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?

@edbennett

Hi Colleen,

I’m joining the group because my wife and I are caretakers for her mother (my Mother-in-law). She has mid to late stage dementia and has lived with us since May of this year. We both work from home and have a caretaker with her during business hours.

Things have settled into a routine, but the usual stresses are there. Fortunately, she is almost always cheerful – like a happy toddler, but confused.

We’re doing Ok, but it’s always good to be part of a group like this one.

Thanks,
Ed

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Welcome Ed! Glad you joined us. I invite you to explore all the topics on the Caregiver’s group. Here’s a shortlist of the recent discussions specific to dementia and caregiving.

– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO
– Transitions….. Medications for Behavioral Symptoms http://mayocl.in/2h6TeIz
– Dementia Anger Issues – bathing http://mayocl.in/2g0Urkt

@kateia @IndianaScott @rmftucker @sallysue @nanax2 @tavi @macbeth will you join me in welcoming Ed to our group?

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@edbennett

Hi Colleen,

I’m joining the group because my wife and I are caretakers for her mother (my Mother-in-law). She has mid to late stage dementia and has lived with us since May of this year. We both work from home and have a caretaker with her during business hours.

Things have settled into a routine, but the usual stresses are there. Fortunately, she is almost always cheerful – like a happy toddler, but confused.

We’re doing Ok, but it’s always good to be part of a group like this one.

Thanks,
Ed

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Hello @edbennett! Nice to e-meet you here! I am Scott and I wish you a peaceful holiday season for you and your family. I was the primary caregiver for my wife for 14+ years and one of the secondary caregivers for my MIL for 5 years before that.

I send you courage and strength and am glad you joined us here!

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@edbennett
Welcome to our group, Ed. Hopefully, you will find support here.

My husband was diagnosed with dementia 4 1/2 years ago. I had to stop working 2 1/2 years to care for him full time. Looking back, I had begun to wonder about dementia at least two years before he was diagnosed. Over the past year, his decline has accelerated. He has always been a pleasant person, and remains so except that more and more often he becomes anxious or agitated. Then things change a bit.

I think you will find much useful information from the fellow members on this site.

Macbeth

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@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.

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I am 52 year old mother of son with Williams Syndrome. Diagnosed at Mayo Clinic 22 years ago. It’s a genetic deletion. There are many medical and cognitive effects from Williams Syndrome. This is just a suggestion. Perhaps consider starting another group specific to parent caregivers of children with special needs. I’m a veteran of special education, county case management, parents groups, Special Olympics, arc minnesota. Isolation, psychological break down. I know how it feels when mayo doctors in suits and ties tell you that your child will never grow up and will need support for life. I feel I have something to offer young parents in similar situation. I survived. We survived. But I know there are parents in the thick of things.

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@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.

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Hi @ihatediabetes,
Thank you for sharing about your son with us, and for offering your support to young parents who could use the guidance of someone who has been there.
I like your suggestion about having a special group for parents caregivers of children with special needs. The good news is that we already have a group for parents in About Kids & Teens https://connect.mayoclinic.org/group/childrens-and-teens-health/ At the moment the group is not specifically designated for parenting kids with special needs, but there are several discussions dedicated parenting children with rare conditions:

– Rasmussen Encephalitis http://mayocl.in/2hjQ5qM
– Kleine Levin syndrome http://mayocl.in/2hjQGst
– Anyone with keutel syndrome? http://mayocl.in/2ikyPS5
– My son was diagnosed with tetralogy of Fallot http://mayocl.in/2hPVKUw

As you can see, I am not always able to pair new members with someone. So I am very grateful that I can tag you when a new member posts about parenting and special needs.
Thank you!

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@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.

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Colleen Young I have noticed that I receive a lot of email from the caregivers group, however I signed up for the chronic pain group.  While I did care for my father when he had Alzheimer’s and helped with my mother when she had cancer, my real interest
is the chronic pain group which is what I have.  Please make sure that I receive information on chronic pain.  I receive a lot of emails and I need to reduce the ones I can.  Of course if there were something I could contribute to any group I would, but I
feel most connected the the chronic pain group.  Thanks 19lin

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@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.

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@19lin, to no longer receive email notices from the caregivers group, please unsubscribe from this discussion thread. There are 2 simple ways to do this.

1. In the next email you receive, click “Unsubscribe from this discussion thread.” at the bottom of the email.
OR
2. Go to the first message of the discussion here https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself and click the +FOLLOWING button.

Learn more tips from this page https://connect.mayoclinic.org/get-started-on-connect/

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@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.

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Collen, sounds good. I don’t know a lot about medically fragile children. However I went through early child special ed through transition age 18-21 special ed. I went through day programs, waivered services, guardianship as a parent caregiver. These things are all part of developmental disabilities system in Minnesota. I know how overwhelming it is for young parents. That’s why I brought up. Developmental disabilities is a system.

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Hi, I’m Mayflower7. I am 72 years old and have a dear friend of 25 years who is 62 and suffering from early onset Alzheimer’s. She has been force to resign from her teaching position for almost two years. I live about two hours from her, but we are more like sisters than friends. She has very little family. Her son is taking charge of her personal finances etc..and is doing a great job, but he also is a couple of hours away.
She is going through “Confabulation”…and my last visit with her was very difficult to know the truth from her Truth..she is very combative, paranoid, and feels no one understands what she is going through.. some of her habits are unsafe.. no matter how I tried to help her she would not accept any help.
It was a hard visit.. when I left it was amicable…and I continued to text her positive messages etc.. she responded positively.
Then out of the blue she sent me a message and said ” please don’t contact me again. I am done with this!”
I was shocked, and upset…not understanding why she suddenly reacted this way. I text her back and asked her to please tell me why and what is wrong?
I received no response.. I informed her son and he suggested I let it lay for awhile!
How does someone who wants to do the right thing go about helping, not hindering a person with this type of dementia!

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Hello @mayflower7 I am Scott and I was a secondary caregiver for my MIL who suffered from dementia from the age of 52, as well as the primary caregiver for my wife who suffered from brain cancer for 14 years and struggled with many dementia-like symptoms. Let me say I am in no way any type of medical professional, so what I say only comes from my experiences as a caregiver and having worked for the Alzheimer’s Association.

With my wife it was very important for me to take, and accept, my cues from her. I would often tell folks ‘if I wanted to I could spend all day arguing over almost anything and everything’. Instead I picked only those ‘battles’ which were crucial, let her have her thoughts, and did my best to, more often than anything else, just ‘be’ with her. I allowed her view of reality to be her reality with me just along to keep her company and safe.

Given what you describe, it could be that the phone is causing your friend increased anxiety. Could be the sound of calls/texts coming in, could be new confusion at using the phone, could be the light in it, the interruptions (especially if she happens to be focusing on something else at the time). Plus things simply change without notice and at time any rhyme or reason. Unexpected interruptions in daily routine can be very challenging for many patients with dementia.

I wish you courage and strength!

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Thank you, Scott. You are encouraging. I have just been encountering this exact thing the last few days. My husband of 62 years is complaining that he is going to through the phone away as I am on it all the time. I made two business calls this evening! Also he will only let the TV be on if it is a program he wants to watch. We also had an altercation this a.m. about the fact that I was watching a local station to get a weather report. I feel like I’m being isolated from the world. But tomorrow may be a different day.

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@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.

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Thank you for the opportunity to express my concerns as a caregiver of my spouse who has dementia (2 1/2 yrs. diagnosed).

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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I understand your frustrations because my husband was diagnosed 2-3 years ago w/dementia and he was an active type a personality, very active, etc. and now he does not do anything…..oddly, he thinks he works hard all day, but mostly he is looking for lost items, etc. and takes forever to shave, won’t shower (only sink baths,etc.). I still feel like he is “present” with me and our children but he is definitely different now. I am thankful that he still knows us and is happy with our present situation. One thing he does that frustrates me is his obsessing on one thing (like keys) for unlimited time….either hunting them or constantly trying them in one lock or another.

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Hi, I have been married for 66 years to my husband, he is hard of hearing without his hearing aids. Perhaps your hubby needs to have a check up, not just his hearing. Could be a start of dementia.or something else. I know as we get older I am 83, hubby 89 things are not the same all the time. Just a thought.
Nancy shodrtshot80

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@rozalia

HI, I’d like to join the caregivers forum My situation is a little different then most of you. I am a 79 year old caring for my 85 year old husband who has Alzheimers. He was diagnosed two years ago and it was confirmed when they did a brain biopsy while inserting a shunt for his NPH hydrocephalis. I was hoping that was the cause for his memory problems but unfortunately it was not to be.I know there is no cure or hope of recovery. Only medication to try and slow down the decline.I care for the man I love who is slowing changing in front of my eyes,at times I do not see the man I married at all. It.s a difficult situation and at times the stress gets the best of me. As I write this I am not sure if this is the right group for me to join. If not let me know and I wish all you caregivers out there my best wishes and my prayers.

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Welcome to the Caregivers group on Connect, @dorothys! We have an active group of people caring for a partner or parent with dementia.

Here are a few discussions to get you started.
– Caring for someone with dementia / Alzheimer’s http://mayocl.in/2ccA0jO
– Dementia Anger Issues – bathing http://mayocl.in/2g0Urkt
– Husband with early Alzheimers -question http://mayocl.in/2fd7gbG

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