End of Life Support Group
The end-of-life online support group is here to help you through all the difficult decisions and emotions involved in the before and after of losing a loved one. Connect with others willing to listen, and get support for end-of-life challenges. Learn how others are coping with grief, and post your tips and advice too. Come as often as you need to share, vent, ask questions, and feel less alone.
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3 days ago
Quick Skim - I need advice about a terminal patient who isn't cooperating with his caregiver and seems hell bent on staying alive. If you can relate, please read on.
My 61 year old father was sent home with pain management only, no further cancer treatment, for stage IV lung cancer. This was almost a month ago. My mother had to arrange for hospice immediately because he never regained his balance or strength in his legs to stabilize himself and be mobile.
We have been expecting him to die any day now for the last 3 weeks. Two weeks ago he was worse off than he is now - glassy eyes, seeing the dead, not eating or drinking, and unable to get out of bed without assistance. In the last 10 days or so, he's sort of revived himself. He walks around, and he falls every single time. He is stubborn and refuses to stay in bed. Last night he was on a multitude of pain meds, a combination that any of us would be afraid of dying from, and he was up and around the house all night. He hid his straw from his drinking cup under the sink. He tried to go to the upstairs bedroom to sleep but said there were too many people up there making noise. He went back downstairs and said there were too many animals there. (There are no pets in the home, and the only living people would have been my mom and dad.) Additionally, he has mood swings that go from a somewhat somber acceptance of his mortality to a raging anger and denial of his fate.
Everything we've read about the signs of dying suggest that he should be gone by now. Has anyone else experienced this? It's just so painful because we know he hates being in this state. When he's aware of his state, he is embarrassed and scared. He would have preferred a more gentle death. But then again, this kind of fits his personality, this inability to succumb or be defeated.
What are our options at this point? If the pain meds don't keep him safely in his bed, my mother is going to have to move him to a facility, for her own safety and long-ignored sanity. Nobody wants that. Nobody. But what else can we do?
I thank you in advance for sharing your experiences to help others. I hope to be able to pay it forward some day.
4 days ago
My dad died on Sunday after two months of hospital visits, head operation and many things in between. We knew this was gonna happen. We took care of him at home for the last weeks of his life. We got to say goodbye and so did he. I still feel i could have been there for him more, say more things to him. I feel like he didnt knew how much I loved him. I feel like i lost a part of my soul. How do I beging to heal?
4 days ago
I mentioned hospice care to a friend of mine who is a nursing assistant. Surprisingly, she said that if my husband went on hospice that the only medication he'd receive is pain medicine for comfort. That they would not supply the cur meds he takes for his heart and water retention. When he and I went for the consultation with a hospice/palliative care doctor, I didn't get that understanding. I understood that they would administer pain meds as needed but that my husband would still take his other meds. For instance, he takes meds prescribed by a rheumatologist. If he went on hospice, would he automatically be forbidden from getting treated by the rhematologist or his cardiologist?
5 days ago
My beloved father is dying. No food or water, no IV support. It has been now 8 days and he is still with us. He cannot speak but he is conscious and his eyes are very expressive. All of his loved ones have said everything, we have all let him know that we will be OK and that he can go now. Can anyone think of anything else we can do to release him? He is 98 and had a wonderful, productive life right to the end.
7 days ago
I wish my husband would consent to hospice care. He hasn't quite been given the 6 month diagnosis but during the palliative care consultation that we had, the doctor said that he could qualify for it. I feel like they could give him something for his mood. He's very angry about what is happening to him and almost anything that I do that is not 100% what he wants how he wants it triggers such negativity. Unfortunately he doesn't believe in anti-depressants. He had some many years ago and didn't like how they made him feel Also, he prefers his privacy. He doesn't want anyone coming into our home on a regular basis. So I guess I'll just have to suffer through this until the end. My prayer is that when his end comes that it's not long and drawn out.
16 days ago
Hospice nurse was here today, he said it is only a matter of time before my husband passes. It looks like I will be spending the holidays alone. I dont have family only my husband,I dont want his sister around because she is contolling and we fight because she blames me for everything
22 days ago
My husband of 50 years had just been diagnosed with ALS. My mind had not stopped running and thinking about what is ahead for both of us. I feel he is tasking it better then I am, but I'm not sure he realizes what lies ahead of him. We both need help to deal with this. I need to know what resources are there for us.
about 1 month ago
My wife has run out of breast cancer treatment options. She doesn’t want any clinical trials or 2nd opinions right now.
She is waiting for a bed at a hospice.
I have a desperate need to be prepared for what is coming. If hospice is a place where you go to die, I need to know how do I deal with that, with the bad feelings I have.
Guilt is the biggest one right now.
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