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I am the only child (youngest) out of 3 natural and 5 stepchildren that visits my mother every week at her dementia care facility and takes her out for dinner and shopping. The others ignore her for months at a time. No one has insisted I do this, it's my decision, but I get a lot of static from total strangers. (I won't go into it here, but my mother kept me from seeing my father from the time I was 7 when she dumped him for a married man, until I was 21.) When my dad was dying, I went to see him. At that time, my aunt and stepmother gave me a lot of information that I didn't know and it made me resent my mother. However, I do still love and respect her and I try to help as much as possible.


Recently, while on a shopping trip, she was being snappish and willful and I was overheated, exhausted, and irritated. We finally reached the checkout and the cashier asked that question, "did you find everything you needed?" Well, Mom launched into a tirade that she couldn't find her favorite candy. Everywhere we go, she asks cashiers about it. At this particular store, they have never carried it and I tell her that every time we go there - usually more than once a trip. Eyeing the long line behind us, this time I just said "Mom, you're thinking of another store, they do not have it here, please let's just get going." Now my mom is partially deaf and I have to speak loudly for her to hear me. She reads lips and is constantly telling people to talk slowly and face her. So I said this loudly and very slowly. Like a 2 year old, she stubbornly refused to leave the checkout without her candy, so I began walking away, hoping she would just let it go and follow me. As I was leaving, the cashier made a loud remark about how "mean" I was to my mother. Now, it is necessary for me to speak loudly and slowly so she can hear. Repeating myself is also necessary because of the dementia. I did not use abusive language or tone and I certainly don't get physical with her.


Admittedly, after dealing with her behavior throughout the store, my patience was a bit thin, but I was very offended by the cashier's interpretation of me being "mean." I have a son on the autism spectrum and it reminds me of dealing with strangers observing and commenting on his public behavior when he was a child. Why do people feel the need to put in their two cents?

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The fact you are posting here makes me think she has hit very close to a sore point - through my years of child care and elder care I've observed a lot of frustrated behaviour that pushed the thin line toward abuse (yes, I'm guilty as well). The thing is that when you find yourself saying or doing things that from the outside look abusive it is time you step back and examine your methods and what you can do to change them - toddlers and those with dementia can both have unexpected tantrums but there are times and situations that make them more likely to happen, you might save yourself a lot of grief if on her uncooperative days you are prepared to limit outings or end them early.
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lablover64 Nov 2018
I think you hit the nail on the head. The facility where mom lives does not allow her to bring in large quantities of snacks and also they prohibit certain cosmetics, like nail polish and remover in her room. She knows the rules but always buys them when she is with me and then tries to sneak them in. My sister will put her foot down and tell her no, but I have trouble with that. I feel guilty because she has to live there - she lived with me for 5 years. I know when I'm too tired or sick or in a bad mood and I don't want to take her out, but she so looks forward to it and no one else will take her anymore, that I never say no. I think I'd be a lot better with her if I had a break once in a while, but if I don't show up every Sunday, she calls and, if I tell her I can't go, she cries or yells and it makes me feel bad. I know that people who don't have the care of someone with Mom's issues don't understand, but their comments aren't welcome and they add to the friction between us.
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"Why do people feel the need to put in their two cents."

Don't let it bother you. ~Be glad someone cares and would be willing to step in if that bad situation were really there. They are only seeing a snippet of your life so give them the benefit of the doubt, smile and say thanks for your concern. It's hard to explain your difficult situation and it's exhausting for you to do it. Don't bother. Move on, you have your hands full. By the way, the worst supporters of my life with my disabled child was my family. The concerns I received from strangers, especially the kind ones, were baskets of flowers to me when I heard them. Far more strangers left me feeling good on a bad day than did my family. Family always criticized me, yet they had no idea what it is really like to care for someone with special needs. ~Some people will never understand. I feel for you! I know how it goes.
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lablover64 Nov 2018
Thank you for giving me another way to look at it. If I saw what I thought was abuse of an elderly person, I would certainly speak up - I guess I can't be angry at someone who did the same. I have been lucky enough to have the support of most of my family when it came to my son. I'm so sorry that you didn't have that.
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Lablover if you are still feeling angry with that cashier, I can't think of any vengeance you can wish on her worse than that one day her eyes will be opened by experience. She spoke in ignorance.

She *intended* to be sympathetic to your mother, more than she meant to be censorious of you. "All behaviour has a positive good intention" is the axiom of Neuro Linguistic Programming theories (which personally I take with a pinch of salt, but they can be useful). Focus on people's good intentions, be they never so clumsily expressed, and you will waste less time on longing to kick them round the room.
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"some jerk may decide to report you. If mom can't hear you in store, just keep smiling & guiding her through the checkout line calmly."

It's true! This happens. Innocent situations can be misinterpreted. Think about this.
You need to have that louder voice because mom has problems hearing and following orders. You need to use that louder, forceful voice in emergency situations and regular situations to keep her safe—"mean" can sometimes mean that you are keeping someone from harm.
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I think maybe its time to rethink Moms outings. My Mom lasted an hour.
Maybe just lunch and back to the facility. Shopping another time. They get tired and like children you can't deal with them.

We would take Mom with us for dinner. We would run into people we knew. Being a caregiver 24/7 I looked at this as my social time. My husband being almost deaf, no. Mom would want to go home. My DH said something and I told him, this is the only time I see people. I have no problem in him golfing 3x a week. But I need an outlet and Mom is just going to have to wait. Cruel? It was my sanity at stake though,😊
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Yeah that's awful, I feel bad for you. It's true, people have all kinds of assumptions & are actually quite nosy these days. If I were you though, I'd stop shouting anyway cuz some jerk may decide to report you. If mom can't hear you in store, just keep smiling & guiding her through the checkout line calmly.
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That is a very good and constructive point, CW.

Save yourself a lot of grief and, I'd add from experience gained too late, self-reproach.
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This idea just popped into my head, don't know if it'll help.

The treats she likes to buy, then smuggle into her room... At school, we had to keep everything like that in a tuck box in the locker room, we weren't allowed food in the dormitories (heck it sounds like Mallory Towers - I promise you it was not).

Now I don't know if one can still buy tuck boxes, but if you look for that type of thing and keep it in the car when you're taking her out, could you persuade her that it's best to put her treats in "safekeeping"?
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lablover64 Nov 2018
The facility where she lives has a shelf specifically for her in their dry storage area. That was their compromise. If she wants a treat from her stash, she asks an aide or the cook and they unlock the storage area and get it for her. You know, with dementia patients, they often feel people are stealing from them, so this gives her a little bit of reassurance. I also bought a footlocker with a padlock and key that she keeps little treasures in that she is afraid will get stolen, i.e. a favorite sweater, her purse, her tea bags, jewelry, etc. The handyman at the facility put the key on a strong lanyard attached to her cane so it is always with her and I have the duplicate.
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