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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 5, 2021
In reply to @jugar "Thank you both for your support and encouragement. Some days are incredibly hard and you helped..." + (show)
@jugar

Thank you both for your support and encouragement. Some days are incredibly hard and you helped me get through one of them. Although each situation is unique, I know my situation is not isolated. Ginger - - it was and is helpful to know how you got through. I am thankful to hear the words from someone who actually walked through this and came out the other side. I am fortunate I have family supporting me through this incredibly difficult stance and decision making process. Ultimately, I know my husband's actions (or lack their of) will determine the outcome but in the meantime each 'no' I have to say crushes the shards of my heart even more. Thank you again for your support to me and others in this process.

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Jugar, how are things with you today?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 5, 2021
In reply to @rockwood "I am Annie and my husband was diagnosed with Parkinson a year ago. We thought we..." + (show)
@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.

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Hi Annie,
I add my welcome. You may also wish to follow and take part in the Parkinson's group here on Mayo Clinic Connect:
- Parkinson's Disease https://connect.mayoclinic.org/group/parkinsons-disease/

From fellow caregivers and people living with Parkinson's, you can learn more about what you can expect, ask questions, and give and get support.

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1 reply
maryflorida | @maryflorida | Sep 5, 2021
In reply to @colleenyoung "Oh dear, Mary. So often I see you offering your generous support to others. It's your..." + (show)
@colleenyoung

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?

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We do play a few easy games like Mexican Train dominoes.. we go to a church now and then. we used to travel a lot... I think he is planning to take the long bridge drive in southern Florida. I am so afraid for him.

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opheli | @opheli | Sep 6, 2021
In reply to @colleenyoung "Opheli, In order to get relevant updates related to the groups you may be interested in,..." + (show)
@colleenyoung

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.

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Thank you, Colleen. It is uplifting to me to read so many positive and hopeful comments on these forums. I have been on sites that are very depressing and anxiety producing, so I try to be careful where I "land." Thank you again, and I will look at, and follow those discussions.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 7, 2021
In reply to @maryflorida "My 75 year old husband had a kidney transplant 3 years ago at Mayo. We've been..." + (show)
@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)

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Hi Mary - This is truly a difficult situation to be in. Especially isolated from your kids and others by Covid. Not knowing the path his pulmonary fibrosis will take makes it all harder.

I'm going to take a slightly different approach here - you have been taking care of him for several years, and you are tired and now scared by the new diagnosis. You said you don't know what to do for him - let me turn this around - what are his current abilities? Are there things he can do to care for you, and ease the load on you?

Sometimes when people are ill, we think we are being kind by taking over every possible task. I was guilty of that too, when caring for my Mom - I would race to her apartment after work to do her laundry before going home to do my own chores (or dumping them on my husband.) One day I arrived to find (store bought) cookies and tea on the table, and a smug smile on her face. She said "Sit down and visit. Then you can make my bed. The rest of the laundry is done and put away." She explained that she had attached a shoelace to her laundry basket, used her walker to pull it to the laundry room down the hall, washed and dried everything, then dumped it on her bed and folded it or hung it up. She said it was her exercise for the day, and I shouldn't "help her to death." From now on, I was only to do for her what she couldn't do anymore (like make the bed) and save a little time and energy to visit her.

Wow! Maybe you can gradually hand some routine chores to your husband. Either give back stuff he used to do, or tell him "I've been doing [dishes] (folding laundry, dusting, mopping...) for 50 years - it's your turn now." Show him what to do & how to do it - then LET GO - it won't be done your way, but it will be done.

If he's a computer guy, give him your list and have him order groceries on-line, and pick them up. Or get him to start a regular group email with your kids, asking them to each reply or have their kids reply, at least once a week - maybe even attaching photos or videos.

His time will be occupied, he will be contributing, and you will get a break. Maybe even have time and energy left for a drive and a picnic, a walk at the beach, or a nap.

Do you think any of this can work for you?
Sue

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1 reply
maryflorida | @maryflorida | Sep 7, 2021
In reply to @sueinmn "Hi Mary - This is truly a difficult situation to be in. Especially isolated from your..." + (show)
@sueinmn

Hi Mary - This is truly a difficult situation to be in. Especially isolated from your kids and others by Covid. Not knowing the path his pulmonary fibrosis will take makes it all harder.

I'm going to take a slightly different approach here - you have been taking care of him for several years, and you are tired and now scared by the new diagnosis. You said you don't know what to do for him - let me turn this around - what are his current abilities? Are there things he can do to care for you, and ease the load on you?

Sometimes when people are ill, we think we are being kind by taking over every possible task. I was guilty of that too, when caring for my Mom - I would race to her apartment after work to do her laundry before going home to do my own chores (or dumping them on my husband.) One day I arrived to find (store bought) cookies and tea on the table, and a smug smile on her face. She said "Sit down and visit. Then you can make my bed. The rest of the laundry is done and put away." She explained that she had attached a shoelace to her laundry basket, used her walker to pull it to the laundry room down the hall, washed and dried everything, then dumped it on her bed and folded it or hung it up. She said it was her exercise for the day, and I shouldn't "help her to death." From now on, I was only to do for her what she couldn't do anymore (like make the bed) and save a little time and energy to visit her.

Wow! Maybe you can gradually hand some routine chores to your husband. Either give back stuff he used to do, or tell him "I've been doing [dishes] (folding laundry, dusting, mopping...) for 50 years - it's your turn now." Show him what to do & how to do it - then LET GO - it won't be done your way, but it will be done.

If he's a computer guy, give him your list and have him order groceries on-line, and pick them up. Or get him to start a regular group email with your kids, asking them to each reply or have their kids reply, at least once a week - maybe even attaching photos or videos.

His time will be occupied, he will be contributing, and you will get a break. Maybe even have time and energy left for a drive and a picnic, a walk at the beach, or a nap.

Do you think any of this can work for you?
Sue

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I think so. He is willing and he does do the dishes for me whenever I ask. He is assembling some IKEA patio furniture as i write this. The group email is a good idea. I will suggest that to him. Thank you, Sue.

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rockwood | @rockwood | Sep 9, 2021
In reply to @IndianaScott "Hello, @rockwood I'm sorry to read of your husband's diagnosis, but say welcome to Mayo Connect...." + (show)
@IndianaScott

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

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Hi Scott, thank you for your encouragement. I really appreciate folks like you who volunteered to mentor us in this capacity. I am sure there will be questions along the way but just feel lucky that I found this group. Annie

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rockwood | @rockwood | Sep 9, 2021
In reply to @colleenyoung "Hi Annie, I add my welcome. You may also wish to follow and take part in..." + (show)
@colleenyoung

Hi Annie,
I add my welcome. You may also wish to follow and take part in the Parkinson's group here on Mayo Clinic Connect:
- Parkinson's Disease https://connect.mayoclinic.org/group/parkinsons-disease/

From fellow caregivers and people living with Parkinson's, you can learn more about what you can expect, ask questions, and give and get support.

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@colleenyoung Thank you very much. I thought I did choose to follow Parkinson Disease. When I went to the topic, I could not find my name under members. Does that matter?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 9, 2021
In reply to @rockwood "@colleenyoung Thank you very much. I thought I did choose to follow Parkinson Disease. When I..." + (show)
@rockwood

@colleenyoung Thank you very much. I thought I did choose to follow Parkinson Disease. When I went to the topic, I could not find my name under members. Does that matter?

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Rockwood, I see you in the member list under "R". See here https://connect.mayoclinic.org/group/parkinsons-disease/tab/members/?pg=31#member-listview

Looks like you're following and are part of the group. Welcome.

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jugar | @jugar | Sep 12, 2021
In reply to @colleenyoung "Jugar, how are things with you today?" + (show)
@colleenyoung

Jugar, how are things with you today?

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Hi Colleen, Sorry for the delayed reply and thank you for checking in. The last two weeks have been chaotic. When at the hospital to meet the transplant team to begin the interviews, my husband was in such bad shape, they immediately admitted him and began the physical evals. Within 2 days, the ICU roller coaster began. It was touch n go for several days. The team has worked tirelessly to get him stable, so they can complete the testing and formally submit his case. They all believe he will be approved despite the fact the addiction has not and is not being addressed. We live 125 miles away from the hospital he is in - which has made my visits more infrequent. He is adamant to come home; I am equally as adamant I can't care for him in this condition. It's a battle and he is angry and frustrated with me, thinking I am being unreasonable and selfish. I reached out to the transplant team today to ask them to slow the roll on the discharge. They were under the impression there is fulltime care here at home, which there is not. It's just me and with work, all the more challenging. The man is still on a feeding tube and catheter so I am puzzled as to why there is such urgency to release him. ? Pretty sure it's coming from my husband. Now I am wallowing in guilt - questioning if I did the right thing sending the brutally honest email - yet knowing I did. Fearing they will not approve him now; fearing they will. His pre-transplant care plan has now become a glaring issue for the transplant panel. I've been clear I cannot be the primary or secondary post-caregiver. Now I feel trapped that I have to be the pre-care provider. I am not heartless and want to do what is right ... but I am struggling more then ever. So very, very tired.

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