Meet fellow Caregivers - Introduce yourself

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.

Hello @tingkun55 Very nice to e-meet you here on Connect, Ben! I am Scott (aka IndianaScott) referred to by @kanaazpereira

I welcome you to Connect and hope you enjoy the interactions we all have here! For me the best part of Connect is exactly what you are seeking -- the sharing of experiences and having the opportunity to learn in such an inclusive, open environment.

I was my wife's primary caregiver for 14+ years while she fought her war with brain cancer. She was diagnosed at 49. It is great to hear your mother is able to do so much at 98! That is wonderful as is the support you have in your community and the quality hired help.

In our personal case we are a pretty average, Caucasian family. Living in a smaller community about an hour outside of Chicago. I am not sure it is a cultural difference, but in our case we basically had no support whatsoever from the community as well as our extended families. My wife's disease caused her to have many mental and emotional challenges, which cared most folks away from her. The burden for her care fell to our immediate family of myself and our two adult children (one who is half a continent away). I come from a small family (two siblings) and my wife had five. In our case none of these individuals were at all helpful in her care, beyond one of her brothers who did come from four states away when he could. I think a lot of caregiving support often is dependent on the geographic location of one's family too. When I grew up in Cleveland every one of our extended family lived within blocks of us. Now there is not a single relative in the entire metro area and the family is spread, literally, from the East Coast to the West Coast and from Minnesota to Florida. Certainly there is also a huge financial factor in the caregiving equation as well!

I look forward to reading more of your insights into, and questions regarding, caregiving and cultural differences. I find it very interesting! I also wish your Mom all the best in her health as well as sending you and every caregiver...

Strength, courage, and peace!

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

Hello @chesneydell1965 Nice to e-meet you here Tammi. My name is Scott and welcome to Connect. I am sorry to read of your husband's health condition. I am sure it is terribly challenging.

This is a great place for caregivers to meet other caregivers from around the country, around the world, and around your very state!

Your statement of feeling helpless and friendless is not surprising to me -- and most likely other caregivers as well. Caregiving for someone with a chronic disease can be extremely isolating and the overwhelming nature of running your life and adding all the demands of caregiving can easily cause feelings of helplessness. It certainly did in my case!

My wife was 49 when she was diagnosed with brain cancer and I was her primary caregiver for the 14+ years of her war with brain cancer. I came to Connect exactly because I was feeling isolated and overwhelmed with all the demands of life and caregiving. I am glad you are here!

One of the best parts of this caregiving discussion area is folks can vent, talk, ask questions, and seek support from others who are on the same journey or have made the same journey.

Do you have any help with your caregiving duties? Is there a certain part of caregiving that causes you the most discomfort or is it the feeling of being constantly overwhelmed?

Courage, strength, and peace!

Hi Tammi, I’m here too caring for my older sister with progressive dementia and had a hip replacement 10 weeks ago. I have felt overwhelmed too and sleeping in a recliner next to her bed is taking its toll. We can be friends who understand and help each other push through. All I can say is capitalize on what your husband can do for himself. Strength and courage and look for joy each day. SallySue

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?

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

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

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

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!