Decided on Hospice today:-(

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RE: Decided on Hospice today:-(

by LLSTL on Thu Feb 14, 2013 02:50 PM

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We also were just placed into hospice yesterday.  Happy Valentine's Day.

I too am very sad.  We have two girls 15 and 9.  I have cried every time we attend a senior night at one of the high school sporting events.  I have avoided two weddings because i know i can't make it through the ceremony without thinking how Ed will not be there to walk either of his girls down the aisle.

It breaks my heart.

I also wonder, how will we make it through hospice and still keep the girl's lives as normal as possible.  Such a tough ordeal.  I am not the greatest nurse in the world either.  There are very good reasons why I did not go into medicine but now here I find myself as the primary evening nurse.  Wow.  It is amazing what you can do when there is no choice.

I pray things go peacefully for Ed and his suffering is short.

I will pray for your family too.

:(

RE: Decided on Hospice today:-(

by NatmomwithGBM on Mon Feb 18, 2013 01:37 PM

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I am so sorry. What a horrible situation. I often wonder when I should start looking into palliative/hospice care for my mom. What a tough decision. I will pray for you and your family.

RE: Decided on Hospice today:-(

by bradsangel on Tue Feb 19, 2013 09:31 PM

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Dear Judy, 

  Its never an easy decision.  Early August we had to make the same decision for my fiance. It was the hardest but best decision we made.  The staff at our local hospice made us feel right at home and not only cared for Brad but us as well making sure we were rested and fed.  I feel your pain. I'm praying for you and your family in this difficult time.  May you find strength and courage in your husband and his fight against such a terrible disease. 

  Chantal 

RE: Decided on Hospice today:-(

by dbrinker on Wed Feb 20, 2013 12:34 AM

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On Feb 13, 2013 7:18 AM jdykllr wrote:

I talked my husband's Doctor head Nurse at University of Washington Medical today. She called & talked to me right after she got done talking to Dr. Mrugala. Dr. Mrugala said they have done all they could for Steve & there is NOTHING more they could do for him at this time. So we were advised to just put Steve in Hospice care and make him as comfortable & pain free right time & let this Tumor eventually takes his life. So we did a family conference phone call today & We came to a very difficult dicision as hard as it as to let go but at the same time, it is very very difficult to watch him suffer. We don't know what the Lord's plan is but many many people have prayed & looks like for some reason the Lord wants him to go home to heaven.I don't know what tomorrow brings but I know & believe that the Lord will take care of me & our 2 Boys. My heart is just soooo broken for our 2 young boys the fact that they are NOT going to have their Dad around to watch them graduate Highschool & things:-(

Hi Judy:

Please take good care of yourself, we never know what the Lord's plan is but I pray that they find answers for this disease soon.

I just know that you are a loving wife, Mother and caregiver and at this time your family will find great comfort in your strength.

God Bless

Diane

RE: Decided on Hospice today:-(

by CelPB on Wed Feb 20, 2013 05:08 PM

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Judy,

I'm very sorry to hear this news.  Your life and my life are very similar.

My husband fought this monster GBM for almost 18 months.  He made it 2.5 months after we stopped treatment.  He was also in the Navy but only for 6 years.  He got out and went back to school where we met.  We were married 20 years when he passed.  My daughter was 15, and my son was 11 when they lost their dad.  They're doing fine a year after.  They miss their dad and talk about him all the time, but they are not depressed.  The three of us and our dog are adjusting well to this new life. 

You and your boys are in my prayers.  Take care of yourself.

Celeste - Wife of Robert

RE: Decided on Hospice today:-(

by MiasMom on Sat Feb 23, 2013 05:11 AM

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So sorry about your husband's situation.

My story is similar to yours as my husband was under the care of the University of Washington for GBM.

When the time came, Hospice was very helpful to us. 

Best of wishes to you and your family.

RE: Decided on Hospice today:-(

by RobinMB on Sun Feb 24, 2013 04:06 AM

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There really isn't anything that I can say that will make you feel better at this time.  I know that.  But, I wanted to share something with you that I read on a hospice website.  It made a lot of sense to me.  It is about how to speak to a hospice patient when the patient is given drugs such as morphine.  Speak in very short, brief sentences.  For example, "You are the best husband."   Or, "Dad, loved vacations."  In that way, it is not too much information overload, and it is easier for the patient to respond.  I hope this helps in some small way!  Take care.  My heart goes out to you and your boys.

RE: Decided on Hospice today:-(

by flfrog on Sun Feb 24, 2013 07:56 PM

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I am so sorry you are at this point. My father passed away in March of 2010 with a GBM and was under hospice care for three months at an inpatient facility.  I with the help of my husband were his caregivers and I cherished those months under hospice of just focusing on him.  Not taking care of his daily needs, not researching another treatment or dealing with the logistics of doctor appointments.  I was able to just sit and hold his hand and focus on our relationship.  Dad was blind and often didn't know who I was or where he was during that time but I would just sit and talk.  Sometimes he'd bless me with a word or two but often he wouldn't open his eyes.

I am so sorry this awful disease has hurt your family but God knows what he is doing even though we don't understand it and we just have to trust in him to carry us through and eventually the peace will come.  Your family will be closer because of this so take comfort in your boys and be strong for them.

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