The Before and the After in Dementialand

I went to the visitation for a friend with dementia recently. Despite the bummer circumstances, I was eager to meet his family for the first time and tell them how much I enjoyed my friend over our visits for the past several years.

I’m writing here that he was my “friend with dementia” because I want my story to make sense within the context of this blog post, but I really just thought of him as my friend. I looked forward to seeing him, and my interactions with him always put me in a better mood.

I remember that I once wore a dress when I visited with him. He looked me up and down and said, “You have nice legs.”

I told him that I run half-marathons. His response was that half-marathons were okay, but I shouldn’t run full marathons.

I asked him why I shouldn’t run full marathons. He looked at me as if this were the dumbest question ever asked.

After an exaggerated roll of the eyes, he said, “Too loooooong.”

So I’ll stick with half marathons at the suggestion of my friend.

Sometimes we talked about his challenges with movement and balance. Other times, he talked about how frustrated he was with not being able to be as independent as he had been in the past.

More than anything, we talked about other stuff… And he enjoyed talking about me more than he enjoyed talking about himself. My job. My husband. My job again. My shoes (especially if they were high heels). Always my hair. And, unlike my other friends, he always had honest feedback on my hair. Like the time he told me it looked like a hairball a cat coughed up. In all fairness, it really did. I got it cut a few days later.

He struggled with speech. Sometimes he didn’t make a lot of sense. Often he said things that were inappropriate. And still, my time with him was always the highlight of my day.

He was my friend.

After waiting about 20 minutes, I approached one of his family members at the visitation to explain who I was and what a difference he had made in my life.

He looked at me sadly and said, “I wish you had known him 12 years ago.”

I get that a lot.

You see, families are always telling me that I should have known their family members before.  They tell me about all their loved one’s accomplishments and accolades (e.g., PTO president, city council, master’s degree, school counselor for 30 years). Then they look sadly at their loved one who is no longer able to brush their own teeth and say, “You would have really enjoyed her before.”

I want families to know that I don’t wish I had known your loved one before. I like the after just fine. When I am sitting with a person living with dementia, they are enough. No one has to prove to me that they are enough by giving me their resume. Here, in the moment, they are enough.

Last week, I took my adopted doggie, Carlos, to visit a memory care community in Wisconsin. It was a bit of an audition for him, and I’d say he passed. Many individuals were able to give Carlos a treat (so many that he had horrible gas that night) and pet him. Others weren’t in a place to be able to do that.

One woman living with dementia lit up when she saw Carlos. Carlos, always eager for pets if you make eye contact with him, hustled his furry self up to her wheelchair.

The woman’s daughter happened to be visiting, and she urged her mom (repeatedly), “Pet him, mom. You can pet the dog. Just pet him. He wants you to pet him.

She was disappointed when her mom wasn’t able to reach out and pet Carlos.

I know it’s hard when a person who was previously able to do something is no longer able to do it. The daughter explained that her mother loved dogs and had owned many throughout her lifetime. In this moment, she saw loss. She saw a woman who previously provided care for dogs and was now unable to even pet one.

I didn’t see that loss. I saw a women who lit up when my little mutt approached her. It was enough for me. It made my heart full to see Carlos make her smile. It wasn’t enough for her daughter.

I’m not picking on families here….I have an advantage over families in appreciating the moment. When I look at someone with dementia, I don’t see the person that they used to be. I don’t see someone who used to be an eloquent professor but can no longer form a full sentence. I don’t see someone who was an accomplished hairstylist but can’t pick up a brush now. I don’t see someone who used to take care of everyone but now needs care.

I don’t see the loss. I see the person. When you don’t know the before, you don’t compare the before and the after. You just enjoy the after for what it is.

8 thoughts on “The Before and the After in Dementialand

  1. Outstanding, Elaine. I’ve recently had to move my husband to memory care unit and I struggle with the before and after. At least he still has his sense of humor in the now, the after.

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  2. Thank you for this great perspective, Elaine. I don’t think I would have fully understood your viewpoint a couple of months ago, but last month we had to move my mom into a memory care home (our night time caregiver fell asleep and Mom took a bad fall down the stairs). I found myself immediately adoring the other 9 residents so much, with all of their quirks and strange behaviors. When I’ve mentioned to their families how much I love them, they always give me such a strange look, and I’ve definitely gotten the “you should have known her when” comments. Of course I’ve done the same thing to the staff there, who don’t seem to care much about Mom’s PhD–they just love on her whenever she’ll let them. 🙂

    This does also help explain why all of my mom’s past friends (and even most of my family) aren’t involved in my mom’s life now. All they can see is the loss and they can’t appreciate the person my mom has become. As always, thank you so much for reminding everyone and recognizing that people living with dementia still have so much value. 🙂

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  3. Wow, you’ve really got a “glass half full” thing going here – which I find enormously helpful to practice and to be reminded off, often! Thanks for showing how to do this in a memory-loss context.

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  4. Dear Elaine, Thank you so much for this post. It really touched my heart….I needed to read this. My Mom had Alzheimer’s disease………diagnosed in her late 70’s and I was her main caregiver. A true blessing. She was so precious…both as a “regular” mom, and an Alzheimer”s Mom. She was like a sweet little 2 or 3 y.o., most of the time. Now my brother has been diagnosed……..he was diagnosed early stage at 62. He is now 67. He is a huge part of my life….we have always been extremely close. I am blessed that he has retired to the town where I live……where we lived as teenagers. We see each other almost every day, hike with our dogs, etc. He is getting much worse. My heart is so broken. It is amazing how our hearts just keep breaking with this disease. But, there are blessings and there are many things to learn! I love your blog and am so glad I found it. (I also facilitate a support group for “patients” in early stages of diagnosed dementia.) The learning continues. Thank you for all you do! Terry Gremel, RN, MSN

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  5. So very true — and it makes for a happier exchange between the patient and the visitor if the visitor just accepts things as they are instead of how they would want them to be. Your comment about the patient making inappropriate comments brought back a memory of my uncle when I went to visit him in a convalescent home. His first words were, “How much do you weigh?” Needless to say, my aunt was embarassed as were others in the room (I’m about 50 lbs. overweight and have been chubby all my life). I responded that I had probably put on a bit of weight since I’d last seen him. When my aunt chastised him for being rude, he couldn’t remember what he’d said 2 min. previously. I didn’t take offense as I know he didn’t mean for it to come out the way it did. It is what it is…

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  6. Thank you for saying this. I have many friends with dementia as well. I find I am more relaxed and feel authentically more myself with these friends. They are who they are right now and I am too. No need for resumes or social power.

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  7. My mom was diagnosed with dementia in 2014. After three unsuccessful stays in larger assisted living settings, Mom now happily resides in a family care home with six other ladies, some more and some less affected by dementia than she is. It is in this setting that I have finally been able to accept and love her for who she is now, and not for who she was. We can still have meaningful conversations about what she remembers and understands. She can still read (out loud) with some comprehension, which leads to ideas we can discuss briefly. Mom still has a good sense of humour, and we laugh often about just little things that we see or talk about. She tells me more now than she ever did that she loves me, and I tell her that I love her, too. The ladies at her home are all special in their own way, and I enjoy visiting with them, as well. Mom enjoys introducing me to them, every time I visit😊 My brother and sister visit Mom now and then, and aren’t yet comfortable with who she is now. Hopefully, over the time she has left, that will happen.

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