Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Many of you have met @debbraw here on Connect. Today, Debbra was featured in Connect Member Spotlights. Member Spotlights feature interviews with fellow Connect members so you can learn more about members you’ve connected with and some you haven’t met yet. Read all the spotlights (https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/).

Here’s Debbra’s spotlight:
- Creative and Caring: Meet @debbraw https://connect.mayoclinic.org/page/about-connect/newsfeed/creative-and-caring-meet-debbraw/

Click the link and pop over to tell Debbra and others what it has meant for you to have these connections on Connect.

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My wife has been diagnosed with vascular dementia. MRI shows little white spots in her brain in the short term memory area. She has a PFO (hole in her heart) that allows a bit of unfiltered blood to get to her brain. Aspirin and Warfarin have not helped stop the TIAs as we had hoped. Our doctor tells us that because those did not help, the surgery to close the hole in her heart is not likely to help the problem so he has referred us to a Neurologist. Short term forgetfulness is getting noticeably worse. Does Mayo have expertise that might help? We've used Mayo in Scottsdale, AZ in the past with great success.

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@johncottingham

My wife has been diagnosed with vascular dementia. MRI shows little white spots in her brain in the short term memory area. She has a PFO (hole in her heart) that allows a bit of unfiltered blood to get to her brain. Aspirin and Warfarin have not helped stop the TIAs as we had hoped. Our doctor tells us that because those did not help, the surgery to close the hole in her heart is not likely to help the problem so he has referred us to a Neurologist. Short term forgetfulness is getting noticeably worse. Does Mayo have expertise that might help? We've used Mayo in Scottsdale, AZ in the past with great success.

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Hi, @johncottingham. Welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Caring for omeone with dementia/Alzheimer's." I did this so that you can connect with other members in a similar situation to yours.

Click VIEW & REPLY in the email notification, and you will be able to read through the past messages by members like @mongerj @debbraw @dianajane @cathyb and others. I'd also like to introduce you to @IndianaScott.

With your wife's diagnosis of vascular dementia, short-term forgetfulness getting noticeably worse and being advised the surgery to correct the hole in her heart is unlikely to help the problem, I imagine you have many questions. I trust these other members will provide some insights.

Mayo Clinic does indeed have expertise in dementia. Here is some information on vascular dementia from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793. If you go to the tab on Doctors & Departments, you will see some of the physicians who care for your wife's condition. If you are interested in requesting an appointment, please see this information http://mayocl.in/1mtmR63.

What would you say is your greatest concern presently about your wife's condition, @johncottingham?

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@johncottingham

My wife has been diagnosed with vascular dementia. MRI shows little white spots in her brain in the short term memory area. She has a PFO (hole in her heart) that allows a bit of unfiltered blood to get to her brain. Aspirin and Warfarin have not helped stop the TIAs as we had hoped. Our doctor tells us that because those did not help, the surgery to close the hole in her heart is not likely to help the problem so he has referred us to a Neurologist. Short term forgetfulness is getting noticeably worse. Does Mayo have expertise that might help? We've used Mayo in Scottsdale, AZ in the past with great success.

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Hi @johncottingham I am sorry to read of your wife’s healthcare challenges. I am Scott and my mother-in-law had dementia and received her care at Mayo, although it was at their Rochester campus. From what I saw with my MIL, the dementia doctors at Mayo are truly world class! They have an incredible level of experience and understanding we saw nowhere else.

I wish you both the best and find Connect as helpful as I have. I hope you will feel comfortable asking any questions you might have!

Scott

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@IndianaScott

Hi @johncottingham I am sorry to read of your wife’s healthcare challenges. I am Scott and my mother-in-law had dementia and received her care at Mayo, although it was at their Rochester campus. From what I saw with my MIL, the dementia doctors at Mayo are truly world class! They have an incredible level of experience and understanding we saw nowhere else.

I wish you both the best and find Connect as helpful as I have. I hope you will feel comfortable asking any questions you might have!

Scott

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Thanks for your response.

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@lisalucier

Hi, @johncottingham. Welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Caring for omeone with dementia/Alzheimer's." I did this so that you can connect with other members in a similar situation to yours.

Click VIEW & REPLY in the email notification, and you will be able to read through the past messages by members like @mongerj @debbraw @dianajane @cathyb and others. I'd also like to introduce you to @IndianaScott.

With your wife's diagnosis of vascular dementia, short-term forgetfulness getting noticeably worse and being advised the surgery to correct the hole in her heart is unlikely to help the problem, I imagine you have many questions. I trust these other members will provide some insights.

Mayo Clinic does indeed have expertise in dementia. Here is some information on vascular dementia from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793. If you go to the tab on Doctors & Departments, you will see some of the physicians who care for your wife's condition. If you are interested in requesting an appointment, please see this information http://mayocl.in/1mtmR63.

What would you say is your greatest concern presently about your wife's condition, @johncottingham?

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You are a champ! Thanks for the hot links.

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@lisalucier

Hi, @johncottingham. Welcome to Mayo Clinic Connect. You'll notice I moved your message to this existing discussion, "Caring for omeone with dementia/Alzheimer's." I did this so that you can connect with other members in a similar situation to yours.

Click VIEW & REPLY in the email notification, and you will be able to read through the past messages by members like @mongerj @debbraw @dianajane @cathyb and others. I'd also like to introduce you to @IndianaScott.

With your wife's diagnosis of vascular dementia, short-term forgetfulness getting noticeably worse and being advised the surgery to correct the hole in her heart is unlikely to help the problem, I imagine you have many questions. I trust these other members will provide some insights.

Mayo Clinic does indeed have expertise in dementia. Here is some information on vascular dementia from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/vascular-dementia/symptoms-causes/syc-20378793. If you go to the tab on Doctors & Departments, you will see some of the physicians who care for your wife's condition. If you are interested in requesting an appointment, please see this information http://mayocl.in/1mtmR63.

What would you say is your greatest concern presently about your wife's condition, @johncottingham?

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My greatest concern is stopping the progression of the vascular dementia. We have an appointment with a Neurologist on January 4 and we'll see what he says (Dr. Lawrence Green). Then we'll know if we need to come to Mayo.

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@johncottingham

My wife has been diagnosed with vascular dementia. MRI shows little white spots in her brain in the short term memory area. She has a PFO (hole in her heart) that allows a bit of unfiltered blood to get to her brain. Aspirin and Warfarin have not helped stop the TIAs as we had hoped. Our doctor tells us that because those did not help, the surgery to close the hole in her heart is not likely to help the problem so he has referred us to a Neurologist. Short term forgetfulness is getting noticeably worse. Does Mayo have expertise that might help? We've used Mayo in Scottsdale, AZ in the past with great success.

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Hi @johncottingham - I know this must be a scary time for both of you. My husband was diagnosed with Mild Cognitive Impairment in 2015 - and a lot of his issues are based on vascular brain damage. Mayo has a program called Healthy Action to Benefit Independence & Thinking (HABIT) that was established to help people dealing with cognitive issues. If you are eligible, they run 10 day programs where both the patient and the partner attend to learn techniques for dealing with the cognitive decline. The program was a real god-send for me and my husband.
Here is the Connect Page dealing with the program:
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed/what-is-habit-healthy-action-to-benefit-independence-thinking/

Has your wife had the neuro-psychological assessment? For us, that's the way we started our journey. That led to getting a diagnosis and being referred to the HABIT program. Wishing you and your wife all the best.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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@colleenyoung I’d like to join this group. I take care of my mom who suffers with dementia. It’s a hard battle for me as she’s angry most of the time. I could use some pointers for myself so that I don’t get aggravated with having to repeat things multiple times. I don’t let her see it but it happens.

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