Was I Insensitive for mentioning Dementia to my Grandma who has it?

[Zoro Fan]

My grandma is turning 90 in one month, and everyone knows that she has dementia. It's never been something that anybody has tried to hide before.

My non-binary sibling and I (a trans man) volunteered to stay with our grandma to take care of her because she was going to be left alone for a whole month. She's already fallen a couple of times in the past, so that would have been dangerous for her.

Two days before our flight (from Washington to Texas) our Aunt announced that she decided to stay with Grandma. It was too late for us to change our flight so we just went anyway as planned.

During our visit our grandma made many hurtful comments, but that had been something both of us already expected. The problem was that our Aunt being there as well ended up aggravating the situation.

After only 2 weeks of our original 2 month trip, both my sibling and my mental health had declined to a very dangerous place. We decided we needed to remove ourselves from that environment for our own safety.

When they heard we wanted to leave early, above all they (understandably) wanted to know why. I thought it would be best for all of us if I told them the truth, so I repeated everything they had both said while we were there that hurt us.

During the conversation, at one point my grandma was apologizing for things that she couldn't even remember saying, so I tried to comfort her by telling her that we knew it wasn't her fault, and it was because of the dementia.

My aunt interrupted at that point and told me that now I was the one being insensitive by mentioning Dementia. And that now both my sibling and I had apparently mentioned her dementia, and that it wasn't right. She acted offended on our grandma's behalf and said that she hadn't even been officially diagnosed.

Obviously I immediately apologized, because I don't know the proper etiquette when talking about dementia. Whenever anyone talked about my grandma they always mentioned dementia by name, so I just thought they already knew it for a fact.

But then I asked my grandma if me talking about it hurt or upset her and she said it didn't bother her at all, the only thing she was upset about was that we were leaving.

There's obviously much more to this story, but what my aunt said then has been bothering me the most. I called my mom afterwards and told her the situation and she said she didn't see any problem with it since I was trying to comfort grandma, not be malicious, and there was no way to talk to her about her dementia without actually mentioning her dementia.

Both my mom, and my aunt are incredibly different so this might just be a simple matter of difference of personal opinion, but I still feel guilty about it regardless. I want to know if I made a mistake and accidentally said something really hurtful without meaning to.

 

[Banjomansmate]

As your Grandmother has told you that she wasn’t upset by your reference to dementia just take her word for it. It is likely she will have forgotten about it within a short while. The problem is your aunt’s, obviously determined to take umbrage on behalf of other people.

 

[canary]

Hello @Zero Fan and welcome to the forum

I want to know if I made a mistake and accidentally said something really hurtful without meaning to.

No, I dont think it was a mistake. The advice with dementia is to avoid distress. My mum used to get very distressed if I mentioned her dementia so I used to refer to her "memory problems" which she was happy with. Your grandma, though, wasnt distressed so it was quite different from my mum.

I am a bit concerned about your aunts reaction, though, which seems out of proportion. Is she right that your grandma hasnt got an official diagnosis?
Nevertheless, reading between the lines it does sound as though maybe your aunt is in denial about your grandmas condition.

 

[Grannie G]

Welcome from me too @Zoro Fan

It sounds like your aunt, who I presume is the daughter of your grandmother is more upset by the word dementia than your grandmother was.

I would choose not to use the term dementia if memory loss is more appropriate, simply because we never know how that term will be received, so better to air on the side of caution.

However, what`s done is done and no harm came to your grandmother which is of most importance.

Try not to let this get to you. I hope it won`t put you off visiting your grandmother

From your post, it sounds as if you all live a good distance away from your grandmother. This would be my concern. I would want to get a diagnosis and arrange for as much help as possible especially if your grandmother is a falls risk.

 

[Zoro Fan]

I am a bit concerned about your aunts reaction, though, which seems out of proportion. Is she right that your grandma hasn't got an official diagnosis?
Nevertheless, reading between the lines it does sound as though maybe your aunt is in denial about your grandmas condition.

My mom says she really hasn't been diagnosed. What confuses me is that my aunt, as well as all my other aunts and uncles, commonly talk about my grandma's dementia and memory loss, even right in front of her. My aunt has even teased my grandma about her forgetting things, which after doing some research seems to be much more insensitive.

 

[Zoro Fan]

From your post, it sounds as if you all live a good distance away from your grandmother. This would be my concern. I would want to get a diagnosis and arrange for as much help as possible especially if your grandmother is a falls risk.

Thankfully one of my uncle's lives with my grandma and takes care of her, and my other uncle lives very close by. My uncle that lives with her was planning on going on a trip, and that was what created this situation, but usually she is pretty well taken care of. Although obviously not as much as her children would like, she's very stubborn and refuses to move or try and get a caregiver, so they're always worried about her.

 

[Zoro Fan]

No, I dont think it was a mistake. The advice with dementia is to avoid distress. My mum used to get very distressed if I mentioned her dementia so I used to refer to her "memory problems" which she was happy with. Your grandma, though, wasnt distressed so it was quite different from my mum.

Thank you, I'm really relieved after reading these replies. I've definitely learned a lot more about dementia and what things not to say now, and it's made me feel a lot more understanding of my grandma after all of this. I really appreciate it!!

 

[Zoro Fan]

I would choose not to use the term dementia if memory loss is more appropriate, simply because we never know how that term will be received, so better to air on the side of caution.

However, what`s done is done and no harm came to your grandmother which is of most importance.

Try not to let this get to you. I hope it won`t put you off visiting your grandmother

This has been a really big learning experience for me, before all this I didn't know much about dementia at all, I'm really glad I found this site and decided to post here.

Before, I honestly was really hurt by some of the things my grandma had said while we were there, even tho I knew it wasn't her fault. But now I feel guilty for thinking that way, after learning more about it, now I realize she's probably hurting really badly too, but for her it's every day.

When my mental health is better I want to try and visit her again some day, I just hope that I can before it's too late.

 

[Gosling]

You may find some of the information in this link helpful @Zoro Fan

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Zoro Fan]

As your Grandmother has told you that she wasn’t upset by your reference to dementia just take her word for it. It is likely she will have forgotten about it within a short while. The problem is your aunt’s, obviously determined to take umbrage on behalf of other people.

I'm really relieved that you said this, when she said that I felt incredibly surprised cause it felt hypocritical for my aunt to say that. And it also hurt because during the middle of our conversation she went on her phone and stopped paying attention unless I called out her name.

I thought that if I really had said something wrong then I wasn't justified in feeling offended by her behavior, so it's just nice to hear support from people who are much more informed on this subject than I am.

 

[Zoro Fan]

You may find some of the information in this link helpful

Wow!! This is incredibly eye opening and helpful, this is exactly what I needed thank you! I now recognize how much I and many of my relatives were handling situations the wrong way.

If I get to visit my grandma again, I'll be able to be much better prepared and hopefully it will go much better for both of us! I'm happy that I'm now able to look forward to visiting her again, even tho we had to leave early this time.

I'll do my best to send this to my family and inform them as well, I just hope they will actually listen. They're not exactly the best at caring about their words unfortunately.

Regardless, at least now I know and I can avoid making the same mistakes again, and I can help my grandma much more.