Meet fellow Caregivers - Introduce yourself

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

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?

Sorry but that should say my mom was diagnosed.

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!

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.    

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.

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.

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/

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/

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.