Explaining a PWD's condition quickly to a stranger

dancsfo

If you need to describe a PWD's condition quickly to a stranger, like a repair person making smalltalk, what do you do? There are these "aware and share" cards, that says "please be patient and have some understanding" but that takes time to read.

It's not easy. Each description has some awkwardness and I can't expect the person to understand specific medical terms either.

• You can describe, "dementia", to the repairperson, but they may say: "you mean, like forgetful?" No, it's like the PWD may think that 30-year appliance we're fixing was bought recently and is complaining something new shouldn't break so easily.
• You can say "senile", but that's broad and open to interpretation.
• "Brain damage" sounds mean, and while it may be technically accurate, can be misinterpreted, "like got in a car accident and hit their head?"

I guess it really depends on the PWD's stage as well. In many cases, you need to whisper it, just in case PWD will overhear & get upset.

Of course, I would take time to carefully explain to someone close, like a friend or neighbor, so I am not worried about that..

easy23

I say Alzheimer's. People seem to get it.

mommyandme (m&m)

I started to say, mention it when calling the repair place.. After second thought…. bad idea because a dishonest person may take advantage of the PWD via scam or another nefarious action.

When my sister planned her wedding reception, someone from the restaurant knew the house would be empty and burglarized us while we were celebrating…jerks.

Sometimes I didn’t say anything because it’s none of their business, other times Id simply say “Dementia”.

forbarbara

I always refer to it as ‘your confusion’ to my MIL. She seems to accept that - maybe it validates how she feels and at first it was important to her not to label it as a disease.
If there’s a term your PWD is comfortable with, try using that with people who just need a quick explanation. That way you can use it in front of the PWD without upsetting them.

dancsfo

@mommyandme (m&m) Good point about scams - I was mostly concerned with things like phone scams but there are others ways in which scammers can take advantage. @easy23 I think people will get it, and I don't have to be medically accurate.

I think I may be overthinking this. If the strangers are confused about the behavior, then I can intervene. I'll be there most of the time anyhow.

harshedbuzz

I sat on this post for a while.

I come to this from Autismworld and I feel like the same applies here. There's a lot of overlap in navigated the world in the company of a person who looks "normal" but behaves in an unexpected manner.

In deciding whether to share about my son's diagnosis, it was important to remember that this was his "information" and not my own. I followed a need-to-know protocol with both parties. If we were interacting with a professional like a doctor, PT or teacher, I gave them the relevant information. If I was leaving either in the care of someone who might be acting in loco parentis, like a caregiver or DS's scoutmasters, I also explained the diagnosis and behavior management strategies specific to them. I can't imagine any circumstances where an appliance repair person needs to be looped in; it's OK if they're confused.

LOL, the only time I broke this rule was once when my niece and I took my parents, pre-diagnosis, to dinner. Dad was already in a pissy mood because I wouldn't let him bring a cocktail to the restaurant while I was driving. His mood further soured when my niece discretely made sure we were seated at a table with a male server to avoid dad's cringy behavior with young women. He was pretty unfiltered at this point in the disease and alcohol enhanced this. He was a total ass through dinner; I would have bailed saved mom really being happy. Midway through the meal, my niece excused herself to use the ladies room and I did not long after. This was my cover to explain and apologize to the server and slip him a generous tip. He told me "yeah, the girl at your table told me". He was pretty annoyed with us. I think between the 2 off us we tipped $150 plus what dad who insisted on paying left. He deserved every penny.

The other piece is to think about why you're explaining. If it's because you feel embarrassed by his behavior, it's probably not worth explaining in one-off encounters. When mom had a new HVAC system installed, I was on hand to answer any questions. Mom told the techs she had to leave for an appointment, but that her daughter was there to answer any questions they had. They got it.

HB

HollyBerry

I've been mulling this situation a lot lately. Last fall when we had new gutters installed, I told the guy before he came that my partner has Alzheimers and was sometimes sensitive to loud noises and banging, so if she was having a rough day we'd go someplace in the car. When we have to have someone come in the house, with notice, she tends to hide so it's not as much of a problem - although I have to deal with the complaining before and after. Yesterday a friend stopped by unannounced to pick something up and I couldn't remember if she knew; a text afterward made me feel better.

The situations I can't figure out are the times she's borderline inappropriate with strangers in a store or in public. I don't have a good way of walking back later and apologising or explaining. I"ve stopped encouraging her to come to the store with me so we can avoid the whole issue, which is sort of too bad because she used to like going to Goodwill or Farm & Fleet, but now seems just as happy to stay home or stay in the car while I go in. Related to someone else's post earlier today, I'm no longer breaking my neck creating opportunities for her enrichment, so if she wants to stay home and I want her to stay home, it's a win-win.

Re the comment about need to know vs nice to know — I like that framing. I find that acquaintances and friends/family are much kinder when they know what's up. I do my part by limiting contact with the people who can't find that kindness, when I can.

Iris L.

Regarding finding enrichment activities: after a certain time, what is enriching for a PWD are consistency and routineness, sort of like a Groundhog Day. They don't do well out of their comfort zone or with big surprises or with large groups. Failure-free activities are desirable. For example, going to the effort of planning a special weekend might be met with, "what weekend?" On the other hand, a trip to an ice cream parlor or a pizza parlor might be a nice treat, so what if they don't remember after five minutes?

Iris