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Poco

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PALS
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Or
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Bend
Dick passed away July 15th after one year of diagnosed. I want to share my experience with you so you never have to experience what I went thru. I fed Dick breakfast. He went down for a nap and I put his bi-bap on him. He wanted to get up and use the bathroom. He started coughing and then choking and couldn't stop. He told me he was going to die. He had green phlem a few days prior and I called hospice .No one checked on him. Also 5 days prior he told me his parents were here in our house to take care of him (they both died over 25 years ago) I thought that was a sign the end was near and called hospice and again no one came. You have to understand that hospice promised me he would die peacefully and they would keep monitoring him and eventually give him as much morphine as needed to keep him comfortable. They also told me now that he was on hospice that I was to call them and NOT 911. They made that very clear.... I went into a panic because Dick was turning blue and gray. I called hospice and got the answering service because it was a Saturday. A nurse woud call me back. I knew Dick did not want a vent or artificial breathing but I knew he did not want to die like this. I called my neighbors and they were there in 2 minutes. Thank God they took over everything. They called 911 and gave him CPR. The paramedics arrived & stabilized Dick & got him back breathing. The hospice nurse still was not there. It was horrific. We had the medical slip posted on the refrigerator. They asked if I wanted him to go to the hospital that I only had a few more minutes left to say goodbye otherwise. I didn't know what to do because Dick had said many times he just wants to die. I just stood there and didn't answer. They asked Dick if he wanted to go the hospital and he said yes. They took him and put him on a vent. They removed the vent and he was coherent, joking with the nurses and was able to say goodbye to all of his children and he passed peacefully the next morning.ONE WEEK LATER hospice called & wanted to come over & show me how to lift Dick up & also meet our new nurse replacing the one on vacation. I am so grateful to our neighbors & EMT's. There is no excuse for the above & I feel guilty for not being more assertive.CALL 911 & don't let hospice intimidate
you or let your loved one suffer needlessly like I did.
Phyl
 

Icanmanz

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Jul 14, 2007
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Tomball
Hi Phyl, I am sorry to hear what you and Dick went through. You know, Hospice told me the same thing. They told me not to call 911, even if I felt that my son needed assistance. Well, guess what? I called them anyway. There is no way in the world that I was going to let them tell me what to do. This was my son that needed help, and I called the people that I knew that would be here asap to assist my son. Then when Hospice came over later they asked me if the paramedics were called, and I said, "Yes, I called them!" They didn't say much. I am glad the hospital people got to help him before he passed. May he rest in peace.

Irma
 

shellshell

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Apr 11, 2007
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Reason
Loved one DX
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US
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Arkansas
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Scott
I am so sorry Phyl...

Phyl,

I am so sorry this happend to you and Dick. We had the same type of scenero with Hospice with my husbands mother, she was in a hospice facility and they had us move her becuase they told us she wasn't terminal (she had heart problems and diabetes (sp), well, we went thru moving her to a wonderful nursing home close to us and three weeks later, she died...not terminal huh....I guess we were a little bitter because we sent the director at the hospice location flowers that came from my mother-in-laws funeral...yeah, I've had to ask for forgiveness for that one....:oops:

Anyway, my dad has ALS and I refuse to listen to them tell us not to call 911, I will do what's in the best interest of my daddy, not their policies...

Much love your way and know that we are continuing to pray for you...

Love,
Michelle
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
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Alabama
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Mobile
Phyl

My Condolences to you. I am sorry you had to experience your Husband's misery at the hands of Hospice.

I know what you mean. My brother Timothy was on Hospice over the summer. Per our Doc's request. They also not to call 911 unless we called them first. Tim had fallen two times. The first time hospice returned my call right away. The second time, they were in no hurry. I was disgusted and called 911 anyway. So now I am getting a bill from the Ambulance co. I will call hospice and fight them on this. We had taken him off hospice about a month ago to get physical therapy because the Neuro and several others doc's. backed it up.
The other thing is, I was appalled when I received the statement from Medicare on what the Hospice was charging. We did not receive nearly what they charged. We had a worker come in and give him most of the time a sponge bath. (she was great and now is a friend) We might have gotten a nurse every two weeks, when they could make it. A Chaplain came once a month and I seen the Social Worker twice. The councelor came about one a month. It is so rediculous. If they give me a problem about this last bill. I will threaten to turn them in to the State.


Sorry for you loss, you did the best you could under such horrible circumstances!

Lorie:-D
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
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forked river
Dear Phyl

Hello Phyl, Just wanted you to know our thoughts and prayers are with you. What a terrible experience you had, life with ALS is difficult enough. Take care of yourself. Fondly, Beebe
 

CindyM

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Learn about ALS
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New England
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Anytown
Hi Phyl. I am so sorry about how your husband died. It was unnecessary and unfair and I hope you write to the Hospice board of directors to let them know what poor assistance you received. Our thoughts are with you in this time of grief. Cindy
 

hboyajian

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Messages
267
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Lost a loved one
Country
US
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Washington
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Vashon
Phyl, thank you for posting this. As painful as it must be to write about, it is an experience that can help other people think about what issues might come up in the end of life. It is important for PALS and CALS to know that you can be on temporary ventilation at the hospital to have that precious time to say goodbye to your family. You are not then obligated to choose the surgery for trach and vent, but you might have a moment to make that choice if you want to. My heart goes out to you for that very difficult experience and your grief in losing your husband. I am also thankful for good neighbors.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
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US
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Michigan
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Flint
Hi Phyl,

I am so sorry for your terrible loss. Also I find it very kind of you to share your story. It is a good thing to know. Thank you of thinking of others during your own time of grief. July was not that long ago. God Bless you. Sincerely, Peg
 

brooksea

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Sep 27, 2006
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HM
thank you so much Phyl for sharing your experience. I'm very sorry you had such a horrible situation with hospice.

This is very valuable information.

Sorry for your loss.
 
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