Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

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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@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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Tag me too please.

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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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@kdo0827

@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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I am also in this situation of caregiving for my mom with newly diagnosed moderate dementia. So hard to see such a quick change from a totally independent active woman to needing to call me 8 or 9 times in a day to confirm how to use her washer/dryer, how to check her phone for messages, what appointments she has coming up, etc. After a day with her, I feel quite drained and just need downtime to regroup.

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@kdo0827

@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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Hello @kdo0827 You are in! Welcome to Mayo Connect and the caregivers discussion group! I am Scott and I was my wife’s full time caregiver for 14 years as well as a caregiver for my MIL who fought dementia.

This group is a great one made up of listeners, supporters, and helpers! I have found lots of useful tips and ideas for caregivers here!

I understand your feelings of frustration. Caregiving is an arduous journey and can be very isolating and challenging. I struggled with my wife’s anger often plus she was incredibly repetitive in her words and actions. I have no magic suggestions, but her neurologist helped me by explaining oftentimes patients lash out at the person they feel safest with — so that frequently is their loved ones and caregivers. In my case I kept an old pillow on my sofa, which I often used as a late night punching bag when my frustration overtook me.

How can we help most?

Strength, courage, and peace

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@kathymcl

I am also in this situation of caregiving for my mom with newly diagnosed moderate dementia. So hard to see such a quick change from a totally independent active woman to needing to call me 8 or 9 times in a day to confirm how to use her washer/dryer, how to check her phone for messages, what appointments she has coming up, etc. After a day with her, I feel quite drained and just need downtime to regroup.

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Hello @kathymcl Nice to have you in the caregivers group here at Mayo Connect. I am sorry to read of your Mom’s journey.

Fast changes were always scary and frustrating for me. They are tough to navigate!

The repetitive aspects of caregiving can truly be exhausting. They certainly were for me. My wife would call my name hundreds of times a day. I almost changed my name 🙂

I always say there should have been an ‘employee manual’ given when I first heard my wife’s doctor calmly say ‘you’re a caregiver now’. It’s a challenging role to be thrust into for sure!

How do you recharge? I bet other caregivers here could use any tips and techniques you use!

Strength, courage, and peace!

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@kdo0827

@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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Hi @kdo0827 and @kathymcl – I'm going to echo what @IndianaScott said – it takes all the love and patience you have and sometimes even that is not enough to keep you from seriously considering a name change! (LOL… Scott you made me laugh.) It is sometimes just heartbreaking to have to face the losses – like not knowing how to get phone messages, not remembering the way to the mall, etc. My husband was an engineer and seriously, at this point, I'm the one who has to figure out how to change the bulb in the refrigerator when it burns out! But for what its worth, someone once told me that no matter how much a person forgets – words, directions, faces, names – they always remember what it feels like to feel loved. I try to keep that in mind and act in a loving way whenever it's possible. Not that I hit that goal consistently, but I try. For me, sometimes a touch is easier and more effective than words – just a pat on the back, a squeeze of the hand, a shoulder rub… @kdo0827 – Is there anything particular your mom seems to focus her anger on? Or is it general? Sometimes, if I can identify the stimulus, I can either remove it or redirect my husband… Best wishes to both of you!

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@IndianaScott

Hello @kathymcl Nice to have you in the caregivers group here at Mayo Connect. I am sorry to read of your Mom’s journey.

Fast changes were always scary and frustrating for me. They are tough to navigate!

The repetitive aspects of caregiving can truly be exhausting. They certainly were for me. My wife would call my name hundreds of times a day. I almost changed my name 🙂

I always say there should have been an ‘employee manual’ given when I first heard my wife’s doctor calmly say ‘you’re a caregiver now’. It’s a challenging role to be thrust into for sure!

How do you recharge? I bet other caregivers here could use any tips and techniques you use!

Strength, courage, and peace!

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@IndianaScott thanks for your note back. Up until now, my only way to recharge was to come home from her senior’s residence and sit like a lump on the couch and have some quiet time. I used to do that in my final years of working after a tough day. He’d see my face coming in the door after work and tell me to go sit on the couch and he would take care of dinner. I retired 2 years ago at 67. Now I wonder how I would have managed the mom issue had I still been working. I don’t drive and am low-vision as a result of glaucoma. At that time, my mom lived in a senior’s residence a bus, 2 subways and a GO train away from me and it could take close to 2 hours to get to her. But we were able to find a place at the end of May, only a 23 min bus ride away from us so that is quite helpful, especially since I am there 3-4 days a week. She goes downstairs for meals but was having trouble remembering when to do that so we got her an ‘Alexa’ and set reminders for 1. Go to the nurses office now and get your medication, 2. Time to have your 1st (2nd,3rd,4th,5th) glass of water (as when she is dehydrated which is frequently, her thinking process seems to worsen), 3. go downstairs for your breakfast/lunch/dinner, 4. Goodnight, Rheta. I hope you had a good day. Sleep well – these types of things. And various other reminders to help keep her on track. Of course, she tries to have an actual conversation with Alexa which doesn’t work out too well but generally, she seems to get the hang of it. My husband insists that we take her out to lunch every 2nd Sunday so she gets to see him too which is great. These are some of the things we have put into place to help.

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