How can people feel comfortable talking with my wife who has dementia?

Posted by marvkw @marvkw, Jul 31, 2021

How can people feel comfortable calling and talking with my wife who has dementia. She many times answers with "now who are you"? And "where are you living now"? And "are you working or not"?
I realize how confusing and disconcerting when you are calling your mother. So, we have an extended (32yrs) with 9 children. She loves each of them dearly yet gets snubbed on calls and screened on her calls with 1/2 of them plus most of her church group women. Is there a way to let outsiders know to understand?
She is 90, in good health but getting worse as we all know.
Thank you, Marv

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Hi @marvkw You ask a very important question! I know it's one I grappled with during my wife's battle with brain cancer, which left her with many dementia-like symptoms.

Two things quickly came to my mind reading your post.

One was some advice we received early on in my wife's war. It was 'you'll be surprised by those in your life who leave you at this time and more astounded by who the few are who don't.' The vast majority of our families' members and friends of ours found it too difficult to deal with my wife (and me) so as they say, they ghosted on us. I guess it was the ultimate case of 'out of sight, out of mind'. We never found an answer for getting those who left us to reenter our lives — and 99% of them are still absent, now 5 years after her passing.

The other was how often I had to explain, and explain again and again, my wife's lack of awareness, skills, etc. was not her doing, but the doings of her disease. One of the most difficult was when our adult children would visit and my wife's first words were 'when are you leaving?' It took a long time for them to understand this was not their mom speaking, but how broken her brain was by disease. It was never easier for them, but at least they came to understand.

I hope the sun is shining wherever you are today!

Strength, Courage, and Peace

REPLY

Thank you for your Insight I know you have been through this. I only wish there was some way to educate others to know what we know first hand. Its not rocket science.

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Hello- As an LBD patient – I can say that this is a problem faced by many of us. We have found tht al big part of it is the others not knowing what to say or how to handle it. Fear is a big factor. Many folks have not – first hand – been around – rather interacted with someon with dementia.
Even in my early stages – when people find out – they treat me a little different. Probably with good intentions – but again they arent equipped for this.

Some folks arent ready to face that with a loved one and shut them out – thinking not dealing itch it firsthand will make it go away. They dont want to go through the losses and deficits with them – just don’t know how.

Sometimes counseling can help. Has this been anything that has come to mind? Sometimes helping others know what to expect and what is going on, why these things are happening.

Here are some good communication tips that many people find handy – not just for themselves nd caregivers 0- but to help others as well.
https://eatspeakthink.com/communicate-better-lewy-body-dementia/#communication-challenges
https://www.lbda.org/order-lbda-materials/
Would the family be open to some educational resources?

There are a lot of them out there.
These sites have some to look at:
EXCELLENT – https://connect.mayoclinic.org/blog/dementia-hub/

http://Www.lbda.org
https://www.alz.org/alzheimers-dementia/what-is-alzheimers
https://www.alzheimers.net/
This is a tough journey for all involved – us patients, caregivers, family and friends.
I wish I could understand how to make others understand that we aren't doing anything to hurt them intentionally.

I apologize if i am rambling. My LBD mind likes to do that a lot.

Peace
Larry H

REPLY

@marvkw, I'd also encourage you to join this discussion that @larryh started:
– Communicating Challenges With Lewy Body and Dementia https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/

REPLY
@IndianaScott

Hi @marvkw You ask a very important question! I know it's one I grappled with during my wife's battle with brain cancer, which left her with many dementia-like symptoms.

Two things quickly came to my mind reading your post.

One was some advice we received early on in my wife's war. It was 'you'll be surprised by those in your life who leave you at this time and more astounded by who the few are who don't.' The vast majority of our families' members and friends of ours found it too difficult to deal with my wife (and me) so as they say, they ghosted on us. I guess it was the ultimate case of 'out of sight, out of mind'. We never found an answer for getting those who left us to reenter our lives — and 99% of them are still absent, now 5 years after her passing.

The other was how often I had to explain, and explain again and again, my wife's lack of awareness, skills, etc. was not her doing, but the doings of her disease. One of the most difficult was when our adult children would visit and my wife's first words were 'when are you leaving?' It took a long time for them to understand this was not their mom speaking, but how broken her brain was by disease. It was never easier for them, but at least they came to understand.

I hope the sun is shining wherever you are today!

Strength, Courage, and Peace

Jump to this post

Thank you, Scott, for sharing your insight. This is such a powerful post. My husband and I are living this saga every day. Yes… "ghosted on us," "out of sight, out of mind," "the doings of the disease," "broken brain," …

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@colleenyoung

@marvkw, I'd also encourage you to join this discussion that @larryh started:
– Communicating Challenges With Lewy Body and Dementia https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/

Jump to this post

Thank you so much, Colleen and Larry. I am composing a letter in my head now to correspond with our ghosters.

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@marvkw

Thank you so much, Colleen and Larry. I am composing a letter in my head now to correspond with our ghosters.

Jump to this post

Excellent!!! If it can help to make a difference in just one relationship- it is worth it.

REPLY
@larryh123

Hello- As an LBD patient – I can say that this is a problem faced by many of us. We have found tht al big part of it is the others not knowing what to say or how to handle it. Fear is a big factor. Many folks have not – first hand – been around – rather interacted with someon with dementia.
Even in my early stages – when people find out – they treat me a little different. Probably with good intentions – but again they arent equipped for this.

Some folks arent ready to face that with a loved one and shut them out – thinking not dealing itch it firsthand will make it go away. They dont want to go through the losses and deficits with them – just don’t know how.

Sometimes counseling can help. Has this been anything that has come to mind? Sometimes helping others know what to expect and what is going on, why these things are happening.

Here are some good communication tips that many people find handy – not just for themselves nd caregivers 0- but to help others as well.
https://eatspeakthink.com/communicate-better-lewy-body-dementia/#communication-challenges
https://www.lbda.org/order-lbda-materials/
Would the family be open to some educational resources?

There are a lot of them out there.
These sites have some to look at:
EXCELLENT – https://connect.mayoclinic.org/blog/dementia-hub/

http://Www.lbda.org
https://www.alz.org/alzheimers-dementia/what-is-alzheimers
https://www.alzheimers.net/
This is a tough journey for all involved – us patients, caregivers, family and friends.
I wish I could understand how to make others understand that we aren't doing anything to hurt them intentionally.

I apologize if i am rambling. My LBD mind likes to do that a lot.

Peace
Larry H

Jump to this post

Larry, You are by far, the best counselor. We do go to a counselor, but once again, finding counselors that know ANYTHING about LBD is truly impossible in South Alabama. He acts as if we are in a troubled marriage versus a very strong marriage "gifted" with an unpredictable path of LBD. We have learned more from your first hand experience and your desire to share your words than from anyone. Your words are not only truth but they are sincere, compassionate, painful and powerful.
On a personal note, as a care-giver, your first hand insights give strength to so many. May God continue to bless you with infinite opportunities to share your words of hope.

REPLY
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