Guest Lensiedel Posted June 23, 2005 Share Posted June 23, 2005 It's been almost a month since Bruce died, and I'm just starting to process what happened that last week. Two weeks before his death I contacted hospice and let them know he was ready to go with them. The nurse that covers our area (we live in a very small town) was out, so I decided to just wait a few days rather than have them send somebody we wouldn't be dealing with on a regular basis. The nurse called me back on a Friday and said their team would be meeting the following Tuesday and she'd call me back. On that Tuesday she called to tell me they wouldn't take him. He had an intrathecal infusion pump and they didn't have anyone on their staff that knew how to deal with it. I told them that his doctor was available 24 hours a day for problems or questions and she still said no. They just didn't want to deal with it. It's not that tough, I could take care of it myself if need be. I thought maybe it was the money, that was mentioned, so I talked to our insurance company. They agreed to split the cost of the meds off of the cost of hospice, so the entire hospice allotment could go for nursing care. The insurance co. even went to bat for us with that hospice and the other one available in this area. They still wouldn't take him. That afternoon he began to deteriorate. So it fell on me to make the decisions. I got him a hospital bed and continued to deal with the dr. regarding his meds. We switched him to liquids when possible because he was having trouble swallowing. The other pills I crushed up and mixed with juice. We did have a home health care nurse, but the meds and how much to give were up to me. I was following the dr.'s directions but they weren't controlling the pain. He increased the dosages, but I couldn't get him to tell me how much he could really tolerate. I was so afraid that if I gave him enough to control the pain I'd end up killing him. By 3 am Sunday the pain was so bad he was begging God to take him. I called the home health nurse and she wasn't any help. Finally he asked for an ambulance. He was hospitalized those last 2 days and they tried to control the pain. Valium every 1/2 hour and fentanyl every hour. He was still spasming in pain Tuesday morning, and finally he stopped doing that. The nurses didn't want to give him the pain meds because they couldn't see any outward sign of pain. I insisted they give him the meds and kept them on schedule. When he had his ileostomy in Feb. the surgeon told me that they couldn't control the pain even when he was out. They could tell from his BP and heart rate. So I know you can experience pain even if you can't react to it. I stayed at the hospital with him and was there when he finally let go. It wasn't what he had wanted though. He wanted to be at home. I know that at the end it probably didn't matter to him, but I'm still so angry about the way it went. We wanted hospice because pain control is what they do. I'm sorry to have gone on and on. I'm just starting to put this all together and I'm having a hard time with it. Thanks for listening. Wendy Quote Link to comment Share on other sites More sharing options...
Patkid Posted June 23, 2005 Share Posted June 23, 2005 God, Wendy, It is bad enough to lose your husband and to deal w/ all the sadness that goes w/ that event..........but to have these resentments is just too much to add on. Please let me hold some of this weight for a while for you....................I am so very sorry, and so very angry that you and Bruce were mistreated. You just did not deserve that and neither did he. I hope you can find some peace in knowing that he has no suffering or pain now..............I pray that your pain is lifted w/ time. Love and prayers Pat and Brian Quote Link to comment Share on other sites More sharing options...
Ry Posted June 23, 2005 Share Posted June 23, 2005 That's a horrible story, what a terrible experience for you both. I am so sorry you went through that. Maybe it would help to write a letter of complaint to the Board of Directors of the hospice. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted June 23, 2005 Share Posted June 23, 2005 I ditto Ry there. You should write the director and let them know. That should not have happened. I am just so shocked that you were treated like the by hospice. I always had the vision that they were like saviors coming to make the transistion so much more tolerable when the time came. I hope this is just an isolated incident. So sorry you went through all that pain. Maryanne Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted June 23, 2005 Share Posted June 23, 2005 Wendy, I'm so very sorry hospice let you down. I also think you should let the director know how you feel. It sounds like you are in a fairly rural area, but I wanted to mention that in many areas, there's more than one hospice organization. In our small state (RI) there are 3, and they all cover the entire state. So if one did not respond the way we needed, we would call another organization. It seems like hospices can vary greatly in services offered and philosophies of care. I'm generally not in favor of the gov't increasing their level of interference, but it looks like something should be done about standards for hospice, especially now that insurance will often pay for it. Quote Link to comment Share on other sites More sharing options...
Kel M Posted June 23, 2005 Share Posted June 23, 2005 Wendy, So sorry to learn of your loss and of the extra suffering you've had to endure as a result of not having hospice assistance. I would suggest that you consider taking your letter one step further. Perhaps you might also send a letter to your representative to the state legislature or congress (sorry I'm Canadian - not sure whether it would be a state or federal matter). Be sure to cc the hospice when you do and you might get a reaction. Take care. Kel Quote Link to comment Share on other sites More sharing options...
bunny Posted June 23, 2005 Share Posted June 23, 2005 wendy, I am so sorry you went through all of that hardship - as if losing him wasn't enough. I agee letters are in order, if that would help you process your anger. your state probably has an insurance department to write to. I know we'd all be happy to help with the drafting, or in any other way. my mom in pain is the single worst part of all of this. love and prayers to you, xoxo amie Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 23, 2005 Share Posted June 23, 2005 Wendy, Unfortunately it is too late to help you, but writing these letters may help the next family. It blows my mind that hospice indicated they were not equipped to work with any medical situation, they do have doctors that work with them. I'm sorry you had to go through this. Quote Link to comment Share on other sites More sharing options...
Guest Lensiedel Posted June 27, 2005 Share Posted June 27, 2005 Thank you all. I will write the letters, and hope that it will help someone else in the future. Wendy Quote Link to comment Share on other sites More sharing options...
Connie B Posted June 27, 2005 Share Posted June 27, 2005 Dear Wendy, Oh Good Lord, I am so sorry to read your story and to know that you and Bruce when through so much pain and suffering. ((((((((((WENDY))))))))))) I know your not in Minnesota, but if you were, I would suggest you write to OUR Attorney General Mike Hatch. I have worked with him in that past. But, how about if you write to your Attorney General and file a complaint with his/her office? Oh Wendy, my heart just aches for you. God I'm so very sorry! I have no words of comfort, but I am sadden that you had to deal with that. My sister lives up north and she had some nasty problems with Hospice in her area also, when her father-in-law was sick and dying. (4+ years ago) They pretty much did NOTHING! She's in Pine County. If there is anything I can do to help, please feel free to PM me, or call me. I will be more then happy to lend you a helping hand. Quote Link to comment Share on other sites More sharing options...
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