Why Does Dementia Scare Us?
The words “Alzheimer’s” and “Dementia” seem to strike more fear into people than hearing about shark attacks, earthquakes and terrorist attacks combined. By understanding better what dementia is and that a dementia diagnosis is not a death sentence, perhaps people will be less scared. Here is your chance to learn and understand.
Living With Dementia
There are many people living today with dementia and they are living very fulfilling lives. It is not easy to live with dementia and it requires much support to be able to live independently.
If we were not so scared to hear about a dementia, we would be able to learn how we can assist someone who is living with dementia. Imagine how much easier life would be for someone who is confused, if the store clerk, the bus driver or the clerk in an office would be sympathetic to their situation, have patience and simply take the time to ask how they can help
Wouldn't it be wonderful If we, as a society. would have a better understanding of the needs of a person living with dementia and be ready to help. This would allow people who have memory loss to feel more confident going out alone, knowing there would always be someone they could turn to for help.
Dementia Friends is a superb organization that is teaching people what it is like to live with dementia so that after understanding, they can help in their own community. You can learn to be a Dementia Friend on-line, beginning with a short 5-minute video. Dementia Friends are doing a wonderful job training people in all walks of life to be aware and help people living with dementia. I really like the work they are doing at the UK Branch, but Dementia Friends is a World Wide organization.
“I’ve Got dementia, Dementia Hasn’t Got me”
Until now most of the information and books written about people who have been diagnosed with dementia came from those working with them. Today there are many people living with dementia who are sharing their stories and explaining what we can do to help or in some cases what not to do. It is so important to hear their stories. It can help us understand behaviors in people who are no longer able to communicate well.
This week the BBC published this article: “What Those Living with Dementia Want People to Know.” It has some very good tips for those living with dementia as well as advice on how you can help.
Agnes, My Hero
Listen to Agnes Houston and you will be inspired. Not only has she been living with dementia for 8 years, but she has also written a book to help understand the sensory changes that accompany a dementia diagnosis. But that’s not all – Agnes travels around the world teaching and lecturing! In this podcast you can hear how Agnes finds ways to overcome some of her sensory disabilities by finding what she calls “active solutions.” There is a link to download her book for free in the podcast notes.
I have recommended The Dementia Podcast in previous blogs. For those of you not familiar with it, they share great information with professionals who are the top in their fields and always put the person living with dementia first.
Are We Only Neurons?
It’s important to know that many people are living with dementia, but there are also many who have rapid memory loss and confusion. For family members this can be very difficult. They feel they have lost the family member they once knew. I find this quote on every caregiver support group page as well as on caregiver info pages:
One of the hardest things you will ever have to do,
is grieve the loss of a person who is still alive
Do we believe that once a person has cognitive decline, it’s as if they are no longer alive? Would we say the same about someone who has physical decline?
Michael Verde is the founder of the wonderful organization Memory Bridge. “What people with dementia most need from us—is us. Memory Bridge exists to end the emotional isolation of people with dementia. We bridge people with and without dementia to each other in life-changing ways.”
Michael has a monthly Zoom Meeting with Naomi Feil the founder of Validation. They often discuss how our relationship with a person is much deeper than words and that we need to communicate on a different level
In their Zoom meeting last week they discussed this awful quote and Michael asked – (from my memory – not exact quotes) Are we only neurons? Is the relationship we have with our loved one only cognitive or is the relationship deeper? Is our relationship emotional? If it is more than just cognitive, then that person is still there and alive for you.
In other words, we can still connect with a person who has cognitive decline, and this is what we do in Validation, we connect heart to heart. The person with cognitive decline is very much still here and they need your love. It also seems that they are even more in touch emotionally as they decline cognitively.
I have many recommendations this week, but these conversations between Michael Verde and Naomi Feil are priceless!
The next Zoom Q&A with Naomi Feil and Michael Verde is Nov. 17th.
Donation is optional (suggested donation is $5.00) You can register here.
Advice from the Desert
We were hiking in the Negev Desert this past weekend and we suddenly came upon a Bedouin tent. We were invited to sit down by the fire and drink some tea – part of the traditional hospitality of the Bedouins.
Our host was incredibly well versed and shared with us some desert philosophy:
In the Desert There’s No Need to Speak.
We Only Speak When There is a Misunderstanding.
How is it that in our society we put so much importance on words that when someone with dementia can no longer form their thoughts into words, many consider them no longer alive.
What if speaking was not important? Would we relate differently to people with memory loss? Would we be less afraid of losing our own words if we were used to sitting in silence with each other? Perhaps we can learn the wisdom of the desert and learn to understand each other also in silence.
--- Oran Aviv has been a reflexologist for 25 years and is also a Certified Validation teacher. She combines both the principles of hand reflexology and Validation to teach ©Hands-on Dementia to caregivers and senior facility staff around the world.
You can follow Oran on:
Facebook: Reflexology – Oran Aviv and see notifications of her future blogs
Youtube – Oran Aviv Reflex and More and learn how you can use hand reflexology for self care
Oran is also the author of Hands-on Dementia for Caregivers, a Step by Step Guide to Learn 3 Reflex Points to Help your Loved One and Yourself
To learn more: Hands-on Dementia eBook for caregivers