Connect
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?
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HugInterested in more discussions like this? Go to the Caregivers Support Group.
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Jugar, how are things with you today?
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.
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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1 ReactionThank 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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2 ReactionsHi 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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4 ReactionsI 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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1 ReactionHi 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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2 Reactions@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?
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.
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.