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?

@sallysue

Colleen, I updated my profile following your steps. It is there and OK. But somehow I am off the Careg Group posts. I just thought people were busy and recovering from the hurricanes like we are but I’m thinking I changed something wrong. Could you make sure that I get back on please? I checked that I want any post that mentions me and any post from Care Givers. That’s all. I don’t want these invites to seminars. Please help me and thank you.

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We did well. She has been sleeping in her chair since everyone left. I’ve been doing laundry,;-). She did great … just tired.

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@barbkaser

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

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Hello, we are new to this process but need to understand what the future looks like for us. August 25 how Rob had a seizure and was diagnosed with a stroke. At our request we pursued a second opinion only to find out she was in stage 4 glioblastoma. She is 79 years old and this is just devastated our family. My dad is also 79 it seems to be progressing rapidly to where walking or even standing is difficult. She’s become quiet but pondering the future. We tried to bring joy in each day but fear is overwhelming. We are in the process of starting the planning for radiation and chemo therapy but concerned with what a difference it will make and the consequences either way. Do you have any insight that can help us?

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@barbkaser

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

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Sorry but that should say my mom was diagnosed.

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@barbkaser

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

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Hello @lvmyfamly Nice to e-meet you here on Connect. Sorry to learn of your parents’ health challenges. I am Scott and I was the primary caregiver for my wife during her 14+ year war with brain cancer. I was also one of the secondary caregiver for my MIL who had dementia for over ten years.

I am not any kind of medical professional, rather I only speak here from the perspective of what I learned from my years of caregiving and observing my wife and MIL. My wife was diagnosed at age 49 so some of her choices, etc. might well be different than what choices and decisions a 79 year old might make. Here are a few of the insights I gained.

From the very beginning of our family’s journey with my wife we all signed the necessary HIPPA forms so the doctors could share directly with each of us. Over the years this was worth its weight in gold (especially to our adult children) as each of us got the story directly from the horse’s mouth and weren’t having the messages filtered in any manner. Second My wife was lucky that from day one her neuro-oncologist spoke, in great depth, about the differences between any suggested medical interventions that were curative, palliative, and even hospice care choices. They also were often brutally honest with us as to what we might come to expect. I will add here that there actually is not a tremendous amount known about how the brain totally functions and even less about it when it is ‘broken’ or diseased. Even the fact my wife was left-handed threw a wrench into their knowledge. So we also came to understand early on much of what we were being told was the medical professionals’ best guess based on the science of medicine, but also carried a bit of the art of medicine was well.

From day one my wife made the choice she wished to focus on having the best quality of life rather than quantity of life she could have. This was always her touchstone as she progressed through each battle with her disease. It also helped guide some of her doctors — or at least it did for those who listened to her. It greatly helped our family members and especially me.

She also undertook some immediate planning for those things she wanted to insure got done while she was able to properly think them through. POAs, medical directives, living will, estate planning, gifting certain items to certain people in her life, even designing her final wishes. Some people told me this was macabre, but in the end it saved our entire family much heartache at future times when heartache was truly overwhelming us.

I got a wonderful book from the library at Mayo Clinic. Half was from the patient’s perspective of having cancer. The other half was for the caregiver. This remains my most valuable book for we were both working from the same points of reference early on. I will look for the actual title if you are interested. It is older now, but we found it helpful.

Each person’s journey though chronic disease is unique. How they respond, how the disease attacks, how the doctors respond, how available caregiving options are, etc. Likewise the patient’s choices are very personal and so is their processing of what lays ahead for them and how they, and each of us, grieve.

Many, many, many folks here are on or have been on some kind of caregiving journey here and we are a strong, thick-skinned, group with strong shoulders, good listening skills, and lots of hints, tips, and hacks that can help along the way. Please feel free to ask any questions you have! You will find most of us have been through everything at least once. 🙂

Caregiving and chronic disease can be very isolating, which is why I initially sought out Connect and am happy I did! I am glad you are here!

Please let us know if you have any questions and again welcome to Connect!

Sorry for such a long response.

Strength, courage, and peace!

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@barbkaser

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

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So sorry to read about your Mom.  It will be difficult, but be there for her and your Dad.  We sometimes forget that the spouse needs love and understanding also. Give God your problems and he will help and guide you.  When I was diagnosed with cancer several years ago, I decided it was more than I could handle and I gave it to God and he did a wonderful job in keeping me from frustrations and tears.  I went through treatment, which wasn't much fun, but I did it.  Make it a happy time, not a sad one, because that will help both of your parents and you.  In other words don't sit on the pity pot because that doesn't help anyone.  When you have  questions don't hesitate to ask the oncology doctor or nurses, because they are always happy to give you answers.  Cancer isn't easy, but love your Mom and be there for your Dad.  Have a positive attitude.  God bless you and your parents.    

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Hi, everyone! I’m Shirleymac. I’ve been caring for my husband for over 6 years, after he had viral encephalitis with damage to the L temporal lobe. He did get better, going to classes offered by the American Stroke Foundation, but now is having a harder time coming up with words and is more like a child in stores. He picks everything up, it seems, and has opened things several times. Multiple tests his neurologist had done did not show any changes, but he is definitely worse. I’m frustrated!
Thanks for listening.

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Hi, my husband is 78 years old and was diagnosed with M.C.I. in 2006. Since then it has advanced to dementia and now in the last stage of Alzheimer’s. He is still with me at home and I am his sole caregiver. I want to be able to keep him at home until the end.

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Welcome @shirleymac and @camussen! I’m glad that you found the caregivers group on Connect. I invite you to explore the discussions. Here are a few places to read and perhaps join in with questions, tips or observations.

* Caring for someone with dementia / Alzheimer’s https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/
* Husband with early Alzheimers -question https://connect.mayoclinic.org/discussion/husband-with-early-alzheimers-question/

And today being Thanksgiving, you may want to read this lovely message from @IndianaScott
* Thanksgiving thanks to every caregiver! https://connect.mayoclinic.org/discussion/thanksgiving-thanks-to-every-caregiver/

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Hi everyone,
I'm pretty confident that everyone sharing in the Caregivers group has met @IndianaScott. Well, we just launched a new feature on Connect called Member Spotlights (https://connect.mayoclinic.org/newsfeed-post/connect-member-spotlights-shining-a-light-on-community-members/). The inaugural spotlight features Scott. I hope you'll find this interview as delightful as I did.

– Easing the Burdens of Caregivers: Meet @IndianaScott https://connect.mayoclinic.org/newsfeed-post/easing-the-burdens-of-caregivers-meet-indianascott/

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Hello Everyone, My name is Ben. I live in Los Angeles with my 98 year old mother. I'm her primary caregiver, although I have some hired help who assist me and an older brother who lives near San Francisco who flies down once every couple of months. Mom's health has been, overall pretty good. She has A-Fib and is too thin, but is able to eat and drink and carry a conversation. She can walk the length of the house with a walker and a great deal of assistance, but is unable to dress or bathe herself. We're a Chinese family– luckily, we live in an area where there are alot of Chinese restaurants and supermarkets nearby, and I've been able to hire help who can cook Chinese dishes and speak to her in Cantonese. I'm looking forward to joining this group and sharing experiences. I'm particularly interested in hearing from folks of different ethnic backgrounds and exploring cultural and generational factors in caregiving.

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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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@tingkun55

Hello Everyone, My name is Ben. I live in Los Angeles with my 98 year old mother. I'm her primary caregiver, although I have some hired help who assist me and an older brother who lives near San Francisco who flies down once every couple of months. Mom's health has been, overall pretty good. She has A-Fib and is too thin, but is able to eat and drink and carry a conversation. She can walk the length of the house with a walker and a great deal of assistance, but is unable to dress or bathe herself. We're a Chinese family– luckily, we live in an area where there are alot of Chinese restaurants and supermarkets nearby, and I've been able to hire help who can cook Chinese dishes and speak to her in Cantonese. I'm looking forward to joining this group and sharing experiences. I'm particularly interested in hearing from folks of different ethnic backgrounds and exploring cultural and generational factors in caregiving.

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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!

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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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@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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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!

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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, 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

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