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I am completely alone in caring for my chronic ill fiance

By May 19, 2014 - 7:01pm

Hi..I really don't know how to start this off without sounding like I am whining(that is a luxury I lost about twenty years ago).

My name is Daren,I live in central wyoming with my beautiful (wife--technically fiance')..Michele..for the past twenty years.

I am the luckiest person alive,I met my own angel in 1995(august 25th)..and have never been more in love with her than now.

Michele is a 39 year old wonderful woman who has had a VERY hard go of it since she was 16. While skiing in 1988,she fell by the ski lifts,was taken to the local hospital..and just by coincidence among all of the (blood,bone x ray)tests..she was found to have a tumor just below her right knee(osteo sarcoma)..that badly needed to be removed.

She was transported to Denver metro for the operation..and (long story short)..the next few years from then included the terminal illness bone cancer,complete metastasizing to her left lung(active lung cancer)..where she had a triple lobectomy(removed three lower lobes of her l.lung)..and a removal of the entire femur and partial tibia(right leg)..with a titanium prosthesis installed inside the leg).

Michele endured the absolute max limit of radiation and chemo therapy..and also sustained severe damage to her renal system(kidney failure)..because of the cancer treatments.Since then,she has had MRSA..pneumonia at least a hundred,anemia,both lungs collapsing dozens of times,dialysis..severe infections..toxemia..hundreds of severe bronchitis cases,uremia and just really horrible medical problems that have always been very life threatening and dangerous for over 20 years now.

I met michele in 1995 and have been caring for her(mostly the past ten years intense)..and she amazes me every day..I am constantly humbled by her strength and perseverance. I am 47 now,and I carry her everywhere because we are simply too poor to afford an apartment that would accommodate any handicapped assistance. She has gotten to the point where she is just too weak to walk,and one year ago,she slipped and completely broke her upper tibia where it is fastened to the prosthesis..so she has been immobile since.

Along with the severe kidney failure(her average creatinine levels are 14 and up)..it is very difficult for her to heal..so I count myself even luckier because I get to hug her every day even more when i pick her up.She has had a VERY difficult time eating anything/much for a very long time because of her blood constantly toxic/very little kidney functions..violently nausea s for many years..

We live in a state where the weather is very inclement and the wind is constant and very strong..so we have been holding tight to each other for a very long time.

I grew up off the street since I was 15 back east,and have not had any family at all for over thirty years.so I have no one to talk to about this.

Michele has(had)a VERY loving family that helped her through her cancer hell back in 88-91)..but have all but completely abandoned her(and I)..for the past six years. Her father is a very successful industry general manager,and her sister is also successful..but for one reason or another..they wont even call her to ask how she is..EVER..Casper is very small..her mom and dad are within minutes away. It broke my heart the other day because she finally expressed to me how confused she is about their complete abandonment.

I am everything now(past few years) for mich..You name it..I do it..and I will for the rest of my life..the one thing I cant do is explain why her family has turned their backs to her when she needs them the most.

I am very used to having no one in my life for family for a very very long time..but after all of the pure hell this beautiful person has endured for decades..it is very frustrating to me as to why she should have it even harder for no reason.

Michele has always just been the sweetest..most caring person..and she just didn't do anything to have this happen.

Her and I have been to many many hospitals,Doctors offices,literally hundreds and hundreds of times aboard ambulances and operating rooms..and I just don't understand why we are here..at our darkest times..with no one around. When I hold her beautiful hand though,we fly far away together..we talk about other countries we will go to someday..I love to cook Italian food for her when she can eat..and one day we will go there. Michele is my angel..and I am the luckiest person alive.

Thank you for listening to me go on..I just don't have anyone to talk to about things anymore..I miss it.

Daren and Michele

By June 30, 2014 - 2:45pm

Hi Daren,

Thank you so much for sharing your story with us on EmpowHER! It is so touching and and you have provided such a great support system to Michele during her tough times. Your love and strength are inspiring and you are an incredible man for Michele to have in her life.

I found some resources on EmpowHER that may be of interest to you and could be a way to connect with others on our site going through similar situations. We have a caregiving page with some great information on this topic. There is also a discussion in this same group where community members who have experienced an ill spouse have shared their personal health stories: https://www.empowher.com/groups/affairs-heart/posts/your-spouse-chronically-ill-how-it-affecting-you

Thank you again for sharing your health story and please keep EmpowHER updated! We are here to support you and hope you come back whenever you need someone to talk to. :)

Erin

June 30, 2014 - 2:45pm
By June 30, 2014 - 11:23am

Hi, Daren. Thank you so much for sharing your story with us. Michele is so lucky to have had you there with her through all this. Your courage, commitment, and love are so inspiring and really beautiful. I'm sorry her family hasn't been able to offer support to you both; it's easy with all the more "superficial" things that consume us in daily life, to distance yourself from something when you feel there's nothing you can do to fix it and especially when it's someone you love that it so breaks your heart to see how they're suffering. Your strength in hanging in there is definitely the more rare, though I know that doesn't make the solitude any easier to bear. Keep up the fight, and please do come back to us, when you need to talk and get support.

Sharon

June 30, 2014 - 11:23am

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Spouses dealing with chronically ill spouses, without sexually or emotionally connections

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