Meet fellow Caregivers - Introduce yourself

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?

@colleenyoung

Hi everyone,
As the number of discussions related to caregiving increase, it was time to open a new group dedicated to caring for someone who has dementia. Many of you have already participated in discussions centered around dementia, such as mild cognitive impairment, Alzheimer's, long term care, medications, activities, self care and more. Those discussions have been moved to the new group.

General caregiving discussions and caregiving specific to other situations, such as cancer, ALS, Parkinson's, aging, lung disease, transplant, etc will remain in the Caregivers group (https://connect.mayoclinic.org/group/caregivers/)

If you are caring for someone living with dementia, I invite you to +Follow the Caregivers: Dementia group https://connect.mayoclinic.org/group/caregivers-dementia/

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This is a great idea. I have joined the new group. Thanks!

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@colleenyoung

Hi everyone,
As the number of discussions related to caregiving increase, it was time to open a new group dedicated to caring for someone who has dementia. Many of you have already participated in discussions centered around dementia, such as mild cognitive impairment, Alzheimer's, long term care, medications, activities, self care and more. Those discussions have been moved to the new group.

General caregiving discussions and caregiving specific to other situations, such as cancer, ALS, Parkinson's, aging, lung disease, transplant, etc will remain in the Caregivers group (https://connect.mayoclinic.org/group/caregivers/)

If you are caring for someone living with dementia, I invite you to +Follow the Caregivers: Dementia group https://connect.mayoclinic.org/group/caregivers-dementia/

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Hi Colleen,

Yay!!! Thanks so much! I will be able to focus on dementia
issues and stop having to delete millions of emails related to things I
know nothing about.

Have a great day!
Virginia Naeve
>

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That’s great, as it is the one group I can relate to. Thanks!

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@virginianaeve

Hi Colleen,

Yay!!! Thanks so much! I will be able to focus on dementia
issues and stop having to delete millions of emails related to things I
know nothing about.

Have a great day!
Virginia Naeve
>

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Let me know if anyone has any issues adjusting their notification preferences to receive only the email notices that interest you.

Here are some helpful tips
– Adjust your preferences in your Account Settings https://connect.mayoclinic.org/account/
– Subscribe or Unsubscribe from a Discussion https://connect.mayoclinic.org/get-started-on-connect/#subscribe-unsubscribe-discussion
– How to Set Notification Preferences https://connect.mayoclinic.org/get-started-on-connect/#notification-preferences

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Yes! Colleen keep me in the dementia care givers’ group.

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@colleenyoung

Hi everyone,
As the number of discussions related to caregiving increase, it was time to open a new group dedicated to caring for someone who has dementia. Many of you have already participated in discussions centered around dementia, such as mild cognitive impairment, Alzheimer's, long term care, medications, activities, self care and more. Those discussions have been moved to the new group.

General caregiving discussions and caregiving specific to other situations, such as cancer, ALS, Parkinson's, aging, lung disease, transplant, etc will remain in the Caregivers group (https://connect.mayoclinic.org/group/caregivers/)

If you are caring for someone living with dementia, I invite you to +Follow the Caregivers: Dementia group https://connect.mayoclinic.org/group/caregivers-dementia/

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Count me in

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I was a caregiver to my Mom who passed away this past May. She had long term care insurance so I did not have to provide day to day care but I was the one adult child who was physically present. It was weird not having the 3-4 day a week visits and the trips to the hospital. I guess Mom knew I would have more on my plate… my husband was diagnosed with Stage 3 Squamous Cell Lung Cancer at the end of August. For now, finished with radiation and chemo, and now on to immunotherapy. I work full time but grateful for a company that allows as much time off as needed so I am available for treatments, tests and meetings with all the doctors. Most days we are "good" and other days there are the whole spectrum of emotions floating around. So I'm here to "hear" and help take care of me.

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@mcleslie

I was a caregiver to my Mom who passed away this past May. She had long term care insurance so I did not have to provide day to day care but I was the one adult child who was physically present. It was weird not having the 3-4 day a week visits and the trips to the hospital. I guess Mom knew I would have more on my plate… my husband was diagnosed with Stage 3 Squamous Cell Lung Cancer at the end of August. For now, finished with radiation and chemo, and now on to immunotherapy. I work full time but grateful for a company that allows as much time off as needed so I am available for treatments, tests and meetings with all the doctors. Most days we are "good" and other days there are the whole spectrum of emotions floating around. So I'm here to "hear" and help take care of me.

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@mcleslie Indeed, you are in a good spot where your employer allows you the time off you need. And I bet you have let them know, so they will continue that outlook moving forward. Does your company offer you EAP [Employee Assisted Programs]? If so, they can help refer you to support groups or help in your area. Of course we are always here for you, but face it, sometimes that in-person connection can feel like more, if that makes sense. So, tell us if you care to share, what you are doing for yourself?
Ginger

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I'm not sure about EAP but I am looking around for a "home" so I have a local support family. So these days,I take myself to the library, getting lost in a good book is a favorite. I paint my nails every Sunday. I cry in the shower and let the worry flow down the drain. I allow myself to binge watch something on Netflix. When it is really hard to cope, I do laundry or clean, just like my mother, lol. It becomes a meditation. I'm an alum of cognitive therapy so I take out those "tools" one of which is allowing the storm of emotions come knowing that they will pass. We laugh every day, that's one of the many reasons why I fell in love with my husband. We take time off from cancer, it is always there but we put it aside when we can. It is a marathon so I try to pace myself. Thanks for asking! I'm here to share.

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Hello. My name is Debbie. My husband had a heart transplant on September 12, 2019 at the Mayo Clinic in Phoenix. While I am so grateful for his new heart, I’m struggling with our life changes. There’s a battle within me knowing on one hand it’s an absolute miracle what has happened in his life, on the other hand I have been his caregiver for years and feel like time is passing me by. This is not even close to the retirement I envisioned for us. I love him with all my heart and I don’t want to move on without him. I just feel stuck.

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@debbief

Hello. My name is Debbie. My husband had a heart transplant on September 12, 2019 at the Mayo Clinic in Phoenix. While I am so grateful for his new heart, I’m struggling with our life changes. There’s a battle within me knowing on one hand it’s an absolute miracle what has happened in his life, on the other hand I have been his caregiver for years and feel like time is passing me by. This is not even close to the retirement I envisioned for us. I love him with all my heart and I don’t want to move on without him. I just feel stuck.

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Hello @debbief, and welcome to Mayo Connect!

I do applaud you for your honest expression of feelings. It really took courage to write about your feelings as you did.

I am sure that this is a different retirement journey than what you had anticipated and that while you are grateful for your husband's new
heart, you are still struggling with your caregiver responsibilities.

I am sure that others on this forum can appreciate your feeling of being "stuck." I'll invite @IndianaScott and @debbraw and others to join you in this discussion.

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@debbief

Hello. My name is Debbie. My husband had a heart transplant on September 12, 2019 at the Mayo Clinic in Phoenix. While I am so grateful for his new heart, I’m struggling with our life changes. There’s a battle within me knowing on one hand it’s an absolute miracle what has happened in his life, on the other hand I have been his caregiver for years and feel like time is passing me by. This is not even close to the retirement I envisioned for us. I love him with all my heart and I don’t want to move on without him. I just feel stuck.

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Hello @debbief I am sorry to read of your husband’s health issues. A tough road for him for sure.

You’re right about our lives changing due to caregiving and a loved one’s major health condition. It was true in my wife’s case with her brain cancer diagnosis. It was never the future we had thought about, but we had no choice, especially her.

It did take time for us to understand each new reality as it unfolded on us.

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@debbief

Hello. My name is Debbie. My husband had a heart transplant on September 12, 2019 at the Mayo Clinic in Phoenix. While I am so grateful for his new heart, I’m struggling with our life changes. There’s a battle within me knowing on one hand it’s an absolute miracle what has happened in his life, on the other hand I have been his caregiver for years and feel like time is passing me by. This is not even close to the retirement I envisioned for us. I love him with all my heart and I don’t want to move on without him. I just feel stuck.

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@debbief I can so relate to what you say about being stuck and this not being the retirement you had planned. My husband and I loved to travel and it all came to a crashing halt when I got sick. He became my caretaker and missed so many things he wanted to do. I’m a lot stronger now and have shown him that I can be on my own for several days, so I encourage his camping trips, fishing expeditions, etc. We make some big travel plans always knowing that we can cancel if I’m not up to it. This is definitely not what we had planned, either, but……
What care do you do for him now? Can he go places? Have you thought about short trips with other women?

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@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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My name is Deb and I'm currently a caregiver to my husband, who was diagnosed with Glioblastoma early in 2019. I also was a caregiver to my mother, who passed away from cancer at the age of 44, back in 1987.
This is certainly a very stressful time of my life and I hope to hear from the rest of all you amazing caregivers.
Deb

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