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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.

Sandy Dominy | @sandydominy1 | Aug 28, 2016
In reply to @tavi "Hi - thank you for the invite. I'm new to the Mayo Clinic Connect and very..." + (show)
@tavi

Hi - thank you for the invite. I'm new to the Mayo Clinic Connect and very curious to see how it all works - I used virtual communication a great deal during my work and appreciate the opportunity to cross geographic boundaries! I joined the Mayo Clinic Connect with the specific goal of exploring solutions to a physical problem my husband experiences each night -- he has profuse sweating on the upper right side of his body. None of our local specialists have been able to identify a cause or provide solutions... I'm hopeful someone may have ideas for us to try....

It is a great added benefit to be able to participate in this care giver group. My husband was diagnosed with dementia in the spring of 2014 -- I had noticed many changes before the actual diagnosis and was able to transition from my career into full-time care giver status by November of that year. With 30+ years together, it has been a blessing to be able to be here with him on this difficult journey. At the same time, I know that I have never faced as great or as many challenges on a daily basis. Each step has involved a tremendously steep learning curve -- I look forward to hearing from each of you and sharing my experiences.
Best regards

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I've read where Botox can help that problem. Check it out!!

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lindabf | @lindabf | Aug 28, 2016

Sandy, my daughter-in-law was diagnosed with Stage 4 Metastatic Melanoma which follows a pattern of tumors in the extremities, then the gut, then the lungs, then the brain. She had surgery for all of those within a very few months. Doctors still say they thought it was a death sentence However, due to some amazing caregiver support by her Mom, my son, her twin sister and others, coupled with some amazing advances in immunotherapy approaches to cancer, she is today disease-free and the proud Mommy of a 7-month-old beauty. The advice I've heard her give others is "don't focus on the prognosis; focus on the next step and keep your spirits as high as you can." Hope you will soon have a similarly amazing story to tell!

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 28, 2016
In reply to @IndianaScott "Hello @colleenyoung and everyone! I am happy to introduce myself and I welcome this new caregivers..." + (show)
@IndianaScott

Hello @colleenyoung and everyone! I am happy to introduce myself and I welcome this new caregivers forum with open arms and high hopes!

As a bit of background, my name is Scott and I was the primary caregiver for my wife during her 14 year journey with brain cancer. After a phenomenal fight, she passed away this past July 7th.

I agree with Colleen as she says caregiving is rewarding, demanding, and certainly can be extremely isolating. I also believe caregiving is a unique journey for each caregiver because each of their patient's illnesses and their journey is also unique. This said, I also wonderfully agree with Colleen that a group like this can be a true blessing to anyone living the life of a caregiver.

Sharing our experiences, needs, glories, frustrations, and questions here will be wonderful for any and all who choose, or are thrust, into a caregiving role.

I enjoy sharing about my caregiving jouney and answering questions about it.

My desire is to be honest and open about the realities of my caregiving journey.

Peace and strength to each and all

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Yes, it was. Stage II until it suddenly went to Stage IV for her last 2+ years. She fought an intense and amazing battle.

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Sandy Dominy | @sandydominy1 | Aug 28, 2016
In reply to @IndianaScott "Hello @colleenyoung and everyone! I am happy to introduce myself and I welcome this new caregivers..." + (show)
@IndianaScott

Hello @colleenyoung and everyone! I am happy to introduce myself and I welcome this new caregivers forum with open arms and high hopes!

As a bit of background, my name is Scott and I was the primary caregiver for my wife during her 14 year journey with brain cancer. After a phenomenal fight, she passed away this past July 7th.

I agree with Colleen as she says caregiving is rewarding, demanding, and certainly can be extremely isolating. I also believe caregiving is a unique journey for each caregiver because each of their patient's illnesses and their journey is also unique. This said, I also wonderfully agree with Colleen that a group like this can be a true blessing to anyone living the life of a caregiver.

Sharing our experiences, needs, glories, frustrations, and questions here will be wonderful for any and all who choose, or are thrust, into a caregiving role.

I enjoy sharing about my caregiving jouney and answering questions about it.

My desire is to be honest and open about the realities of my caregiving journey.

Peace and strength to each and all

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Our's began as a Stage IV. Just praying that it doesn't return for quite awhile

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Sandy Dominy | @sandydominy1 | Aug 28, 2016

Thanks so much. We try not to focus on the prognosis but I did cry for months! Still do occasionally but we are excited that Duke will be there if we need them. His positive attitude is working wonders. Thanks again for your uplifting post

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rozalia | @rozalia | Aug 28, 2016

HI, I'd like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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8 replies
Sandy Dominy | @sandydominy1 | Aug 28, 2016
In reply to @rozalia "HI, I'd like to join the caregivers forum My situation is a little different then most..." + (show)
@rozalia

HI, I'd like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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This is EXACTLY the group you should be a part of. All our situations are different but we have one thing in common. We are Caregivers

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soul | @soul | Aug 28, 2016
In reply to @colleenyoung "Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott..." + (show)
@colleenyoung

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.

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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.

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lindabf | @lindabf | Aug 28, 2016
In reply to @rozalia "HI, I'd like to join the caregivers forum My situation is a little different then most..." + (show)
@rozalia

HI, I'd like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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Rozalia, I agree this is a good group for you. As caregivers we need lots of sources of encouragement and this is one. I'm watching the person who was my Mom disappear just as you are with your husband. It's not pleasant, very challenging, and sometimes the hopelessness of it all gets overwhelming. When that happens, we need each other's support so much!

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rozalia | @rozalia | Aug 29, 2016

Right now I am in a bad place and really struggling. The kind words and support I have received from all of you is like a small candle in the dark. Thank you all.

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