I was the only daughter in my mother’s family of three. And though my two brothers provided love and support when they could, they lived at either ends of the country and thus much of Mom’s care came to me. When we all finally convinced her to move to Smith Village so she would have help in a small but lovely apartment, my nursing background was extremely helpful. I could speak with some authority to her caregivers. But after a few years, it was difficult to accept that she had to move to the Memory Unit.
Maybe five years before, Mom had been diagnosed with multi-infarct dementia, a silent disease that means a series of small strokes are gradually affecting the functioning of the brain and thus memory.
I learned over time to adjust my own communication skills so that Mom and I could maintain our close and wonderful relationship, but also to not hesitate to speak out to her caregivers—the people in charge of her daily life. I wanted to make sure that Mom would be loved and honored despite her being unable to totally care for herself.
And thus over time I created a list of rules to follow—passing them along to my brothers and to anyone who needed help as they wandered into this new and sometimes frightening world. Ironically, I had even coached my mother several years before when she was sole caregiver for her older sister who also developed dementia, though hers was never as severe are my mother’s.
Rule number one: watch for gradual changes in your family member’s ability to communicate; dementia is a progressive disease.
Usually it affects the short-term memory first, and I am not referring to forgetting the title of a book or the name of the nurse at the doctor’s office. I’m referring to memory loss that is consistent and begins to affect daily functioning.
- With my mother I noticed changes during phone calls. I would tell her exactly when I was coming for a visit, and during the preceding week she would ask me repeatedly the arrival day. When I told her again, I asked her to write it down, but she forgot before the phone call ended. For a while I mailed an itinerary, but as the disease progressed that didn’t help—I would find it in a pile of mail, put aside and forgotten.
- Then during our afternoon phone calls, I noticed that she would tell me about a friend’s visit, say around 4:00 pm and then minutes later at 4:05 she would start to repeat the exact same message. Sometimes I listened all the way through and sometimes I tried to gently move the conversation forward. It’s not a good idea to say, “You already told me that,” though I know in the beginning I did so in frustration.
- When I would visit her, I found many scraps of paper with phrases and words scribbled on them—her attempts to remember things.
Take-Away: despite memory changes, be patient and kind.
The loss of long-term memory usually comes later on, but when it does you will find that this makes conversation with your parent, relative or friend extremely difficult.
- Conversation relies on memory. It is a web of shared experience, common background and people. If your loved one can only remember what is right in front of her (you in your red sweater with that big black purse) there is no extended conversation. Or her end of that conversation is a repetition of the same question over and over and you providing the same answer. Q Is that a new sweater? A Yes, I just bought it. Q When are you leaving? A I’ll be here for three days. Q Is that a new sweater?
- The loss of long-term memory occurs over time, waxes and wanes. People with dementia are often more alert in the morning and yet very challenged at the end of the day. Some even experience sundowning, a term coined by the medical profession to explain why the lessening of light in late afternoon can increase the symptoms of a person with dementia. The patient may become irritable, restless, disoriented and demanding. Doctors are not certain as to why this occurs. Scientists have attributed it to changes in the brain affecting the inner “body clock.” This is possible as the area of the brain that signals when you’re awake or asleep can break down in people with dementia diseases, like Alzheimer’s.
- For a while my mother and I could overcome the short-term memory loss by moving right to the “old days.” Though I did much of the talking, we could sit for an hour and remember my childhood, her parenting, and often memories of people in our extended family. Yes, I often had to coach her, “Mom, I’m talking about Tom. He’s Imelda’s son, you remember Tom.” And she would. Or maybe toward the end, she would only nod in frustration.
- Then came a day when I was visiting and she did not remember a major event in her life that left her alone with three small children—my father’s early death. This was startling and frightening.
Take Away: be prepared. Know that someday this person you love might not even know you.
Rule number two: be creative, positive and upbeat when communicating.
Each dementia patient is different—some are sweet and docile, some are angry and irritated, some are almost catatonic. And it can change from day to day, even hour to hour—rollercoaster style. One Christmas, my mother yelled at my younger brother whom she adored, accusing him of being in the Navy and ignoring her. My brother was never in the military. This came out of nowhere. He was very upset, but gradually she forgot her own words, came around, allowing him to kiss her.
Medications are used to affect this kind of behavior and help a person cope with dementia. Here are a few tips that might facilitate a visit or daily encounters:
- Bring her something. A small gift is always appreciated and allows for conversation about that item—warm socks, skin lotions, of course candy (elder folks love sweets as their taste buds are failing too). Or you can bring a flower from your garden, a magazine filled with bright pictures—and if celebrating a holiday, something to hang in her room or place on a table: a small Christmas tree, box of Valentine candy, Easter poster—even a stuffed animal. Toward the end of my mother’s life, someone gave her a battery-operated dog. His head moved. I’m convinced she thought the thing was real. This was hard for me. The entire journey is hard.
- Bring props. My mother had photo albums in her room, but I began to bring photos of my travels, grandchildren, even my home. We could sit and look at the photos, talk about what we saw in them thus replacing the red sweater and the black purse. This often made for a happy hour of closeness. But remember—dementia patients are often confused and if your loved one incorrectly identifies people in the photos, you might just have to let it go. You don’t want to increase confusion and you certainly don’t want to argue. It’s pointless.
- Bring people. One time when I visited my mother my eldest daughter was there with her boyfriend. This was great. It allowed my mother to focus on them and ask them the questions she always asked me. Later, she got very quiet as the rest of us talked—and I don’t really know if she could follow the conversation. But I know she was happy just being with us. After all, looking at family, being out of her small room was way better than anything she could imagine. Which brings us to:
- Create an experience; change the environment. Sharing a meal or taking your loved one outside in his or her wheelchair for a walk is essential during a visit. There was a café in my mother’s elder home and sitting there helped stimulate her. She would talk about the decorations on the wall and what ice cream she wanted. Sometimes she was able to smile and introduce us to other residents. It didn’t matter that she couldn’t remember their names.
- Finally, a few very basic hints: it always helps if your loved one has hearing aids in and glasses on. Speak slowly and distinctly. Always avoid frustration and anger and use words that he or she will understand. Show this person respect. Doing so will make your visit pleasant and provide the person with a positive, though fleeting, experience.
Takeaway: the present is precious—it’s all dementia patients have. If you prepare yourself for a meaningful visit with this person, you will be rewarded. Dementia will progress. When one fateful day the head of the facility told me that my mother had to be moved to the Memory Unit—I argued. I argued a lot. When she said that Mom was a flight risk, I laughed. But I was wrong. My mother did try to wheel through a door toward a staircase, but an alarm stopped her—this while she was living in the Memory Unit.
As dementia moves your loved one toward the end of life, he or she will truly live in the present. There is little memory of the past and certainly none of what was eaten for breakfast or what’s in the morning paper. Life is an in-the-moment Zen experience. Help your loved one experience it.
P.S. The weekend my mother died, my younger brother and I arrived at her bedside. She knew us immediately, told us she had to go, but that she was afraid. That night she looked up at the ceiling of her room and said the names of her three siblings—all of them dead for a long time. Then she fell asleep. In the morning she was in a coma and died two days later. This was a gift for us. But she had dementia? Yes, my mother had dementia. Her ending was a blessed gift.