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?

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

@opheli

I came upon this forum as I was researching my husband's colon cancer situation last night. He was diagnosed about a year ago, and had a large tumor removed from his colon in April, after about four months of chemo. A recent PET scan showed two small spots, one on his liver, and one on his lung. He is beginning chemo again tomorrow in hopes of treating those. Yes, being a caregiver can be emotionally draining. I try to remain positive, and most of the time I am successful, but I also would love to feel "normal" again. Between covid and cancer, not sure when that will happen!

The reason that I am responding to your post, is that my husband is an alcoholic who has been sober for 34 years. I do remember the complete frustration of living with an alcoholic. How awesome of you to be able to put into words your thoughts and feelings the way that you have. I want to share with you, that I joined Al-Anon all those years ago, at the recommendation of our family doctor. It changed my life. I learned much about myself that I carried forward in raising my kids, in my friendships, my job as a teacher, and of course, my marriage.
You have a great understanding of what is going on with your husband and yourself. Take a deep breath, give yourself a break and realize that you have come a long way!

Jump to this post

Hello, @opheli @jugar and @gingerw I'll second the idea of the help Al-Alnon and the AA principles can be for caregiving. I grew up with an alcoholic father and spent a decade and a half as a caregiver for my wife. While it took several 'tries' by my dad for him to find his sobriety, my going through the family part of the program as well as years of Al-Anon were a wonderful help to me. Most of all, for me, the one-day-at-a-time philosophy helped me exist during those years of caregiving. Later some other steps helped my wife in her final months when she also embraced the wisdom of steps such as making amends.

One of the most challenging aspects of caregiving for me was accepting that there were many things I couldn't change, just like my father's alcoholism. I struggled early with accepting the fact family had no interest in helping, friends and family who ghosted on us, and some of the decisions my wife made that I might have made differently. It took me time to understand that there was little to be gained by my trying to make uncaring people care.

Strength, courage, and peace

REPLY
@IndianaScott

Hello, @opheli @jugar and @gingerw I'll second the idea of the help Al-Alnon and the AA principles can be for caregiving. I grew up with an alcoholic father and spent a decade and a half as a caregiver for my wife. While it took several 'tries' by my dad for him to find his sobriety, my going through the family part of the program as well as years of Al-Anon were a wonderful help to me. Most of all, for me, the one-day-at-a-time philosophy helped me exist during those years of caregiving. Later some other steps helped my wife in her final months when she also embraced the wisdom of steps such as making amends.

One of the most challenging aspects of caregiving for me was accepting that there were many things I couldn't change, just like my father's alcoholism. I struggled early with accepting the fact family had no interest in helping, friends and family who ghosted on us, and some of the decisions my wife made that I might have made differently. It took me time to understand that there was little to be gained by my trying to make uncaring people care.

Strength, courage, and peace

Jump to this post

Ginger,Scott, and Colleen, Thank you for welcoming me to the group, and for your kind comments.
Scott, I agree that accepting what we cannot change is one of the most difficult aspects of caregiving, and maybe life in general! And letting go can be a breath of fresh air. 🙂
Ginger, my husband had his first treatment of this new cycle, today. I don’t think I was quite prepared for that feeling of stepping back in time to what treatment is like for him. He has been feeling almost like his "old self" lately, so it’s difficult to watch him have to go thru it again. He will also not be able to go to work on a regular basis, so that will throw us both off. We do better when in our "routine." He is now scheduled for four treatment cycles, and then they will see where he is at.
Thank you all again….i am so appreciative of being able to have open and honest dialogue with others who have "been there, done that…"

REPLY
@IndianaScott

Hello, @opheli @jugar and @gingerw I'll second the idea of the help Al-Alnon and the AA principles can be for caregiving. I grew up with an alcoholic father and spent a decade and a half as a caregiver for my wife. While it took several 'tries' by my dad for him to find his sobriety, my going through the family part of the program as well as years of Al-Anon were a wonderful help to me. Most of all, for me, the one-day-at-a-time philosophy helped me exist during those years of caregiving. Later some other steps helped my wife in her final months when she also embraced the wisdom of steps such as making amends.

One of the most challenging aspects of caregiving for me was accepting that there were many things I couldn't change, just like my father's alcoholism. I struggled early with accepting the fact family had no interest in helping, friends and family who ghosted on us, and some of the decisions my wife made that I might have made differently. It took me time to understand that there was little to be gained by my trying to make uncaring people care.

Strength, courage, and peace

Jump to this post

This was very helpful. Let’s stay in touch.

REPLY
@nskinner5

This was very helpful. Let’s stay in touch.

Jump to this post

Very helpful from nskinner5.

REPLY

I am Annie and my husband was diagnosed with Parkinson a year ago. We thought we could live happily ever after post our retirement. We travelled and enjoyed our lives. The news of his illness hit me harder than him. Both of us have been quite healthy and the diagnosis sent me to the deep end. I experienced depression for a while. Now I am back and decided to do my best to take care of him but sometimes wondered my own ability and energy. I would like to learn as much as I can from this group.

REPLY
@nskinner5

This was very helpful. Let’s stay in touch.

Jump to this post

Hi @nskinner5 Happy t oi stay in touch and answer any questions you might have!
Strength, Courage, & Peace

REPLY
@rockwood

I am Annie and my husband was diagnosed with Parkinson a year ago. We thought we could live happily ever after post our retirement. We travelled and enjoyed our lives. The news of his illness hit me harder than him. Both of us have been quite healthy and the diagnosis sent me to the deep end. I experienced depression for a while. Now I am back and decided to do my best to take care of him but sometimes wondered my own ability and energy. I would like to learn as much as I can from this group.

Jump to this post

Hello, @rockwood I'm sorry to read of your husband's diagnosis, but say welcome to Mayo Connect. You are right in that none of us know what the future holds for us, especially when it comes to our health and the health of our loved ones. It is good to have you here in the discussions about caregiving. For me, my years as a caregiver is what drove me to find Connect. It's a challenging journey and while each caregiver, patient, and their journeys are unique, I think you might find some good ideas, suggestions, etc. here from your fellow caregivers across the country and globe.

You specifically mentioned your doubt about your energy for this and I well remember all the doubts I had about whether or not I could even be a caregiver and over the years if I'd have the energy to carry on with the daily demands of caregiving. All I can say is all each of us can do as a caregiver is our best at the time. There are no superheroes in caregiving. Superman and Wonder Woman only exist in the comics.

Please let me know if you have any questions.

Strength, Courage, & Peace

REPLY
@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.

Jump to this post

My 75 year old husband had a kidney transplant 3 years ago at Mayo. We've been married 49 years so far. He has diabetes, and just now diagnosed with pulmonary fibrosis. I don't think he knows how serious it is, and I don't want to tell him right now.
He is not sick yet, only coughing. But I am feeling overwhelmed and do not know what I need to do for him. He does not want to go anywhere due to the covid problem. I just now emailed seven of our children for support, and no response as yet of course. We live far from everyone, but used to fly to see them all frequently as we fly free. Now, that is not going to be any help for him. He is tired of being in the house and afraid of covid. Is there an article somewhere that helps a caregiver to know what all to do?
(first picture most of the kids, second picture is of my dh with two of our sons)

REPLY
@opheli

Ginger,Scott, and Colleen, Thank you for welcoming me to the group, and for your kind comments.
Scott, I agree that accepting what we cannot change is one of the most difficult aspects of caregiving, and maybe life in general! And letting go can be a breath of fresh air. 🙂
Ginger, my husband had his first treatment of this new cycle, today. I don’t think I was quite prepared for that feeling of stepping back in time to what treatment is like for him. He has been feeling almost like his "old self" lately, so it’s difficult to watch him have to go thru it again. He will also not be able to go to work on a regular basis, so that will throw us both off. We do better when in our "routine." He is now scheduled for four treatment cycles, and then they will see where he is at.
Thank you all again….i am so appreciative of being able to have open and honest dialogue with others who have "been there, done that…"

Jump to this post

Opheli,
In order to get relevant updates related to the groups you may be interested in, I recommend that you "Follow" the groups related to your interests. Here are a few suggestions:
- Caregivers https://connect.mayoclinic.org/group/caregivers/
- Colorectal Cancer https://connect.mayoclinic.org/group/colorectal-cancer/
- Addiction & Recovery https://connect.mayoclinic.org/group/addiction-recovery/

To follow a group, simply go to the group page and click Follow in the upper corner.
See full instructions here: https://connect.mayoclinic.org/get-started-on-connect/

Hope to see you in the Colorectal Cancer group when you might have questions and in the Addition & Recovery group where I'm confident you have support and words of wisdom to offer.

REPLY
@maryflorida

My 75 year old husband had a kidney transplant 3 years ago at Mayo. We've been married 49 years so far. He has diabetes, and just now diagnosed with pulmonary fibrosis. I don't think he knows how serious it is, and I don't want to tell him right now.
He is not sick yet, only coughing. But I am feeling overwhelmed and do not know what I need to do for him. He does not want to go anywhere due to the covid problem. I just now emailed seven of our children for support, and no response as yet of course. We live far from everyone, but used to fly to see them all frequently as we fly free. Now, that is not going to be any help for him. He is tired of being in the house and afraid of covid. Is there an article somewhere that helps a caregiver to know what all to do?
(first picture most of the kids, second picture is of my dh with two of our sons)

Jump to this post

Oh dear, Mary. So often I see you offering your generous support to others. It's your turn to lean on our shoulders. An new and additional diagnosis of pulmonary fibrosis is overwhelming. There's certainly no rush to outline the seriousness of IPF to him. He may even know and be choosing not to face that yet. There will be the right time to talk about that in due time.

Right now you're looking for things to do together that bring joy. I can certainly empathize with being tired of being in the house.

@becsbuddy started this list of activities for caregivers to do with their loved ones.
- Activities to share https://connect.mayoclinic.org/discussion/activities-to-share/

Let's brainstorm some ideas that are COVID safe. Along with Becky, @debbraw and @sueinmn are great sources of ideas and I'll invite them into this discussion.
Mary, what interests do you and your husband share?

REPLY
Please sign in or register to post a reply.