I was lucky enough to stumble onto this site yesterday. After reading a few posts, I know I'm in the right place. My IS was diagnosed with pancreatic cancer 15 months ago. Considering the surgeon was unable to remove the tumor after 7 hours of surgery a year ago, I know we have been lucky to have had this much time with him.
He is now at home on hospice care. I work full time, but I'm close enough that I can come home to give him lunch every day. I've begun using vacation time and taking half days a couple days a week so I can be with him more. He is very unsteady and increasingly confused, so I'm uncomfortable leaving him alone too long. Mornings aren't so bad because he tends to sleep and I wake him up when I call him to take his mid-morning meds
It's so hard to balance work, IS, and my most important job - mom to my 13yo son. Part of me would love to be able to stay home full time, but family leave wouldn't give me my full check and I need every dime I make. On the other hand, my work gives me time to focus on something else, and I find that so important to my sanity.
Anyway, it's nice to find a place where people understand.
Wishing everyone a peaceful weekend!
Susan
Hi From South Jersey
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Hi From South Jersey46yo WS; IS is 57 with Pancreatic Cancer, Asthma, Cardiomyopathy
Re: Hi From South JerseySusan, welcome to our group. You certainly have many things to balance. You will find our family here very supportive. I am glad you found us.
53 year old WS; IS with MS for 25 years of our 27 year marriage
Re: Hi From South JerseyWelcome Susan, I'm glad you've found us.
Your issues ring a common bell with many of us: balancing the needed job, raising a teenager, being there for your very sick IS. Not to mention the sad changes in family dynamics and the emotional upheaval. It is not a challenge for the faint of heart. You will not only find support here, but lots of good advise based on experience. I believe NJ has quite a few support groups, those are great if you can squeeze it into your schedule. Hope to see you often on the Forum! A big welcome hug, Claudia WS 70,IS 74, PPMS 25+ years.
Re: Hi From South JerseyHi Susan. We welcome you here with open arms. Sorry you need us, but I hope we can lighten your step. Adelle
IS passed on September 2, 2010 from complications of MSA.
Re: Hi From South JerseyWELCOME! I am new also. The bunch of replies I got from my first post did wonders for my spirit. Hope this helps yours too. Good luck with the balancing act.
WS 38 is learning to care for IS 35 with fibromyalgia, insomnia, ADD, diabetes, and lots of pain
Married 14 years
Re: Hi From South JerseyWelcome and {{{hugs}}}
Becky- WS: 35, multiple autoimmune issues, incl. hypothyroidism & gluten intolerance IS: 37, born w/ Spastic CP- legally blind & uses wheelchair; C7 vertebrae fused Aug 2007, cont'd back problems; Married since June 1998.
Re: Hi From South JerseyWelcome Susan. I am sure that you will find what each of us has when we came to this community ... supportive, understanding, caring souls who get what you are facing.
Together 35 years, the early ones uncomplicated. Now, on a journey unanticipated. No map, indeed no clear destination, just finding our way.
Re: Hi From South JerseySusan as you say it is tough to balance all we do, jobs, care, kids, sanity! But HERE we all get it! Glad you found us - the warmth and understanding here are wonderful.
((((caffeinenut)))) Be thankful the thornbushes have roses!
Deb and Larry 4-16-67 1-22-13 President Well Spouse Association - BECOME A SUPPORTING MEMBER so that we can serve others in need
Re: Hi From South JerseyWelcome, caffeinenut! So sorry that you need us, though.
We have support groups in south Jersey if you can steal some time away; it would help you a lot. In fact, there is a holiday party TONIGHT in Cherry Hill! Can you get out for a bit and meet some wonderful, understanding peers in person while eating and drinking and trying to be merry?? I'm serious -- check our website homepage for the info! Caregiver for 30+ years to C-4 quadriplegic shot during a robbery at age 21. He practices law full time; we have two 20-something sons.
Re: Hi From South JerseyWelcome, Susan. Please join us -- you'll find many helpful, understanding people. Bob
Married 44 years, Janet presented with brain tumor ten years later with two young kids, caregiver for 34 years, the last two 24/7. She died 9/30/10. robcurtross@hotmail.com
Re: Hi From South Jersey
I cannot believe this is about 3 minutes from my house and I can't get away tonight. I would love to have joined you! 46yo WS; IS is 57 with Pancreatic Cancer, Asthma, Cardiomyopathy
Re: Hi From South JerseyThank you everyone for the warm welcome. I can already tell I've "met" some very special new friends.
(((Gentle Hugs))) to all! Susan 46yo WS; IS is 57 with Pancreatic Cancer, Asthma, Cardiomyopathy
Re: Hi From South JerseyWelcome Susan, glad you found us. I grew up in your area - used to go to the Cherry Hill mall as a teen - wow brings back memories of long ago Christmases.
IS Dx MS 1990 - stroke 2007- triplegic - spcatheter - eyesight problems - limited use of rht hand, some cognitive deficit
“You don't have a soul. You ARE a soul. You have a body.” ― C. S. Lewis
Re: Hi From South JerseyHi Susan,
Welcome. You certainly do have a lot on your shoulders. You seemed so organized and have found a way to manage quite a load. I know you will find a lot of support here. We will be here with you through thick and thin. Maybe we will give you a chance to laugh along the way. Kat Married for 42 years. Caregiver for 13 yrs. IS died of COPD Feb. 10, 2011. Combat related disabled veteran.
Re: Hi From South JerseyWelcome, Susan!
Although I'm sad you've need of this place, I am glad you found our little online oasis. You will find friends here. Given what you must be dealing with, finding balance can be impossible. Especially when there's a very LARGE gorilla in the room....every room. And while hospice is usually a godsend, they can't be everything you need. May you find caring and support here. Again, welcome. *bigolehugz* tl IS disabled with chronic intractable pain of degenerative spinal issues resulting from fall in '96, fibromyalgia, obstructive/central sleep apnea, diabetes, chronic lymphocytic leukemia. Seeking serenity with no drama and no trauma.
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