Monday, January 7, 2019

Sorry, dude, I'm not playing along with your fantasy


It was inevitable: Within an hour of arriving at our resort in the Dominican Republic for vacation, Max had decided he wasn't returning home. This tends to happen anytime we go somewhere warm—Max does not like the cold. And he really likes palm trees. I even put up some in his bedroom for his birthday.


Last year, Max got fixated on moving to Jamaica when we visited there. Soon enough, he'd moved on to Orlando. It's where he's been planning to move in a few years. Only now he'd found a new fantasy destination. "It's disgusting at home!" he'd announce approximately every 10 minutes. "I'm staying here!" 

I tried, as I usually do, to reason with him. What about school? People don't live in hotels. What about Daddy's job? Mine? Didn't matter.  

Dave was Max's go-to enabler: "Yeah, we hate the cold!" Dave would agree. "It's disgusting at home!" And then they'd cackle and bow their heads over Dave's iPhone to check out flights to the Dominican Republic and figure out when they could return. When really wasn't going to happen anytime soon.

I'd brought a pile of magazines on vacation and happened to read an article in The New Yorker about a trend in the care of people with dementia: making the memories they perceive as reality actually seem real, to comfort them. One facility had been designed to resemble an old-fashioned town square, to evoke residents' childhoods. Some homes offer residents baby dolls, so they can pretend they are their children. Others have fake bus stops, so that if a resident asks to go home he can sit and wait for a bus with an aide. Hours later, once a person has forgotten why they are sitting on the bench, they can go back. The thinking is that deception is the most benign and compassionate choice.

And yet, there are those who oppose these fake worlds and false realities—including patients with dementia. They have moments of lucidity, and if they realize they are being lied to, it may create distrust that lingers. People with dementia tend to already be suspicious of people, and if there is inconsistency in what they are being told—one person might tell them their husband is shopping, another that he's dead—it could exacerbate their anxiety. As one expert said, "It shouldn't be about deceiving people. It should be about giving them meaningful lives in the present, rather than trying to keep them in nostalgic themes from the past." Rather than standing at a fake bus stop, there could be a conversation about the person's desire to go home and what home means to them. 

Obviously, Max's neurological condition is very different than dementia. But the point of the article—not lying to someone who can be readily deceived—struck home with me. Max deserves the truth, even if it doesn't make him happy. I do think he is aware he can't just up and move to the Dominican Republic, even if he chooses not to believe it. And while he may be temporarily happy if we play along, I don't want him to ever come to the realization that we're not always honest with him.

And so, Max would tell me he was staying in the DR and I'd say, "Well, you can't live in a hotel or move away from home right now but maybe next year we'll go somewhere warm on vacation again. Would you like to go to Hawaii someday? I was there once!" And he'd whine roar but I wouldn't give in. Or he'd tell me it's disgusting back at home and I'd remind him that spring would be here in a few months. Meanwhile, he wasn't giving up on his dreams of moving to Orlando, either—he'd spend six months in the DR, six months in Orlando. Like he was retired. Or a socialite.

This kept up until the day before we left, when I asked, "So, do you want to stop by the teen club in the morning tomorrow before we go home?" and he said, "Yes." He'd accepted that we were leaving. This did not stop him from crying on and off for the next few hours, including as we traipsed through Security at the airport. He wailed as the plane landed. 

By the next day, he was back to his usual self. Yes, he was walking around in his Dominican Republic hat, but he was asking to go to Home Depot, where he shops for his fantasy home in Orlando. That I'm more or less OK with. Maybe it's more extreme than your average wishful thinking and daydreaming, but he's not insisting on moving there tomorrow, maybe when he's 20. We're going to London in the spring. Who knows, maybe he'll take a liking to it, although tropical, it's not.

We went into New York City last weekend and as we headed home on the train and emerged from a tunnel, Ben asked where we were and I told him.

"It's disgusting here!" he said. 

Sigh. 

6 comments:

  1. Bahahaha aw Ben. How blessed your family is to have so many opportunities to travel. I know you work hard in order to give them these experiences. Thanks for giving me something to look forward too with this "blog".

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    1. Thank you, CJ! Happy New Year. Dave and I loved traveling before we had children, and we've tried to keep it up. I think it's a major learning experience for them. We plan at least one big trip a year, and some smaller ones. I remember the trips my family took when I was a kid. It's a priceless investment.

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    2. Will admit I wasn't 100% sure who said "It's disgusting here" - Max or Ben - in this context.

      Yes, travel is a big learning experience for the children and the family.

      The smaller ones in particular.

      I think also you gain a lot of yourself doing the things you did before children. And the children gain also.

      And then there are experiences none of you have ever had before or thought about.

      Thinking of Linda and Ed in the New Yorker article. He had this house in Huntsville and she would write things on the reality orientation board.

      And 20 might as well be tomorrow.

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  2. Or like a bird that winters and summers and follows the migratory routes.

    Today I watched the HiHoKids of Seattle as they met Miriam, who is 70 years old and lives with Alzheimers. They talked about the community she lives with where there are lots of friends.

    And the New Yorker article to which you refer, Ellen, is in my Notes. I put it there October last.

    Also I read a site called Dementia by Day which is by Rachael Wonderlin and she has 16 things and 3 things to save you stress - especially "What do you think?"

    Readers can take a class or do an improv with Wonderlin.

    Hope you all have a wonderful time in London. The Underground, for instance. And the clubs and the pubs.

    Another recent experience which showed me how easy it is to deceive - and how important to believe - was a Bougainville [autonomous territory of Papua New Guinea] fast money scheme known as U-Vistract Financial Systems. The reading of Cox's thesis yesterday afternoon and evening was a big moment for me. [Then I tried to make Netflix work on anything that wasn't a computer].

    I quite think Max would enjoy PNG and Fiji. And indeed much of the South Pacific.

    Tropical islands and true believers! And cultists also. [Guyana I am thinking of in particular].

    Nozick had/has a good point about the Experience Machine.

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  3. Most people with dementia have Alzheimer's which typically results long term memory being preserved until very late in the illness. I've seen what care facilities that try to be "dignified" look like, often they must be restrained or sedated to control behaviors. The residents are bored and sometimes agressive. My cousin used to come home from work at one of these places with significant injuries. She really wanted to give then toys but it was not allowed and none of them were capable of holding a coherent conversation or doing regular activities anymore. Many of them thought they children and would ask for their parents. They were instead given "age appropriate" activities which they don't do, real glass cups which they break and injure themselves on ect. It's sad. These are people with very advanced dementia.

    The trend you are referencing in dementia care allows people to tap into their remaining memories. Being able to go into a room and reinact familiar routines may prompt conversations about childhood memories or experiences in their young adulthood.The bus stops you talk about are designed so that if someone wanders away from the unit they will likely see the bus stop and instinctively sit there and that staff know to look there if someone js missing. This along with other steps allows some units to avoid locking people inside. Many but not all find a babydoll to care for comforting. Some realize it is not a real baby but the physical doll and the act of caring for it can help them organize their thoughts and memories of past times theg engaged in childcare and again offer more chances for precious communication. Most of the experiences I've read of these units truly do seem positive and kind. People often are much less agitated. They have options for activities that they, at that stage in their life, actually want to do. No one should be forced into this if it doesn't work for them but for many people with dementia it's a gift. The focus is on who they are at that moment not who they were before the dementia.

    Continued in next comment*

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  4. I generally agree with your sentiments I think in this case you made a hasty and false comparison. Max is a young man approaching adulthood. He will hopefully be at least somewhat independent. Learning how to be realistic (It would be fun to live in Florida but could I actually do that? What do I need to do to do it?) will help him gain independence and live a full life. It's reasonable to be push him to focus on the real world, especially as he has someone in dad eho balances that out. But people with severe dementia are in the last bit of their life. There is no benefit to forcing a reality in then that tbey don't remember and often don't want. The "benefit" is only to the people who still remember and can't let go of the person with dementia. Losing your entire self piece by piece is encredibly painful. We've seen it happe n and it's now happening to someone we are very fond of. She is in the early stages but we all know what is coming. If it were up to me when the time came I would 100% use one of the facilities that takes the time and effort to provide meaningful (to the patient, not to the outside world) activities because it's been shown to increase quality of life and when someone has severe dementia I think our focus should 100% be on quality of life. Eat bacon and ice cream if you want, play with toys, pretend you are at the job that gave you so much purpose or caring for a child again. I think we owe that to elderly people. I hope that perhaps you look a little deeper into this and realize that many of the objections stem from society's idea of what is appropriate and not what actually works to give many people more peace at the end of life. No one forces these people to play with dolls or any od the other activities. They choose, if they want, to go engage. Imagine also if you would want to have your final years consist of hearing, every single day, rhat the person you loved most is dead. Imagine feeling that pain again every day for the last few years of your life and id that is what you would really want. I don't mean to come off as harsh but your article today feels quite judgemental towards people who are caring for individuals with a progressive, fatal condition that has no effecfive treatment and who already face much guilt and judgement if they have to place their loved one in a care facility.

    https://www.frontiersin.org/articles/10.3389/fpsyg.2014.00342/full

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Thanks for sharing!



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