Hospice accuracy

Tross760

This is kind of a cross post from the caregivers forum. My LO was put on hospice last week and their evaluating nurse estimated a couple weeks to a month or so to passing. I am curious of other peoples experience with estimated times left for life. I was really taken back they have this time estimate. I know anything can happen, but I assume hospice professionals are best at their estimates over other professionals? 

Thanks in advance doe your feedback. Just trying to truly be prepared. (Whatever that means at this point..) 

LaurenB

Tough question Tross760.  In my experiences, hospice is good at estimating in terms of weeks/days/hours based on current symptoms.  We know that there are "the rules of 3."  3 minutes without oxygen, 3 days without water, and 3 weeks without food will lead to death.  That being said, if your LO stops eating but is still taking in some water it will likely be about 3 weeks.  If they stop taking hydration it will likely be about 3 days.  For my dad, we got hospice involved at his nursing home when we realized that aggressive treatments were not going to "fix" his situation, but would only prolong his current stats (inability to walk, bathe, use the bathroom, confusion, continued falls, all while living isolated in his room without visitors).  It then took a couple of months.  It was nice to know that we weren't following diabetic guidelines anymore and allowing him to eat whatever he wanted (chocolate ice cream 3-4 times a day, glasses of full strength OJ, and Diet Coke).  Feel free to send me a connection request and I would be more than happy to share more details via the email system.  Not everyone wants to know the medical details.

Lauren

Tross760

Thank you Lauren. I did add you privately. (I think?? Ha ha) I greatly appreciate your feedback. I know it is definitely not an exact science, but I was just curious overall if general estimates from Hospice were accurate. Or maybe even more, there is no way they accidentally put her on hospice. Which, I know that myself. Since last week she barely eats anything, maybe 300-600 calories a day, drinks far less water than before, can't walk any longer, can barely stand, has become incontinent with urine. Sigh. I just want all the grace for her in her passing and to keep her comfortable and not suffer.

SunnyBeBe

Tross760,  How old is your LO and how long have they had dementia? Do they have other underlying medical conditions? If hospice is giving you time frames, I'd listen.  They are very experienced with things like this.  

They could never give me any time frame for my LO before she passed away. She was an unusual case.   I asked so many questions, read, researched, listened, etc.  Still......none of the experts, including Hospice knew how long my LO had.  She continued to live 2 years on hospice.  

I would question the MC staff and Hospice nurse about her condition....any signs....but, until the end she ate, had no labored breathing, no fever, nothing that signaled them to call me.  The most revealing thing about my LO was her weight loss.  She lost so much weight, despite eating well.

I can relate to what you're feeling.  I was so anxious not knowing what to expect. Eventually, I got the call one morning.  It was not a surprise, as I had expected it for at least 2 years, but it was a surprise, because it seems unreal when it finally happens.   I had practiced what to do in my head so many times. That's what I did. I was more sad and emotional than I had expected.  I still am.  I'd encourage you to follow up with Bereavement care with hospice after she passes away.  I have benefitted from it.  

ladyzetta

Dear Tross,

I was very comfortable when hospice took over the care for my DH. He was in a MC facility and there was a few hospice nurses there daily taking care of their patience. My DH was there for 2 years and I got to know the hospice nurses pretty well. I really never noticed the decline I guess it was because I was there daily and things seemed to stay pretty much the same. I think maybe because it was down hill all the way and I was just growing with the changes. 

One day I asked one of the hospice nurses when they thought my DH would be ready for them and I was told he had been for awhile. They have a lot of things they watch for and I guess he was showing the signs. So the hospice evaluation was done by their evaluation team and he did qualify. He was then assigned one of the hospice nurses. He was on hospice for about 6 months and along with the hospice nurses and the MC aides he was given the best care possible.

One morning when I went in my DH was on oxygen and was in bed on morphine. He had taken on a decline, I was not called because they knew I would be in that morning. The hospice nurse was waiting for me and I was told if I needed to call family in to do so. Hospice was with my DH and myself thru out the day. I was told he probably would not make it past 6pm that evening. He passed peacefully at 6:20pm. Hospice stayed with me till things were done and  I was ready to go home. 

For the next year hospice keep a eye on me helping me with any and all decisions I had to make. That was part of their service they gave me a lot of strength.  I was/am very thankful for hospice. 

Take care of yourself. Hugs Zetta 

RetiredGopher2010

My mother also lived about 2 yrs on hospice. I was so grateful for their care, love, and how their staff kept me informed. They provided reading materials about what to expect. Hospice had seen changes in her breathing two days prior to death.  She refused to eat. I thought I was prepared.  I thought I would be ready when she passed away.  It was still very emotional- like suddenly going into the drop off - sudden sinking trying to stay above water.  Sadness comes in waves.  Find bereavement counseling where you can.  It is difficult at this time.  No in person meetings.  Still being able to talk to someone who has taken your journey will help.

Tross760

Thank you for all the feedback. To answer some questions; Mom is 70, she was undiagnosed prior to October and was functioning normally. In retrospect there were some initial small signs, but nothing bad at all or dangerous. I had to take mom to ER on 10/15/2020, all they found was a UTI. Unbeknownst to me- these are highly dangerous to elderly. Well, apparently this kicked off her AD/VD something wicked. She had another three ER visits and a two week geropsych stay. In between all that we got neuropsych testing/mri/mra, psychiatrist, neurologist etc. Rapid progressing dementia (mixed dementia) was diagnosis. Mom has been living with husband and I since December 16th as my dad cannot take care of her. In those two months she has gone from mobile to unable to support herself at all and bedbound, incontinent, eating only a couple bites a day, sleeping more and more, making zero sense.. When she was put on hospice last week and they gave me a weeks to month estimate for life, I gawked. Now after only one week- I am pretty sure that their experience in estimation of life is pretty darn close- minus some of those rare cases where someone continues to live. 

I do not wish my mother gone ever. I just hope she doesn’t have to suffer like this for long. This disease is wretched. 

Hugs to all and thank you for the support. I too have a hospice that provides care for up to a year for us after mom passes. 

RetiredGopher2010

My heart goes out to you regarding your mother's so rapid decline.  It is agonizing.  When I hear people say, "my friend is just so confused" or "I think she/he's losing it." I find those words hurtful.  It's so much more than "confusion" or  "losing it."  That person is someone's mother, father, husband, wife - a loved one who is forgetting family, friends, home, how to care for daily grooming, and eventually the ability to speak, to eat without assistance, to walk, to get dressed.  It's distressing and heart breaking to watch. My prayers are for you, your mother and your family.  Love her. Kiss her. Hold her hand.

Yes this disease is incurable, wretched and traumatic.  

Tross760

I agree. I am very sensitive to what people say at times. This is by no means someone's choice. I try to be as respectful as possible of the fact that clearly my mom would never have wanted this for herself. None-the-less, us as a family. Hugs

TessC

I am so sorry to hear of your mother's rapid decline from Oct 2020. Some dementia is from an aggressive form of brain disease and unlike my mom, who lived with dementia for 17 years and was on hospice for 3 three years, these loved ones go quicker. If your dear mother is eating less, drinking less and sleeping more - those are signs the end in nearing. I say nearing, because no one can tell when death will occur. Once my mom stopped drinking anything-it was a matter of 3-4 days. Let that be your guide.

I 'm happy I had the opportunity and honor of taking care of my mom at my home for 15 years. She died in her bedroom, in her bed and though it wasn't pretty like you see on TV, it was comforting to me to know she was with her family.

I wish you peace during this sad, sad time and may your mother passing be peaceful like my mom's.

RetiredGopher2010

I agree:  it was an opportunity to care for my mother and it was an honor to be with her. I wouldn't have changed a moment of that. What I hoped for is that she knew how much I loved her and enjoyed our time together. When she stopped eating and drinking it was 3 days before she died. A booklet given to me by hospice was very helpful. "Gone from My Sight: The Dying Experience," by Barbara Karnes, RN

Tross760

Hi Tess and Gopher, 

Thank you for the support. I have been doing a lot of reading. It is so hard to tell where mom is. Over the last week, she eats less and less. She is down to about 1 ensure or less a day. She does still drink water. We are working with hospice as she is having what I assume is Terminal Agitation. She is trying to get out of bed constantly (can't walk) throwing and picking at covers, digging around in her bed, being somewhat nasty at times. Ripping off her briefs. 

I do hate this for her. No one does know exactly when, but she sure seems to continue her rapid decline. I only hope her end is peaceful and not as agitated as she has been the last few days. 

TessC

I'm sorry to hear your mother has been agitated these last few days. If the hospice nurse agrees that it is terminal agitation, they may be able to give her morphine to calm her if that is something you agree to. That usually means they eat even less and death is not far away. 

This is such a difficult time and all we can do is be there for our loved ones and pray. I always felt my mom knew I was there with her, even though she did not respond. I hope you can get rest. I'm thinking of you and your dear mother.

RetiredGopher2010

Thinking of and praying for you and your mother. Comfort care is what's important now. Hospice can offer advice on how to provide comfort.  Take care of you. Pretend this message includes a hug.