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.

@IndianaScott

Hello @l32 My name is Scott and I was my wife's caregiver during her almost decade and a half war with brain cancer. I agree with you that life as a caregiver is a tough one and difficult to manage! I know each patient's journey, disease, and that of their caregiver are unique, but I can share some of my experiences in the hope they might be of help.

I found the only way I could manage was to look at caregiving as a fusing of my wife's life and mine in a way I never imagined when we married and figured our lives were joined then. Rather than two lives, I saw it as half of hers and half of mine. Her disease caused her to give up so much of her life and I, in turn, gave up parts of mine to help her. My view was I was living a new life in that way.

I appreciated your oxygen mask line. As much as I always understand this on an airplane, personally, I found this was not always possible as a caregiver. There were simply many times my wife's needs had to come first. Additionally, there were many aspects of our lives that took a backseat to where they usually had been before. Tasks became divided quickly between "must do" and "used to do". This helped me not become overwhelmed and being OK seeing certain tasks, etc. as unnecessary due to the new demands of a life with caregiving at its core. For instance, dust bunnies became pets rather than a byproduct of my lack of dusting and vacuuming enough 🙂

I also agree caregiving can be extremely isolating. I sure felt it was in my case and like you utilized as much technology as possible to combat those feelings. That's actually how I discovered Mayo Connect. I also used 'old tech' such as writing letters, which gave me something to look forward to in the mail and offered me something I could do at odd hours.

I hope this helped. I am always happy to answer any questions!

I wish you Strength, Courage, & Peace

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THANK YOU so very very much for your insight. love your comment about dust bunnies. ...I appreciate your perspective and that helps me significantly. I thank you more than words can say.
it helps to know I am not alone...even though I know that guidance intellectually, I need to act more on that...and keeping in mind, gratitude as we both are fortunate in so much, worth mention here its the care at Mayo.

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Sherry Molpus-70 years old-my souse is blind

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@sbmop1968

Sherry Molpus-70 years old-my souse is blind

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Sherry
Thanks for sharing. I'm 78 and feel like I'm almost blind after multiple detached retinas and 30 years fighting glaucoma. I have no central vision in left eye and only lower half of field in right eye. And glare is a real problem. I suspect I may be blind in the next 10-15 years and would like to learn more about life with a blind person so my wife Charlotte can prepare. She does all the driving now and we hold hands when walking so I don't trip on steps and things I don't see.
I hope you will share more about how you cope?
Don

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I am a 64 year old wife, caring for my 80 year old husband with mid-stage Alzheimer's. He is still able to do his daily living tasks, but that is about it. I think after awhile he is using muscle memory, because his cognition skills are very low. Absolutely no short term memory, no word re-call, no reasoning or comprehension. I really need groups such as these, because I cannot carry on any kind of conversation with him. He attends a day center three days a week, which he loves!!!! This was the greatest blessing of the year!!!! I get some time off from caregiving, and he now has a purpose. He thinks he is going to work now. I pack his lunch, because his picky eating has gotten so much worse since his diagnosis. He was diagnosed in 2017. Thank you for this group. I live in West Chester, Ohio; a suburb of Cincinnati, Ohio

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@sbmop1968

Sherry Molpus-70 years old-my souse is blind

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@sbmop1968 Hello, Sherry. I’m glad you found the caregiver’s group. All the members here will be glad to answer any questions you might have. Just ask! And you can be a big help to Don, who said he’s almost blind.
Come join us and feel free to say anything you want!

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I am 87 years old and my husband is 86, he has both diabetes and Parkinsons, and I am his caregiver. We have great medical care, but there is no Parkinsons support group since covid. I am in reasonable health, but the stress of the dealing with the complications of the two diseases and. his decline is more than I can handle without someone to talk to about what to expect as it progresses and how to deal with it. We have no family living close, but they give us all the support they can with calls and visits when they can travel. I have never been good at being open to people about our problems, but I know I need to find support somewhere that I am comfortable with. So, I will try reading how others deal with a situation like this. Thank you.

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I am the caregiver for my spouse who is suffering from 24/7 severe chronic pain due to arachnoiditis and other pain issues. She has it in her lumbar nerves but has also convinced herself that it has spread all the way up her spine to her head thus causing migraine headaches. There is no MRI evidence of this. She refuses any treatment as she is fearful of additional pain from the treatment. Every day around 6pm she experiences such pain that she will pass out. She won't take her pain meds until the pain gets to this point. I feel badly for her but also get angry because I feel she isn't acting in her own best interests and is seeking my attention and empathy. On top of that I am recovering from my 4th concussion. Any suggestions as to how to be more compassionate and responsive would be greatly appreciated.

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Hi: I have been aware of and reading this group's questions and answers for about 4 years. I am 81 and my husband is 83. He was "diagnosed" by a PCP who provided him with a frequently use form for making these decisions. That was the end of her help, she refused to do any further testing or to refer him to a Neurologist or any one else. Further requests for referrals were only answered with, "we can only know on autopsy:". I changed our insurance this year and I am now going through learning the in's and outs of the new plan and new primary Dr. I would be lost without the information I have learned just from reading what others have to say. My husband can still think through some things and often even fix some things. His memory is getting much worse and he seems to have very little patience with me, which often results in an angry sounding reply. He has a calendar that I keep up to date on places we must go. He has tremendous anxiety about our safety, (we live in a very safe quiet neighborhood. Every time I need to leave to do something he is very worried every minute that something will happen to me. I still have hope we can get a further referral so we can learn more about where we may be headed. I appreciate everyone sharing their ideas so very much. Thank you, We live in Colorao.

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My name is Deanna and my husband has Parkinsons. Was diagnosed January 2020, at age 55. We realize now he had it in his mid 40's. It was a long horrific time trying to get a diagnosis. He has had DBS surgery, but now has functional tremors. He still works from home and I do not work. so I see the difficulties all day long. I feel like we are a very old couple because of the lack of strength that he has. It is so limiting.

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I'm Brian and I'm 64 and the primary caregiver for my 89 year old mother with mid-stage dementia. Unfortunately I am also going through a divorce and the financial upheaval that goes with that. Last month I hit a wall hard and my doctor really has helped get me back off the constant edge and on track with support. I got in some great support series through the Arizona Caregiver Coalition as well as the great support from the Mayo staff and this group. I appreciate all the honest outpouring in this group.

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