Regret: I Wish I’d Known More

My experiences at the Dementia Simulation house so far been fun, interesting, hard, hilarious, sad, hopeful, and everything else. Someone asked me the other day what has been the most challenging.


I realized that it’s witnessing the onset of regret in loved ones of those live or lived with dementia.

I had no idea what it is really like for her.

I wish I knew the right way to approach him when he was alive.

I would have done things differently if I knew dementia was like this.

I don’t know why I couldn’t have been more patient.

If their loved one is alive, we help them process what they’ve learned and can use to improve the life of their loved one no matter their stage of dementia. We can’t change the past, but we can change the future, right? This is about education, and the education we (along with other support services) provide often comes too late in the process.

If their loved one is no longer alive, sigh.

We go down a path of reminding them that we do the best we can with what we know in the moment. And we encourage them to be kind to themselves.

We see that regret set for quite a few of our participants, and we tell them not to beat themselves up. I think that’d be placing the responsibility in the wrong place.

We are at fault. By we, I don’t me “you and me.” When I say we, I mean myself and other professionals in my field. I guess I also mean politicians (although I am, to be clear, not any type of politician). We have to find a way to do better. We need to figure out how we can effectively educate those with dementia and their caregivers early in the process. We need to find a way to connect families and individuals with resources at every single diagnosis.

If you are a dementia caregiver who was provided support and resources when your loved one was diagnosed, go buy a lotto ticket. You are part of a fortunate few.

We are trying. Really we are. We are limited by funding, as is everyone and everything in life. But we are trying to do a better job of making life just a little bit better for those with dementia and their caregivers.

Because it bothers me when we see people realize that they could have done better if they’d have known more.

Maybe some of this regret is preventable.

2 thoughts on “Regret: I Wish I’d Known More

  1. Just like maccascruff, there are so many times I’ve thought about what I would have done differently–especially early in my mom’s disease when I knew absolutely nothing. Even when I started learning more (thanks to your blog and some other resources) I still didn’t respond the way I should have much of the time! It just takes so much practice, which of course we only get by being on the caregiving journey from start to finish. I’m just thankful I found your blog as early as I did and have been able to pass it along to so many people!


  2. I have learned so much from reading your blog. My dad died of dementia. I have learned from your blog that there were so many signs before the obvious mental decline began. I have been through the woulda, coulda, shoulda so many times. I try to forgive myself for the way I treated him at times. I did the best I could at the time with the knowledge I had. I have to keep repeating this to myself.

    So far, I can’t bring myself to visit the Dementia House for this reason. I don’t think I can deal with any more knowing things I should have done differently.

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