1. < Caregivers
Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

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

Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 16, 2019
In reply to @ice "Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory..." + (show)
@ice

Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory loss is evident. We are American expats who now live in Asia. Medical care is good where we live because we live in a medical tourism destination but there's not a lot of education for caregivers for those with dementia. He's taking Exelon as well as meds to control BP, blood sugar, cholesterol. I would benefit from education about how to deal with issues around his memory loss and the progression of his illness.

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Hello @ice I am sorry to read of your husband's healthcare journey, but it is good to hear you are somewhere with good medical care!

While you will find many hints, tips, and suggestions here on the caregiving discussion group, I am wondering if you have checked out the resources of the national Alzheimer's Association at http://www.alz.org? Also there is some good stuff at http://www.caregiver.org.

As a longtime caregiver for my wife, who while suffering from brain cancer but suffered from many dementia-like symptoms, my daughter-in-law's father who had Alzheimer's, and my mother-in-law who suffered from frontal temporal dementia, one of the things I can say is the dementia journey is highly individualized as are the caregiving demands of each patient. One thing I found in each was routine was incredibly important and helpful to the patient as well as the caregiver. Changes of any kind (location, medical visits, etc.) were often causes for additional decline.

What educational resources have you accessed so far?

Strength, courage, and peace!

REPLY
2 replies
ice | @ice | Sep 16, 2019
In reply to @IndianaScott "Hello @ice I am sorry to read of your husband's healthcare journey, but it is good..." + (show)
@IndianaScott

Hello @ice I am sorry to read of your husband's healthcare journey, but it is good to hear you are somewhere with good medical care!

While you will find many hints, tips, and suggestions here on the caregiving discussion group, I am wondering if you have checked out the resources of the national Alzheimer's Association at http://www.alz.org? Also there is some good stuff at http://www.caregiver.org.

As a longtime caregiver for my wife, who while suffering from brain cancer but suffered from many dementia-like symptoms, my daughter-in-law's father who had Alzheimer's, and my mother-in-law who suffered from frontal temporal dementia, one of the things I can say is the dementia journey is highly individualized as are the caregiving demands of each patient. One thing I found in each was routine was incredibly important and helpful to the patient as well as the caregiver. Changes of any kind (location, medical visits, etc.) were often causes for additional decline.

What educational resources have you accessed so far?

Strength, courage, and peace!

Jump to this post

Thank you for your reply. I haven't accessed much in terms of educational resources so I appreciate the links you shared.

REPLY
ice | @ice | Sep 16, 2019
In reply to @IndianaScott "Hello @ice I am sorry to read of your husband's healthcare journey, but it is good..." + (show)
@IndianaScott

Hello @ice I am sorry to read of your husband's healthcare journey, but it is good to hear you are somewhere with good medical care!

While you will find many hints, tips, and suggestions here on the caregiving discussion group, I am wondering if you have checked out the resources of the national Alzheimer's Association at http://www.alz.org? Also there is some good stuff at http://www.caregiver.org.

As a longtime caregiver for my wife, who while suffering from brain cancer but suffered from many dementia-like symptoms, my daughter-in-law's father who had Alzheimer's, and my mother-in-law who suffered from frontal temporal dementia, one of the things I can say is the dementia journey is highly individualized as are the caregiving demands of each patient. One thing I found in each was routine was incredibly important and helpful to the patient as well as the caregiver. Changes of any kind (location, medical visits, etc.) were often causes for additional decline.

What educational resources have you accessed so far?

Strength, courage, and peace!

Jump to this post

Thank you so much for your positive and encoraging reply. My husband is very functional but I have noticed that disruptions in his schedule as well as travel are disorienting. I will have to check out a Dayclock.

REPLY
virginianaeve | @virginianaeve | Sep 16, 2019
In reply to @ice "Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory..." + (show)
@ice

Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory loss is evident. We are American expats who now live in Asia. Medical care is good where we live because we live in a medical tourism destination but there's not a lot of education for caregivers for those with dementia. He's taking Exelon as well as meds to control BP, blood sugar, cholesterol. I would benefit from education about how to deal with issues around his memory loss and the progression of his illness.

Jump to this post

Hello @ice. My name is Virginia Naeve and my mom suffered with Alzheimer's dementia for 8 years. I was her caregiver, as well as having her in Assisted Living after several years. I felt I had to share some tips and information that I learned over the years, so I started a website which holds my blogs. It has a lot of information about dementia as well as helpful tips. Please look it up. It is called A New Path for Mom and it can be found at http://www.anewpathformom.com. I am planning to have a page where I can post the most recent research information and hopefully will get to that soon. It's tough. Please reach out as it will make you feel like you are not alone.

REPLY
1 reply
ice | @ice | Sep 16, 2019
In reply to @virginianaeve "Hello @ice. My name is Virginia Naeve and my mom suffered with Alzheimer's dementia for 8..." + (show)
@virginianaeve

Hello @ice. My name is Virginia Naeve and my mom suffered with Alzheimer's dementia for 8 years. I was her caregiver, as well as having her in Assisted Living after several years. I felt I had to share some tips and information that I learned over the years, so I started a website which holds my blogs. It has a lot of information about dementia as well as helpful tips. Please look it up. It is called A New Path for Mom and it can be found at http://www.anewpathformom.com. I am planning to have a page where I can post the most recent research information and hopefully will get to that soon. It's tough. Please reach out as it will make you feel like you are not alone.

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Thank you Virginia. I will check out your blog.

REPLY
kw1904861 | @kw1904861 | Sep 17, 2019
In reply to @becsbuddy "@kw1904861 I’m so glad you got an appointment for him with his doctor! If he won’t..." + (show)
@becsbuddy

@kw1904861 I’m so glad you got an appointment for him with his doctor! If he won’t go, maybe you could go anyway. You could explain all that’s happened and get some advice on helping him. You’ve done a good job so far! Let us know how it goes

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Well i think he agreed to go to therapy finally... I was gonna go for guardianship if he didnt go... Lets hope he does go..... She put him on a new med too to help with his anger... Towards me..

REPLY
1 reply
Debbra Williams, Alumna Mentor | @debbraw | Sep 17, 2019
In reply to @ice "Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory..." + (show)
@ice

Hello. I'm 65. My husband, age 69, has been diagnosed with early stage vascular dementia. Memory loss is evident. We are American expats who now live in Asia. Medical care is good where we live because we live in a medical tourism destination but there's not a lot of education for caregivers for those with dementia. He's taking Exelon as well as meds to control BP, blood sugar, cholesterol. I would benefit from education about how to deal with issues around his memory loss and the progression of his illness.

Jump to this post

Hi @ice - I'm so sorry about your husband's diagnosis. My husband was diagnosed with multi-domain dementia (Alzheimer's and vascular dementia) about 4 years ago when he was 74. It felt like a huge kick in the gut when I first heard those words. I can only imagine how you are feeling being so far away. The single best resource I've come across is a class called The Savvy Caregiver Program. I don't know how much it costs because I took it through our local Council on Aging, but it was truly worth its weight in gold! Here's a link to it:
http://license.umn.edu/technologies/z08156_the-savvy-caregiver-program-for-alzheimer-caregiver-training
The next best resource was a local Caregiver's Support Group which meets twice a month - again, at our local Council on Aging. See if you can find a support group near you. It is such a relief to be able to talk freely to others who are facing the same issues.

Last, from my own personal experience, I can share that vascular dementia has a little different trajectory than Alzheimer's. All else equal, Alzheimer's can tend to be a gradual decline whereas vascular dementia can have sharp drops and then plateaus. It is scary and difficult. I would say that if you can possible get your head turned around to focus on what things you can still do and what abilities he still has, (instead of what has been lost), your days will be better and even include some moments of joy. Can I ask you what prompted you to have testing done? And what are the issues that are most troubling right now?

REPLY
kayak_dude | @kayakeradams | Sep 18, 2019

This is my first time on Mayo clinic connect. Seems to be a good resource for sharing and learning. My wife has been battling lung cancer for 3 years and it metastasized to her brain in January. It's been a roller coaster of hospital stays, doctors appointments and steady decline. I'm fortunate because I have support from family and friends. However, after becoming ill from chronic stress I realized I needed an outlet so here I am. Looking forward to reading and posting on this site. Thanks

REPLY
3 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 18, 2019
In reply to @kayakeradams "This is my first time on Mayo clinic connect. Seems to be a good resource for..." + (show)
@kayakeradams

This is my first time on Mayo clinic connect. Seems to be a good resource for sharing and learning. My wife has been battling lung cancer for 3 years and it metastasized to her brain in January. It's been a roller coaster of hospital stays, doctors appointments and steady decline. I'm fortunate because I have support from family and friends. However, after becoming ill from chronic stress I realized I needed an outlet so here I am. Looking forward to reading and posting on this site. Thanks

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Hello @kayakeradams Nice to e-meet you here on Mayo Connect. I am Scott and was my wife's caregiver during her 14+ year war with brain cancer. I am glad to read you found Connect. I also came here due to the isolation and stress of caregiving. You are correct that this group is a good place to share, learn new hints and tips, and vent. I think caregivers need all three at times.

I am sorry to read of your wife's health journey. Sounds like a tough one, indeed. The roller-coaster aspect of caregiving was one of the most difficult things for me to cope with -- as was the daily grind of being needed 24/7.

Looking forward to your next post. Do you have any specific questions?

Strength, courage, and peace

REPLY
Debbra Williams, Alumna Mentor | @debbraw | Sep 18, 2019
In reply to @kayakeradams "This is my first time on Mayo clinic connect. Seems to be a good resource for..." + (show)
@kayakeradams

This is my first time on Mayo clinic connect. Seems to be a good resource for sharing and learning. My wife has been battling lung cancer for 3 years and it metastasized to her brain in January. It's been a roller coaster of hospital stays, doctors appointments and steady decline. I'm fortunate because I have support from family and friends. However, after becoming ill from chronic stress I realized I needed an outlet so here I am. Looking forward to reading and posting on this site. Thanks

Jump to this post

Hi @kayakeradams - I'm glad you came to Connect. I'm so sorry to hear about your wife's illness. What a year you have had after learning it had metastasized to her brain in January. My husband has dementia. I don't know if you saw the link I shared with @ice. If not I'll share it here:
http://license.umn.edu/technologies/z08156_the-savvy-caregiver-program-for-alzheimer-caregiver-training
I'm also fortunate that our local Council on Aging has a great support group that meets twice a month. Do you have any kind of support like that in your community?

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