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The book The 36 Hour Day is also a good resource for you to read.
Kudos to you for trying to understand your Mom's experience. I learned a lot from watching Teepa Snow videos on YouTube. She is an expert on dementia and caregiving. Some of her videos give great and detailed explanations about what dementia does to a person's mind and why. But she also give strategies to caregivers on how to better interact with our LOs with dementia for more peaceful and productive interactions.
video showing what Dementia looks like from the perspective of the person suffering from it.
My brother had diagnosis of probable early Lewy's Dementia.
We often sat and chatted about what he saw, how he saw the world differently, how real his hallucinations were. He said he greatly feared the loss of mind he knew he was headed into, but was glad to know there were reasons for how he saw the world so differently. He was a marvel at telling me how he saw a scene we were both looking at. He saw a Diego Rivera Flower Market with calla lilies and men with white ballooning linen pants and big sombreros. I saw a van with large white fenders. So there you are.
Welcome to the Forum. Thanks for filling your profile in a bit for us.
Does it make a difference knowing how we saw the world differently?
Not really.
I would read everything the late Oliver Sacks ever wrote.
Start with The Man who Saw his Wife as a Hat.
My brother died before Lewy's could further rob him; for which both he and I were grateful.
If I find it I'll come back and let you know
Look up 60 minutes, episode about dementia. That will bring a lot up
I would just go on YouTube and type in 60 Minutes dementia and the episodes all come up.
It's tough (emotional) to read, but helped me to see some of what they were thinking.
They will never believe that they are to blame for mislaid things or missed appointments. Eventually, they will need our help in every little thing. The beginning is in many ways, the hardest time- none of us know how to react and we keep trying to teach our LO what is going on. They are terribly frustrated with their inability to do what they have always done- they are angry with the world's clear misunderstanding of their intentions etc.
It is a most brutal disease but if we can remain loving and cheerful without any kind of talking down to our LO's we will be able to have a more peaceful and even a beautiful time with them for longer...
May you find your own balance and not be made miserable by those who know everything better than you. Your care is a miracle to this world.
It's amazing:
https://youtu.be/OUWOfDupmZk?si=9f2AQNzJOwgkPALg
Excellent book, especially if you want to understand what it's like to be living with early Alzheimer's Disease, as she was living it. Wendy is a brilliant writer and her blog is so inspiring
This shows the depth of your compassion.
This is how I became more aware (not related to interactions with my mother, but my clients/work).
* I wanted to learn about dementia so I bought books.
* I took TEEPA SNOW's webinars (for 1-1/2 to 2 years online). I highly encourage this way of learning.
* I learned - by educating myself - how different parts of the brain (cells) dies and what parts of the brain do what - how they function and/or no longer function. This helped me feel COMPASSION.
* I put myself in another's shoes (they feel fear, are confused, perhaps have hallucination ... and can then fear bathing / showers due to being scared of the water).
* I learned how other senses are heightened with others go (i.e., mental clarity).
i.e., the are keenly aware of tone of voice, smiles / non-verbal interactions, gentle touches (if approrpriate).
- they KNOW when they are respected and/or disrespected / dismissed.
... know that they know this even if they cannot / do not verbalize it.
* Make eye contact when they are talking - and when you are talking.
I worked on myself for decades (before I started doing this work). I took communication and counseling courses / certifications as I was on a road to getting an MFCC (to become a therapist) although I didn't pursue that field / didn't get into a master's program. I became a fabric designer instead.
- Still I know who I am. I can set boundaries with others as needed. This was a learning process. It didn't just happen when I started working with elders. In fact, my first major client of three years was as difficult as anyone could be. I learned a lot from that experience (101 caregiver bootcamp as I used to call it). I then started reading and educating myself.
Education, awareness, understanding = compassion for another (and our self).
And, no matter how much we are aware and educated in this area, we can still get frustrated ... and that leads to KNOWING you need to:
- take breaks
- take time outs (even if a few minutes to regroup
- hire caregivers for 2 hours to however it can work out
- take care of your own health / well being ...
--- eat heatlhy
--- exercise, get enough sleep
--- have FUN.
Know when it may be time to research facilities for 24/7 care if needed.
Get help / ask for volunteers at churches, networks, dementia association (in your area).
I believe there are books written BY people who have dementia - they know it and still able to talk / write about it. This is an invaluable perspective.
I hope this helps. I so appreciate you asking this question. It is quite remarkable to me, actually, that you would even think to ask. You are a VERY compassionate, loving adult child to your mom. P.S. Do not forget massage - you can do or hire a professional. We all need healing gentle touch. See what feels right to the person, everyone is different. A foot massage, hand massage, or head massage could be good too.
Gena / Touch Matters
There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh!
It is so very heartbreaking to us.
My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her
caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔.
When you learn to go along with their flow no matter what the (nonsense)may be,
life is so much better❤️
I posted the link earlier, but looks like it got removed.
There past memories are usually on point, so those are the ones you embrace with them. Because trying to convince them that their current reality is off only frustrates the both of you.. ugh!
It is so very heartbreaking to us.
My mother forgot that her husband of 52 years had died, in her mind he was on a trip or something and would be back soon. But, as her
caregiver I learned to not argue with her about it… just go along with her flow and say yep he’ll be back soon💔.
When you learn to go along with “their flow” no matter what the (nonsense)may be,
life is so much better❤️
We just want to make sure they are safe and live the rest of their lives comfortably and in peace❤️
by appreciating the opposite. thank your lucky stars that your mind is OK. seize your life to the maximum. thrive. be as happy as you can be. that will make your mom happy.