Moments Matter - The Value of Visits

If you know someone with dementia, or any debilitating, isolating illness, your time and presence are as valuable as the life that needs for your comfort. Please go visit them.

Not gonna lie, I’ve been holding on to some big feelings for some time. I know this post will make some people uncomfortable. As a Canadian, my immediate reflex is to apologize for any discomfort I may cause. As someone who loves another person who is living with dementia, I’m going to ignore that inclination.

So, here’s the thing… I’m disappointed in, and darn right mad at, people -- people I like and love very much -- on behalf of Mom. I'm feeling pretty spice so am going to extend my frustration to reach to the thousands of people who are abandoned when they become vulnerable and are no longer physically strong and mentally sound.

Until recently, Mom was the first to reach out to support friends, family, neighbours, colleagues and even strangers. She gave her passion and energy to those who needed it without question or hesitation. These days, very few people come to visit her. I find this lack of connection, disrespectful and deeply hurtful. I wish even just a fraction of the people who benefitted from her compassion would offer a little bit of the same to her now.

Since we are all in this together, I'll share that I’m also furious with myself.

After a particularly difficult visit, I walked out of Mom’s building not wanting to come back …. ever! Freeze frame. Whaaaat??? How selfish!!! How cold!! How disappointing! I was tired, frustrated, confused and feeling like my visits offered no benefit -- to Mom or me.

If I could have, I would have throat punched myself right then and there. However, there are enough strange sites in the hallways of long-term care without my antics, so I resisted and marched myself to my trusty Vanborghini for yet another breakdown.

While I was driving, I had a “come to Annie” moment. I realized that up until recently, I’d been coming to visit Mom for myself as much as I’d been coming for her.

I genuinely like and deeply love Mom. This version of her, that is so very different from the woman I grew up with, is still familiar and comforting to be near... most days. She’s fun. She’s encouraging. And, she’s made me feel good about myself and the world around me ever since I can remember.

Up until that day when I questioned - yet again - how much longer this could go on, I had always looked forward to visiting Mom. Even on the worst days, I would walk into our visits with the optimism she had instilled in me. I never stopped hoping that this would be the day the woman I’d loved and depended on all my life would be back.

I had to adjust my expectations and redefine our relationship…. again.

As Mom changes, so do I, and so does our relationship. It's exhausting to constantly redefine my role without discussion or concensus. It's heartbreaking to lose a little bit more of her each day.

My favourite question is "why?" It's as annoying to others as it is informative for me. You really get to the good stuff when you understand why people do what they do.

Mom and I are reaching yet another stage. If I am going to be able to walk through the doors of her care home and be able to offer what she needs and enjoy our time together, I need to adjust my thinking and expectations. I need to reshape my own why, when it came to our visits.

It’s the moments that matter.

After several rounds in the ring with my conscience, I reminded myself that for Mom, and most people with dementia, the present moment is all they have. Time as we know it no longer exists. When they ask the same questions for the 10th time in 10 minutes, to them, each time is the first time. The point of visiting Mom is for her to experience joy, comfort, and knowing she is loved in the moment. Although she asks me every time I see her why I didn't come and visit sooner, and I have to stop myself from reminding her that I visit her every other day, I know the moments we are together are precious.

It is my responsibility, as her caregiver, to make the most of time we share. I now frame every visit with zero expectations and an arsenal of tools to keep us both engaged, entertained and away from topics that cause her pain and confusion. I bring a tablet and a bag of goodies for us to explore. I adjust how long I visit and what we do based on her mood, energy, and interests that day. And, I've found a sense of comfort in the rhythm of repetition.

This current strategy allows us to happily fill the time while protecting my sanity. We look at photos of her beautiful new, great grandson. We watch videos of how to paint landscapes and build garden furniture - topics I'm interested in. We colour. We take selfies. We laugh at experiences that are real and imagined. We talk about trips we’ve never taken. We record messages. And, sometimes we sit in silence and simply enjoy each other's company.

I have a request.

If you know someone who's world is shrinking because they have become disabled mentally or physically, please don't abandon them. If you are uncomfortable sitting with them or want to remember them the way they were, get over it. Spending time with someone is the most precious gift you can offer.

Lessons Learned

• It's not about us. It's about them.

• Visiting someone with dementia is hard and gets harder. That doesn’t mean you should stop. Short visits are great. Having photos. books, games to spark memories, inspire conversation, and require movement can be helpful -- for both of you!

• People will fall away and visit less often as time goes by. Try not to judge. It will cause you to become resentful and that's one more emotional burden you simply don't need.

• There will be unexpected moments of joy. You can’t predict or prescribe them but, if you are present, they will happen. I promise.

Go visit those who can’t visit you.

Your time is the most valuable gift you can offer.