February 25, 2015: Imagine yourself sitting around the dinner table with members of your family or a group of your friends. Suddenly they start talking about you and the intimate details of your life as if you’re not there.
“She got up early. Had a BM first thing. I gave her a bath, got her dressed and then made breakfast. The bath wasn’t easy. She got a bit cranky, but she was okay once it was over,” your daughter or friend says. You are speechless.
“What about this afternoon? Did she sleep?” your son or friend asks. EXCUSE ME? You think to yourself.
“No, I took her Wal-Mart. She needs some new clothes.” She ‘took’ me!? I can take myself thank you very much, and I prefer to shop at Simons. This is what you think, but for some reason you’re not able to get the words out fast enough to say so.
“Gee, I’m not sure she should be out in this kind of weather.” That’s your son. Hey! Wait a minute! What’s going on? Suddenly I don’t exist anymore? Suddenly I am invisible?
How would you react to being invisible? I would feel humiliated and embarrassed. And pissed off. REALLY REALLY pissed off. And I wouldn’t get over it in a hurry either. Especially if it kept happening over and over and over again.
I know that despite the outward symptoms of being in the later stages of Alzheimer’s disease, despite the fact that she can’t keep up with the pace of “normal” conversation, despite the fact that it takes her a long time to process information, and despite her aphasia, Mom is aware and is affected by what happens around her.
She sees and hears and feels. She understands. She is here. In a different way than someone without dementia perhaps, but she is definitely here. I know it as surely as my heart beats in my chest as I write this. I have seen the indisputable evidence. I have experienced her intuition and wisdom.
Yet we treat millions of people like my mom who live with dementia as if they don’t exist. We do it in their homes and in public places. We do it in doctors’ offices, care facilities and hospitals. We do it everywhere. I see it and hear it all the time. I’ve been guilty of it myself. It’s hard not to do what everyone else does. This way of treating people with dementia has become normalized. Accepted. Even though it is disrespectful, demeaning and damaging.
I hate it when others talk about Mom like she’s not there, and I hate it even more when I slip and do it myself. No one does it maliciously. Or at least not most. Mostly people are trying to be helpful, not hurtful. But I’m certain that speaking about her like she’s not here when she is makes Mom feel diminished. I know what it’s like to feel invisible. It’s painful. We all have a right to be seen and heard.
“I’m thrilled we were able to shine a light on Alzheimer’s disease,” actor Julianne Moore said when she accepted the 2015 Oscar for Best Actress for her role in Still Alice. “So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is that they make us feel seen and not alone. And people with Alzheimer’s deserve to be seen so that we can find a cure.”
I agree with her. But we need to do more than find a cure. I believe we have to see people with dementia as the whole people they are so we can support them and help them to live rich, full lives for as long as possible. Finding a cure will be amazing. In the meantime, we must find better ways to integrate people with dementia into “our world.” People with dementia are not “shells.” They do not disappear when they are diagnosed. Memories do not define human beings. Being and feeling do.
In September 2014 Mom and I had a profound conversation in which she shared what she wanted from her life now. She told me she prefers to be awake rather than asleep; that she wants to “keep going” as long as she can. She is aware others often don’t see her for all she was and still is.
“There is more to me than what you can get,” she told me. I know exactly what she means. To me, it’s perfectly clear. Yes, she is not invisible. And neither am I. Nor will we ever be.
February 25, 2015
My Mom died on August 17, 2016. I’m so grateful I was able to see her until the very end.
https://myalzheimersstory.com/2016/03/21/i-see-you-i-love-you-i-miss-you/
https://myalzheimersstory.com/2018/03/27/i-wish-you-could-see-her/
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My Alzheimer's Story 
This is a very helpful nudge for those of us who help care for a loved one with dementia. My Momma will always be that, my mother, I am not the parent, she is. Sometimes in the middle of it I must work really hard to remember that.
Your words always help Susan, thank you.
Kat
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Yes, an excellent reminder and so easy to forget. I always try to be sensitive to not discussing Gregory in front of him unless I include him. I will ask the person, nurse, aide, doctor etc to step out into the hall. If that is not possible I will look at Gregory and say, “I need to talk about you to help so-and-so or whatever.” When there is a group of people chatting I am careful not to talk about things that I know will upset him. When I visit Gregory I love visiting with many of his fellow residents. The social worker made a comment that surprised and pleased me. She said, “Michael I think the reason you are so well liked is that you still see the person, not the disease.” Also, I have learned to easily live in their world (sometimes I call this likable lying) for example when asked, “When will my son get here?” every day for a week, I have learned to answer, “I am sure he is on his way.” It helps calm the resident and makes her feel good. Whether the son shows up or not ended us being besides the point as the memory doesn’t hold long enough for her to be disappointed when the son does not show up. Finally you have a photo of one of those “It is Friday Afternoon” clocks on your blog. Gregory and I gifted one to his floor and the residents actually make use of it!
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“…you still see the person, not the disease.”
yes, this is vitally important in my view. And you’ve got some great ideas there about ways to be respectful. I love that you will say to him “I have to talk about you.” that so perfect!
What a wonderful care partner you are, and you are so right when you said we’re in it for the love ❤
You’ve got a great blog too – I subscribed immediately 🙂
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It is so easy to forget when they are unable to engage with us as they used to. I hear that this sometimes starts as early as diagnosis when the doctor starts to talk to the loved one instead of the individual – uugh, that would piss me off. I also agree that we need to put more focus on adapting our communities so that people with different needs can be included.
BTW, I almost didn’t get past the picture – I love mom’s glasses!
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Yes, Mike you’re right on all counts. And yeah the glasses are pretty cool 🙂
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Well said Punkie,
So easy to fall in the trap of treating them like they are not there, as if theyve already left us. I like your reference to your mum’s comments about wanting to be here even though its in a different presence as before..
xxx
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Yes, it is SO easy to fall into the trap! It takes constant vigilance to stay respectful of their personhood ❤
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Great post, as usual! Just saw Still Alice this evening. Had been avoiding it, but glad to have finally seen it. I hated when the husband and older daughter patronized Alice and talked about her as if she wasn’t there. So rude, disrespectful, as if Alice’s wants and desires no longer had any meaning. Loved how the younger daughter connected with Alice. I thought I was going to lose it emotionally when Lydia apologized for the fight and then I truly sobbed when Lydia gave Alice her journal with the note: no secrets. So moving!
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Heidi, I read the book when it first came out in 2007 as I was trying to prepare myself for what was to come with Mom. There weren’t a lot of resources then, or at least not as many as there are now. I haven’t seen the movie yet. I intend to this week.
I remember being struck by the scene of which you speak, or at least it sounds like the scene I’m thinking of. This is how it goes in the book: Anna, Lydia and Tom Alice’s three children are over having dinner with Alice’s husband John and Alice herself. John is contemplating accepting a position in New York City, which will mean a move from where they live. Anna, Lydia, Tom and John discuss amongst themselves the merits of such a move and how it will impact them and Alice. They don’t include Alice in the conversation. The passage says:
“They talked about her as if she weren’t sitting in the wing chair a few feet away. The talk about her, in front of her, as if she were deaf. They talked about her, in front of her without including her as if she had Alzheimer’s disease.”
For some reason, those few lines from the close-to-300-page book stuck with me; they hit me when I first read them, and they’ve stayed with me ever since.
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I think maybe the “purpose” behind the video is crucial and needs addressing but in a more appropriate way. As always I agree with the amazing Susan and support without a doubt that living with dementia should never be demeaned, dehumanized and disrespected by people treating them as if they have lost their humanity because they live with dementia. I also, as observed, and as pointed out, don’t support any content when people are discussing a person living with dementia, the programme etc when they are right there!!!!! Totally disrespectful and hypocritical. This includes family members, health professionals and any person who should know better by the pure fact THEY would hate it. There really is no excuse. Professionals or not. We all know this is not an appropriate way to treat another, nor make them feel insignificant in this manner.
Thankyou S.
You are awesome. X
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We are on the same page as usual Leah. You can see the video in question here: https://vimeo.com/194498782
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