Is It Disrespectful to Share About My Mom’s Dementia?

April 25th, 2023 – Post #74

Am I dishonoring my mom to share about her memory loss?

That is a question I have been struggling with for the last few years, as I have seen my mom’s memory decline. It has felt like a double-edged sword, and I’m still struggling to put into words the sense of protection and honor I’ve attempted to act on – that has probably ended up coming across to some people as disrespect or speaking about my mom behind her back.

A picture of my mom, smiling from her hospital bed

The thing that I have come to accept about it is no matter how hard we try, everybody on this planet is going to be in a position to be misunderstood at some point, including me. Memory loss seems to be a growing issue people are dealing with; but it’s still an awkward subject to address – especially when there are days and moments when someone seems completely lucid, and other times where it’s obvious there is a disconnect.

I keep seeing posts giving advice about how to tell someone they have dementia; but haven’t come across any about what often seems like the elephant in the room – how to explain to others, outside your family, that someone you love has memory loss, so they can be aware and understanding.

I know everybody has a normal bent toward forgetfulness – including me. I want to say up front, that I want to “do unto others as I would have them do unto me”, and fully concede that in the future I may be the one unable to remember things, so this isn’t intended to belittle my mom in any way; but instead to have an open dialogue about something many families are struggling with.

For years, we had an ongoing joke in our family. When my mom would misplace her sunglasses, and be searching for them, we’d invariably have to remind her, “They’re on your head, mom!”

To me, that’s not true memory loss – that’s just a busy woman trying to get her kids out the door, for another day of unpaid taxi-duty, to and from various activities.

The last several years have been different though. A deeper element of not remembering developed.

I was aware. And I was painfully aware that sometimes others weren’t.

There were moments I’d listen and cringe as someone would say to my mom, with a sense of irritation, “I just told you that!”

My mom would seem embarrassed, and respond with an almost childlike, “OH – you did?”

I didn’t know what to do in those situations. I wanted to pull the annoyed person off to one side and explain that she had been listening; but was having a harder time retaining information – but doing that felt like some sort of betrayal toward my mom, so a lot of times I just stayed silent.

I worried both ways – that if I told people, they might somehow dismiss her, and assume she couldn’t participate in conversations; but that if I didn’t make them aware, there would be misunderstandings.

Since her cancer diagnosis, my mom’s memory loss has intensified. Chemo brain, dementia, possible liver and brain involvement, and the probability that she had a stroke may all be contributing factors to this.

In December we started having a running conversation about our location. Mostly, she has thought she is in Indiana. At times this was pretty funny. If you haven’t already seen some of the videos from that time, you can do so by clicking here and here.

At this point, she doesn’t recognize her house and asks how long we’ve been here. It comes as an almost daily shock for her to discover that she’s been in this house for over forty-seven years. When neighbors come by, she thinks it’s interesting that “all the old neighborhood ended up where we are, too”. She thinks she is a residence home, and for a while thought that one of our neighbors ran it; but then got upset, thinking he’d died. It took quite a while to assure her that he’s alive.

She gets her facts mixed up, and that’s one reason it has been hard to just hand the phone over to her and give her total freedom in conversation. Friends and family end up rather confused with some things she says, and then I have the stress of feeling like I’m being seen as “controlling”, if I have to continually interrupt the conversation to clarify.

This has been a good lesson for me. I remember my mom’s aunt sharing about the stress of coming in and seeing her husband on the phone, when he had Alzheimer’s. I couldn’t understand why she felt flustered about him talking to people, and why she’d want him to wrap up the conversation. I thought it would be a good diversion for any homebound person to be able to talk to outsiders. Now I understand on a deeper level what her concerns were. Misinformation can spread pretty rapidly across the phone lines. I feel a sense of responsibility to help keep her facts straight – at least when they are being spread to other people.

Smart phones only increase the issue. I’ve seen my mom reply to texts she gets from people she doesn’t know, innocently giving out information. I’ve worried about the thousands of emails in her inbox, feeling protective, lest someone takes advantage of her through spam.

We have gotten to a point now, when she rarely remembers how to operate her phone (not that I expect her to understand all the features – especially not the flashlight). I stand by with it on speaker, trying to help her, and feeling awkward, because her attention so easily shifts from the call to something else she sees. She quickly gets distracted.

Also, even when she is engaged in the conversation, it usually takes her a long time to form a sentence. I can see her thinking, trying to come up with the words; but the person on the other end, who can’t see that, probably feels pressure to fill the silence.

She still wants to hold the phone, so I try to let her; but this is a struggle. For one thing, she’s very weak, so it’s hard to do anything for long; but she’s also become enamored by the red “End Call” button on the screen and continually tries to press it. So, I’m standing there, trying to keep her focused on the conversation, and gently warding her hand away, while her pointer finger keeps gravitating toward hanging up.

It’s hard for me to know how to facilitate those calls without feeling like a constant interruption or distraction. I also don’t like to stand there and correct her when her facts aren’t right; but don’t know what to do when she says things like, “Well, I’d like to get out of this bed; but they won’t let me.”

I start feeling defensive when the person on the other end says quite fiercely, “WHO won’t let you get out of bed!?!” and she answers, “My family.”

Suddenly, we become the enemy. It’s awkward to know whether or not to interrupt the call to clarify, “It takes at least one person, sometimes two, to get her out of bed, and when she’s tried it herself, we’ve found her on the floor.”

Believe me, we want my mom to be able to get out of bed, if she can. It’s a joy to get to see her outside in her wheelchair on the days that can be accomplished; but most days she just doesn’t have the strength to sit up.

Her strength is diminishing. Occasionally, she might take a bite or two of food; but usually regrets doing so, as she ends up nauseated afterwards. Her dizziness has increased, which has made turning her every two hours (to prevent skin breakdowns) more challenging. The other night, just lying still, she cried out, feeling like she had been turned upside down.

And speaking of memory loss – maybe I have shared most of this; but can’t remember. Sleep deprivation will do that. 🙂

Her confusion seems dramatically increased, and she’s full of questions – usually posed in a nearly inaudible whisper, wanting to know things like what my full name is, how many children her mother had, did her dad die, etc…

The other day, she very politely asked me, “Have you spoken to your mother lately?”

When I replied, “Do you know who my mother is?” she burst out laughing; but had tears in her eyes at the same time.

Her response was, “What is wrong with me! Why can’t I think!? Why am I so stupid!?”

I tried to assure her, by laughing with her and saying, “You’re not stupid – you’re entertaining!” And she is definitely that.

It’s hard to know how much of this to share without being taken wrong. I’m thankful she can laugh about it; but I’m also awkward, because a lot of people think it’s disrespectful to find the humor in the situation. At this point, that’s one of our best survival skills.

My mom definitely laughs about her memory loss a lot, and I want to share these moments; because I think one of her best qualities is her ability to laugh at herself and let others laugh along, too. As someone who tends to take myself far too seriously, it’s one of the attributes I most admire in her.

In the video I posted before, about her cleaning her hospital bars, I was a little taken aback by the couple of comments I got saying I was “incredibly disrespectful” for laughing. I want to clarify here that my laughter was in no way a sign of disrespect. It just brought me a lot of joy that even with her being bed-bound, she’d found a task to accomplish and take pride in.

Over the years, I’ve had some considerable health struggles, and there were times when I would be stuck in bed for more than a month at a time. I remember distinctly that during those seasons of incredible weakness, my big accomplishment for the day would be to “make my bed” in the morning (while I was still in it). I’d straighten my sheets and covers, slip out from under them, then crawl back in bed on top of my blankets, with my head at the other end, for a change of scenery during the day. Doing that little task, that felt so huge in my weakened state, helped me feel like I had done something that day.

Work is a gift, and we all need something to do – no matter how small it may seem. That’s why I loved that my mom was wiping down the bars in her hospital bed, and that’s why I laughed.

I suppose there are some ethical questions to sort through when it comes to matters like this. I wonder what Emily Post would have deemed appropriate to “post” about this subject, had social media been in existence, when she was teaching etiquette.

“And as ye would that men should do to you, do ye also to them likewise.”

– Luke 6:31 KJV

To me, the rule of thumb seems to be what is taught in God’s Word, the Bible, “Do unto others as you would have them do unto you.” And also, I am asking myself the question, “Does sharing this honor my mom?”

“Honour thy father and thy mother: that it might go well with thee, and that thy days may be long upon the land which the LORD thy God giveth thee.”

-Exodus 20:12 KJV

I know there are a lot of people who want to see my mom before she dies. In asking myself how this can happen without wearing her out, sharing updates online seems like the easiest option. As socially inclined as she has always been, it says a lot about her state of health, that she keeps repeating that she just really isn’t up for having visitors. I don’t want in any way to belittle my mom by sharing openly about her condition. I’m hoping instead that the people who know and love her can still feel like they are a part of this season with her, and perhaps those in similar circumstances can find encouragement, too. But how do you do that, honestly, when there is the natural desire to only show her best side?

Daily, she is wasting away; but I don’t necessarily want to put that part on display. She still looks beautiful; but there are plenty of pictures I would never post. Does that give people a skewed idea of how she is doing? I think it kind of does. Besides that, I have been told multiple times that pancreatic cancer has a tendency to take people very fast. I feel the need to prepare those who love her for that; but I feel a sense of duty to only show her at her best.

My mom’s discomfort has been increasing lately.

Yesterday she was cold; but couldn’t stand having the weight of covers on her. I was lying on the couch, with her hospital bed pushed alongside me, and had to laugh at the mountain of blankets accumulating on top of my legs, as she pushed them off in frustration.

I teased her by saying, “These blankety-blank-blankets!”

She stopped and laughed out loud, then asked very innocently, “Do you and your mother laugh a lot together?”

I answered, “Yes, we do.” Then asked, “Do you know who my mom is?”

She thought for a moment, then that made her laugh, and roll her eyes at herself, and wonder out loud again, “What is wrong with me!?”

She told me that it had been a hard day, and then confessed rather sheepishly, “I even said a bad word today.”

I’ve asked if she’s ready to be done with all of this.

Her response has been, “Yeah, I’m ready – ready and waiting!”

Yesterday, during “nap time”, there were a lot of noises, and in humored exasperation, she started singing very clearly (after barely being able to whisper before), “We’ve gotta get out of this place! If it’s the last thing we ever do!”

If she asks me again, I can honestly say, “Yes, my mother and I laugh a lot together.”

I know we did in that moment.

To read more on my mom and her Beth-isms, you can click here.

*To read more on my mom’s cancer journey from the beginning, or share it, please click below:

It’s Cancer

Jody

I'm not sure what to say here: I once got second place in a dog-look-alike-contest? I know how to fold a fitted sheet? I'm pretty much a poster child for social backwardness - at least as far as social media is concerned; but I have some stories I think I'm supposed to share and am attempting to do that here, in this space.

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