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?

@kanaazpereira

Welcome to Connect, Ben @tingkun55. I'm so glad you've joined this group, and I'm sure you'll receive a warm welcome from Mentor @IndianaScott and the other members as well. I particularly like your last statement about, "hearing from folks of different ethnic backgrounds and exploring cultural and generational factors in caregiving."
I'm the moderator for Connect groups this weekend, and coincidentally, I'm originally from India! Although I don't have any experience in caregiving, I do have extended family, who've been in the States for many years, and I'm very aware of the cultural differences in caregiving.

In India, caregiving is very different from formal caregiving here. You stay with your parents as a child, as a college student, and after employment. After marriage, the son stays with the parents, and the daughter-in-law moves in, adjusting to the in-laws. A daughter, conversely, moves out after marriage to her in-laws place.

As parents age and/or disability sets in, if they were living separately, they move in with the children or vice versa. Putting parents in an"old age home" is not acceptable, and looked upon with shame. Usually, the eldest son is the “privileged” person to look after the parents. This is not universal, but very typical in the Indian culture, and completely normal. Plus, with extremely limited alternative facilities or support systems, family members prefer to care for their loved ones at all stages of illness, at home.

In my opinion, those can be positive aspects of our culture. On the other hand, caregiving in india is not recognized as a skill or a profession. The family is supposed to take it in its stride, and more often than not, it is the women who have to give up their careers to do the caregiving at home. Discussions on topics such as caregiving costs are taboo.

However, with societal changes, there have been more demands for support to family caregivers; especially from families who have lived away from home, say in the States, and then return home. There is more more visibility for caregiving as people are understanding the complexity and stress of this role. That being said, I will mention that if it weren't for having my younger brother living in Bombay with our parents, along with his wife and kids, I would have probably tried my best to arrange for them to come here as they grow older.

@tingkun55, we look forward to getting to know you, and hearing more about your mother and her progress. Thanks for posting such an insightful topic.

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Thank you Kanaaz for your rich and detailed reply! I do think that in this era of globalization, when family members can be spread far and wide not only between states or countries but even by continents, it is hard to maintain caregiving customs and patterns which evolved over centuries. In the Indian context, what happens if the "privileged" eldest son is an engineer in Silicon Valley and the parents are in Mumbai? Does the responsibility then transfer to those who are living closer to the parents? Also, one would imagine that caregiving responsibilities would be to some extent apportioned to the amount of time individuals have available– i.e. if an adult child is single, presumably he/she would have more time to devote to the aging parents than siblings with families of their own. Finally, if it is assumed that a woman moves in with her in-laws after marriage, what degree of power and responsibility does she have in making decisions about taking care of her in-laws? Is she accorded the same status as the in-laws' own offspring?

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@chesneydell1965

hi everyone ,
my is tammi. the handle i use is my husband name.
im 47 years old. indiana im the sole care giver fir my husband who has sarcoidosis and now neuo sarcoidosis . im feeling helpless anf friendless

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Hi Tammi, My heart goes out to you. Can you describe what your support system is like? Do you have friends, neighbors or relatives who can help you out? Are you connected to a church or other religious organization? Do you have insurance, and if so, does it cover home health? Physical therapy? Mental health? Ben

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@chesneydell1965

hi everyone ,
my is tammi. the handle i use is my husband name.
im 47 years old. indiana im the sole care giver fir my husband who has sarcoidosis and now neuo sarcoidosis . im feeling helpless anf friendless

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hi tingkun55
No real support I have two grown children lives of their own they just don't slow down and help I also care for my mother who lives in the household she is a stroke victim and as for friends I used to have friends but you don't come around so much anymore you know their grandparents now and enjoying that no support

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@chesneydell1965

hi everyone ,
my is tammi. the handle i use is my husband name.
im 47 years old. indiana im the sole care giver fir my husband who has sarcoidosis and now neuo sarcoidosis . im feeling helpless anf friendless

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hi sallysue
I really don't have any support I also care for my mother who has a stroke victim I have two grown children and one grandchild that's three so I help babysit her as well yeah adult conversation is something I don't get much of my husband sometimes he is normal husband other times he's very angry and mental abusive on the same hand it's not him it's not who he is the disease but still hurtful all the same

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Dear Scott, Thank you for your warm greeting! I am always impressed by people who are able to reach out and give support to people they have never met before. As Blanche says in A STREETCAR NAMED DESIRE, "I have always depended on the kindness of strangers." I agree with you that our society is becoming more and more atomized, and that our sense of community has eroded. One has to look hard to find spaces where people share concern for one another. Kudos to you, Kanaaz and the rest of your colleagues for running this site!

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Hi, I’m mnina. I cared for my grandmother for the last year before she passed from Dementia and other complications. My husband I have cared for during the past 4 plus years, he is in palliative care with terminal cancer, he has almost passed 4 times in the past four years, with 2 of those times being just this past December. I’m an expat American from California, living in Australia. In the wee hours of the night, when I felt so alone and scared , I stumbled onto this incredible support system through the Mayo Clunic newsletter I received by email. IndianaScott was so helpful as were the others. I could say what I was feeling and didn’t feel so alone and guilty. They are hoping to set up something like this here by 2019. Unpaid Carers are worth 2 billion dollars to the government here, so they are investing in services. We do work! We work 24/7, unless we have respite. I don’t even like when I hear people say “ so how have you been out of work?”. That’s a fallacy that needs to be changed. I look forward to being a part of this community and thank you for being there. I wish you all peace and good self care, on this very difficult road, one day at a time.

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@mnina

Hi, I’m mnina. I cared for my grandmother for the last year before she passed from Dementia and other complications. My husband I have cared for during the past 4 plus years, he is in palliative care with terminal cancer, he has almost passed 4 times in the past four years, with 2 of those times being just this past December. I’m an expat American from California, living in Australia. In the wee hours of the night, when I felt so alone and scared , I stumbled onto this incredible support system through the Mayo Clunic newsletter I received by email. IndianaScott was so helpful as were the others. I could say what I was feeling and didn’t feel so alone and guilty. They are hoping to set up something like this here by 2019. Unpaid Carers are worth 2 billion dollars to the government here, so they are investing in services. We do work! We work 24/7, unless we have respite. I don’t even like when I hear people say “ so how have you been out of work?”. That’s a fallacy that needs to be changed. I look forward to being a part of this community and thank you for being there. I wish you all peace and good self care, on this very difficult road, one day at a time.

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Hello @mnina Thank you for the kind words about the value you are finding in Connect! It was the wee hours of the night when I found Connect as well! Truly amazing when you think of what technology has brought us from the days of sending airmail letters!

If I remember correctly (which is always iffy I know) @colleenyoung may have actually made a presentation in Oz to a group about Connect. Good luck with getting your Australian version up and running!

Wishing you continued strength, courage, and peace!

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@mnina

Hi, I’m mnina. I cared for my grandmother for the last year before she passed from Dementia and other complications. My husband I have cared for during the past 4 plus years, he is in palliative care with terminal cancer, he has almost passed 4 times in the past four years, with 2 of those times being just this past December. I’m an expat American from California, living in Australia. In the wee hours of the night, when I felt so alone and scared , I stumbled onto this incredible support system through the Mayo Clunic newsletter I received by email. IndianaScott was so helpful as were the others. I could say what I was feeling and didn’t feel so alone and guilty. They are hoping to set up something like this here by 2019. Unpaid Carers are worth 2 billion dollars to the government here, so they are investing in services. We do work! We work 24/7, unless we have respite. I don’t even like when I hear people say “ so how have you been out of work?”. That’s a fallacy that needs to be changed. I look forward to being a part of this community and thank you for being there. I wish you all peace and good self care, on this very difficult road, one day at a time.

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Your memory serves you well, Scott. I did give a presentation about Mayo Clinic Connect in Melbourne, Australia in 2016. There was great interest in the utility and importance of connection in patient and caregiver support, and how this can be provided in an online format. @mnina, the lucky thing about Connect is that it knows no borders. While many members are American, we also have members from Canada, India, UK, Europe, Africa, Australia, New Zealand, China, Philippines and many other places. These are just a few of the countries members have mentioned.

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@kanaazpereira

Welcome to Connect, Ben @tingkun55. I'm so glad you've joined this group, and I'm sure you'll receive a warm welcome from Mentor @IndianaScott and the other members as well. I particularly like your last statement about, "hearing from folks of different ethnic backgrounds and exploring cultural and generational factors in caregiving."
I'm the moderator for Connect groups this weekend, and coincidentally, I'm originally from India! Although I don't have any experience in caregiving, I do have extended family, who've been in the States for many years, and I'm very aware of the cultural differences in caregiving.

In India, caregiving is very different from formal caregiving here. You stay with your parents as a child, as a college student, and after employment. After marriage, the son stays with the parents, and the daughter-in-law moves in, adjusting to the in-laws. A daughter, conversely, moves out after marriage to her in-laws place.

As parents age and/or disability sets in, if they were living separately, they move in with the children or vice versa. Putting parents in an"old age home" is not acceptable, and looked upon with shame. Usually, the eldest son is the “privileged” person to look after the parents. This is not universal, but very typical in the Indian culture, and completely normal. Plus, with extremely limited alternative facilities or support systems, family members prefer to care for their loved ones at all stages of illness, at home.

In my opinion, those can be positive aspects of our culture. On the other hand, caregiving in india is not recognized as a skill or a profession. The family is supposed to take it in its stride, and more often than not, it is the women who have to give up their careers to do the caregiving at home. Discussions on topics such as caregiving costs are taboo.

However, with societal changes, there have been more demands for support to family caregivers; especially from families who have lived away from home, say in the States, and then return home. There is more more visibility for caregiving as people are understanding the complexity and stress of this role. That being said, I will mention that if it weren't for having my younger brother living in Bombay with our parents, along with his wife and kids, I would have probably tried my best to arrange for them to come here as they grow older.

@tingkun55, we look forward to getting to know you, and hearing more about your mother and her progress. Thanks for posting such an insightful topic.

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Ben @tingkun55, can you tell us more about the cultural expectations of caregiving in the Chinese community? Do you work outside the home as well and have to juggle your employer's understanding of family caregiving against the duties expected of you as a Chinese son?

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My significant other has pancreatic cancer. He has gotten so sick after the radiation treatmentsexter and chemo, which caused a heart Attack. We have chosen to stop treatment. 2 months ago. He now has bouts of lack of oxygen. Has anyone else experienced this.

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@patti1952

My significant other has pancreatic cancer. He has gotten so sick after the radiation treatmentsexter and chemo, which caused a heart Attack. We have chosen to stop treatment. 2 months ago. He now has bouts of lack of oxygen. Has anyone else experienced this.

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Bless your heart @patti1952, I can only imagine your stress. I was a caregiver to my husband for over 12 years with Multiple Myeloma and experienced so many ups and downs in the journey. Please know that you have friends on this site that understand your problems and send good wishes for an answer to your immediate problems.

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@patti1952

My significant other has pancreatic cancer. He has gotten so sick after the radiation treatmentsexter and chemo, which caused a heart Attack. We have chosen to stop treatment. 2 months ago. He now has bouts of lack of oxygen. Has anyone else experienced this.

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Welcome, Patti. It's tough to have to stop treatment. My father had to stop chemo for colorectal cancer because it was making him so ill. He chose quality over quantity. We were all comfortable with that choice.

You said your partner has "bouts of lack of oxygen". Do you know what the cause is and what symptom relief has been suggested for him?

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@patti1952

My significant other has pancreatic cancer. He has gotten so sick after the radiation treatmentsexter and chemo, which caused a heart Attack. We have chosen to stop treatment. 2 months ago. He now has bouts of lack of oxygen. Has anyone else experienced this.

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Hello @patti1952 Nice to e-meet you here on Connect. I am Scott and I was my wife's caregiver for 14+ years. During those years we encountered the issues of having to choose one treatment over another, forego certain treatments, as well as times when she needed oxygen. I took to wearing the pulsox gizmo around my neck so I could slip it on her finger at any time. My wife did not like the times she had to use oxygen and actually fought mightily against using the mask. Frequently she also did not even like the nasal tubes. What I often did, although I am not sure it would work with anyone else, was to let her fall asleep without the oxygen, leave it attached to the bedrail, and then gently place it in her nose once she fell asleep. The times she needed oxygen ranged from just the portion of one day to weeks. We never could identify a pattern or cause as it came and went!

Strength, courage, and peace!

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Hello!

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@eas369

Hi @eas369 and welcome to Connect's Caregivers group. You'll notice that I moved your message to the introduction thread of the group. I encourage you to read through the past messages and get to know others in the group.
In the meantime, we look forward to getting to know more about you too. Are you caring for a family member or friend? Can you tell us a bit more about you?

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