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May 2012 Part I "The Road to Hospice"

I thought this would be a short essay, like my previous posts.  I was wrong, this is a long story.

 Wayne and I married young-we grew up together!  Wayne used to be the most energetic person I ever met. He ran his own business, had many hobbies; sometimes I felt I had to wait in line to talk to him!  We have two grown daughters.  We are definitely a team. Well, the leader of our team is definitely slowing down.

May 1, 2012. Wayne, has been fighting prostate cancer since 2003 and is getting weaker.Mets to bone and brain diagnosed in 2010 and 2011.  He's already had 2 brain surgeries, and partial and whole brain radiation. He's been commenting that "this is really hard..."  The bone pain is getting almost impossible to control. He appetite is really slowing down. 

May 2, 2012.  Wayne spends most his time in his recliner watching westerns, "The Price is Right", "Pawn Stars" and talking on the phone with friends. I work once a week and our daughter, Jessica stays with Wayne for those 4 hours.  Since March he's been selling raffle tickets to the "Ray of Hope Foundation's" spring fundraiser for the celebrity signed guitar which he donated to the event.  He's actually able to keep all the money straight.  He's looking forward to going to the fundraiser which is an hour drive from our house. Our good friends are transporting us. We've decided to take the wheel chair. Wayne has actually never used his wheel chair outside of the hospital. He uses a walker these days. But it’s a struggle, and I worry that he could lose his balance. He's getting weaker every day. 

 May 3, 2012. My friend Karyn is a nurse. She asks if I’ve inquired about a hospital bed for Wayne. I listen. I think maybe a hospital bed would be a good idea. 

May 4, 2012. We attend the fundraiser.  Wayne never leaves his wheel chair. Family and friends accompany us. Our younger daughter, Amanda is with us. Wayne donates the guitar and the raffle proceeds. Wayne gets a standing ovation from the crowd.  Wayne is very tired. We leave the fundraiser right after the guitar auction. Wayne is exhausted. I have no conscious idea that Wayne has about 2 weeks to live.

May 5, 2012. Wayne is having a hard time getting around. He's in a lot of pain. Wayne has always had an amazing attitude and fortitude in dealing with his illness. It's now getting to be so much for him. He is getting a little irritable.  We have a visit with the oncologist in 4 days, I wonder how his blood platelets are doing. He usually gets very weak and short-tempered when they are low. He's been having blood transfusions at least every month for the past few months. His last chemo treatment was January 25. Ever since then, the oncologist, Dr. Slovin says she'd like to wait until he's stronger to give him more chemo. 

May 9, 2012.  We have our monthly visit with Wayne's oncologist at Memorial Sloan Kettering in NYC. How did I ever manage to get Wayne out of the car and into the office? He can barely walk a few steps. He is so weak. The trip into NYC tires us both out. I ask the nurses about hospice. I've heard that hospice's role is to give support and comfort. Wayne needs a blood transfusion so Wayne is at the clinic for hours. I run errands around NYC and get some fresh air. Later, Wayne and I are sitting on the edge of his hospital/clinic bed. We’re swinging our legs back and forth, playing with his ipad. We are happy together. There is hope that the transfusion will make him stronger as it has before. Then Dr. Slovin comes and visits Wayne in the clinic. She has heard that I was asking one of the nurses about hospice. She says, “Wayne you are not going anywhere anytime soon, but I think hospice would help you and Diane."  We smile, We think perhaps we have lots of time and will surprise the hospice people. Maybe there will be a miracle cure and Wayne will be fine...

Dr Slovin orders home hospice. This clinic that has been like a second home to us will become a distant memory. We don’t know it, but Wayne has 11 days to live.  

To Be Continued....  

 

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Comment by Patience on May 23, 2014 at 4:47pm
((((Hugs to you, Barbara!)))))). I'm so sorry for the reason we met, but I'm grateful that we did. Yes, we are never ready for them to leave us.
Comment by Barbie Doll on May 23, 2014 at 4:38pm

Read your second post first so I know the ending of this story:(  When we put Mark in Hospice I thought we had a lot of time but it was just 7 days.  It's so shocking when they leave us.  We are never ready for it to happen.  (((HUGS)))) my friend.

Comment by Patience on May 19, 2014 at 9:53pm
Thank-you, Dianne. You are exactly right! We relive those days to draw strength from what we were able to accomplish for our loved ones. The lessons we've learned in how to harness our strength will serve us well. Also, I am in awe of all you have done for for all of us through soaring spirits and camp widow. ((((Hugs))))
Comment by Dianne in Nevada on May 19, 2014 at 7:44pm

Bless you, Diane. Keep sharing.  I think it's important that we remember the details, that we relive those moments - as hard as it is to do that. I kept a CaringBridge journal during the 4-1/2 years my Vern fought multiple myeloma and I'm so glad I did. I find I've needed to go back to re-read parts of it on important dates. To feel it. To remember things that I didn't write down. To cry again for all he had to endure. But also to acknowledge all that I was able to give him during those hard years. Hospice surprised us, too, and it's humbling to read my posts in the days & weeks leading up to that decision and know that I just didn't know.

I'm almost 2 years ahead of you and Carrie. The week leading up to the anniversary of his death got me last September at the 3 year mark. But I think the recovery is faster as time progresses.  I can feel all of this and draw strength from that battle to face this new alone life of mine.  I hope you're both able to do that, too. Big hugs to you. 

Comment by MissingRKK on May 19, 2014 at 6:01pm

Hey Diane, I have to say I am not at my best right now. This month has been just plain hard. Haven't had such strong grief waves in a while. I hope June will be gentler. HUGS!!! Carrie

Comment by Patience on May 19, 2014 at 4:56pm

Thinking of you too, Mac!

And Thank-you, Carrie, Yes, 2 years went awfully fast... hope you are doing ok...

Comment by MissingRKK on May 19, 2014 at 2:05pm

Thinking of you, Diane. xxoo  

Our calendar is similar. Ron died on May 28th. How could 2 years go by so fast.

Comment by Mac on May 18, 2014 at 6:09am

(((Diane)))

Comment by Patience on May 17, 2014 at 7:46pm
Thank you Judy! Justin was blessed to have you too!
Comment by judy on May 17, 2014 at 7:06pm

Diane,

Thank you for sharing from your heart of your journal of your amazing Wayne!  I know this has to be gut wrenching hard to put out there.  I also kept a journal of Justin of his 2 months in the hospital in Miami.

Looking to read more ---- you are such a special person whom Wayne was so blessed to have in his life.

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