My 90 year old mother was put on home hospice three weeks ago. They suspect COPD related congestive heart failure though she has refused to visit any doctors since COVID. She was actually still driving as recently as late October though she is now bedridden. Oxygen and lasix are controlling leg swelling and circulation issues. She's eating and drinking small amounts, mostly lucid though at times confused. (I'm very grateful that she does not have dementia!) In many was, I'm relieved that she is in hospice because she now has round the clock care and we are able to clean her house some whereas before, she had become a hoarder and her home was becoming a health hazard and unsafe. She has always been very tight-lipped and private and did not always tell my brother or I what was going on with her health wise nor did she ask for help when she should have. For now, her vital signs are stable but she is very weak. Yesterday I noticed that she was starting to look like what I might call an apparition of herself. It made be sad. This message board and website have been very helpful in understanding end of life care and hospice, especially hearing about the experiences of others who are or have been in this situation.
My mom was in hospice for 8 weeks (also with CHF) before she passed.
We had an incredibly good experience with hospice, albeit different from others because my mom was in while the pandemic was still raging, before vaccines were available. Therefore, we didn't have access to the volunteers, although we had several who would call regularly to check in on mom and on the rest of us. I also didn't need to have an aide come in, because my mom was still somewhat ambulatory until she was actively transitioning, so I was able to get her into the shower and such to get her washed up, get her to the table to eat, etc.
For my mom, anyway, it was a blessing for her to be able to control her own health, if you know what I mean. No more worry about fluid retention, revolving door hospital stays, etc. Actually, towards the end hospice removed the diuretics from her medicine regiment, and she stopped retaining fluid (??!!??).
I didn't have issues with non-communicative nurses, as some people here have complained about. They always called back and/or visited when I called them with an issue. They also gently told me towards the end that death was imminent; although I didn't pick up on the subtle hints until after she had passed. Comments like "you're going to have to start the morphine soon", or "you're getting close to when she's going to need you with her around the clock" were, I think, hints they were giving me. And they were right, because it wasn't a week after they started telling me these things that she passed.
They were also very communicative in the year after she passed; they called me or mailed something to me each month, checking in to see if we needed any grief support.
It was an incredible relief to me that I was able to control her pain/anxiety medication at the end, rather than have her dependent on hospital staff - not that I am criticizing hospital staff, I think they are wonderful. At the point that she was actively dying, I wasn't so much concerned with giving her "too much", and any minor concerns I had I shared with her hospice nurse, who ensured me that I was handling things just as I should. So If you have any fears about how you're doing, please bring them to the hospice people, who will put your mind at ease.
You're in my prayers during this difficult time.
I was my husbands fulltime caregiver, and even with hospice, I still did 99% of his care as they only had a nurse to come once a week to start, and an aide to come twice a week to bathe him. And other than hospice supplying all his needed equipment, supplies and medications, they really didn't do much else, even at the end of my husbands life sadly.
It's my experience that those patients that go to the actual hospice facilities receive much better treatment than those who remain at home and are under their care. And because my husband wanted to stay at home and die at home, I honored his wishes, although his care left a lot to be desired, despite me voicing my concerns on a regular basis.
I hope and pray that your mother will receive better care, and that she will be able to die in peace and pain free. God bless you.
Hospice has been a mixed bag for us. It seems like we have been feeling the effects of the healthcare industry being in upset. Nurses repeatedly not showing up, poor communication, staff and teams constantly getting shuffled. With a ton of patience and advocacy, recently we seem to have scored a great RN team manager, CPN, LPN, MD on my mom’s team. They have been able to get us through the past couple acute issues requiring medical attention.
It has been such a long, rough road. Many times, the proverbial roller coaster. And I have no idea how much further we have yet to go. Gratefully, I seem to have found some peace with this, and more importantly, I think my mom has. Not comprehending that the end-of-life journey can be an inherently uncertain process may have been the worst part.
It is very helpful to read others’ experiences, so thank you for creating this post. There is a pretty terrific book on aging and decline, called, “My Mother, Your Mother” written by a gerontologist. In it, he advises to do what you have done, which is to ask others of their stories of their “trips up the mountain.”
my Dad was on Hospice for a couple of months and died at the end of September. His passing was peaceful and that has made his passing easier on me.
it is so hard when the decision is being made, I cried, I felt tremendous guilt and then I realized what a gift a good caring Hospice can be to not only the patient but the family.
my Dad would have been 95 January 2nd and Mom is 88
So far, this new hospice team is an enormous blessing. It's like a weight has been lifted off our shoulders, and we can focus on keeping grandma comfy and happy while she lives out the rest of her days.
For us the hospice experience was very calming and very helpful. They made my dad's last days as easy as possible on our family and made it possible for mom to have dad at home. I know some people have had negative experiences with hospice groups but the one in our area was absolutely wonderful.
One day the CNA arrived and found my mom in extreme pain, she called the RN who got my mother morphine right away that day. (The Extra people from Hospice, are a blessing when it comes to being watched over by Low staffing of the memory care) my mom steadily declined, and I don’t think I really realized how quickly it was happening.
on Mother’s Day , I arrived to hear from the hall way , my mom moaning in pain… the staff should have called me. I called Hospice , it took the on call nurse awhile to come out.. she was with another family.. but instructed more morphine and Another drug, I’m sorry I don’t remember the name of it, but it was to calm my mother. My mom was actively dying and passed the next day.
I thank God for my moms hospice staff.
They also supplied, depends, wipes, lotion, chux pads …
The minister came out on the day that my mother passed away, because Hospice had called him and asked him to come. I left the room so he would have time with my mom. He would read to her. I was sitting outside the door and I could hear him singing to my mom. I cherish the comfort he brought her
When my mom start on hospice, I never use the word hospice with her. I would say someone so and so , is here from the new program I got you on… I thought it would been disheartening to her to hear the word Hospice. She was incapacitated so she would have no say for it anyway..
The last few days she refused to let even the hospice people in the house. My sister and I fed her, bathed her, medicated her, and took turns sleeping so somebody would always be with her if she needed anything. It was what she wanted, so there was that at least.
The dude who was in charge of the ICU was a douche. He was so glad to be able to get the room back for someone else that he could not contain his "excitement" He was so bad, the Hospice/Palliative doctor asked him to leave.
On the whole, the Hospital she passed at, pretty much sucks, I hope to never have to deal with them ever again.