I was stunned to hear that my Beloved Mother, Eleanor had a “mass in her lung”. She was amazing, calm, and just wanted it “taken care of”. I didn’t think I could handle it- I used to be very shy and timid, but I stepped up to the plate and became her “Care Partner. This entailed me staying at the Medical Center with her and being part of her Care team, she went to the Medical Treatments instead of the treatment coming to her. She was in an Ambulatory Center and we stayed in a private wing- like nice dorm rooms. I went with her to the Radiation treatments, was with her during the Chemo., all the tests, the Doctor’s checks, the Nurse checks- it was amazing.
I learned so much from those great, dedicated Doctors, Nurses- they are the Best, the Staff, other Patients.
I went on to work in the Corporate world for a bit- was not happy at all, had made a deal with the Lord that I would work anywhere, as long as my Mom was ok. I should have stayed with NYU Medical Center, but I have always doubted myself, as many Women do.
I went on to get downsized from a large Corporation at age 34, which was hard, but it gave me the opportunity to go on and be in the field I wanted to be in- work for a large Medical Institution. I went back to school at age 35, I had BA from age 20. I started temping at Sloan-Kettering Cancer Center to get an idea of what it would be like to work in that type of field and environment.
Some of the things I saw at Sloan-Kettering were extremely difficult, but also inspiring and I just wanted to give back to the Cancer Treatment world, as my Mom beat her Cancer at age 66.
I got my Medical Admin. Certificate after two years of going to classes every Sat. and temping for Sloan-Kettering M-F from 9-5.
My Mom- I have two other sisters, one my twin, went on to be diagnosed with Alzheimer’s and I was stunned.
I was angry- how could that happen to Her after she beat small cell lung CA.? Her illness tore our Family apart.
I became her major caregiver, I put aside my new career in Med. Admin. for my Mom at age 36. It is a true “horror show” to watch this disease ravage your Beloved Mom.
We as a Family ended up having to get more help, i.e. home health care, as our 76 year old Dad, Jerry got Prostate Cancer and had to retire. Believe it or not I was “ok” with that, I knew what I could try to do for him, I researched Treatment Plans and collaborated with the NCI and his Doctors and my two sisters to figure out what would be best for him. He ended up being “ok”- I so wished and prayed my Heart out for Dan that he would beat it, too.
We lost our Mom to the disease at age 77 in 1997 and then my Dad was already sick and I didn’t have time to mourn her, I was taking care of him. He had multiple. complex medical conditions, the major one being Heart Disease. He hung on for me and my twin sister, Janet. He was gone 14 mos. after our Mom. I was only 40 at the time, 39 when I lost my Mom.
After he passed away- I tried very hard to get my Career back, just to be told numerous times- that what I did for my Parents- Medical Case Management – Coordination -24/7 did not count- as I wasn’t payed for it.
It took years for me to get over them, about 4-5 in total. Even my two sisters and a professional Geriatric Care Manager would not let me out of being “IT” when it came to my Dad.
I remember leaving the Funeral home a few days after the Funeral, I had to go back and get the death Certificate and I felt like -”Now What”?
I got some temp jobs since he passed away and back into MSKCC as a temp, but haven’t been able to find my footing again.
I also lost all my inheritance money by a “Trusted” Fin. Advisor.
I am now sorry to say that I am now bankrupt, after years of covering my own Health Insurance- I took Balance transfers do do that, as I had a CA scare myself, thank God- nothing ever came of it- I was being monitored for a possible Cervical CA one day.
I am now on Medicaid Managed Care for my Health Insurance.
I am tired, ashamed of being unemployed- I got terminated from Sloan-Kettering about three years ago due to misuderstandings, just when I was being considered for a full time position there.
My twin sister screams at me all the time, tears me down, since she is paying most of the bills, etc.
I have in essence become her partial Caregiver since 11/99 due to some problems with her Kidney and last year a botched Cardiac Cath. almost killed her.
I have been in the “Caregiver- quasi- Nurse role” since I was about 22 and first offered to help take care of my Grandmother in Mass., who had broken her hip. A few years later, it was my Dad getting his first hip replaced her in NYC and I was 24, etc.
I gave my reproductive years to my Family, etc.
I never married, I wanted to twice, just didn’t happen.
Somedays I wonder why I am here and I pray alot and I listen to Dan’s music all the time for inspiration and hope.
I almost drowned this past Labor Day weekend and it was surreal.
Most of my Family has abandoned me, unless they need something from me or want to tell me someone is sick or has passed away.
I am now also trying to help a dear, elderly “Second Mom”, who at 81 is at home on hospice care for a spread of an old Cancer.
NYC is a very tough place to be and we have lost so many jobs here.
I live on Roosevelt Island, a very special part of my home city of NY,now ruined by overbuilding and Gentrification, etc. We have been here 27. 5 years and don’t know where to go now.
I was in Colorado back in 1991 and almost moved there- it was so gorgeous there and the whole time I was there touring, I was listening to Dan’s Music.
I just want to get this all out, as I know there are millions of us out there with similar stories who may feel lost, beat up, chastised and forgotten about.
I know what it is like to do this, i.e. -Caregiving- it is all encompassing as my Mom’s Neurologist said to me- ” Whom better to take care of a loved one than a loved one.”
Thank you for getting the new CD of Dan’s music out- I love it and treasure it.
Thank you for being such a strong, great Woman.
I also loved your interview with Fred Migliore.
I think of you often, every time I check out the “Living Legacy Site” to check on any new news there.
I am so saddened to see that Michael Botts passed away- I had seen Dan in Concert quite a few times and Michael was incredible.
All the best to a Namesake whom I consider a dear “friend”.
Sincerely,
Jean M.
Dear Jean,
How can I put into words how to thank you for this incredlible, comprehensive site dedicated to Caregivers, past, current and future.
I found the link on the Living Legacy site- I site I treasure looking at.
You are such an inspiration to me and millions of caregivers everywhere.
I am an ex- caregiver, like you, not as recent. I took care of my Mom with Alzheimer’s or “Lewy Body Dementia” and my Dad with Prostate Cancer and other complex multiple medical problems. They are in Heaven, 12 and 11 years respectively now.
My story is on here- I felt compelled to write it and put it here-under “jean m.”
I have been a ” Dan-Fan” since I was 17 and a college Freshman and first heard ” To the Morning” on our campus radio waking me up and I was stunned by the music and the voice.
I am still a Dan Fan at now age 51 and will be as long as I am alive.
I used to work for Sloan-Kettering Cancer Center, here in NYC, where I live. Cancer Care and Research is near and dear to my heart. My Mom had lung Cancer 23 years ago and beat it at NYU Medical Center here.
I was praying my heart out that Dan would win his battle and very saddened to hear of his passing on to the Lord.
I was writing messages to him and you on the Living Legacy site to get well and you were both in my prayers.
You are simply amazing in all the work you have done since your Beloved Husband, Dan left this world.
I cannot imagine the depths of your loss and grief.
You went on to get his CD out-”Love In Time”- which I got through Amazon and treasure.
You are doing this Blog- I have sent this Blog info. to more than one current Adult Family Caregiver I know.
I have pasted it on my Facebook profile, as people need to see what Caregivers go through- the struggle, the trying to get out lives back together after, etc.
We can get “forgotten” about in this Society, eventhough our numbers are growing.
I have to tell you – you have the same first two initials as me- Jean M.
Great name by the way-lol.
I also have to tell you, as you have heard thousands of times that Dan was truly the first “love of my life”, eventhough I never met him.
I would run to buy his albums when I was in College up in Albany, NY and when I first saw his portrait on “Souvenirs”- I was blown away, but more importantly, his music is what has Always touched my heart and been there with me through my life’s journey.
It is Dan’s music I listened to when I was in the Hospital with my Dad waiting for my Mom to make her journey to the Lord from her struggle with Alzheimer’s.
It is Dan’s music I listen to when I am scared, anxious, happy, can’t sleep, etc.
I think that his music need to be played more on radio stations- all the different styles and compositions he did- not just “Auld Lang Syne”, “Longer” and “Run for the Roses”, etc.
I also loved your interview with Fred Migliore- very informative, funny, insightful and touching.
You have a Beautiful speaking voice.
I read your piece here on developing pre-diabetes after Dan’s passing due to the stress of caregiving, I am glad to hear you are doing better.
The stressors of Caregiving are immense, physical, emotional and financial.
I cannot thank you enough for this site- It is simply wonderful- I know Dan is smiling down from you in Heaven.
Sincerely,
Jean M.
New York, NY
