Tag: death

Stop taking people with dementia to the cemetery

[youtube https://www.youtube.com/watch?v=valjImIyxY4?feature=oembed&enablejsapi=1&origin=https://safe.txmblr.com&wmode=opaque&w=540&h=304] “Oh yeah, every time that dad forgets mom is dead, we head to the cemetery so he can see her gravestone.” WHAT. I can’t tell you how many times I’ve heard some version of this awful story. Stop taking people with dementia to the cemetery. Seriously. I cringe every single time someone tells me about their “plan” to remind a loved one that their loved one is dead. I also hear this a lot: “I keep reminding mom that her sister is dead, and sometimes she recalls it once I’ve said it.” That’s still not a good thing. Why are we trying to force people to remember that their loved ones have passed away? If your loved one with dementia has lost track of their timeline, and forgotten that a loved one is dead, don’t remind them. What’s the point of reintroducing that kind of pain? Here’s the thing: they will forget again, and they will ask again. You’re never, ever, ever, going to “convince” them of something permanently. Instead, do this: “Dad, where do you think mom is?” When he tells you the answer, repeat that answer to him and assert that it sounds correct. For example, if he says, “I think mom is at work,” say, “Yes, that sounds right, I think she must be at work.” If he says, “I think she passed away,” say, “Yes, she passed away.”

June 22, 2018

Should I remind her that her sister died?

Grace was upset. Here they came again, these people, trying to move someone into the room she shared with her sister. Hadn’t she already told them? Her sister lives here! They can’t use that bed! Her sister would be back tonight! Grace’s sister had died a few months earlier, but Grace did not remember that. Unfortunately, the staff was intent on moving someone into her room. It was a census problem for the staff and the management, but it was a moral problem when it came to Grace. A nurse appeared at Grace’s door. “Grace, look,” she said. “This is your sister’s obituary. See? She’s dead.” Grace paused, looking at the paper. “That doesn’t make any sense,” she replied. “I just saw her ten minutes ago!” When someone with dementia loses a loved one, why do we feel the need to remind them? The staff needed to let Grace’s sister “remain alive,” and it wouldn’t even take any work on their part. I recommended to this group that they actually moved a third bed into the room, keeping Grace’s sister’s “bed” open for her. Either that, I’d said, or forget about moving anyone into that room. It wasn’t worth upsetting Grace in order to increase the census! Caregivers get really upset when they feel like they are “lying” to their loved ones with dementia. “Well, she thinks that her sister is alive, shouldn’t I remind her that she’s dead?” people will ask me. The answer: no. Why disrupt someone’s happiness so that you can deliver them the “truth” from our world?

August 11, 2017

What do I say when mom asks where my dad is?

It’s a question I hear often. I’ve heard it many different ways, from many different people, in many different scenarios, but it’s always the same type of question: “My ____ has passed away, and my loved one with dementia keeps asking about where they are. What do I tell my loved one?” No one wants to feel like they are “lying” to their loved one with dementia. I encourage you, however, to take the word “lying” and to throw it right out of your vocabulary in dementia care. When we take the time to get into someone’s else’s world (embrace their reality) we aren’t lying to them. We are just meeting them where they are. Many people with dementia will, at some point, have trouble remembering that the loved one they miss is dead. It’s not our job to remind them. In fact, it’s much nicer if that person doesn’t realize that their friend or family member has passed away, don’t you think? In order to get in that person’s world and answer their question correctly, I usually tell people to ask this: “I don’t know, where do YOU think that ___ is?” You’ll probably get an answer like, “I think he’s at work,” or, “I think she’s out with her sister.” Agree with this answer. “Yes, I think you’re right, he must be at work,” or, “You’re right, I remember now, she’s with her sister.” You don’t need to be creative—you just need to be a good listener. Your loved one with dementia wants an answer, they don’t want the runaround of a redirection or a distraction! You can provide them with an answer that satisfies both of you. And, recall that “lying” is not something you need to worry about. Embrace your loved one’s reality, and you’ll both be happier for it.

November 7, 2016

The always-made bed

Two single beds sat beside one another. One, unmade, sheets uneven, looked as though it had just been slept in. The other, made, simple—a single sheet on it. A black winter cap lay at the head of the bed, untouched for days, maybe months on end. The rest of the room contained women’s clothing. Clean clothes hung up in the closet, brand new adult briefs still in the package on the shelf, and women’s socks on the floor beside the bed. Dorothy sat in the other room, watching TV, holding close her little stuffed dog. She smiled and talked to the dog as if he were real. “I’m going to go eat lunch,” she told him. “You can follow me in there.” The unmade bed belonged to Dorothy. The made bed belonged to her husband, a man who had passed away over a year before. Dorothy often asked about her husband. “Where’s Jack?” she’d say. “I think he’s downstairs, working,” the family would offer. “Oh, he’s always working,” she’d smile, accepting this new truth. Dorothy was glad that her husband was still nearby. And, for a woman whose world existed in about 15-minute time frames, this reality was perfect. “We left the bed in the same condition as the day that my dad passed away,” her son said. “It’s better for my mom…I think it’s a comfort for her.”

October 11, 2016

A Tough Conversation

Usually, when a visitor to our community tries to “correct” one of my residents, I jump in and try to save the conversation. For example, if a resident’s daughter is visiting and says, “No, mom, don’t you remember, dad died years ago!” I will try to swoop in and change the interaction so that no one gets upset. When that same conversation is between two residents with dementia, though, I’m kind of stuck watching it happen. The interesting thing about working in a community that’s in a small town is that many of the residents knew each other from years ago.** Two of my residents, Ellen and Isabelle, are related by marriage. **Distantly related—cousins, in fact—but still related. Ellen is very high-functioning. She’s living in our Memory Care because she needs reminders, cues, and other help to keep her safe. Up until recently Ellen was actually living by herself in an apartment, but that was very dangerous. Isabelle can do most things for herself with cueing and assistance, but her short-term memory is awful. **She can’t remember anything that happened more than three minutes ago. **This makes the pair’s interactions difficult to listen to. “Ellen! What are YOU doing here!” Isabelle cried excitedly, spotting her cousin-in-law in the hallway. “I live here, my room is right down the hall,” Ellen replied, trying to be kind about it.** She knew that Isabelle’s memory was poor—she just didn’t realize that her own memory was impaired, too.** “Hey, Ellen, can you get someone to call my husband, Jim?” Isabelle asked. “I want him to come pick me up.” Ellen paused. I could tell that she knew Jim was dead, but she was mystified by Isabelle’s current state of mind. “Honey…I don’t think Jim can come pick you up today,” Ellen offered, slowly. “He’s probably busy,” she tried. Isabelle shook her head. “Nah, he’s retired! Can you call him for me?” Ellen sighed. “Honey…Jim is dead. My husband is dead too. I’m sorry…but don’t you remember? We went to their funerals together.” “What!” Isabelle yelled. “Jim isn’t dead! I just saw him earlier today! He drives a truck,” she reasoned. “No, Isabelle,” Ellen said, growing impatient. “He died years ago.” “Ah, you’re crazy, Ellen!” Isabelle shook her head. “Jim isn’t dead.” Ellen gave up. “Okay, Isabelle,” she said. “I’m going to go to dinner now.” Isabelle paused. “Hey!” she called up the hall. “Ellen! Can you get someone to call my husband!”

August 22, 2016

Lunch & Old Friends

A memory of mine from two years ago: I had taken a few of my residents out to lunch when I noticed a woman across the restaurant quietly observing us. It’s not uncommon for me to get a few looks or smiles when I’m out with my residents, but this woman looked as though she wanted to speak to us. A minute passed, and the woman from across the room walked over to our table. She was older, perhaps in her late 70s. She smiled at one of my residents, Ruth, and gently touched her on the shoulder. “You look so familiar to me. I know you from somewhere,” the woman said. Ruth looked up at her. “You look familiar, too!” she responded. “What is your name?” the woman asked Ruth. Ruth told her, and the woman smiled. “My husband worked with you at the department store down the road for years. Do you remember James Quinn?” the woman asked Ruth. I bit my lip. She doesn’t know that Ruth has dementia, I thought. Fortunately, Ruth’s long-term memory is very much intact. “Oh! James Quinn! He is such a lovely man! He was my manager at the department store,” she smiled, clutching the woman’s hand. The woman’s eyes twinkled and she held Ruth’s fingers in hers. “He was a wonderful husband,” she said. “Unfortunately, he passed away last year.” “Oh, I’m so sorry,” Ruth replied. The woman told Ruth a couple more stories. Ruth smiled and asked questions. “Now, your husband…did you say that he had passed away?” Ruth asked. The woman looked slightly confused. “Well, yes, sadly, he died last year. A long battle with cancer,” she explained. The two exchanged a couple more words and gave each other a hug. The woman left the restaurant. Ruth turned to me. “I didn’t have the heart to ask if her husband James was still alive,” she whispered, eyes wide. “I’m sure he’s doing fine,” I replied, softly. “I hope so. He was such a nice man,” Ruth said, thoughtfully.

August 6, 2016

Death & Dementia.

“What happens when your residents die? Do your other residents get upset? Do they remember that person?” many people have asked me. Angela* has fairly advanced dementia and lives in our community. One day, we received some bad news. Her family emailed us to let us know that her husband, who lived outside the community, had died. They didn’t know what to do—should they tell her? I emailed back and said that, no, they should definitely not tell Angela. Although it seems cruel to “keep her in the dark,” telling her the terrible news wouldn’t do any good. Her dementia is advanced enough that hearing this news would no doubt confuse her. Angela is beyond the point of being able to completely comprehend or deal with something this traumatic. Inevitably, she would soon forget what she’d been told, but she would still feel upset—she just wouldn’t know why she was feeling that way. Angela remembers her husband. When he would come to visit her, she’d go and greet him at the door. It was nice to see them sitting close on the couch, holding hands. It’s not fair, though, to force her to come to terms with the fact that he’s died: in her world, he’s still alive. Hearing it once wouldn’t count for anything, either. She would never recall that he’s passed away after hearing it once, twice, or two hundred times. In other words, it’s just not worth causing this woman any unnecessary pain.

November 12, 2014