Three years - hard to believe! And it's odd when someone says, I'm sure it still hurts, because it really doesn't - at least not in the way some hurt. I hope that doesn't make me seem callous. Most of my life with mom was full of pain and darkness - that is until the last couple of years of her life. That's when her life changed, and so did ours.
My sister and I wondered for years if we would even care when she died. We did, of course. When I think of her now, I feel grateful for the last 2 years of her life and the joy she brought to us and those around her. I laugh as I think of the funny, sweet things she did as her dementia progressed. I feel blessed by the lessons I learned.
I've talked about her story often, but someone asked me to share a post I wrote a few years ago. I changed websites and the blog was lost, so here it is - I hope it helps some of you out there!
Your Parent Has Dementia
You’ve probably experienced it so many times: that feeling you get when your parent is telling you the same story or asking you the same question for the umpteenth time like What are you doing today? The angel on one shoulder is saying, You know she can’t help it! Meanwhile the devil is on the other shoulder screaming Oh my gosh you’ve already asked me that 10 times!
The battle ensues – good vs evil.
Some days my angel would win, and I would just answer her question again or reply to the story as if was my 1st time hearing it. I was so happy with my little self. Good for me! I did it! She’s happy. All is good.
It’s hard to pinpoint why the devil ever wins. I knew she couldn’t help it. She absolutely never did it on purpose, and yet sometimes I wound up saying You’ve asked me that 3 times in the last 5 minutes. Or yes, I know the lady across the hall (who she’s known for a year but can’t remember her name) comes over and sits in your rocker and sleeps and the 2 of you never talk and she’s sweet but sometimes you’d like to be alone…..I've heard it every day for 6 months. Then I wanted to punch the devil in the face because I knew I shouldn’t have been snippy.
But it can be hard.
I found 6 things to help my angel win (most of the time).
1. Assess why it annoys you.
The broken record can annoy anyone! But I found that some annoyances were related to behaviors she did before the dementia. Our relationship was challenging, so when she asked me over and over What are you doing tonight it threw me back to a time when that question was one of manipulation. It elicited a defensive response of the past.
Sometimes she’d call 20 times a day – again, a behavior that used to lead to guilt-ridden conversations. The calling wasn’t a new behavior, so it felt like it still had the old motives.
If this happens, remind yourself it’s not like that any more. She couldn’t help it. There were no hidden agendas anymore – just confusion for her.
3. Recall a time of compassion.
Having an emotional experience to recall and lean on is powerful. Early in the dementia, mom was hospitalized for, believe it or not, a bloody nose. She insisted she hadn’t been picking at it, but she had. She bled so much she was admitted for 24 hours. Her nose was packed with gauze, she was confused and scared, and her nurses weren’t compassionate. As I sat beside her on the bed she leaned over on my shoulder. I put my arm around her and felt her fear – like a little girl really. I realized the way they were treating her was not the way I wanted her to be treated. I didn’t like it. It made me sad.
When I’m feeling frustrated with her I recall that moment. It helps, as I want her to feel at peace as much as she can during this time of her life. I recall her confusion and how deeply I felt for her in the moment. I don’t ever want to be the cause of any more pain or confusion for her.
4. Repetitive stories might give you something to talk about.
When we’re driving to the Dr. or to lunch, she says the same 3 things over & over:
a. The sky is pretty.
b. Oh I could just ride all day.
c. Now where are we going again?
The sky is pretty opens up the opportunity to talk about the different clouds or the weather or the seasons. I could just ride all day could lead to discussions of road trips when we were young. Many people with memory issues can sometimes recall older memories. Now, where are we going again? is more challenging. When the angel is in charge I just answer – again. What difference does it make? She forgets and will forget again. I can make this pleasurable for both of us if I view it as just ways to continue the conversation.
5. Get involved in the fun times.
Mom was in an assisted living community for the last 2 years of her life. Each year they had a Prom, and wow! The first year some of my children came with me and we will always cherish this memory. The video says it all.
6. Apologize when you get snarky
Our parents with dementia can feel sarcasm and hurt and appreciate an apology. We should apologize if we’ve hurt feelings, and we will hurt them – again & again.
7. Finally – Seek support.
My sister and I are good for each other. She’ll call me & be all in a tizz –She’s called me 25 times today!! Or I’ll call her She keeps saying ‘I missss youuu!’ even though I JUST saw her yesterday! Feels like the old guilt thing.
We are great at reminding each other of the helplessness of her condition and then we make each other laugh.
Communicating well with parents with dementia doesn’t usually just happen. It takes self-awareness, compassion, choices, and ultimately acceptance that we need to adjust our expectations. Sometimes you’ll do the right thing and listen. You’ll respond with compassion. You’ll answer the same question with no irritation and listen to the same story with great interest.
Sometimes you won’t do so well. And that’s ok – you’ll learn through it. You’ll see what the triggers are. You’ll work harder next time to be a better son or daughter. You’re not perfect – neither am I. Your frustration is normal. Your wishing things were different – that’s normal too. Your confusion is normal.
Encourage each other and seek to be encouraged. Love your parent as much as you can. Keep those tender memories handy at all times. And forgive yourself when the devil wins. The angel is right there to pick you back up!
Now we need to hear from you. Start a chain of encouragement by commenting below with your questions, stories and ideas.
Much love and prayers :)
Dr. Tami West has been teaching women how to live their own lives for more than 25 years. As author of "Life Without the Monsters" and "A Woman’s Guide to Personal Achievement and Professional Success," Tami has delivered hundreds of standing-room only presentations to women in the US, Australia, New Zealand, and the UK.
This article was originally published on www.tamiwest.com.