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Hospice services
Posted: Tuesday, August 27, 2019 7:58 AM
Joined: 3/1/2013
Posts: 34

We attended a caregiver support seminar in Columbus the other day and one of the speakers was from hospice.  

I had always thought that hospice was an end of life service but, after listening to their talk, I realized that was not entirely true.   In Florida, where we spend the winters, I had gotten conflicting advice from different people so I put it out of my mind.  

They spoke of all these services offered and some really surprised me.  Aroma therapy, acupuncture, a projector that shines the night sky in the room even massages ! I thought about asking if the massages were for her or me... 

When I questioned the "end of life" requirement, they said it is when life expectancy is six months or less but, after a consultation from their own doctor, it's another six months.

The lady sitting next to me leaned over and said her husband had been in hospice care for over three years!

After the meeting, one of their staff came over and talked to us.  She said they basically go on "walking and talking"   Ann can walk fairly well but speech is pretty much gone. 
She said to get a recommendation from her doctor which, after a phone call to Florida and a few questions, was approved.  Now, she sees the hospice Dr. and, I'm told she will be enrolled.   

Ann's overall health is excellent and we hope she'll be with us for a long time.   

I've never been a fan of abusing the system but it dawned on me that (duh), the more people they can enroll, the more grant $ they receive.

It is a shame that folks who have worked, paid into the system and have a little nest egg after retirement are not qualified for Medicaid and must spend their life savings on extended care. 

Anyone else have experience with hospice?  


Posted: Tuesday, August 27, 2019 8:15 AM
Joined: 9/8/2017
Posts: 2261

I felt the same way you did about abusing the system and over here in Cali, at least for me, I called one hospice co. (Found it in Medicare web to make sure) and was informed I had to get an evaluation order from a I stopped asking and waited for a sign to be able to ask a dad recently had a seizure (most likely, I assume, an isolated incident, may have been my fault for messing with his Ativan) so I asked a doctor at the hospital for the order. My father, although bed bound, seems too healthy for hospice so I’m expecting he’ll get discharged.   The care manager keeps asking me if there has been any changes and I have to tell her nothing significant has happened since. No changes...except his bowel movements are taking longer in between now....I guess I have to admit I can be a little “clueless” with some things...anyway, I kinda hope I can continue having him in hospice...but dad seems to still be enjoying life.
Posted: Tuesday, August 27, 2019 8:43 AM
Joined: 10/21/2016
Posts: 2543

Anyone on the fence about Hospice should begin investigating/interviewing different Hospice companies.  They are not all created equal.  You can ask them directly for an evaluation of you LO, and if he/she qualifies, they will typically work with your doc to get the medical order.



Posted: Tuesday, August 27, 2019 9:27 AM
Joined: 10/24/2018
Posts: 983

Hi SpruceBruce-- I have three personal experiences with hospice. The first, in 1997, was for my father, who had decided not to treat his aggressive cancer. He was in the hospital in a very rural area and I guess the staff there told Mom about hospice. She and Dad quickly rented a furnished apartment at a CCF, my sibs and I (who had come "to say goodbye") arranged a few things therein, and left for our wide-spread homes. Dad was moved to the apartment under hospice care, and he died just a few days later. Mom reported that the nurse was with her for the entire active dying process, which was less than 12 hours I believe. I lived 4.5 hrs away, and got a call in the late afternoon that Mom wanted me there. I didn't quite make it; it's hard to drive 70mph while crying. Mom and the hospice nurse had washed Dad (rural area where dying at home was still common anyway) and Mom had had time to say her final farewell before the nurse called, I guess, a funeral home for cremation and transport to final destination of the ashes. I stayed at least 2 weeks (very generous use of that new thing, FMLA) and I know hospice supported Mom until she decided where to go from that apartment. 

Second, 2015-2017, MIL. I don't recall who got the ball rolling, but the three daughters found a local (metro area) hospice and their mom was accepted for one or another of her medical issues. She was on for 18 months. We had twice weekly visits from the case manager RN, twice weekly bath aide, a hospital bed when it came time, nimble medical services as needed. During that time MIL went off hospice several times for hospitalizations, and came right back on when she returned home. The very knowledgeable RN told us when final goodbyes from the very large family were called for, and when actjve dying commenced. She would have stayed for that, but family took over from 24/7 carers and sat the vigil. Only after she'd passed, about 18 hours later, did we call hospice, who'd told us to take as much time as we needed. Hospice called pre-selected funeral home, and it went from there. We were offered grief support but no-one used it to my knowledge. 

Third, my Mom, in MC and late stages of at least one dementia. We three kids, all POA's (which works excellently for us) didn't want Mom ever to have to go to the ER or the hospital again, and the DON of MC suggested hospice. I called the same one as for MIL, and Mom was accepted immediately. My impression is not that the dr says, "she will definitely die in 6 months", but rather says,"it is very possible that she could die within 6 months". For us, the initial hospice period is 90 days, at which time there is a re-eval by hospice, which can result in either "graduation" or a further 90 days. After that it is a rolling 30-day period. Mom had a recent period in the hospital to repair a broken hip, and was accepted right back where we left off in hospice on arrival back at MC (no rehab facility for us, no thanks). The nurse visited more frequently, took care of the incision including removing staples, collaborated with me on a pain med schedule to present for hospice dr's ok, and we're a few weeks out now. I love being on hospice, and am happy to have my taxes go for her care by hospice via Medicare. Mom is taking a couple of meds that we pay for, rather they are run through Medicare sans hospice. I have an excellent relationship with our case mgr RN. Our social worker is good but young and...well, just plain young!, so I use my own therapist for those conversations. 

I don't feel I'm gaming any systems. I paid in, Mom takes (and Dad briefly took) out. Mom's resources remain for her MC. Mom is part of a system which is not aiming to cure either her dementia or her well-advanced age. She has no real property, and not much more in the way of assets. Her long term care insurance payout will only last another couple of years, but I personally don't think she'll be needing it all. 

Hope this long essay here gives you a feel for my experience, SB!

Posted: Tuesday, August 27, 2019 9:30 AM
Joined: 9/3/2016
Posts: 215

My mom is in a nursing home and has been on  hospice for six weeks now. One of the first things hospice did was stop both her Aricept and her Namenda. Surprisingly once that was stopped she is actually a little more alert and a little more verbal. Who knew? But nevertheless she is still in Stage 7. She can talk, but doesn't initiate any talking. She will respond to questions, and sometimes it takes her quite awhile to process. However, she surprised me yesterday when I walked into the room and said, "Hey Mama" and she immediately responded "Hi Darling." Most of the time I can tell she knows I "belong to her" but I'm not sure she could tell you my name if asked or tell you that I am her daughter. Yet even though she immediately responded to my greeting clearly knowing who I was, she could not make a decision as to whether she wanted me to read to her or play music for her. She can not walk even a single step, at least 85% of the time keeps her eyes closed even if she's not necessarily asleep but in a semi-sleep state. She is having swallowing issues and must be hand fed pureed food. She can only sit if she is placed into a Brody chair at a 45 degree angle. I don't know if she can smile or not. It has been a very, very long time since I've seen a smile. I have no idea how much more time she may have. That's one of the most frustrating things about this disease. How do you plan? How do you know how far the money must be stretched? Evidently there is no way to know. But my mom seems to have shown a little improvement since hospice. At the end of six months will she still qualify? I hope so. I don't want to lose them. She has shown some improvement, but will that suddenly disappear? So far up until now my mom has been on a steady downward spiral. I hate the not knowing what to expect or when to expect it.
Posted: Tuesday, August 27, 2019 9:54 AM
Joined: 10/9/2014
Posts: 1041

I've never seen anything that led me to believe that Hospice care recipients were abusing the system.  The program is for those who qualify and there is criteria for it.  Some people who qualify, improve and actually come off Hospice and then later return.  I'm no expert on Hospice, but, I have observed how they have helped many in need as they journey to the end, as well as their families.  Unless, the patient is staying in a Hospice facility, they don't provide long term care, like an AL or NH, but, supplemental care for the patient and their family. 

My LO has been on Hospice for almost a year and I think that her continued decline keeps her qualified.  She is now end stage 7 with no ability to do anything anymore.  (No words, no smiles, no walking, can't sit unsupported, etc.) She is hand fed and I expect her ability to swallow is the last thing that will go. Her assigned social worker has been awesome and offered us both a great deal of support and compassion.  This is in addition to the nurse that comes weekly and a bath aid who comes several times per week. 

Posted: Tuesday, August 27, 2019 11:17 PM
Joined: 5/22/2018
Posts: 359

It helps to read the input on this topic. My mom is heading in that direction. Today one of her caregivers said she was hallucinating, which was the first time that's happened. She is sleeping more. She is having more difficulty feeding herself, less appetite this week. Much more confused this week, thought I was her sister or aunt. We have to help her to the bathroom when she walks with the walker or she would fall, yet she still is able to walk. Some days she can speak better than other days. When she's tired in the evening she needs a lot more prompts as she can't find her words at all. I feel we're beginning a downhill spiral now after she was holding her own for awhile. It makes me sad, though I will genuinely welcome assist from hospice. They were so great the last six months of my dad's life.