Meet fellow Caregivers - Introduce yourself

I have early onset Alzheimer's. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

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Thank you, thank you, for your support! You are the first person I have found who even acknowledges there is a problem. Most just get angry at my frustration.

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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.

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My husband has Waldenstroms cancer and just diagnosed with autonomic neuropathy. The doctor suspects he also has amoloidosis which sound terrible. We're waiting on blood and urine tests. Anyone know much about this?

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My heart, love & prayers go out to each and everyone of you. @martyc2016 @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993 @lindabf. Caregiving is the most difficult job you each will ever have. Your kindness and tender care will draw your hearts closer to the ones you love. They may not express it to you in words but know you are making a huge difference in their lives. 🙂

My mother the most kind, gental, amazing woman at 60 came to me with a headache ( which was uncommon). I begged her to see a doctor. Stubbornly she ignored me for 3 days. The 3rd day she was crying, I angerly told her "dang it mom, please go to the er or see a doctor!! You can either go willingly or you will end up in there by 911. 🙁 The next morning @ 2am came the call from my brother. "I think mom had a stroke, she can't get up or respond to me" I rush to the ER. The Doctor says " She has to go!! 3 tumors, she has to go now!!" They life flighted her to a bigger hospital. I drove very quickly to her. The doctor showed me the MRI. Over a hundred fingers rapped her brain and through it. Tumors grew at the end of 3. Diagnosed with stage 4 glioblastoma. Surgery was certain to leave her unable to communicate or get out of bed. She decided quality over quantity. They did a biopsy but she awoke during the procedure. Was horrible but she finally woke up. Went through tramador chemo, radiation and passed away peacefully 5 months later. 🙁 I miss her every second of every day. But I am greatful I was able to tenderly care for her! I wouldn't want that any other way for her. But that is not for everyone. Towards the end was very difficult and not graceful. That's enough for now. Will discuss more details on a later post.

Much love
Dawn

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My heart, love & prayers go out to each and everyone of you. @martyc2016 @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993 @lindabf. Caregiving is the most difficult job you each will ever have. Your kindness and tender care will draw your hearts closer to the ones you love. They may not express it to you in words but know you are making a huge difference in their lives. 🙂

My mother the most kind, gental, amazing woman at 60 came to me with a headache ( which was uncommon). I begged her to see a doctor. Stubbornly she ignored me for 3 days. The 3rd day she was crying, I angerly told her "dang it mom, please go to the er or see a doctor!! You can either go willingly or you will end up in there by 911. 🙁 The next morning @ 2am came the call from my brother. "I think mom had a stroke, she can't get up or respond to me" I rush to the ER. The Doctor says " She has to go!! 3 tumors, she has to go now!!" They life flighted her to a bigger hospital. I drove very quickly to her. The doctor showed me the MRI. Over a hundred fingers rapped her brain and through it. Tumors grew at the end of 3. Diagnosed with stage 4 glioblastoma. Surgery was certain to leave her unable to communicate or get out of bed. She decided quality over quantity. They did a biopsy but she awoke during the procedure. Was horrible but she finally woke up. Went through tramador chemo, radiation and passed away peacefully 5 months later. 🙁 I miss her every second of every day. But I am greatful I was able to tenderly care for her! I wouldn't want that any other way for her. But that is not for everyone. Towards the end was very difficult and not graceful. That's enough for now. Will discuss more details on a later post.

Much love
Dawn

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