Trying to wrap my mind around all this

Tross760

As I had posted the other day, my mom is rapidly progressing and was put on hospice on Tuesday. That said, when the nurse came and did her evaluation, she stated it could be weeks-month for my mom until passing. Comfort meds are being administered as she has had long time back pain and then pain from her ankle with the recent fall/sprain. She is definitely more comfortable now. 

I am just trying to process all this. There were no signs prior to her first hospitalization in October- but here we are on hospice in January/February. The hospice nurse had no doubts putting mom straight on hospice. I assume since they do this all the time- they have greater insight into symptoms and signs of end of life correct? Maybe it is because I am not ready, or maybe I can’t see it- but I didn’t think she was THAT bad. But I have never been here in life before.  Perhaps it is fried and I am trying to negotiate. Is this really happening/gonna happen/this advanced???! 

Hospice has great insight to these things right ?? 

I am just rambling and wondering this morning. I surely don’t know what to think anymore. I just try to help her day by day to be comfortable. 

dayn2nite2

If she's on hospice, they have specific criteria to meet to accept a patient, so it's safe to say she's nearing end of life.

It's not unusual for relatives of the person with dementia to come here and find they have severely underestimated what stage their LO is in the disease.  That sounds like what happened here.

I don't know how old she is, but someone with early onset will generally progress faster also.

If you can get to a place where you can be glad she's comfortable and not suffering, you may be able to deal with her eventual death better.  My mother was already on hospice for 11 months and had a heart attack and died 3 days later.  I was glad she did, because without that occurring she could have lived (existed) many more months like that.

This disease is not any way to live.

Tross760

Agreed, this disease is cruel. The range of what I see my mom feel and possibly think is so sad. I was just shocked all this happened so fast.

Tross760

I guess maybe what I am wondering, is, how accurate was the timeline given from hospice to when people’s LO actually passed? Was it around the estimated time given? I am prepared for the reality of all this, but I am just curious how accurate hospice was in estimating time left.

BassetHoundAnn

What a horrible time you must be going through! Hospice caregivers are truly wonderful and always a godsend. 

For what it's worth a relative died of cancer recently and the hospice nurse pretty much nailed it with "let's see how you're doing in two weeks." On the other hand there was the columnist Art Buchwald who was famously in hospice for over a year with kidney failure. He joked that he was a "poster-boy for hospice care." 

I think the progression of ALZ can be more difficult to predict. A friend's parents both had ALZ and they were both under hospice care for several years. As one professional caregiver I know marveled: the body keeps fighting to hold on even though the mind may not want to. 

I'm so sorry about what you and your mom are going through. You're a good daughter for being there for your mom. Hugs!

Cynbar

Yes, based on their experiences, the hospice nurses are good at predicting how long a patient has left. They have benchmarks they go by, such as how much a patient is eating or drinking, how fast symptoms have been progressing, and so on. Talk to your hospice nurse at her next visit and ask her to explain to you what she is basing her prediction on.

physicsmom

Tross, you could be my twin.  My Dad started hospice care in November, had to go in-patient at a geriatric behavioral unit for his aggression 17 days ago - and then we hear this weekend that he's too weak to walk (was toddling around before) - no longer can speak coherently at all, and starting to eat less.  I came here wondering if this might be medication based - and I'm still going to ask the community - but I'm starting to feel that I'm in your shoes too.  That he really is declining that fast.  (((hugs)))

Tross760

Thank you basset, cynbar and physicsmom. Again, just trying to gauge how close hospice is on predictions of things. As you all mentioned, they deal with this a lot so I would feel mostly confident that their estimations are correct. I just can't believe it was so fast. SHe has been on hospice a week and in that time can no longer walk, barely stand to hold her own weight, incontinent, barely eating. 

I don't wish this disease on anyone. Hugs to all. Thank you for your responses. 

SonShine Lady

Hi Tross...I can't imagine how painful and confusing this must be for you.  I'm a retired Hospice counselor.  The criteria for someone to be admitted to our Hospice care, and I believe this is standard in the U.S., is a doctor's statement that the person's expected lifespan is six months or less.  Keep in mind that each person is different and six months is ONLY an estimate based on a number of factors and what is required for insurance to pay.  A very common misconception is that if a person is recommended to Hospice care, it's a "death sentence" when our experience and a lot of studies over the years indicate that Hospice care can actually extend life, especially quality of life, due to effective pain management and the relief that brings. I  had patients live longer than the "six months"so please don't let a number or time frame scare you.

If a Hospice counselor has not yet contacted you, I recommend contacting your Hospice and requesting a visit.  That counselor will have your mother's history, can sit down with you and can help answer your questions, concerns, which may help a lot.  You have the choice as to how often you wish to see the counselor but I definitely recommend a first visit.

BTW - you and your mother are beautiful!!!