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)
In the last few years, several friends and co-workers have had parents diagnosed with dementia – some with Mild Cognitive Impairment (MCI) and others well on their dementia journey. It’s been really rough for them…and their parent. On one hand, they finally have a reason why mom or dad has been acting a certain way, or struggling with something. On the other, they fear terribly how this journey is going to play out, and frankly the media usually doesn’t portray it as very pretty. In fact, the usual portrayal is pretty damn ugly.
As someone who’s worked with people with dementia, and had family members with the diagnosis, it’s hard to see someone battling through this well of emotions. I think because I worked so closely with my team, residents and their families, and did an awful lot of study, I’m better able to compartmentalize it, even when it affected my own loved ones. I’ve come to the point where the disease itself doesn’t dictate my feelings or actions/reactions. I’m not emotional about it, except that the disease itself, and the lack of progress on treatment or a cure, makes me damn mad…spitting nails kind of mad.
Loaded Emotions
I know the disease can be ugly, and depending on the type, some are uglier than others. It’s hard to see a loved one flailing and failing. It’s frustrating as hell when the same question gets asked over, and over, and over…within minutes. And, I know the feelings of guilt, anger, and sadness when you realize your loved one can no longer live on their own, they need someone caring for them 24/7 in a safe environment, and you can’t do it yourself.
Anger Takes a Toll
I often have long and deep discussions with my friends about the disease, and what’s happening in the brain. I try to help them find answers, resources, and options for care. But the #1 emotionally draining issue they all have is “the visit.” More often than not, our conversation starts when a loved one is in what I call “stage hell” – they know something’s wrong but don’t understand it, sometimes they can’t articulate it, they get very frustrated and a lot of times very angry, especially when they can’t do something themselves, and even angrier when you try to “help” them. Their anger is turned toward YOU, and man it can be ugly. I’ve had “f-bombs” lobbed at me many days, including by my family member. Sometimes it’s because you’re most handy, and sometimes it’s because you’re a familiar face at that moment, even if they don’t really know who you are.
Making Quality Time
So, how can you make visits a bit more pleasant for both of you, so that emotions don’t get in the way of quality time together? I’ll tell you, it’s not easy. You need to know your loved one really well…I mean really know them. What has made them happiest at any point in their life? What has always brought them joy? What has always frustrated them? What did they always hate to do? Know that just because someone has dementia doesn’t mean they’re suddenly going to love bingo (make a note of that…NO BINGO for me!).
While not easy, making your visit as normal as possible is a good start. Talk about the things going on in your life. Depending on your loved one’s stage of disease, they may engage, ask questions, make comments. Be descriptive and colorful in your conversation. Build the picture – sights, sounds, smells. While my dad didn’t have dementia, he did lose his sense of smell and taste due to medication side effects. I’ll never forget him saying, “Chicken, even though I can’t taste and smell, I REMEMBER what this tasted like.” (Chicken was his nickname for me; don’t know why!?)
Picture Stories
Bring photos of what’s going on in your life, or old family photos. Oftentimes, those with dementia may not remember who is in the photo, but they WILL be able to build a story around the photo. In fact, there’s a terrific program for those with dementia called TimesSlips that does just that. Working with a photo, you and your loved one can build a story you’ll cherish forever because Mom or Dad wrote it. Start with asking questions about the photo – What do you think is going on in this photo? Where do you think it’s taking place? Why are these people gathered? Aren’t these beautiful flowers; what do you think they smell like? This is a great way to foster a calm, pleasant visit.
If your loved one always enjoyed reading, or magazines, bring a book or magazine. You can read the story “together” or page through the magazine together. So many great conversations were had with my former residents when we sat together and paged through magazines or coffee table books.
Ask for Help
Was your mom a great cook? Talk about favorite foods, recipes, meals. Ask how she might do something – “Mom, how do knead bread? How long should I knead it? Does it take long for the dough to rise?” It makes no matter whether what she’s telling you is correct or not. The point is Mom will still feel valued for her knowledge, valued that her son/daughter STILL asks her how to do things.
Glam It Up
My mom always loved clothes, understated jewelry, hair well-styled, and for the love of God she better have great eyebrows and get rid of those damn chin whiskers. My visits with her often entailed making sure her eyebrows were groomed and drawn back on, and that her facial hair wouldn’t embarrass her. Sometimes I filed and painted her nails. We often laughed together about how to style our collective thinning hair. Many times, I brought a nice smooth hand cream and gave her a hand and arm massage. She loved it!
Food, The Universal Language
There are always certain foods that will bring absolute joy to someone. My dad was cake or an ice cream sundae. Mom always gobbled up berries, especially raspberries, and a good piece of chocolate she could suck on what seemed forever would pretty much shut down conversation until it melted in her mouth. Sometimes I’d come packing fresh-baked cookies for my former residents, and we’d relish the warm, soft treat together. Be sure you’re aware of what your loved one is or is not able to eat safely as sometimes chewing and swallowing becomes difficult.
Get Some Support
The reality is your visits will evolve based on your loved one’s abilities and stage of disease. Sometimes, justing having a quiet sit together is enough. You shouldn’t feel the need to keep up constant conversation. The gentle touch of holding hands can do so much to bring calm. There are times when words are too much. And, sometimes things can go “belly-up” if your loved one is having a particularly challenging day, or if they’re in a care setting and want to go home. As mentioned, sometimes their frustration turns to anger and it’s lobbed at you. If you’re struggling, whether you’re caring for your loved one or visiting, ask for help. The Alzheimer’s Association has terrific resources and coaching. If your loved one is in a care setting, ask the team for help. There’s no reason you must go it alone. And, realize that sometimes, the best thing you can do is keep your visit short.
I hope this handful of ideas helps you have more and better quality time on your dementia journey. For additional ideas, check out the book “Creating Moments of Joy” by Jolene Brackey. Remember…you’re not alone.
