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Meet fellow Caregivers - Introduce yourself

Caregivers | Last Active: Nov 12, 2023 | Replies (707)

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@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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Replies to "My 75 year old husband had a kidney transplant 3 years ago at Mayo. We've been..."

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?

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