Joy’s piece on her experience caring for her mother as she died at home got a huge reaction. Our community members have had dramatically different experiences taking care of someone in their final hours. Here are some of the things they shared:
My father did t want to die in a hospital, so I being a nurse kept him at home a cared for him! The emotional toll it took on my was too much! I care for my mom with Alzheimer’s now and if she gets to ill at home I’m getting major help! Not going to go through that emotional turmoil by myself again! – Vickie K-H.
There’s no shame in finding her a home in a facility. – Tamara H-M.
Problem is that *my* best was inadequate. I believe it was better than a nursing home but I was exhausted emotionally, mentally, and physically. I did the best I could but it wasn’t good enough. My mother deserved so much better. – Elaine B.
I am so relieved to read all of your stories because it slightly relieves my guilt. My husband just passed away on Saturday. He was 64. Even though he was not quite bedridden prior to his death, he still needed constant tending to and often it was for emotional reasons more than deteriorating physical ones (which frustrated me to no end). My best was also inadequate, as you state, Elaine. I was constantly tired and short tempered. I wish that we could have just spent some time talking and sitting together but household tasks left undone loomed large and there was work to go to. I now feel guilt and pain and grief. There is no better alternative in my opinion. Just the lesser of two evils. – Tina K.
It’s work, even with help
My husband and I were her primary caregivers for the past six years right up until she took her last breath. She also had home hospice, and although they were very helpful, in no way did they replace everything my husband and I did for her. It was an exhausting, emotionally draining, raw experience, but also educational, loving, and perspective changing for me. My only regret is that I never slowed down to smell the roses. I was consumed by my “work” because there was always so much to do and no one else to do it. My aunt wanted to die at home, and I’m glad we made that happen for her. I only wish we had more time for us: me and her. – Christine S.
we just lost D’s mom a couple months ago. Our experience was similar. She actually had lung cancer and declined any treatment. The doc gave her 3 months she was gone in 2. We granted her wish cared for her at home. You do not know what you sign up for never prepared for watching her suffer so. It was hard beyond words to watch this little lady go through this. We had hospice but they only visited for a few minutes twice a week. It was all of our pleasure to care for her but we will never be the same after watching this. She was such a firecracker in her time with us. But she has left a legacy. And we are too. We miss her every day and cry often. I know you do, too. – Cindy G-S.
Your best at the time is your best
Our imagination will always make us think “there could have been more.” Give yourself time to grieve and go through all those emotions while speaking power and peace into your life. – Terri B.
I’ve concluded there is no good way to die and guilt is just something I have to live with. – Elaine B.
It’s a tough road to go. My dad died at home. It was the worst thing ever. Even if you do all you can, you feel helpless. Leave it to the hospice nurses. – Heather R.
It is such a personal decision. We kept my mother-in-law home with us and it was hard but it was a real gift. I have no regrets. I hope that all of you, regardless of what choice you made for care, will come to a place of peace with no regrets. We all do the best we can with the circumstances we’re in and with who we are at the time. – Connie C-G.
There are just so many things I wish I had remembered to do before they passed, not after. to this day I think of it and even though I don’t carry the quilt like I did before I still have some days where it still bothers me. it’s not that easy to shake the feelings off and you have to be a caregiver to understand. – Becky S.
Paperwork gets in the way
And don’t get me started on the forms! You have to have CEO capabilities to track them all, let alone figure out how to fill them in. They all ask for the same info, it should be one form, shared by all who are on the elders team…Except there is no team approach in place. – Jean O.
My partner passed at home and I created a wonderful sacred space and he didn’t want it any other way…When I realized he was passing I was prepared to play his favorite music. I dimmed the lights, lit candles, held his hand and told him I love him and gave him permission to go on. I called hospice but told them wait to come. I washed him with Castile soap and essential oil. I covered him with white cloth up to neck. Then hospice came. It was so sacred and intimate. – Marisa O.
My mother died in my home in my arms, surrounded and supported by her family and friends. She gave me a great gift in her passing, peace and love and forgiveness. And hospice was wonderful, caring and supportive. – Susan G-L.
He was kissed, we held his hands, and laid on the bed talking to him or just laid there quietly. Knowing he was not going to recover, we wanted peace for him. Relief from his discomfort. The joy of reuniting with his wife who he missed so much. I have no regrets in the way he passed. We all miss him and always will, but more importantly, he is at peace. – Sherri F-N.
There’s no such thing as being ready
I thought I was ready for this but found, you don’t just get ready. It hurts no matter what but, I’ll be ok. – Cheryle R-D.
You think at our age we have experienced just about every emotion, but we were not prepared. – Cindy G-S.
My mom passed away at home which is where she wanted to be. I took care of her with help from hospice. I was happy to help her because she was my mom and I loved her more than life. She seemed happy and content but it was emotionally hard. She passed away 7 months ago and I still have nightmares. I was with her when she passed away and it was the hardest moment of my life. Hospice was so good with us but I was always second guessing myself and wondering if I should be doing more. The whole experience was life changing-I know she went the way she wanted and was so peaceful when she took her last breath but I will always have that vision in my head-I miss her so much! – Jodie S.
Know the options
I guess it depends on location, we have many options where I live. I’ve worked in healthcare my whole life and stand behind the great care provided at every facility I’ve ever worked. Hospice is a wonderful resource as well, whether at home or at a facility. People don’t realize how much Hospice has to offer, including support for those left behind. – Corrina D.
Every family and every situation is different. At my small facility we provide skilled, ICF, hospice and respite care. Sometimes towards the end family becomes overwhelmed and their loved one comes to us for their final days, sometimes they are with us for a short time before going home for the end. Whatever is going on we welcome family and do our best to provide excellent care both to the patient and their families. Hospice is a wonderful resource that I can’t recommend enough. – Laura L-B.
There are some great hospice nurses and staff out there and I thank god for sending me my earthly angels. – Sharon N.
Most of our hospice clients choose to die at home, however, if caregiving becomes too great for the family we have two Hospice Houses available. Most everyone would like to die at home but having options is important so families can be families not caregivers. – Cheri J.
Most people don’t die in hospitals
If you are “dying,” aka have a terminal illness, unless death is imminent or you’re on life support, they don’t keep you in the hospital to die. You go home, to a hospice or a nursing facility. Hospitals don’t like to keep dying people, they are too busy trying to take care of the sick. – Corrina D.
We’ve had many patients come from the hospital as a last minute admit and die within hours because the hospital does not want them dying there. – Laura L-B.
Nursing facilities can be great
The skilled nursing facility where my guy (advanced Parkinson’s disease and dementia) spent his last year and his last days was fantastic. Truly a supportive and caring group of professionals. The Hospice team was outstanding. All cried with me when he passed away. I return often to visit the people who became family to us. – Pam T-N.
Kept my mom home with us for a couple years but it wasn’t best for her. She was too isolated and as time went on we just weren’t able to care for her. In the end she lived at an assisted living home so full of care and love. She died in that place with the help of Hospice. She actually called it home so she died at her home, an assisted living home. – Peggy F.
Just because it’s not at home, it doesn’t have to be a bad experience. The places I’ve worked go all out for a family in that situation….family are allowed to stay the night/spend as much time with their loved ones as they want, the ones who have no family are often with Hospice volunteers or staff that have grown attached to them. – Corrina D.
I’ll always regret her last weeks of life, at home, with me, unable to sleep and unable to love her because I was the full-time caregiver, just wishing she would die, when I loved her — and still love her — more than anyone I’ve ever loved or will love. – S.B.
My mom died in hospice. It was devastating, but I believe it was better for her and my family…When her doctor told her there was nothing else he could do we had to make a decision. When you have no platelets left in your blood, you can bleed from very part of your body. I didn’t think I could handle that and chose hospice. I now know it was the right decision. I was able to take he outside in her bed, feed her, kiss her and hold her hand as we told her it was okay to go into the light. I miss her, but I’m glad she is at peace and no longer in pain. – Michele G-H.
My mother with Alzheimer’s is living with me. I don’t think I could live here any more if she died in my home. – Gail T-A.
I helped with care for mom and dad, thankfully in facilities. And also my sister and a friend close enough to be called sister. I’m thankful there were trained people there to help through this horribly stressful time. Even with being in facilities a large part of the care falls on the designated caregiver. – Kathy G.
There’s no one right answer
I think it depends on the situation and the assistance received where the right place is. A difficult choice always. – Cathy P.
If we had better home care options, and integrated care in general, the last two years could be dignified for the elder, and wonderful for those left behind, no matter where they take place. – Jean O.
Truly, it’s good for some and not good for others. And it has absolutely NOTHING to do with how much you care. Some people care enough TO place their loved one in a nursing facility or Hospice house because they know there will be skilled people there every minute 24/7. Some people can’t financially afford to take off from their jobs, some don’t have enough family or enough family close. There’s many reasons family place their loved ones in skilled care facilities, but after 15 years of working in them….I can’t think of a time a family did it because they “didn’t care enough.” – Corrina D.
My father and I did home hospice for my mother. She had dementia and went in and out of knowing us. My father couldn’t be in the room when we knew it would be that night or the next day. I was alone with her when she died. I wasn’t leaving that room. I doubt she knew I was there holding her hand. I had a tattoo put on my leg surrounded by violets “One Soul From My First Breath to Your Last.” She was my best friend. My friend and her siblings had their mother in hospice in a hospital. I’m not sure which is better. They didn’t have to change diapers or wash a million sheets. But I knew my Mom was in the next room the whole time. Funny thing, she thought she was in a nursing facility when she didn’t recognize us. Other times she knew she was home. – Laura S.
You know what’s best
No one can provide you with the right answers for you…if you did what you did for her in LOVE it’s never wrong. – Susanne A.
I don’t think you can judge anyone else. What they are dying from and the health of other family members is an issue too. I loved my Dad to the ends of this earth, but him being home with Alzheimer’s and Mom also having many health problems, it wasn’t safe for anyone. We do what we have to, even if it breaks our hearts. – Kelly W-P.
My sister and I can look in the mirror and know we did the right thing for our mother. – Carolyn H.
It was difficult and tiring but I would do it all over again in a heartbeat. – Christine V-B.
Some quotes have been lightly edited for grammar or clarity. You can read the original responses here.