UK reader “Jemima” wrote me this week with a fairly common problem. Once we sorted that, she wrote back with some clever solutions and talked herself through another fairly common problem. We loop you in below.
From Jemima:
My mum has recently become very anxious over her handbag. There are just a few bits inside, for example, a purse with some loose change, handkerchiefs.She constantly checks the contents over and over again and becomes distressed if she thinks something is missing (which it’s not).
It’s becoming a huge distraction and creates anxiety. I wondered if it would be best to try and remove it from her memory and take it away kindly so as not to cause her any distress.
It’s hard for us as care partners to watch a loved one experience anxiety. We’ll do most anything to make it stop. It’s important for us to know that anxiety goes hand-in-hand with dementia; it’s “normal.” That said, there are lots of things we can do to dramatically decrease it.
Visual cues can work well to help us communicate, or, as in this real-life example, seem to bite us in the butt. In this case, I believe removing the bag would actually cause more anxiety–because it’s not the bag itself that’s the problem. Rather, it’s the feeling of not having a needed item on hand inside the bag.
Peel back another layer, and you can see it’s really about a feeling of helplessness. What if x happens, and I don’t have y readily available? Boiled down further, it’s What if I need help and can’t get it?
I recommended going through a ritual before leaving the care home. Rituals and routines work well with people living with dementia because there’s predictability.
Think about it as if you were the one living with dementia: you’d be constantly struggling to make sense of everything and everyone around you, trying to keep up with conversation and figure what’s coming next. We all do that already, we’re just not necessarily conscious of it because it typically doesn’t cause us anxiety.
So for Jemima’s mom, I thought doing a bag check ritual might help. It might go something like this:
Before we leave, let’s make sure we have everything we might need. Let’s look in your bag. I see [name items one by one]. Anything else we need? [Allow time for a response. This is an opportunity to verbally express anxiety.]
Okay, it looks like we’re all set. If anything comes up, I’ll make sure it’s taken care of. Let’s go now.
It’s important to note that this ritual needs to be done with (say it with me!) respect, kindness, and love. This isn’t an opportunity to tap your heels, roll your eyes, and sigh loudly–even if that’s happening internally for you.
Second, this ritual can’t be used as an excuse to exclaim with irritation, “We went through your bag already! Don’t you remember?” later.
I say to you–with respect, kindness, and love, I assure you!–that your loved one can’t remember. Your loved one is living with dementia. You, as a care partner, are now in the process of earning your doctorate in patience.
Go through the bag as many times as it takes, offering loving reassurance every single time: “Of course I’ll help you look!” or “It’s okay, I’ll always make sure you have what you need” or a simple hand-squeeze or side-hug.
Another possibility to try is to change the focus to something other than the bag, AKA distract and redirect. This will likely work only very briefly, if at all, but it’s worth trying all the same.
That settled, Jemima came back with this:
It got me thinking, rather than a tatty old purse and some tissues to go through with her, I might think of some bits and bobs that might bring a smile to her face. Like some fluffy small pom-poms we could make together in her favourite colours and a little wallet of pictures from her life. At least, this may start a conversation and act as a distraction.
***Join me in an enthusiastic standing ovation for Jemima’s brilliance here!***
Jemima added:
The other aspect of her memory seems to be wanting to go home to her mum. I handled it a different way today by saying I am your mum now and making her laugh.
Previously I would explain that her mum is in heaven, but that look on her face–as if she has just found out–I knew I would have to find another answer.
I know it’s just her wanting to feel in a safe place with her mum caring for her.
If laughter works, use it! It’s so easy for us to get caught up in the day-to-day slog that it’s easy to forget it’s okay if we laugh with our loved ones. It’s okay to make it your goal for the day to get them to laugh. It’s okay to be silly. It’s okay to generate positive feelings!
As Jemima points out, telling a person living with dementia that someone is deceased–no matter how long it’s been–is a bad idea. For your loved one, it’s reliving the devastation of finding out that news all over again. You offering a “reminder” that it’s been years not only doesn’t it make it better, it makes it worse–for both your loved one and you.
When you say, “Gosh, Aunt Tillie’s died years ago. You planned her service. Don’t you remember?” it’s experienced as 1) brand-new information, and 2) information you (you jerk!) withheld! So you now you’re trying to cope with not only an upset loved one, but an upset loved one who is royally pissed at you.
A good way to navigate questions about deceased loved ones–typically, it’s a mother, but not always–is to key in on the feelings behind the words. In J’s mum’s case, it’s about feeling vulnerable and needing reassurance she’ll be taken care of. Jemima provided that, and made her mum laugh. Double win!
You won’t always get a laugh in this situation; mostly, you won’t. But you can still come through it like a pro. Try gentle clarifying questions or statements:
Sounds like you’re missing your mom.
Tell me about your home.
What’s the best thing about your dad?
Watch closely for how the feeling may be changing and follow your instincts. Forget about dementia and just concentrate on making a reassuring human connection. If words coming out of your mouth are causing upset, change direction!
As Jemima says, It’s all a learning curve.
Meantime, remember that I’m here for you, I’m rooting for you, and you’re always welcome to reach out!