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Colleen Young, Connect Director
@colleenyoung

Posts: 3544
Joined: Jul 23, 2014

Meet fellow Caregivers - Introduce yourself

Posted by @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?

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Colleen Young, Connect Director
@colleenyoung

Posts: 3544
Joined: Jul 23, 2014
Posted by @colleenyoung, Aug 27, 2016

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I’d like to invite you to the new Caregivers group. It’s a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you’re caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.


soul
@soul

Posts: 30
Joined: Jan 21, 2016
Posted by @soul, Aug 28, 2016

Thank you Colleen for the invite. My sis and I have been care givers to my mother who is 77 years old. It was stressful physically and mentally. As long as you have good intention, care, gentle and kindness with good judgement , it turned out well at the end. I have experienced with our Mother for her critical surgery. She had followed through the procedures and before and after the surgery. We have to be strong so that we can share the strengths, peace and love to whom we are caring for. My Mom realized later and she appreciated what we have done for her.


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Sep 15, 2016

I am the primary caregiver for my mom who has Alzheimer’s and has been bedridden since January. Mom is 76 and before she was diagnosed had hardly been ill a day in her life. She is also the first in the family to have this awful disease (that we know of). Mom moved in with us almost 3 years ago and I would say that she is in the late middle/early late stage of the disease, though it certainly fluctuates. I hope to encourage and be encouraged through participation in this group.


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2248
Joined: Mar 28, 2016
Posted by @hopeful33250, Sep 15, 2016

@nanax2 Welcome to Mayo Connect. You certainly have a big responsibility for your mom. The caregiver group is very active and supportive. I’m sure you will find encouragement for yourself and your family! Best wishes


Colleen Young, Connect Director
@colleenyoung

Posts: 3544
Joined: Jul 23, 2014
Posted by @colleenyoung, Sep 15, 2016

Welcome @nanax2. You are certainly among people who understand, and are here to support you if only virtually.
Scott started a discussion forum here specifically for caregivers caring for someone with Alzheimer’s or dementia. Will you also join us here: https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/


Scott, Volunteer Mentor
@IndianaScott

Posts: 356
Joined: Oct 22, 2015
Posted by @IndianaScott, Sep 15, 2016

Hello and welcome @nanax2. Wonderful to e-meet you here. I am Scott and I was my wife’s primary caregiver for 14 years while she battled brain cancer. I was also one of the support caregivers for my mother-in-law who suffered from fontal-temporal dementia.

I, too, hope you find encouragement here. I certainly have and I try my best to encourage as well. It is a nonjudgmental, sharing community and one that has helped me both as a caregiver and in my healing processes.

Yes, dementia is an awful disease and I send you all the peace, strength and courage I can.

The demands of caregiving won’t decrease because you are here, but I hope it lessens the isolation and doubts that accompany caregiving as it has for me.


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Sep 16, 2016

@hopeful33250 Thank you! It is nice to be able to share and learn from others who have walked this road before me.


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Sep 16, 2016

@colleenyoung Thanks for the link to the caregiving for dementia sufferers; I’ll join that group as well. I’m always looking for more understanding of this crazy disease and how I can best love my Mom as she struggles through this. I’m so happy to have found this website!

Liked by foxylady42


nanax2
@nanax2

Posts: 10
Joined: Sep 15, 2016
Posted by @nanax2, Sep 16, 2016

@IndianaScott It is always encouraging to find those who have walked this path before. It’s not something I ever thought we’d be dealing with. I’m excited about this support group and the dementia suffers caregivers group, as well.


ihatediabetes
@ihatediabetes

Posts: 119
Joined: Oct 04, 2016
Posted by @ihatediabetes, Dec 22, 2016

I am 52 year old mother of son with Williams Syndrome. Diagnosed at Mayo Clinic 22 years ago. It’s a genetic deletion. There are many medical and cognitive effects from Williams Syndrome. This is just a suggestion. Perhaps consider starting another group specific to parent caregivers of children with special needs. I’m a veteran of special education, county case management, parents groups, Special Olympics, arc minnesota. Isolation, psychological break down. I know how it feels when mayo doctors in suits and ties tell you that your child will never grow up and will need support for life. I feel I have something to offer young parents in similar situation. I survived. We survived. But I know there are parents in the thick of things.


Colleen Young, Connect Director
@colleenyoung

Posts: 3544
Joined: Jul 23, 2014
Posted by @colleenyoung, Dec 23, 2016

Hi @ihatediabetes,
Thank you for sharing about your son with us, and for offering your support to young parents who could use the guidance of someone who has been there.
I like your suggestion about having a special group for parents caregivers of children with special needs. The good news is that we already have a group for parents in About Kids & Teens https://connect.mayoclinic.org/group/childrens-and-teens-health/ At the moment the group is not specifically designated for parenting kids with special needs, but there are several discussions dedicated parenting children with rare conditions:

– Rasmussen Encephalitis http://mayocl.in/2hjQ5qM
– Kleine Levin syndrome http://mayocl.in/2hjQGst
– Anyone with keutel syndrome? http://mayocl.in/2ikyPS5
– My son was diagnosed with tetralogy of Fallot http://mayocl.in/2hPVKUw

As you can see, I am not always able to pair new members with someone. So I am very grateful that I can tag you when a new member posts about parenting and special needs.
Thank you!


19lin
@19lin

Posts: 107
Joined: Mar 22, 2016
Posted by @19lin, Dec 24, 2016

Colleen Young I have noticed that I receive a lot of email from the caregivers group, however I signed up for the chronic pain group.  While I did care for my father when he had Alzheimer’s and helped with my mother when she had cancer, my real interest
is the chronic pain group which is what I have.  Please make sure that I receive information on chronic pain.  I receive a lot of emails and I need to reduce the ones I can.  Of course if there were something I could contribute to any group I would, but I
feel most connected the the chronic pain group.  Thanks 19lin


Colleen Young, Connect Director
@colleenyoung

Posts: 3544
Joined: Jul 23, 2014
Posted by @colleenyoung, Dec 24, 2016

@19lin, to no longer receive email notices from the caregivers group, please unsubscribe from this discussion thread. There are 2 simple ways to do this.

1. In the next email you receive, click “Unsubscribe from this discussion thread.” at the bottom of the email.
OR
2. Go to the first message of the discussion here https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself and click the +FOLLOWING button.

Learn more tips from this page https://connect.mayoclinic.org/get-started-on-connect/


ihatediabetes
@ihatediabetes

Posts: 119
Joined: Oct 04, 2016
Posted by @ihatediabetes, Dec 24, 2016

Collen, sounds good. I don’t know a lot about medically fragile children. However I went through early child special ed through transition age 18-21 special ed. I went through day programs, waivered services, guardianship as a parent caregiver. These things are all part of developmental disabilities system in Minnesota. I know how overwhelming it is for young parents. That’s why I brought up. Developmental disabilities is a system.


dorothys
@dorothys

Posts: 2
Joined: Jan 20, 2017
Posted by @dorothys, Thu, Jan 19 7:28pm

Thank you for the opportunity to express my concerns as a caregiver of my spouse who has dementia (2 1/2 yrs. diagnosed).

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