Meet fellow Caregivers - Introduce yourself

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Hello @colleenyoung and everyone! I am happy to introduce myself and I welcome this new caregivers forum with open arms and high hopes!

As a bit of background, my name is Scott and I was the primary caregiver for my wife during her 14 year journey with brain cancer. After a phenomenal fight, she passed away this past July 7th.

I agree with Colleen as she says caregiving is rewarding, demanding, and certainly can be extremely isolating. I also believe caregiving is a unique journey for each caregiver because each of their patient's illnesses and their journey is also unique. This said, I also wonderfully agree with Colleen that a group like this can be a true blessing to anyone living the life of a caregiver.

Sharing our experiences, needs, glories, frustrations, and questions here will be wonderful for any and all who choose, or are thrust, into a caregiving role.

I enjoy sharing about my caregiving jouney and answering questions about it.

My desire is to be honest and open about the realities of my caregiving journey.

Peace and strength to each and all

Hi - thank you for the invite. I'm new to the Mayo Clinic Connect and very curious to see how it all works - I used virtual communication a great deal during my work and appreciate the opportunity to cross geographic boundaries! I joined the Mayo Clinic Connect with the specific goal of exploring solutions to a physical problem my husband experiences each night -- he has profuse sweating on the upper right side of his body. None of our local specialists have been able to identify a cause or provide solutions... I'm hopeful someone may have ideas for us to try....

It is a great added benefit to be able to participate in this care giver group. My husband was diagnosed with dementia in the spring of 2014 -- I had noticed many changes before the actual diagnosis and was able to transition from my career into full-time care giver status by November of that year. With 30+ years together, it has been a blessing to be able to be here with him on this difficult journey. At the same time, I know that I have never faced as great or as many challenges on a daily basis. Each step has involved a tremendously steep learning curve -- I look forward to hearing from each of you and sharing my experiences.
Best regards

Coleen, thank you for the invitation! As a caregiver, the emotional up and down can be very stressful at time. Since my husband diagnosed with throat cancer in late June, life has not been the same. Although he has HPV positive throat cancer and is considered a curable cancer, the treatment journey will be difficult since radiation will impact his ability to eat and swallow. I am also very concerned about the long term side effect and his qualify of life. We have great relationship. This latest event gets us even closer. We just take it day by day.

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.

Thanks for the invitation. I look forward to giving this a try. I enjoyed reading each of your introductions. Caregiving is a challenging story to be a part of and you have my support and appreciation. So here's my situation:
I am 68 and my husband is 74. We are caregivers for my Mom who is 97 and has been with us since just after her 90th birthday. She is entering what appears to be late stage dementia (not Alzheimer's - probably fronto-temporal or possibly Lewy's Body Dementia (LBD). She seems to be reasonably happy and very healthy except for the increasing pace of the cognitive decline. My husband and I are blessed with good health and a home that accommodates her easily. Up to now, the biggest frustration has been accepting that incontinence is requiring more and more attention. I get up most nights when I hear her heading for the bathroom because if I don't, she will forget to change Depends, which means beginning her day and mine with a major clean-up operation while she wonders who made such a mess. I can usually find my humor and good nature, but have been known to snap at her when I get really tired after several nights of interrupted sleep. She is a sweetie, so I always feel incredible guilt after that. The other huge challenge is how to connect with her. When she was first with us, she continued to knit, even though she could no longer follow a pattern but could only knit "squares" (which sometimes weren't square, of course). She has always been quite intelligent, both mentally and emotionally, so she noticed the discrepancy and it was very frustrating to her and she finally quit. Then for awhile we would play Rummy together, with her own set of rules, designed to ensure that she won. That worked until it didn't and she no longer wants to play cards. For awhile she would also play Scrabble, as she has always been able to beat all four of her bright daughters at this, but she began to forget the rules and forget what she was doing and need help with words -- all of which we were willing to give -- but she has declined to play for the past 2 years. For awhile she would sit and sing hymns with me. That will still occasionally work, but she wears out very quickly. She seems to have given up on crossword puzzles and word search puzzles in the last few months. She still occasionally plays Solitaire. When I read to her, she falls asleep in her chair within minutes. When the TV is on, she dozes intermittently. Food is always interesting, but of course there are limits to how much I can use this as entertainment. This gives you a picture of Mom's life. It is painful to watch her daily decline. She was an outstanding surgery nurse for years and a really amazing single Mom after my Dad's death when I was 14. I so want to make her last years all they can be, but I get pretty frustrated with defeated attempts to engage her with Alzheimer's store jigsaw puzzles, adult coloring books, etc. She says she doesn't need to be entertained, and she refuses all invitations to go out unless I insist that she go to the hairdresser or nail salon. All her grandchildren and great grandchildren live in other states, so there's limited opportunity for her to enjoy them.
As for me, I have had a very rewarding career as a public speaker, consultant, and trainer in corporate America - mostly focused on teaching people how to better manage the people side of having an effective and engaging company. I had no intention of retiring -- but here I am. I miss my work very much and can still figure out how to do a few short-term projects and engagements, particularly if they are local. I worry that if Mom lives another 10 years (or even 5), I will have become completely outdated. My husband and I were hit hard by the 2008 recession and between that and its impact on the small business we had started, we lost most of our savings, so I do still need to bring in revenue and am increasingly worried about how much I will have the ongoing ability to do that. We are renting a room to a no-goodnik brother-in-law, but that is not going to be tenable for very long. He lies and steals while smiling and looking us in the eye. Not okay for very long. So it won't surprise you to learn that my blood pressure has risen and I'm exhausted an awful lot of the time. We are hoping to get VA Aid and Assistance which will provide 11 hours per week of respite care. That will help, yet honestly, it seems like such a little dent in the overwhelm.
My husband and I do still find time to go out to dinner or to a concert from time to time, but our tether is fairly short. My local sister covers a night or two so I can fly to California every few months to see my newest granddaughter (who is almost 7 months old and whom I now haven't seen for 3 of those months). I have a sister who helps as she can, but she owns her own business and has all the stress of that. So anyway, thanks for listening. I rarely talk this much about my situation and if nothing else, this has given me an opportunity to look more objectively at things and see that (1) I have a lot to be grateful for; and (2) there's a reason I'm tired. I try not to let all these other stressors take away from my relationship with Mom, but she can still tell when I'm stressed and then instead of just asking for any help she needs, tries to "not be any trouble" which is the last thing I want because my mind-reading skills are not well-developed. I don't know if I'm actually asking for help as much as just saying "thank you" for providing a place where I can perhaps be understood without being labeled a complainer or a martyr.

Hi @lindabf. Nice to make your electronic acquaintance! Several of your statements struck a common chord with my experiences.

First,I understand your feelings of guilt when you are not at the top of your caregiving game. Been there and it is tough to not feel guilty when you are exhausted. For the last 60 days of my wife's journey I was on an every two hours medicine regimen with her. 24 hours a day. In my experience it is impossible to be 'on' every moment. I, too, would snap when exhausted. We are each human and your feelings are real, but you don't deserve any self-imposed guilt trip over those moments.

I, too, am hoping and confident this community developes as an accepting and non-judgmental forum. Seeking understanding for the true realities of real caregiving is something I missed. It was 99% more common than not for me, too, to be seen as 'complaining', 'seeking attention', or 'looking for sympathy' when ever I spoke of the day-to-day realities of full time caregiving. I am glad I found this community. It will help me heal I am sure.

P. S. My mother-in-law had frontal temporal dementia. It is a demanding journey all its own.

Peace and strength.

Thanks for your encouragement. If I was waking up every 2 hours for 60 days, I'm quite sure I would have turned very unpleasant within a few days. What an ordeal! And what strength for you to stay with it. Blessings.

Hi, I'm Sandy. My hubby was diagnosed with a glioblastoma (brain cancer) that is the deadliest cancer. We had surgery, radiation and chemo. We are now on maintenance chemo. After the initial kick to the gut, I had 2 choices: Fight or
Flight. I chose to fight. After 45 years of marriage, how could I not? We are confident in our doctors but needed to take control ourselves. I've read everything I can get my hands on, which had led us to Duke Cancer Center for possible clinical trials. The tumors usually come back. So far, we've been blessed that it hasn't but, if it does, I believe Duke can help. The first thing I recommend is to get an accordion folder and keep copies of EVERYTHING, including
Dr notes, discharge summaries. The doctors have been surprised at how organized we are (everything is WE because it's our fight). I've even made sure I keep the dates of when chemo was/is and MRI dates, to include copies of the disks and reports. It's impossible for the patient to keep up with everything and to absorb everything. That's the job of the caregiver. It's a huge job but worth it when you love someone. The best advice I can give? Try to maintain a normal life and make sure the patient gets out and about, exercise etcetera. They can't be allowed to sit around, feeling sorry for themselves

Scott was your wife's brain cancer a glio? If so, the 14 years you fought gives me hope since the prognosis stinks.