Gwennaford's Journal

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Clown Lady
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Re: Gwennaford's Journal

Post by Clown Lady »

So sorry about you loss you were in all of our prayers in SA  we missed you.  Keep your faith and God will help you thru the times ahead.
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Gwennaford
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Re: Gwennaford's Journal

Post by Gwennaford »

I want to send many, many thanks to all my loving friends who checked on me during the past few months.  I flagged my journal page to alert me whenever someone posted here and those alerts were sent to my phone.  So through the days, I was reading and gaining comfort from your loving words, prayers, and virtual hugs. 

I have never shied away from sharing my experiences here, good and bad, so I want to recap what has happened the past few months. . .WARNING -- DO NOT READ THE REST OF THIS if you don't want to be sad.  It is very maudlin.

----------------------

Neil was in & out of hospital during Oct. & Nov.  Had all his right toes amputated the first of December, and seemed to bounce back quite dramatically.  Unfortunately, he suffered from lack of activity and the 6 weeks of non-weight-bearing recovery really set him back.  He went back in hospital first 2 weeks of Feb., transferred into rehab facility 2nd two weeks.  He benefited from good physical therapy and was able to transfer himself on and off the  bed, his chair, and the toilet.  I didn't think he was strong enough yet, but he begged and pleaded with me, "Please, Gwen, please LET me come home".  So, against my better judgment, I brought him home the first week of March. 

I desperately needed some help caring for him at home.  We had many bad experiences with the only local home health care agency covered by the insurance company, and since the only other alternative was private $$$ nursing (yeah, right), I caved to pressure to admit him to Hospice.  I regret this decision, probably more than any other we made during his entire illness.  While I understand their mandate is to make people comfortable until they die, I vehemently object to their narrow-minded way of accomplishing it.  They provided a hospital bed, home delivery of all the drugs they thought he needed to keep him (their version of) comfortable (unconscious and/or delusional), and a couple of storm troopers to bathe him three times a week.  These aides were unbelievable.  Assuming all patients are deaf and insensate, they yelled in his face, roughed him up, tore apart the sick room to suit themselves so I couldn't get around in my wheelchair, and left me with mountains of wet laundry every time.  They ignored me and my attempts to express our wishes. 

But worst of all, and I believe this cut his life short by possibly months, was the Hospice flat refusal to provide the help and equipment I needed to get him out of bed every day because they decided it wasn’t “safe”.  As long as he was able to balance and bear his weight on his legs, I was able to physically move him back and forth by myself.  But he still weighed 200 pounds, and I wasn’t able to exercise him enough by myself, so he continued to weaken during these critical two weeks of his recovery.  He begged, he cried, he screamed, he demanded to be allowed to move to a chair and/or bedside commode to give him some relief from the pain from constantly lying in the bed.  BUT – get this – Hospice regular team nurse and physical therapist were on vacation for the first two weeks and the second string assigned to fill in was incapable of making any proactive decisions regarding moving him from the bed.  They kept deferring the decision until, by the time the regulars returned; it was too late for him.  So, not only did they totally fail to provide comfort, they stripped him of dignity and ruined what could have been his chance for a much better quality of life during his final days.  Instead, he died in fear, pain and confusion.  The last three days, the only thing he could say was to cry out, “Gwen, HELP ME!”  I nursed him at home, essentially alone, until he died.

To be fair, I have to interject here that the kids helped as much as they possibly could.  Michelle drove up from Sarasota whenever she had a day off, and Kayce flew down from Tulsa for a week in February to help me with errands and paperwork.  Neil’s son Bob and his wife, Janice brought youngest son’s wife, Odessa, down from N. Carolina.  She worked like a wild woman shoulder-to-shoulder here with me the last three days of his life.

Neil was a very difficult, demanding patient and he persisted to the end in his belief that he DID NOT want to die, I was the only one he wanted to care for him.  That's how I knew he really didn't fully understand what was happening to him.  I don't believe he would have knowingly put me through that if he was in his right mind, especially since his alternative was a fast trip to Heaven!  The only way I managed to get through it was to finally realize that I needed to change my approach.  Instead of begging, pleading & demanding the help we needed, I FINALLY realized I needed to redirect my power and turn it ALL over to God.  Lindsey Roberts expressed it by saying, “Instead of crying in earthly anger/fear/panic/torment, I turned my crying into a battle cry to the Lord.”  (I Kings 18:21; Mt. 18:18-19; Romans 2:12).  Thankfully, the Lord honored my decision to give up my own efforts and turn it over to HIM.  He took over the battle for me, and gave us both some peace a few hours before the end.  Neil settled down and started resting better the last two nights.  I believe it was at that point that the Lord began to speak to Neil, and persuade him that his work was done, he did a good job, and he needed to let go of the fight, to let ME go -- to what the Lord has planned for me for the second half of my life. 

On our last night together, I fed him three ounces of a liquid nutritional supplement for dinner with an oral syringe.  He could barely swallow, so, I was trying different things, patting and jostling him to keep him awake and aware so he wouldn’t choke.  At one point, I was inspired to ask him if he would give me kisses.  He immediately puckered up his lips and gave me sweet vanilla-flavored smooches for a few minutes before he went to sleep.  Later that night before we went to bed, Odessa helped me clean him up, change his clothes and tuck him into bed with fresh linens.  I knew in my spirit that he was leaving.  I sat behind the head of his hospital bed, with my arms around his neck and my cheek resting on the top of his head.  After praying for peace and release for a while, I kissed him for the last time and turned out the lights.  He slept sweetly through the night and we found him in the same position, breathing shallowly, the next morning.  Within a few minutes he was gone.

So, that’s it for now. 

Loves to all, Gwen
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MsHeirloom
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Re: Gwennaford's Journal

Post by MsHeirloom »

Gwen- I am so sorry for your loss, and sorrier still for what you had to endure on that journey.  My heart is with you.  Pam
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crickadoodle
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Re: Gwennaford's Journal

Post by crickadoodle »

Oh, Gwen, what a battle you've been through.  You made it through victoriously and I know God will open doors for your future ministry.  He has something for you to do, or you wouldn't still be here -- that's how I always feel about myself.  Hope to meet you at next year's convention.
wendysgoodnews
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Re: Gwennaford's Journal

Post by wendysgoodnews »

Oh Gwen it made me cry to read your story.  The Lord was truely your strength during the hard times. 
We had almost the same story with my dad once hospice got involved.  Let God be your comfort as time heals all these area that have been bruised and hurt.
So happy to see you back here with all of us.  My love and prayers are still going out to you.
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Joyful Friend
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Re: Gwennaford's Journal

Post by Joyful Friend »

Gwen, A very touching story that people need to read--just because an organization is good in one area of the country does not mean they are good everywhere.  I found myself getting angry at Hospice that is there.  No way should people ever be mistreated.  Just think what could have happened if you had not been present.  Gwen, you are spiritually strong.  We are continuing to pray for new mercies every morning.  That prayer will be answered because it's a promise from God.  Look forward to your posts.  Love and prayers, Joyful Friend
Gwennaford
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Re: Gwennaford's Journal

Post by Gwennaford »

Well, I have to say I'm happier than people think I ought to be under the circumstances.  I've heard it said that I'm still in denial and the true impact hasn't hit me yet.  

Sometimes I think something IS wrong with me.  However, I stand on my two scriptures:

"Then he said to them, 'Go your way, eat the fat, drink the sweet, and send portions to those for whom nothing is prepared; for this day is holy to our Lord. Do not sorrow, for the joy of the Lord is your strength.' " -- Nehemiah 8:10 NKJ

and


Psalms Ch. 30:5; 11-12, "...weeping may remain for a night, but JOY comes in the morning...You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever."

-------------------

Psalm 30

1.I will exalt you, O Lord, for you lifted me out of the depths and did not let my enemies gloat over me.
2.O LORD my God, I called to you for help and you healed me.
3.O Lord, you brought me up from the grave; you spared me from going down into the pit.
4.Sing to the Lord, you saints of his; praise his holy name.
5.For his anger lasts only a moment, but his favor lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning.
6.When I felt secure, I said, "I will never be shaken."
7.O Lord, when you favored me, you made my mountain stand firm; but when you hid your face, I was dismayed.
8.To you, O Lord, I called; to the Lord I cried for mercy:
9."What gain is there in my destruction, in my going down into the pit? Will the dust praise you? Will it proclaim your faithfulness?
10.Hear, O Lord, and be merciful to me; O Lord, be my help."
11.You turned my wailing into dancing; you removed my sackcloth and clothed me with joy,
12.that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.
Last edited by Gwennaford on April 5th, 2010, 3:54 pm, edited 1 time in total.
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LovinLDL

Re: Gwennaford's Journal

Post by LovinLDL »

Thank you Gwen for posting.  The Lord used the scripture to help me get back to thankfulness today.

Blessings and Thanks,
Julie
CodingQueen
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Re: Gwennaford's Journal

Post by CodingQueen »

Oh Gwen,

That's horrible. No one deserves to be treated like that. I've heard others complain about Hospice in our area but I've never heard any details. I hope you'll make a formal complaint otherwise it will continue to happen to others. Hopefully, someone will listen to you.

*hug*
CQ
rodie
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Re: Gwennaford's Journal

Post by rodie »

Gwen,
It's not bad enough the things you've had to go through,but to have to deal with a bad hospice experience,when we expect hospice to take good and loving care of our loved ones in their last days. Please know you are in my thoughts and prayers.
Remember all the memories and those wonderful sweet vanilla flavored smooches
God Bless
Hugzzzz
Rodie
cameron
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Re: Gwennaford's Journal

Post by cameron »

Dear Gwenaford- by the thousands of views that you have on these boards, you are certainly loved. Many people are praying for you.  ck
Gwennaford
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Re: Gwennaford's Journal

Post by Gwennaford »

Wow, Cameron, I hadn't thought of it that way, but you are absolutely correct.  After the Lord, the beloved Lunchers here on this site are my main source of friendship, love, support, comfort, motivation, encouragement, but most especially -prayers. 

Welcome to Let's Do Lunch, Cameron!  I've been away for a few months and have a LOT of reading to do to catch up.  Care to tell me a little about yourself?
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LINDA RN
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Re: Gwennaford's Journal

Post by LINDA RN »

Blessings to you Gwen,
I understand where you are coming from as I have had a similar circumstance with hospice. No, you are not in denial. People who don't have themselves anchored on Jesus do not understand how you can stand firm in your commitment and beliefs when the storms of life hit. You are exactly where you are supposed to be. I am sorry you had to go through such a difficult time but you are being supported by the few us us here (in comparison) and a "great cloud of witnesses".
Linda
"And ye shall eat in plenty, and be satisfied, and praise the name of the LORD your God, that hath dealt wondrously with you: and my people shall never be ashamed. Joel 2:26

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Taste and see that the Lord is good...
patns
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Re: Gwennaford's Journal

Post by patns »

I think you are at peace because you know your husband has been released from his suffering and you were able to let him know he was loved in the final hours of his life. You know he is in a far better place.
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Gwennaford
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Re: Gwennaford's Journal

Post by Gwennaford »

What a cool thought, Linda.  That makes me feel little better.  Interestingly, the denial observation came from a lady at the church I was kicked out of.  Long story that I don't want to go into now.  

While I was going through it with Hospice, NOOOO body would believe me.  I thought I was some sort of alien monster and that it must be just ME that was having such problems, because EVERYone had such fantastically glowing reports about how marvelously wonderful their Hospice experience was.  I am SUPER grateful to be hearing from those of you who have written in support, indicating that I am not alone in my experience.  

Patns, I know you are right.  I do have peace about his passing.  He suffered for a long time and I am thrilled that he is resting in the arms of Jesus at last.  I would have traded places with him without hesitation.  But it seems like I'm being judged for being happy & getting on with my life instead of moping around, acting like a bereaved widow.  It just bugs me a little bit.  But, I guess the opinions of the unenlightened shouldn't bother me that much, compared to what I have already been through, right?
Last edited by Gwennaford on April 5th, 2010, 11:09 pm, edited 1 time in total.
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patns
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Re: Gwennaford's Journal

Post by patns »

Right! I think you will likely always miss him and the things that you did. But that is for your sake. For his sake you are happy that he is suffering no more. As you said you would have gladly traded places with him to spare him from what his life had become.

We had a similiar experience with my dad when he was dying years ago.Unfortunately far too many people know only too well what you both went through, but you had faith for each of you when he could no longer express his.

Pat
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witheraway1
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Re: Gwennaford's Journal

Post by witheraway1 »

GWEN,
What a love story, it's clear you have many good memories to cling too. I can feel your loss! But I can also see you have great comfort in your God. You have all these great wonderful people in your life, some I am sure you have never even met here to help you! These are amazing people on these boards I have never seen so many nice people! Know that we all care!    Wither
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CodingQueen
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Re: Gwennaford's Journal

Post by CodingQueen »

Gwennaford,

I wouldn't worry too much about what others think about you getting on with your life. You've known for some time now that it was inevitable and mentally you'd already prepared yourself for it. That's why you're able to deal with his passing so much easier. It would have been different had it been unexpected....like having healthy husband being killed by a drunk driver, etc. In that case, you'd probably be in shock right now and just going through the motions of daily living but not really living.

*hug*
CQ
Bethann
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Re: Gwennaford's Journal

Post by Bethann »

I saw such a difference in our grieving as a family comparing when my brother died from a car accident and my Father dying after being ill for 6 weeks. (With my Father God had given us the time to start grieving ahead of time.) The shock of my brother's accident was difficult though God's comfort and strength were there also but with my Father of course we grieved very much (but I know it may sound strange to some to say this) but we were also filled with such hope and thankfulness! So thankful for the gift we had in having a Godly Father and thankful for his Faith and that we knew he was in heaven. Still difficult and grieving but we couldn't help but be thankful .... both experiences (though difficult and many tears) were such validations of my Faith! The comfort of the Holy Spirit was so real!
Like the Bible says: We grieve but not likes those who have no hope!

I think this must be what you are experiencing also, Gwennaford!  :rose:
Thank you so much for sharing with us so openly!  :rose:
With appreciation and admiration and thankfulness for your Faith!

Love,
Bethann
Last edited by Bethann on April 6th, 2010, 12:37 pm, edited 1 time in total.
CodingQueen
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Re: Gwennaford's Journal

Post by CodingQueen »

Bethann,

I know exactly what you're saying. When my grandfather was dying it gave me plenty of time to deal with it. I loved him so much but he was suffering from stomach cancer and was in a lot of pain. I hated seeing him like that. He was always the one who kissed my boo boos and patched me up when I was little girl. I just wanted to patch him up and I knew Jesus could do it. That's why it made it so much easier for me to let him go.

Now, when one of my brothers and his two small children were killed by a drunk 15 year old kid at 8 o' clock in the morning while he was taking them to school was a different story. I had a very hard time dealing with that situation. And even worse, forgiving the kid that did it.

CQ
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