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?

Thank you, thank you, for your support! You are the first person I have found who even acknowledges there is a problem. Most just get angry at my frustration.

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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I so very much agree with you and your anger. I am a care giver and I have challenges but I am NOT the person who needs and must be at the focus of attention. You, just like my husband, need to be actively engaged as early as possible in the discussion of what is happening and what can be done to help you cope with the changes that are underway. I’ve never experienced hospice but think that there needs to be something like the hospice model available to everyone who is diagnosed with Alzheimer’s — yes, I understand every situation is different and there will probably be denial or lack of understanding (as is the case for my husband) but he is facing challenges to his physical and emotional well being that he needs to have affirmed and helped with coping. As a caregiver and his wife, I can do a lot but our lack of knowledge means we are spending precious time searching for solutions while the individuals with Alzheimer’s are suffering more than they should or need to.

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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Thank you! I am so surprised that the caregiver’s website is the one place I have found support. I am not alone in my frustration.

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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@tavi you are SO right! There needs to be much better, patient-centered care for those with Alzheimer’s disease and other forms of dementia.

I am sure what I am about to type is not universal, but in far too many cases I have experienced medical professionals who are simply out of their league, or at least their comfort zone, with dementia (or any patient with less than ‘normal’ mental capabilities so they try and just move those patients along down the line.

I had one doctor tell me, in front of my wife who he thought could not comprehend conversation, that since my wife had very high anxiety and was having a hard time coping with her wait time, she was no longer welcome to come to him for his services! And this was just to have a baker’s cyst drained so she could perhaps walk better. No thought to what the patient needed to get better — not at all.

And if I had a nickel for every time a physician told me ‘we’ll get back to you with some suggestions for your wife’s care’ — but I never heard from again — I’d be a billionaire!

Patients with cognitive issues need far better support and understanding than they seem to be getting now — and that my wife ever did (other than from her neuro-oncologist who stuck with us for the entire 14 year journey).

Again @nocaregiverneedednohelpavailable — be strong and you might want to check out the resources offered by the Rehabilitation Institute of Chicago. My wife was inpatient there for months and they actually did provide her with some coping skills redevelopment skills.

Strength and peace to all,

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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I am so sorry for what you and your wife went through. Thank you for the support and the reference. I will check it out immediately.

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@nocaregiverneedednohelpavailable

I have early onset Alzheimer’s. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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Oh my – we’ve had similar experiences….. I’ve actually scolded (in front of my husband because it was important he understood I was unhappy too) a neurologist we were referred to because he was being a bully to my husband during our meeting…. unfortunately great knowledge does not always equate with empathy and understanding…

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@nocaregiverneedednohelpavailable

Thank you, thank you, for your support! You are the first person I have found who even acknowledges there is a problem. Most just get angry at my frustration.

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Welcome @nocaregiverneedednohelpavailable. I’m thrilled that you have joined Mayo Clinic Connect.
I would dearly love to have people with early onset dementia/Alzheimer’s share their experiences, cares and concerns in this community. The best Connect group to meet others with early onset is in the Brain & Nervous System group https://connect.mayoclinic.org/group/brain-and-nerve-diseases/. To start, you might like to meet Ginny here: https://connect.mayoclinic.org/discussion/several-issues/ Feel free to stay with us in the Caregivers group too.

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My husband has Waldenstroms cancer and just diagnosed with autonomic neuropathy. The doctor suspects he also has amoloidosis which sound terrible. We’re waiting on blood and urine tests. Anyone know much about this?

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@burrkay

Hi Coleen-
Thank you Coleen for moderating this group, and thank you all for your participation.
A little about our “journey”….
When I was much younger, I watched in amazement as my father cared for my mother, who struggled with diabetes for 15 years, until she finally passed. I always was so sadenned by my mothers struggle with her illness that I guess it never dawned on me that the disease took its toll on my father as well. He never once complained!
Now, I find myself caring for my own wife of 53 years, who now has stage IV lung cancer. It may sound strange but her disease has pulled us closer together! We now hold each other more, while all the time dreading the thought of being separated! I guess, over 53 years of marriage we tend to take our lives together for granted.
I find myself absorbed in reading everything I can about cancer, particularly lung cancer. Our friends have also drawn closer, and have added that special touch of prayers and compassion.
Our journey has also strengthened our faith in God! We believe He has taken us down this path in our journey here on earth for a reason, and we can only accept it and try to make the best of it. One of our friends gave us a hand crafted sign that says “One day at a time”. He is a recovering alcoholic, and says this sign given to him from a friend some 36 years ago, helped him get through some very difficult times with his disease. We now have that sign in the window of our sitting room where each morning and evening we look out onto our beautiful scape and remind ourselves that we will take in the day/night “One day at a time”.
Yes, care giving is demanding and at times stressful. But it is rewarding to know that our journey has brought us closer together. Take a break from it now and then to recharge. But accept it as a God given gift that you are there to help your loved one.
I want to pause to thank the special people-doctors, nurses, students, and staff at Mayo Clinic. Without you and your dedication, my wife would not be here today. We were headed down a very dark path, relying upon local medical services, and that all changed when we turned to Mayo Clinic in Rochester – some 15 months ago. The clinical approach alone is so much more effective, speak nothing of the exceptional doctors and staff. We had spent 15 months with tests/procedures and even an unnecessary surgery trying to determine what was causing the pneumonias. When we finally turned to Mayo, it took less than two weeks to get the diagnosis and resultant surgery behind us.

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Glad you could join us here @burrkay. You and several other members have mentioned how this journey has strengthened your relationship and brought you and your partner closer together. For some the opposite is true.

I wonder if you would like to start a new discussion about this in the Caregivers group?

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@azjulie

My husband has Waldenstroms cancer and just diagnosed with autonomic neuropathy. The doctor suspects he also has amoloidosis which sound terrible. We’re waiting on blood and urine tests. Anyone know much about this?

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Hi @azjulie, welcome to the caregivers group on Connect. We have members here who have experience with all 3 of these conditions. You may wish to read and take part in the following discussion:

– Current diagnosis is Amyloidosis and multiple myeloma http://mayocl.in/2bAqF5j
– Non Hodgkin’s lymphoma http://mayocl.in/2cpKVI7
– Diagnosed with AL Amyloidosis. What can I expect? http://mayocl.in/2bQSFQR
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction http://mayocl.in/2cpLFwR

When was your husband first diagnosed with Waldenstrom’s non-Hodgkin’s lymphoma?

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Last fall he had blood clots in his legs and lungs. High protein in his blood brought more tests and the diagnosis. Went through 2 sessions of retoxin and 10 days of imbruvica which really beat him up. We’re waiting on blood and urine tests for a diagnosis on his neuropathy. He has severe pain in his hands. Finds if he wears golf gloves on his hands it helps the pain.

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@dawn_giacabazi

My heart, love & prayers go out to each and everyone of you. @martyc2016 @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993 @lindabf. Caregiving is the most difficult job you each will ever have. Your kindness and tender care will draw your hearts closer to the ones you love. They may not express it to you in words but know you are making a huge difference in their lives. 🙂

My mother the most kind, gental, amazing woman at 60 came to me with a headache ( which was uncommon). I begged her to see a doctor. Stubbornly she ignored me for 3 days. The 3rd day she was crying, I angerly told her “dang it mom, please go to the er or see a doctor!! You can either go willingly or you will end up in there by 911. 🙁 The next morning @ 2am came the call from my brother. “I think mom had a stroke, she can’t get up or respond to me” I rush to the ER. The Doctor says ” She has to go!! 3 tumors, she has to go now!!” They life flighted her to a bigger hospital. I drove very quickly to her. The doctor showed me the MRI. Over a hundred fingers rapped her brain and through it. Tumors grew at the end of 3. Diagnosed with stage 4 glioblastoma. Surgery was certain to leave her unable to communicate or get out of bed. She decided quality over quantity. They did a biopsy but she awoke during the procedure. Was horrible but she finally woke up. Went through tramador chemo, radiation and passed away peacefully 5 months later. 🙁 I miss her every second of every day. But I am greatful I was able to tenderly care for her! I wouldn’t want that any other way for her. But that is not for everyone. Towards the end was very difficult and not graceful. That’s enough for now. Will discuss more details on a later post.

Much love
Dawn

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My first post and I find this group helping and caring and this subject
dear to my heart .I live with my 90yr old mother and I am not sure who’s
taking care of who most of the time I was recently diagnosed with a
thoracic aortic anyurism 4.9 cm in size I have been a pretty much healthy
active person my hole life I am 60 and until a month ago never even had a
family Dr . was never in the hospital in my life. Anyway my mom who is all
but deaf is an amazing woman who has been active and worked full time up
age 88 I see her now starting to forget things and appear to be somewhat
confused and has been depressed off and on I have been able to talk with
her about it and I can understand her sorrow .She has outlived most if
not all her friends. Not sure why I am posting this now other than I am for
once I my life scared thanks for the opportunity to share

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Hello, my name is Nancy Bush. I am 83 years old, have been married (next month 66 years) My husband has had various cancers since 1996. All cancers were severe, several surgeries. He has asbestos, on oxygen all night, a permanent catheter, which is changed every three weeks. I have been the caregiver all these years. Last October I went to the doctor for a tremendous sore throat and cough. Primary doc said a cat scan which showed fluid in my left lung. Again in December more fluid. January 22 I had surgery, a four food plastic hose inserted in my left lung. Well, four days later they took the hose out, Doc said I have two kinds of lung cancer. Right lung has plain old lung cancer. Left lung has Mesothelioma. So far I have had two cat scans which showed no increase to speak of. Next month Sept. some time I will have another cat scan and see my oncologist. I have been just so emotional for the last several months. I am tired, physically some, mentally much. I suppose some of it is my age. (Not afraid) but….. I don’t know. I can talk to my pastor some. I live in a small town on the Oregon coast. 25 miles either direction for a hospital or consular. I don’t drive any more which is a problem to even see a doctor.
I thought perhaps this way I can maybe talk. Nancy

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@shortshot80
Welcome to connect!
So pleased you took the time to introduce yourself. Sounds like it’s time to take alittle time for yourself. I am so happy to hear there has been no new growth.

What kind of things do you do to help relax? Sounds like daily activities are stressful & understandably so.

Huggs
Dawn

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@dawn_giacabazi

My heart, love & prayers go out to each and everyone of you. @martyc2016 @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993 @lindabf. Caregiving is the most difficult job you each will ever have. Your kindness and tender care will draw your hearts closer to the ones you love. They may not express it to you in words but know you are making a huge difference in their lives. 🙂

My mother the most kind, gental, amazing woman at 60 came to me with a headache ( which was uncommon). I begged her to see a doctor. Stubbornly she ignored me for 3 days. The 3rd day she was crying, I angerly told her “dang it mom, please go to the er or see a doctor!! You can either go willingly or you will end up in there by 911. 🙁 The next morning @ 2am came the call from my brother. “I think mom had a stroke, she can’t get up or respond to me” I rush to the ER. The Doctor says ” She has to go!! 3 tumors, she has to go now!!” They life flighted her to a bigger hospital. I drove very quickly to her. The doctor showed me the MRI. Over a hundred fingers rapped her brain and through it. Tumors grew at the end of 3. Diagnosed with stage 4 glioblastoma. Surgery was certain to leave her unable to communicate or get out of bed. She decided quality over quantity. They did a biopsy but she awoke during the procedure. Was horrible but she finally woke up. Went through tramador chemo, radiation and passed away peacefully 5 months later. 🙁 I miss her every second of every day. But I am greatful I was able to tenderly care for her! I wouldn’t want that any other way for her. But that is not for everyone. Towards the end was very difficult and not graceful. That’s enough for now. Will discuss more details on a later post.

Much love
Dawn

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Welcome @rjm62. I’m glad you joined us here in the caregivers group. I believe there are a great number of Connect members who find themselves straddling the world of patient and caregiver simultaneously. Feel free to start a new topic relevant to your caregiver situation or experience any time: https://connect.mayoclinic.org/group/caregivers/

I also want to direct you to the Heart & Blood Health group http://mayocl.in/1XWwPwo We have a great group of knowledgeable members sharing there on a variety of cardiac conditions, including aneurysms. Here are a few discussions to get you started:
– Thoracic aortic aneurysm http://mayocl.in/2bC9oIY
– Infrarenal Aortic Aneurysm Repair Now another? http://mayocl.in/2bVPzKz

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