10 Lessons from People l/w Dementia

Posted on March 8, 2017

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I love my job. It fulfills me because I can give and receive in equal measure. In general, people assume that the lives of those living with dementia are somehow less than those who don’t. There are innumerable myths about what dementia is and how it diminishes a person.

I vehemently differ from this opinion. I wanted to list down all the things I have learned, relearned and had reinforced as a direct result of working and loving people living with dementia. People l/w dementia, even in the later stages, can teach us IF we remove are tragedy narrative goggles and get rid of our ableist attitude!

1. Slow down: I do everything fast. Eat. Speak. Walk. Read. Organize. BUT…if I have to effective in my work, I have to slow down to accommodate the needs of where people are at. Not just people l/w dementia, but also their caregivers. It stands me in good stead when I am stuck in a TTC disaster or trying to juggle five tasks at once.

Blog-sunset

The sunset from our office as enjoyed by said gentleman 🙂 {Yes, my photo!}

2. Enjoy the sunset every single day: I am calmest when I am one with nature. However, I don’t find myself out and about enough. There is a gentleman who comes to our office for my group. He stands spellbound, every week, as he sees the sun go down. And he’ll remark, each week, with the same passion, “Isn’t this sunset just wonderful!” In a world where we’re urged to discard our possessions and buy new ones, this simplicity brings great joy and happiness. I can never watch the sunset without thinking of this person, no matter where I am in the world.

3. If you like the song, dance: We could all do with a little less inhibition and little more rhythm. Music is related to helping people (l/w dementia or not) to improve mood, decrease isolation and better cognitive function. I find (mostly) when people l/w dementia like a song, they’re either singing along or they’re groovin’, no matter where they are! I want that.

4. Openly share how you feel: I always know where I stand with a person l/w dementia. They don’t play games. And I cherish that. I often say I don’t know how to behave in front of people who do not have dementia because I do not understand them.

5. People respond to kindness: People l/w dementia are like mirrors. 95% of the time, in my experience, they respond to me in the same demeanor as I meet them with. It is a lesson that stands me in good stead in my relationships at work and outside as well.

6. Don’t give up: I have a game that I play. I try to reach people l/w dementia in the later stages. Sometimes, I have to pull out every trick in the book – music, dance, massage, food, validation, hugs, a yes/no question, a compliment – and I will be rewarded with eye contact, a smile, a hug back, a hello. It makes me feel like if I can achieve anything I want. I didn’t know I could enjoy being with people in the late stages!!

7. People are more than their diagnosis: I am currently reading a book by Marian Keyes, “Making it up as I go along”. I am enjoying it thoroughly. It was recommended to me by Wendy – she lives w/ Young Onset Dementia in the UK! She had posted about it on her blog saying she really enjoyed it. So I got it. I don’t regret it. In fact, I have so many laughs on the subway, I find people trying to get the name of the book! I bet most people don’t imagine people l/w dementia reading books, leave alone blogging every single day, as Wendy does!

8. Live in the present: This Buddhist principle is reinforced every time I interact with a person l/w dementia. As time passes, we are less able to talk about the past too. The future is anxiety-provoking. So we talk about the weather, what we’re wearing, how we’re feeling, what we hope to do today. If we stop fretting about our pasts and futures and just live in the moment, we will be much happier.

9. Don’t impose your ideas on others: I always have plans of how group is going to go. But when I get there, they want to just do something else. Well, it’s fine! I admit, I am not so flexible in real life. I need things to go the way they were planned – by me or someone else. When they don’t, I have a freak out. But I am trying more and more to be flexible.

10. Know when to back off: Things don’t and won’t always go the way we want them to. Caregivers / partners are often trying to plan for the future or cajole the person the person l/w dementia to do something or the other. However, it doesn’t always go as planned. Whether it is a fight or a practical situation, taking a break and coming back with a rested mind and body never hurt anyone! I am doing this more and more even at home now.

And here’s a bonus one:

Forgive and move on: Caregivers / care partners often describe arguments that they have with the person l/w dementia and after a while, the person l/w the disease has forgotten all about it and is back to being happy and charming. But the caregiver / partner is still fuming! Even in daily life, this is an important lesson. It happens to me in my marriage a lot – my husband is a sweet person who forgives completely. I, on the other hand, will sit on a grudge, or file away a grudge for decades and upset myself over and over again mulling over the unfairness of life and people! I try to imbibe this in my life on a daily basis now – I vent it in my journal and that’s it. It’s done.

If you feel like these lessons are commonsense – you are absolutely right. If you think they’re spiritual, you are absolutely right. The reason is – THE DIAGNOSIS OF DEMENTIA IS JUST ONE ASPECT OF A PERSON’S LIFE. They’re still people and if we just think out of the box, we can live enriched lives with them too! So the next time you find yourself making assumptions about the capacities of a person l/w dementia, don’t!

What did you learn from your job today?

 

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