DISCLAIMER: the following is my personal commentary and opinion only. I am not a trained or certified medical professional. If you need help, are concerned about your memory, or want to learn more, please consult with your personal physician, local aging support network, or the Alzheimer’s Association (http://www.alz.org).
Pssst… come here. I want to let you in on a little secret…Dementia’s not catchy. That’s right, it’s not catchy. Wow, what a relief, huh? You’ve been avoiding that dear friend for a while because, well…you never know. Why take the chance? What’s that? Oh…that’s not the reason you haven’t visited? Hmmm…Well then…why the hell not?
O.k… I’m sure I just pissed someone off by that sarcastic start, but the truth hurts doesn’t it? I don’t quite understand how or why people abandon people with dementia. But, I’ve seen it time and time again in working with people with dementia and their families. There’s such sadness when someone says, “They don’t come around anymore.” I’m hoping through the next couple of posts I can help my readers begin to understand and cope with dementia whether they’re a family member, friend, neighbor, or someone who just wants to learn.
I reiterate that this point that I am NOT a trained or certified medical professional. I am someone who not only worked with people in many stages and with all types of dementia, and their families, but had family members with dementia. What I share is based on what I know from personal experience, in layman’s terms, and I hope it gives a bit of different insight. I will be sharing actual stories, with names changed.
People First
First, let’s get this straight. People with dementia are people with a disease; they are not a disease; they are not dementia people. It’s no different than someone with a disability or someone with cancer…they are people first.
Second, dementia sucks, no two ways about it. It just sucks. It robs a person’s ability to remember and make decisions for themselves. Eventually, it robs them of their ability to function or do even the most basic activities of daily living like comb their hair, get dressed and sometimes even to smile. It changes a friend or family member, yes, at least from the way we’re used to seeing them. But it’s still them.
It doesn’t change their love of an ice cold glass of milk and a warm cookie straight from the oven. It doesn’t change their love of classical music. It doesn’t change their desire to be happy, or their delight at a beautifully wrapped gift. It doesn’t change their love of flowers or gardens. It doesn’t change their enjoyment of a walk outside. It doesn’t change their hate of liver and onions. It doesn’t change their love of red lipstick, or big bodacious jewelry.
Third, they need you now more than ever. They need you to help them remember, and remember for them.
Loaded with Emotion
I’ve worked with many families and friends – my own included – to help understand the disease, and the changes they were seeing in their loved one. First there’s tremendous frustration – the repeat, repeat, repeat of the same thing over and over; the paranoid behavior and stashing of things that someone apparently stole; money gone missing and they’re sure you took it; and the distrust even of family members and sometimes downright nasty-ass anger. Then comes the palpable sadness, when the disease really noticeably progresses, and you see someone you love slowly losing their memories and abilities. It’s only a matter of time before someone asks, “When will she forget who I am? When will she forget I’m her husband, her daughter, her son?” God, that rips my heart right out…
When you’re dealing with frustrations or emotions, it’s easy to say “it’s the disease” but it’s really hard to work through. The challenge is to see the person beyond the disease, and that’s gut-wrenchingly hard…and exhausting. Your job becomes to remember for them all the things that make them happy, to support them in being able to do as much for themselves, on their terms, as possible. And it’s hard…damn hard…and it takes an awful lot of patience…oh so much patience. It’s hard to anticipate challenges and figure out a way around them, or to see a loved one struggle with something that used to be second nature for them. It’s hard when their anger and frustration is pointed right at you…and man, it can get ugly…to understand it’s just because you’re a face they still recognize.
Finding Small Victories
Dementia is about finding small victories against the disease whenever you can. I can think of a conversation I had with a family to help them understand that when we put a fork or spoon in mom’s hand, she no longer knew what to do. But, when we put bit-sized pieces on her plate mom could feed herself with her hands. This wasn’t a childish indignity… she was eating independently…she remembered how to feed herself….HUGE victory! And, some days the small victory is helping dad see for himself it’s a good day to put some slacks on and we celebrate when he comes to breakfast not airing his privates.
This is some of the reality of dementia, and I think it’s what people fear. They won’t know how to “deal with” someone or how to have a conversation with them. Unfortunately, the lovely media has done a bang-up job of portraying people with dementia in a really poor light, and it frightens many away. Don’t be afraid…
Being In the Moment
My number one tip is to learn what I call the “bob and weave.” It’s officially called “being in the moment.” Think of yourself standing on a small boat deck in rough waters. Are you going to stand stock still and let the boat toss you wherever? Heck no…you’re going to bob and weave with the ebbs and tides of the boat to keep standing upright, right? And so it is with dementia – you bob and weave with the conversation or activity based on the person with dementia. Ya just roll with it. You don’t need to correct them, just roll with them. Unless they’re going to hurt themselves or others, channel Paul McCartney and “Let it Be.” It takes practice, but will help you both so much.
Here’s an example of a bob and weave…true story.
I visited my mom one Saturday, as was our routine for many, many years. This is our exact conversation….
Mom: I have to tell you something. I was in my bed on the corner of Ridge & Liberty, waiting to pick someone up…I don’t know who, and this girl came up to me with a tray of food. I told her I wasn’t expecting that, and she told me I had a fat butt. I chewed her out for telling me I had a fat butt.
Me: Hmmm…did you ever hear that old saying, “You need to put a little meat on your bones?”
Mom: Yes…
Me: I bet that’s what she meant and it just came out wrong.
Mom: Oh boy, I’ll have to apologize to her.
Is there anywhere in this story that you would have felt the need to correct my mom? Probably…and unless you’ve worked with people with dementia, you probably would have…several times!
Now…to put this into context. My mom was 100% bed-ridden, so of course she’d be driving her bed if anything. (It’s O.K.….you can laugh. I did!). The corner of Ridge & Liberty is an intersection where I grew up. There’s a hill there…one we all hated because when we were learning to drive a stick shift, we all got stuck on that hill and had to roll backwards and start over! So…mom must have been thinking about our old neighborhood, which I know she missed terribly. Last tidbit, this “conversation” happened in the early afternoon, probably right after her lunch was delivered, which explains the girl with the tray of food. It all makes perfectly logical sense, right?
That, my friends is a bob and weave. Ya just roll with it… no corrections, no pointing out how odd what they said might be, no forcing the issue…ya roll with it…bob and weave. And if you don’t know how to respond, just say “yup”, or mumble a bit and change the subject.
Hold Onto the Love
I beg you…don’t be scared. Please stand by your friends and their family. Ask how you can help. Pay frequent visits. Bring memories and conversation to them. Bring old photos to talk about. They’re a super conversation tool. If they can’t remember who’s in the photo, or when it happened, no big deal. You’ll probably end up with a fabulous story! Just bob and weave…it’s a great way to help activate the frontal cortex of their brain, the creativity sector. There’s an actual program like this called TimeSlips and it’s amazing! If you’re concerned about going alone, bring a friend. The more people who are comfortable with people with dementia, the more accepting, and less stigmatizing, the world of dementia will be.
Please…stay in their lives. They need you now more than ever, as does their family. And, do you know how you “deal with” them…You go visit, and with a big old smile say, “Hi Barbara. How are you? It’s so good to see you…” and you go from there. Trust me…you won’t catch it…
If you’re struggling with a recent diagnosis in your life, or the progression of a friend or loved one’s disease, you’re not alone. Seek out the resources available through the Alzheimer’s Association. And, many local communities have other non-profit supporting groups and agencies to help. Reach out…get help.