Back when my mother's dementia had robbed her of her ability to make new memories, it was understandably a confusing time for her. Out of necessity I devised all kinds of deceptions to make both our lives easier. One of the most important was a big sign I put on the inside front door which said "David will be back in 15 minutes so we can go out to eat... please wait here." I tried to take my mom with me everywhere I went because it was just easier. If I needed to run to the store or drop off something for a friend, she went too. But for the three years where she had no memory (but was perfectly able to stay home by herself), I couldn't take her to work or out to dinner with my friends. Rather than leaving her confused as to where I was, I put the sign up before I went anywhere. Then checked in on her every ten minute or so with the security cameras.
And it worked great.
Usually television kept her occupied. If she heard the television was on, she'd sit down to watch it for hours. But every once in a while she'd walk around looking for somebody, then try to leave the house when she realized she was alone.
Which would be disastrous.
And so I came up with the sign.
Rather than go outside, she'd see the sign and go get ready to go out to eat. She'd make sure her purse was by the door... comb her hair... change her clothes... whatever she felt she needed to do to be ready and look presentable. Sometimes she would do all that, forget she did all that, go back to the door, then start all over again in a loop. Then eventually she'd hear the television and get absorbed in it again... until the next time.
Yes, I was lying to her, but if the lie meant she wasn't constantly leaving the house in confusion... or experiencing massive anxiety because she didn't know where she was or where anybody was at... and meant I could leave the house to go to work... was it really such a horrible thing?
Before the sign, she was upset constantly and I worried constantly anytime I had to leave. Then one day I put the sign up so she could get ready for dinner while I ran to get gas, realized what a total game changer it would be if I just put it up every time I left, and never stopped using it.
When I was in support forums for dementia caregivers, some people thought it was genius and decided to try it. Some people were already doing something similar. And some people thought I was the most vile, evil person on earth for lying to my poor mother like that.
In every case of the latter I would reply with "And how many people do you have helping you with your mother's care? How many people can you call to help watch her when you have to go out? How many immediate family members will step up to give you a break when you need one? If the answer is greater than zero, then kindly keep your opinions to yourself because I have NOBODY." And I did not give a single fuck what they had to say afterwards. My mother, who was suffering through a horrific problem, was happier and less stressed. I, who was there suffering along with her, was less worried and less stressed. So why would I give a fuck about what you think? Especially if you've got a team of friends and family helping you out?
This is not to say that I can't say these things to myself, of course.
Nobody... and I mean nobody... beat me up over the things I had to do to survive my mother's dementia more than myself. Not even close.
I lost untold hours of sleep wrestling with decisions. Questioning the decisions I had to make. Second-guessing the decisions I had already made (and, all too often, crying myself to sleep because I wasn't sure I made the right decision). Because that's what it all comes down to doesn't it? Decisions?
Some decisions made themselves. If there were three options and you could only afford one of them, that's not a decision that's a reality. But other decisions, sometimes over the stupidest things, can destroy you.
Which care facility do I choose?... now that was a decision. You can see how that would tear me up inside, both before and after making it. To this day I question whether I made the right choice.
Do I sign the papers to enter mom into hospice?... was a decision that seemed so easy ("God, yes... she would have never, ever wanted to live this way!") but it was also an agonizing one to make. How do I sign what is essentially her death warrant?
Which of these pajamas do I pick?... sounds idiotic, I know, but just think about it for a minute. When you have no memory, all you have is the "right now." Spending the only thing you have with pajamas that itch... or pajamas with a design you hate... or pajamas where the color disturbs you... it's tantamount to torture, isn't it? So what do I buy? How will I know if they are uncomfortable or upsetting? Sometimes she wouldn't respond. Sometimes she'd tell her caregivers at the facility if something was wrong and they would pass it along, but most of the times all I could do was wonder if I made the right decision.
Is telling a lie wrong if it helps make life better?... if I'm honest, I still have no idea. And I questioned it every time I put that sign up.
But what was the alternative? I never tried a sign which said "David probably WON'T be back in 15 minutes, but believe it anyway because I have no idea what I'm doing or how to make things better... but I will be back eventually because I love you."
Eh... probably wouldn't have been the best decision I could have made.
Or would it?
I can't decide.
At least now I have that luxury.
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Sounds like sound good practices. Reassure, change the topic, engage in behaviours the person enjoys, distract and redirect. It is much better than drugs, or arguing, or reasoning with a person with dementia. Professional caregivers, call it behaviour management, families call it love. You did good.
Thank you for this series of posts! They have been invaluable to me: both my mother AND father are going through dementia right now, mom’s is organic and dad’s is due to multiple strokes. Coping with this has been … difficult.
The sign on the door is pure genius. Thank you for that. Also, putting clear contact paper on all picture frames and glass surfaces. Most excellent.
Kudos to you for doing this alone. You have given me hope, and a hefty dose of reality, and have armed me with great ideas.
Niggling. When some thought or worry constantly eats at your brain. Hindsight is 20/20. No manual for the right decisions is ever provided. We do the best we can. That’s all anyone can ever ask. It’s time to forgive yourself. You did good. It may not always seem that way. And it may not be easy to just let things go. But it’s needed for peace of mind. That’s priceless. Just accept that you did good. Your mom would be proud. Even if everything wasn’t perfect and the best decision wasn’t always chosen. You did good. She is beyond pain. And she still exists inside of you.
Whenever things start niggling think…. no, I did good. My mom would be proud. And she would have. You did the best you could. And she would forgive you anything. It’s the nature of a mother.