Is This Behavior Normal? Accepting the New Reality About twenty years ago I noticed that one of my neighbors, Kendra, was writing names and phone numbers on pieces of paper and taping them to the back of her bedroom door. I remember thinking at the time that it was odd, but it wasn't odd enough to bring it to the attention of her daughter and my friend, Alicia. Even though I am a nurse, I figured that those Post-it notes were her business, and I shouldn't get involved. Two to three months later, though, it became clear that Kendra was changing. She was forgetful, repeating conversations, and making critical mistakes in the kitchen where she used to have total domination. Once, when we had stopped by for a visit, I noticed that she had left the water running in the sink. Another time I found a burnt and ruined teapot in the garbage can. She would shrug off these behaviors when I pointed them out, and frankly, I didn't want to get into a fight. The last straw was when she put a rug in the oven and almost set fire to the house. At that point it didn't take a nursing degree to see that this woman had dementia. After what we have come to call "the rug incident," I told Alicia that it would be in her best interest to hold a family meeting with her relatives to figure out a plan. Yet they never did it. Why? Alicia and her siblings were in denial. They couldn't come to terms with the idea that their mother was less than perfectly healthy. They couldn't separate the reality of what was happening right in front of their eyes with their own life and their old familial roles. So even though my neighbor was clearly exhibiting the signs and symptoms of dementia, her children couldn't or didn't want to accept what they were seeing. Their reasoning was that "Mom's just getting old." Luckily, I knew better, and within a week I was able to put in place a strategy for getting Kendra the coverage she needed and keeping her in her home. I made sure she knew that we knew her mental health was failing, and that we would work together to go forward successfully. Once we implemented a plan, she was able to relax knowing that her family supported her. Kendra lived for another twenty years, in her own home, before she passed away. Those years were challenging and beautiful. Her family learned to work like a team, for her sake as well as theirs, since they shared the responsibility of being her caregiver. Today they would tell anyone who asked that the hardest work involved moving out of denial. Denial Is Safe Maybe you bought this book because you have a concern, a gut feeling that something is going on with someone you love. It could be your parent, spouse, close friend, or relative. It may even be your adult child. Just taking this one step and buying this book means that you are already coming out of denial. Denial is when a person is faced with a fact that is too uncomfortable to accept, and so they reject the fact, even in the face of overwhelming evidence. When it comes to dementia, your Loved One (let's refer to this person as LO for short) may be in denial, because they are ashamed of how they are changing. The family may be in denial because they are afraid of the vulnerability this disease brings up. Denial is also influenced by what the diagnosis would mean to the whole family: an upheaval in everyone's life. You may be heartbroken when you see your LO struggling, which causes denial to look a lot like grief. There are lots of reasons why denial and dementia are so closely tied together. Dementia is a sneaky, insidious disease. The symptoms come along so slowly that you may not notice them in real time, even if you're living with the person. And if you live far away from your LO and only see them from time to time, they may be hiding their symptoms or may have developed compensating behaviors. That's why my neighbor had all those Post-it notes: she knew that she was having a hard time remembering phone numbers, but she didn't want anyone else to know. It's only when the compensation strategies no longer work that you may notice odd behaviors, and at this point another type of denial sets in. By this time, the excuses come fast. Some people don't want to see their LO not feeling well. I've heard too many times, "Mom's just getting old." I also know that lots of people get old and don't get dementia. Denial is also influenced by the relationship someone has with the person they will have to care for. For instance, if you are harboring anger toward your parent, your denial may feel different than that of someone who has a strong attachment or closeness. Denial with anger may cause you to act out, or yell when they do something out of the ordinary (like deciding to dry a rug in the oven). If you find that you're getting agitated because your LO just asked the same question three times in a row, ask yourself why are you so angry. Seeing your LO acting out of character may also bring up feelings of guilt, especially if you are in denial. Or you may have guilt that your relationship isn't as strong or as healthy as you want it to be. It's okay to feel guilty; we all do from time to time. It's not okay to let your guilt keep you from taking the next step. When you flip feelings of guilt into real concern, you move out of stagnancy and into a more proactive mindset. And proactive is the place you need to be. Denial also comes from confusion when you are feeling overwhelmed or lost. This is not surprising for a first-time caregiver; you can't imagine the changes that are to come or what exactly you will need to do. You may feel like you are in shock now, yet when you look back, the dementia signs were there all along. Luckily, I'm here to help ease this confusion. You will be able to count on the knowledge I've gained from experience as you move forward in your new role. No matter how you feel about your LO, the sooner you get past denial, the better. It not only alleviates wasted time in terms of providing better care, it gives you more time to come up with strategies that work for you. The time you are going to spend caregiving is time you cannot ever get back. The good news is that once everyone is out of denial, a family can move toward acceptance, and with that comes relief. Best of all, that mindset comes with better health outcomes for your LO, and a better caregiving experience for you. The Signs and Symptoms of Dementia: Exactly What Am I Looking For? The single thing that's going to get you and your family out of denial is understanding the behaviors that you're seeing. We all experience memory lapses: forgetting a friend's name during a conversation, or walking into a room and wondering why you are there. These blips may be caused by anxiety, a bad night's sleep (or a few in a row), illness, a new medication, poor diet, or dealing with physical pain. When you notice that someone's memory lapses interfere with their ability to get through the day, or continue for days at a time, it's possibly a greater problem. I tell the families of my patients that dementia isn't when you can't find your keys. It's forgetting what keys are for. Before we get into the signs of dementia, here's a list of what it is, and what it is not: Dementia is . . . - Consistently poor judgment and decision-making - Inability to manage a budget, overspending, or consistent financial errors - Losing track of the date or the season - Difficulty participating in a conversation - Finding objects in inappropriate places, like finding knives in the freezer - Getting lost in a familiar place - Wearing two different shoes, or wearing shoes on the wrong foot Dementia is not . . . - Making a bad decision once in a while - Missing a single monthly payment - Forgetting which day it is, but remembering it later - Difficulty remembering the right word or name in the moment, but remembering it later - Difficulty remembering where you put something down - Using GPS or Google Maps to get home from a place you've been to once or twice before - Misplacing shoes Dementia and AD have early warning signs and symptoms, but because they are so subtle, family members often miss them, refuse to accept them, or hide the fact that they've noticed something strange because they don't want to intrude or say something that would be upsetting. Any one of these signs should be cause for immediate concern, and is enough to warrant taking your LO to a doctor for a diagnosis. 1. Adopting inappropriate behaviors: talking loudly, throwing tantrums, cursing 2. Changes in diet/eating habits 3. Difficulty completing sequential tasks: inability to drive a car after years of driving 4. Difficulty with executive function, including reasoning, problem solving, planning: this can show up during activities like grocery shopping, making doctor appointments, paying bills or cashing checks, or impulsive online shopping 5. Difficulty with visual and spatial awareness: a loss of depth perception may lead to falls and car accidents because of an increase in making abrupt moves while driving 6. Failure to recognize common objects: this decline can affect the cleanliness of the home 7. Visual hallucinations: reporting seeing people, animals, or even shapes or colors that do not exist 8. Lack of motivation and initiation: changes in mood, personality, or hygiene 9. Loss of focus and perceptual ability: losing the skills to finish a favorite activity 10. Loss of risk awareness, poor judgment: leaving credit cards at restaurants or stores 11. Personality and mood changes, including depression, increased anxiety, paranoia 12. Problems with orientation: getting lost while walking/driving to a familiar location 13. Repetitive questioning and storytelling 14. Withdrawal from work, family, or social activities 15. Obsessive-compulsive behaviors: detrimentally focusing intently on one activity The importance of knowing these signs goes beyond identifying dementia. Let's take a lack of hygiene as an example. You may have noticed that your LO has a strong smell, their clothing is in poor shape when they used to be dressed to the nines, or they're wearing the same thing day after day. These signs may seem innocuous, but they can quickly lead to a decline in health with real ramifications. When women stop showering, for example, they are more likely to develop dangerous urinary tract infections. What's more, one small symptom may be a signal of more than one of the "official" warning signs. If your LO isn't changing their clothing daily, they may have also stopped seeing their friends. Or they may be having trouble with buttons or zippers, signs of incoordination. It's also possible that your LO doesn't know that they are struggling. In fact, this is another form of denial. I've met lots of dementia patients who will tell me that their memory is just fine. I've learned over the years that it's the exception for someone with dementia to complain about their memory. (Doctors often say that if someone complains about their memory, they are more likely to be stressed, anxious, or depressed.) So, when you see these signs and symptoms for your LO, you are experiencing their life entirely differently than they are. How To Start Difficult Conversations All of these should be a face-to-face conversation, even if it has to be over something like Zoom or FaceTime. The best case would be a neutral environment, not your home or theirs, and try to keep the conversation as casual as possible. Be kind and not confrontational. If this is your close friend, sibling, or parent in whom you've noticed changes even if you don't see them every day, you can say, "I noticed last time I was in your home that you had a bunch of Post-it notes with phone numbers and names by the kitchen table. Did you forget how to find them in your contacts in your cell phone?" or "I've noticed over the last couple of months that you are repeating stories to me about things we've already talked about. Have you picked up on that, too?" or "I noticed when we went out for dinner last night that you were staring at the menu for a long time and had difficulty understanding the headings, even though you've been to that restaurant a million times. Is everything okay?" If this is your spouse, whom you see every day, say, "I think it's time to see a doctor to check out your memory." Or "Yesterday you didn't put the milk back in the refrigerator and I found it in the pantry this morning. The same thing happened last week. Let's get to the bottom of this because I'm concerned about you." If you are concerned about a casual friend, or a distant family member, approach someone else in their family and say, "You know, I'm concerned about your sister. Last time we had lunch she couldn't remember how she got to the restaurant and seemed confused. I think you should take her to be evaluated by a doctor. This isn't normal behavior." If this is a colleague at work, talk to their manager and say, "Tom seems to be struggling with his assignment and it's holding back my work. I've noticed several signs that may be pointing to memory loss. He's confused about deadlines and the projects he's working on. Can you have a conversation with him?" Don't be surprised if you get pushback and denial. Most people with dementia think they're fine. Respond by saying, "I know you think you're fine, but I'm worried about you. We need to see the doctor to make me feel better. It may be nothing, or it may be something. I'm going to make the appointment." Excerpted from Caregiving with Love and Joy: An Expert's Guide to Providing the Best Alzheimer's Disease and Dementia Home Care by Patricia A. Boswell All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
