Mentally retarded sister placed in hospice

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My sister was 56. She was placed in a state school after mother died, went through hospice, and she was thriving. On top of mental retardation she had COPD, pulmonary stenosis, diabetes, and was in renal failure. She was mobile for a few years and suddenly the doctor at the school changed and she was somehow in a wheelchair and unable to walk. Her health declined drastically within months. She had a feeding tube placed and was intubated twice. I was in the ICU with her at least twice a month for the last 8 months of her life. Five doctors finally decided it was time for hospice. The first visit to hospice only lasted 24 hours and she showed improvement so they sent her back to the school. By the following day she had no idea who I was. She was so out of it. They again sent her to ICU and the doctors said hospice was the only thing left. She was talkative for a few hours in hospice. They said she'd not be given food because her bowels weren't functioning. She kept telling me she was hungry. She had the IQ of a 5-year-old. I told them to give her something to sleep if they couldn't feed her. Within two days her fever was at 104. They iced her down and got it to normal. Oddly enough for 7 days off of her oxygen tank that she had been on for years and her oxygen levels were perfect. A hospice nurse explained to me that he was there when she was brought in and he wanted to be there when she left for Heaven. I thought nothing of it at the time, however, I finally left for the hotel around midnight and got the call 3 hours later that I needed to come on because it was time. I have a lot of guilt. Did I do the right thing? I listened to the doctors. But, where the doctors just tired of dealing with it and saw her a nonfunctioning person in society? Did the hospice nurse up the meds so he could be there? Did I aide in murdering my sister?


dtexas - I'm so sorry for what you're going through. I lost my eldest sister a few months ago after a similar roller coaster ride of hospitalizations, improvements, releases, relapses, etc. until her body was so weakened that she just couldn't recover from one more setback. There are so many what if's - what if I had insisted they do a certain test or investigate a certain symptom, etc. etc. It's so hard to accept somebody dying right before your eyes, on your watch as it were, and I'm sure it's even harder for you because your sister was disabled and could not advocate for herself.

It sounds to me like the doctors understood that your sister, like mine, just did not have another recovery in her, and they knew they could do nothing but make her more comfortable. It's very hard to accept that, I know. It was hard for me too but it's gradually becoming easier. One thing that helped me was seeing the death certificate that listed the multiple causes of death for my sister. It helped me realize that her body was just so damaged, they couldn't keep all of the problems at bay indefinitely.

No, you didn't aid in murdering your sister. No, they didn't just let her die when she could have been saved. It's very hard to accept that but hopefully you will find peace with it eventually. My thoughts are with you.
dtexas, my heartfelt sympathy to you and your family for the passing of her sister.

Your sister was on her final chapter whether she was on Hospice or not.... she would have passed on the same day. It is comforting to know that she wasn't in any pain during her transition, and that is what Hospice does, keep the patient comfortable.

Once a patient's stomach stop functioning, then other organs will slowly start stopping. There is no turning back, nothing that doctors can do, no magic potion to use. A patient will rally, sit up, be chatty, want to eat, and the next day be gone.

The morphine used by Hospice does NOT speed up a person's passing. Dosages are between 5-15mg and that amount will NOT cause a person to die [it would take 200mg to do that]
dtexas- I am the parent of a young man with autism - my son functions at about a 2-3 year old level. After my brother had a child, also diagnosed with autism I made the decision that my baby would be an only child. Since the condition has a genetic factor within my family - I knew I wouldn't be able to raise a second child with a disability and didn't want to take the risk. It was a decision I have come to greatly regret - my son could have had a sister too. Please don't carry the burden of guilt that isn't yours to shoulder. You loved your sister. I would have considered my son blessed to have had a sister such as you. I'm sorry for your loss.
Dtexas, I'm so sorry for your loss!

DTexas, I am so saddened by your story, you have been an Amazing Sister! It really does sound like she was battling illnesses that she just couldn't anymore. I had a simular experience with my own Dad, who died from Pneumonia, but his bowels and other organs had been shutting down for the 3 weeks prior, until he couldn't go on any further. It was nice of that Hospice Nurse to say he would be with her to the end. Those Hospice Nurses are sometimes so familiar with the dying process, that he may have had a sense that the end might be near. I lost my Mom while in a Hospice Hospital for the final 9 days of her life, and they were such a comfort to her and our family, and no, I don't believe they would ever increase medications for any reason, thats not their job, those meds are for comfort reasons only, not to hasten someones life.

My heart goes out to you and your family in the loss of both your Mom and your Sister. Take Care, but never blame yourself. You did everything right!
Thank you all so much. I assume it's normal to have guilt and question if we did the right thing. My mother went through hospice but I she was alert until the last ten minutes or so and I was at her side as she took her last breath. She looked peaceful. I'm having a lot of issues with being beside my sisters bed when her muscles relaxed, her eyes and mouth opened. I cannot get this out of my mind and it's been 5 months. While I know time will ease the pain and this all is party of life, you all know how hard it is. My mother was one that if a doctor said my sister was dying she'd load her up and go doctor to doctor until she heard differently. I tried to do what my mother would have done and wanted, but I ran out of doctors. I'm four hours away from the school she was placed in when mother died and I was there more than home due to ICU visits. I promised her a pony each time they said she wasn't going to make it and she somehow got better and went home. The last thing she said to me was that she wanted a pony. I know she wanted to live. I buried a stuffed pony with her though, so she finally got her pony. I could go on and on, but really want to thank each of you for your reply. God Bless you all.
I'm so sorry about the loss of your sister. Sadly, some conditions are not compatible with life. Nothing we can do can change that. I would try to find comfort in her being at peace and free from pain. It's clear that you and she were close and that you were such a wonderful advocate for her. I hope that will bring you comfort.

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