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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Brigid Monnin said...
24 days ago
My son died three days ago at the age of 31.
He was born prematurely and had autism with severe self-injurious behaviors, blindness, seizures, hydrocephalus and mild CP. He was placed in a residential school at age 14, due to the severity of his self-injury. He would bang his head on walls when he was not feeling well or when he was upset. He was verbal, but he couldn't communicate discomfort well. He later moved into a state residential facility, after not doing well in community group homes as an adult. He was banging his head last weekend and his staff placed a foam helmet on his head. This made him more determined to hit harder, since he wasn't getting the same effect from the hits. He hit so hard, it caused his brain to tear and he had two different types of brain bleeds. The damage was significant. We chose not to undergo surgery after the doctors told us that even after the drainage of blood, there would be significant rehab, pain, and not guarantee he would return to his baseline. We knew he would not tolerate any amount of pain. He was a happy joy in our lives. He was funny, loved music, had a job making dog biscuits and he could lighten anyone's mood with his smile. We just couldn't imagine his life in a skilled nursing home, where he would be sedated heavily so that he would not be self-injurious. We wanted him to live a longer life, but we thought it would be selfish to ask him to endure pain and suffering.
I am looking for support from any other parents who have had to make the heart wrenching decision to make their child a DNR and let them pass an untimely death. I am struggling to know if I did the right thing. I know I did, but I miss him so. I wish I had more time with him.
26 days ago
My heart is breaking. My brother is here in the hospital and tomorrow it will be a month that he has been in a coma. He turned 47 August 9th and a few days later he had open heart surgery. He went back in the hospital October 11th because infection was in the chest wound. On October 17th they had to do emergency surgery because right ventricle pulled loose and started bleeding. Then the very next day it started bleeding again.....very badly. He has never woke up. The doctors are telling us he has severe brain damage and he is on a trach and feeding tube. They want us to try letting them take him off the machines. I don’t want to. I blame myself for his condition because he is a bad non compliant diabetic. After his open heart surgery in August I went to his house to pick up some things for my mom (she is dying of lung cancer and they had shared a house until about 7 months ago because she is now unable to take care of herself) My brother and a nephew were living together and the house was filthy. I told them both they needed to get it cleaned, I even told my brother he couldn’t live there like that especially since he just had open heart surgery. I called my other sisters and told them how bad the house looked. I blame myself because I should have taken out of that house. Instead I left him and now he is dying.
about 1 month ago
My daughter at the age of 21 was diagnosed with breast cancer., She had a double mastectomy and was in remission for 4 years and then the cancer returned in her brain. Now shes 28 and got married this last May. She remembers nothing of her wedding and has gone down hill ever since. The drs gave her 8 months to live and I have been leaving my stressful job at 2-6 everyday to help out then go back to work after 6 to get my hours in. I have 5 kids total with one to graduate this year, 3 other boys who live on their own in the same town. They don't go visit and when they want something or need something they always call me and I do what i can. I don't have much left to give anyone with all the stress, exhaustion and sadness I feel.. Two weeks ago, my daughter lost her ability to ever walk again and needs help for everything and is embarrassed. Tonight my oldest son told me my priorities are all messed up for spending so much time with my daughter and not enough time with my granddaughter whos 3. I want to spend every second I can with my daughter while shes still here. Never once has my boys ever asked if I was ok or if I needed anything since my husband works out of the state. I try to keep a happy face while my heart is breaking. I don't know how to keep doing this.
An anonymous caregiver said...
about 1 month ago
I’m currently 7 months pregnant and living with my dying grandmother. They say she shouldn’t have even survived as long as she has and I’m really struggling with it. I’ve never had to deal with losing a loved one before and it’s been a lot harder than I even imagined it would be. I don’t feel as though I’m getting a lot of support from my husband .... his solution is to just “not think about it”. That’s a lot easier to say if it’s not your grandmother... nor is that helpful in any day. Does anyone have some coping strategies or tips on how to stop contemplating life and death all the time? Has anyone gone through a similar situation?
3 months ago
My Mother in-law passed away on September 17/2017 we have gone through the first part of the hard part the viewing and the Service now on September 22/2017 we take her to her final resting place and I know it will be the hardest for my husband and her grandson I want to thank all who gave help when I needed to vent the time I was taking care of her. Thank-you all so much
3 months ago
My dad passed August 14th, mom had a massive stroke August 31. She was DNR, DNI, no feeding tube, no artificial means. I had the doctors try a feeding tube, I had to. It gave no positive results so I had it removed after a week. I don't know how long we have. To lose them both so close is devastating, but I have emotionally shut down, I haven't even cried over daddy yet. I am struggling with removing the feeding tube even tho it was moms wish. Her pain is so great I cannot even hug her. Her heart and lungs seem strong, but physically she has lost alot of mobility, mentally she is almost completely disconnected, left eye blind, no ability to swallow. I'm lost - if anybody has experience with removing feeding tubes and what happens now as we are in Hospice care, please share. I know once I let my emotions come back I am going to crumble.
An anonymous caregiver said...
3 months ago
I was my moms caregiver for many years. She died 3 weeks ago. I never knew such heart ache.
Just me 72 said...
5 months ago
My Mom was diagnosed with cancer about a month ago. She went from living on her own, driving her own car and having her own life to living with me in a week's time. She originally said she wanted to try Chemo (3 weeks ago) and I told her she should stay with me during that time because she would need help. We never got that far. She went into Kidney failure and was released from the hospital with external drains to empty her kidneys. She now walks with a walker, I have to empty her bags, give her baths, dress her, etc. My husband and I take turns sleeping on the couch because she panics of if we leave the room for more than 10 minutes and we are all so sleep deprived! She no longer asks nicely she expects and demands. We received the sad news yesterday that her Cancer has spread to the point that she only has a couple months and Chemo would only give her a couple more so she chose hospice. I don't blame her. What I am overwhelmed by is it will be at my home! Hospice came today to start the process and it was so overwhelming! I'm scared about her dying here! I don't handle death well and the thought of it sent me into a panic attack! Everyone tells me what a wonderful person I am for caring for my Mom but I don't feel wonderful. I feel trapped! I know she wouldn't do well in a facility so I feel I have no choice but to have her at my place but all I want to do is run away! My husband couldn't be more wonderful and supportive but our lives have been taken away from us. All we do is work and care for my Mom. The only time we get to go out together is when my Mom's friend visits for a couple hours. Even then Mom gives us her list of While you are out pick me up this! I'm trying really hard to be the strong person she needs me to be but I'm so overwhelmed! I'm also an only child so it is just me and my Dad passed two years ago.
6 months ago
My father was recently moved to hospice care after several months in the hospital. I was out of the country for most of this, but I have returned and have been rotating daily shifts with my aunt to make sure he is not alone for long. It's already hard enough to deal with my aunt how is very emotionally fragile and forgets things all the time. What's worse is that her husband has been showing up lately. I have nothing against him, but my father hates this man. My father is awake for only about an hour a day, but I'm worried that if he wakes up when my aunts husband is here that he wil get very upset. I know my aunt needs a lot of support at this time, but I know my father would hate if he knew this man was here. Should I leave this alone since my father isn't awake enough to know? Is there a nice way to bring this up to my aunt without causing any kind of a rift after my father passes?
6 months ago
I fear that I am on borrowed time. I have been diagnosed with CHF and also kidney failure. Four years ago I had double knee replacement surgery which was not successful and have had major mobility problems ever since. I have to use a cane or a walker. For the past couple of years I have had severe fluid retention. It started in my feet and ankles and moved upwards. I have gained a considerable amount of weight and am on Torsemide. At one time I was on three different diuretics at once. But now the Torsemide doesn't seem to be working very well. I drink a lot of water, always have, but my urine output is a lot less than it should be. The shortness of breath is very troublesome. Some days its mild and other days it's almost unbearable to the point where I don't want to get out of my chair. I've had insomnia for at least five years and it is also getting worse. I can't sleep in my bed anymore due to breathing problems, so when I do sleep it's in my easy chair with my feet elevated on an ottoman. I am also cold all the time. I wear sweaters even in summer. With all this I am still functioning, or trying to. I sometimes cook elaborate meals that I serve to my boyfriend or my son and granddaughter. (I live alone.) I do my own laundry and wash dishes. I still drive, although I have stopped going grocery shopping and now order online for curbside pickup. Thank God for that service! I have a cleaning lady who takes care of the heavy stuff. I watched my 86-year-old sister go through this less than a year ago. She passed just before Christmas, so I know some of what to expect when my time comes. But I'm really scared. I'm not overly religious but I've been telling God I'm not ready to go yet. I'm sure He's having a good chuckle over that! I came on here to see if I could find what symptoms to expect and I found a whole lot more. I admire the courage of the people here. I just hope some of it rubs off on me. Thank you for listening.
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