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I Hate Hospice

Last night when Scott told me he couldn't breathe I told him what did he want me to do? He said to take him to the hospital. I wasn't convinced that the hospital could do anything for him so I talked him into going to bed. This morning when I woke up he was already up in the dining room sitting on the loveseat and I asked him how he was and he told me he still couldn't breathe. So, he wanted me to take him to the ER in town. I called an ambulance because I knew I couldn't get him to the door, let alone the car. When we got to the ER his o2 sat was only 61%. They put him on oxygen and gave him a nebulizer treatment STAT. He was soon at 100%. The ER Doctor came in and told me that if he is on Hospice they are not allowed to keep him as a patient. Otherwise, he would have to go off Hospice. I was faced with a decision I didn't want to make. Knowing Scott's favorite nurse was right around the corner, I decided to pay her a visit. In the meantime the doctor ordered some blood work and an EKG and I got a lecture from the ER nurse about how I should haved called Hospice instead of them. Did she not understand that Hospice is 2 hours away and the hospital is 5 minutes?? The doctor came back and said the bloodwork for a blot clot in his lungs was abnormal so he ordered a CT. (to rule out a pulmonary embolism) So, I went to talk to Lisa and she said that Hospice just has to release him for the time he is in the hospital so his insurance will pay the bill. And that he can re-up whenever he was discharged. She got this information on the phone to them, which the hospice nurse told me she was faxing some paperwork to the hospital for me to sign. When I got back to the ER the doctor came in and said there was no pulmonary embolism and that he was ok to go home with oxygen and nebulizer treatments. He felt it was COPD, because my husband is a smoker. So, the nurse came in and chewed my ass because I talked to Lisa which resulted in a lecture from the hospice nurse on what they were telling their patients. I felt like an ass. Before we left, Lisa came in to check on Scott. I told her I might have gotten her in trouble with the ER nurse and she said no problem. She is a carefree, no trouble kind of person. I love her. The ER nurse asked me how I was going to get him home. (I forgot to mention that she kept reminding me she had known him his whole life. Such is a small town) Since he couldn't walk I requested the ambulance to take him home. The ER nurse gave me his medication and told me she had informed Hospice of his immediate need for oxygen. I rushed home to prepare it for him. (chairs out of the way, rugs put up so he doesn't trip, table pulled out so he has enough room, etc.) The EMT's that brought him home were troubled by the fact that he had no oxygen here. So, while they waited, I called Hospice to ask when the oxygen would arrive. Their exact words to me were "Im not sure when the oxygen will arrive as we are not an emergency medical service, but I assure you it will be sometime today." I was pissed but calmly told the ambulance people it would be here sometime today. They waited for about 15 minutes and told me if I needed them to come back for some extra oxygen, they gladly would, just call them. They were so nice. Besides Lisa they were the only 2 people who had been nice all day. I received a phone call about an hour later from the oxygen company. They were in Effingham and would be here in an hour or so. It was an hour and a half. But, I wish I could strangle that Hospice nurse for the 2 and a half hours that my husband couldn't breathe. Let's see it if she likes that feeling. She was the one who told me they weren't an emergency service but yet wanted to chew my ass for not calling them first. I then find out that the only nurse my husband will tolerate at the house is on vacation this week. And, in light of what is happening, they are demanding to come in 2 - 3 times a week. Starting now - when Jane is on vacation. Scott is feeling like crap and that brings out his anger. This is not going to be good. But, I have tried to explain this to Hospice in the past and they never listen. They think they know best. On a different note, Scott is totally unable to walk today. I barely got him to the toilet and I couldn't get him to stand up again to pull his pants down. After 10 minutes of listening to his frustration with me and the whole thing, mission was finally accomplished. But, how was I ever going to get him up when he was done?? That was accomplished by his brother and nephew coming over and I asked them to do it. It took both of them. Scott is a big man at 6'2 and 240 pounds. He is double my weight and I know that I need more help with him. I don't know what I am going to do.
3 people sent you a prayer.
Earthgoddess52, Gems113 sent you a hug.
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I got the papers for home health and he has thus far refused to let me fill them out. But, have decided to do that now. Going to use the bathroom deal as my selling point. Thanks Barb, you have a way of making me feel better. Love, Darra
I agree with Barb, and I hate all the politics that you are having to go through, you have enough stress! Please don't hurt yourself. I remember when my dad was sick after his stroke, he was 230 and my poor mom was 110, until thay got proper help it was so hard! I wish they would help you better.I have no idea of what I can say to help you as I am in Canada and the system is different. I will keep you two in my prayers and hope and pray things get easier for you Darra Hugs Val Hugs Val
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(March 2, 1956 - May 9, 2011)

Vital Info


April 8, 2011

Robinson, Illinois 62454

September 20, 1960

May 9, 2011

Loved One is a Cancer Survivor/Fighter

Cancer Info

Nasopharyngeal Cancer

December 31, 2011

Stage 4

over 6.1

Grade 3


the pain and suffering

Cancer always wins

talk to me

yes - to brain

get a support group or talk to someone who has been through it

Pray and be close to God

Headaches, mental confusion, vision changes, incontinence, memory problems, weakness, paralysis, problems remembering the words for things



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