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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6 days ago
My mom has always been a very dedicated and strong Christian. She made her wishes for end of life care known to all of us. No artificial anything. No tube feedings, no vent, no car , no anything. I am her oldest daughter, a retired (disabled) nurse and she lives with me. Just me and her.
Between the dementia and the copd. Sometimes I feel as though I am losing it.
Rock monster said...
8 days ago
My Father in law has a severe traumatic brain injury caused by a fall and my partner (his son) is in complete denial. The doctors have pretty much said he is dying but not directly and my partner has agreed to a DNR but thinks it won't be necessary because he hopes his father will wake up. His father is elderly, had heart failure, diabetes and is completely unresponsive to all stimuli. How can I help him accept that his father is dying without devastating him?
A fellow caregiver said...
26 days ago
My first post. I have been giving care to my mom for 6 years and we have lived together for 13. We are like best friends. Mom is 92 and sassy and sharp as a tack. Two weeks ago we went to lunch and now last Thursday she is a hospice patient at home. She kept getting UTIs and she would bounce back but the last one just was too much. Severe vascular dementia kicked in. Now I am sitting at my mothers bedside, she is pretty much sleeping all the time now. I talk to her and try to tell her how much I love her, I limit my bedside visits to about 10 minutes at a time. I cry a lot, I don't cry, and then I cry some more. But most of the time I talk about us, my dad (deceased) and I and how much I love her. I read I should tell my mom that I will be okay when she leaves me. This is very difficult to do but I do it. I do have an aide that comes by mon-fri to help me get mom comfortable and help with any sponge bath. I am responsible for her medications, now she is really only receiving morphine. I feel like I am drugging up my mom but I know it is necessary. Thank you for the time this let me write instead of cry.
An anonymous caregiver said...
about 1 month ago
My mother is dying. She was diagnosed with a terminal illness nearly ten years ago. She has been abusive to me nearly all my life.. I have managed to get a lot of counseling and despite many attempts (all initiated by me) to heal the relationship, I have not been able to do so. We have lived near her and have had a lot of, daily even, contact with her. We moved to live near her when we discovered she was being taken advantage of by thieves.. This is when things got really bad. She blamed me for, well, I don't really know why she treated me the way she did. It was a continuation of her life-long pattern of making me the scapegoat for all her problems. My brother, who ignored those taking advantage of her, made an appearance and between the two of them, I have suddenly become worthless again. My mom has taken a turn for the worse and apparently has hospice care. I'm largely unaware as no one feels the need to answer my questions. My brother has POA and ignores my requests for information. However, he now feels that I should come help and see our mother before she dies. He has been very cruel. I have had a lot of therapy. I have dealt with my grief. The grief of losing my mother to her own cruel mind, years ago. I have been dealing with grief over her impending death for the nearly ten years since her diganosis. I came to terms with the reality of our relationship and I have sought help and even acted to make peace. I do not care to see her on her death bed. My brother tells me I am being selfish. We have never had a meaningful conversation in our lives and he does not know me, nor is he informed of her abusiveness. Thank goodness for my wife who is very aware and has been instrumental in my healing process. My mother is largely incoherent and even when she was, just days ago, she did not and has not asked to see me. I feel strongly that my visit would do very little for her, but could be very damanging to me. Am I wrong? Am I being a brat? I don't believe so. I see so many people on this site who are judgemental about this time. I have always been so careful to be accepting of others when it comes to these situations and I'm shocked to be under such criticism myself. I wish my choices to do what I feel is best for me, could be respected. The time to make amends has passed. I truly feel that she does not want me there for any good reason. My presence could cause me more pain and could be aggitating to her as well. I don't see or feel any good coming from it.
about 1 month 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.
about 1 month 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?
about 1 month 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?
about 1 month 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.
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