to as normal age-related memory loss. I know that some people experience more than normal age-related memory loss, and this is referred to as mild cognitive impairment, or MCI. Both people with normal age-related memory loss and people with MCI can live independent, meaningful lives. I also know that 5 million people in the US, and 50% of people above 85, have some degree of dementia. Does finding my purse in the freezer mean that I will become one of them?
Dementia is more than memory loss alone. It is also characterized by problems with judgment, language, abstract thinking, and it interferes with daily and social functioning. So now I am doing what many people above a certain age do when they forget something or notice cognitive changes. I am asking myself if finding my purse in the freezer is a sign of something serious.
Do I forget things like people’s names, where I placed my keys or where I parked? Yes, but I have always done this. Although aggravating, this is common for me and for most people as they age, so I chalk this up to normal age-related memory loss and make a silent promise to write down where I parked and focus more on putting my keys in the same location.
Another warning sign of dementia is difficulty performing familiar tasks. I need to be retaught the rules of cribbage every time I play, but I have always been card-challenged. Other examples do not come to mind, so I cross this symptom off my list as well.
I check to see if I am disoriented about time and place. Do I forget how I got somewhere or how to get home from familiar places? Since I have gotten a GPS, I don’t need to focus on where I am going; the GPS does it for me. I haven’t noticed any changes in this area, however, so I decide I am good here as well.
Do I have poor or decreased judgment, like wearing heavy clothes on a warm day? Nothing jumps out as worrisome, so I move on to the next symptom.
Do I have trouble with abstract thinking, like forgetting how to balance a checkbook? I use Quicken to balance my checkbook, and I remember how to use the software each month. I decide this is not a problem area either.
Do I put things in unusual places, like a purse in a freezer? Ooops. I need to delve into this one a little further. I have a tiny purse, just big enough for my cell phone, cash and credit cards. It is black, of course, and hard to find when it is misplaced, which is often. But how did it get in the freezer? I consider my habits. While there is no reason the purse doesn’t stay on my shoulder, it seems I often place it in whatever I am carrying into the house… like a bag of bagels, for example, which is where I eventually found it when we defrosted the freezer. I decide to mull this over as I read the paper, and find my replacement purse, equally tiny, in the plastic bag next to the paper. I conclude that given my habits, a purse in the freezer, although bizarre even for me, is understandable.
Then I recall that six months ago, I found orange juice in the cabinet next to the refrigerator –another unusual location. Once again, I do a self-check. Since the cabinet is immediately next to the refrigerator, I decide I was probably multi-tasking and got distracted.
I think I am safe, for the time being. But I realize that I have crossed some threshold, after which actions that were laughed off decades ago, are now taken seriously. A worry lingers in the back of my mind each time I notice a change or something out of the ordinary. I’m OK with that. I’d rather be informed and worried, than unaware and untroubled.
I am glad to have my old purse back, and I am happy to report that 6 months of being frozen appears not to affect credit cards or cash. Will I experience other signs of normal age-related memory loss? I hope so, for decades to come.
To learn more about cognitive changes as we age, visit eSMMART.com and look at two courses: Memory and Forgettery, Parts 1 and 2.
“Margie Dear, I am moving and I need your help.” So began the call from my 91-year old Aunt Betty. Never mind that I have used my real name, Margit, for 38 years. To Aunt Betty, I will always be Margie. Betty has buried three husbands, and her only daughter, my first cousin, died at 20. So I went to Florida to help her move from a large 2-bedroom apartment to a retirement community.
Betty had moved into the community on Monday, taking only two suitcases. New furniture had been purchased for the apartment, because she had brought none with her when she moved from Philadelphia 8 years earlier. My job was to help her go through her belongings at the old apartment, identify what she wanted, and have it brought to the retirement community. In short, I needed to help her sort through and downsize. No problem. After all, I am a Senior Move Manager. But I am also, I discovered, a niece, and throughout the weekend, these two different roles collided.
Like many of my clients, Aunt Betty had a hard time parting with items I knew she would never use. Sometimes, I could cajole her into letting something go.
“But I loved this lamp,” she said, pointing to a 40-inch tall lamp that was still in its shipping box from 8 years ago. “Well, not enough to use it for the past 8 years,” I replied. She laughed and said, “You’re right.” These interactions – I refer to them as reality checks– were easy, because they did not diminish her as a person.
It was harder when we looked at large serving dishes. “I may have a dinner party,” she said. Betty is very frail. She uses a walker and qualifies for independent living only because Bea, her aid, is with her 6 days per week. I couldn’t say to her, “Betty, you haven’t made a meal for yourself in months. “ She does not need to be reminded that reality is cruel. It was similar when we went through clothing she insisted she might wear someday. I couldn’t remind her that she wears only pants with elastic waists so she can pull them up herself, and that they need to be full enough to accommodate the disposable underwear she now uses. Some memories and images of ourselves need to be preserved as who we once were.
Even though much of what she wanted to take would never we worn or used, I knew there was space for it in the new apartment. Her decisions didn’t have to be perfect or wise, but they were her decisions, and the Senior Move Manager in me accepted that. Later that day we met with a Move Management colleague whose staff would handle the packing and transport of clothing and other items after I left. When I took my colleague aside and said, “If you find any clothing that is torn or stained, discard it,” I was horrified. I would never say that about a client’s belongings! Suddenly, I was no longer a Senior Move Manager, I was a family member. The ease with which I had lost professional objectivity and slid into expediency was alarming. Yet, I understood why adult children are so often pulled in this direction. They’re coping with their own mixed feelings about their evolving role and added responsibilities, as well as with changes they see in their parents. When expediency wins, it’s not from lack of concern, it’s from lack of time.
As it turns out, the next day was when the roles of Senior Move Manager and family member most collided. I had arrived Saturday morning and Betty and I had worked throughout the weekend. It was 8 PM Sunday evening when we arrived at her new apartment with a load of pictures and other items in the car. Since Betty walks very slowly, I dropped her at the door and suggested that she start toward her second floor apartment while I unloaded everything onto the hotel dolly kept in the lobby for such purposes. When I reached the apartment 15 minutes later, there was no answer. Worried, I began walking through the hallways. I found Betty on the first floor. “I got lost, I couldn’t find my apartment,” she said “Then I got so tired, I had to sit down.” “Your apartment number is on your walker and also on the keys around your neck,” I gently reminded her. “I know, but I just couldn’t figure it out,” she said. And then I realized, I was no longer the Senior Move Manager; I was family.
Like so many family members, I had come in for a weekend determined to get things done in the time frame I had allotted, and I had put my need for productivity ahead of Betty’s need to rest or enjoy my visit. I wanted to be finished; Betty wanted us to have time to talk.
The Senior Move Manager in me emerged again as I reflected on what I had seen and inadvertently, caused. Betty had moved on Monday, a transition that was both hard and emotional. She barely had time to adjust to her new environment, when I swooped in and created two incredibly long, emotional days. I was exhausted; I can’t imagine what she must have felt like. As a Move Manager, I know that stress, emotions and anxiety take a particular toll on seniors, a toll that often manifests as memory loss and disorganized thinking. Whatever cognitive status Betty had before the move, what I had observed Sunday night was Betty under the worst conditions. I had caused it, and I should have known better.
When I visited Betty Monday morning, I apologized for exhausting her so much over the weekend. “Oh honey, I just feel so badly that you worked so hard,” she said. And there she was, the Betty I knew, parenting me, rewarding me for coming down to help. Yet, in her next sentence, she was confused about whether she was in Florida or Philadelphia. The juxtaposition of the old Betty and the new Betty was sobering.
In the days that followed, I alerted family members who might call that Betty might not be herself for a while. I explained that the stress and emotions of the move had taken a toll, and that with time, I was hopeful she would rebound and be more like her old self. And in fact, in recent phone conversations, she has sounded more like herself.
Yet Betty is aware that she has changed. “My memory has gotten so bad’ she said recently, clearly disturbed, “I am not the person I used to be.” To dispute what she knows to be true would be condescending. I want her to know that even if her cognitive status is changing, she is still the same person to me, and that I still love her. “I have noticed a change from months ago,” I responded. “I think you are about 90% of the Betty I know, and that’s OK with me.” Betty smiled. I think being 90% of Betty was OK with her, too.