Yes, the average hospice stay is just a few days. It’s unfortunate because hospice care can really improve quality of life for both patient and the family.
My grandmother had hospice services for nearly 2 years. There is a re-certification procedure so if the person still meets certain criteria, they can continue with hospice. If they have improved or have stabilized, which can happen, then hospice needs to step out until the situation changes again.
We found palliative care to be such a wonderful experience — to the extent that’s possible with one’s child.
Hospice was an entirely different story. We transferred our daughter’s care to hospice so that pain management could be handled locally. Her children’s hospital was an hour away from home and we didn’t want to subject her to unnecessary car rides or testing. It seemed to make sense.
In theory, it was the right decision and I wouldn’t necessarily change it. But the nurses who came to our home were not the savvy, concerned, responsive professionals we worked with previously. They added no value and their visits felt like an invasion.
I am all for help, but even though I realize our experience is atypical to what others have had with hospice, I will also find seeking hospice care a hard thing to do.
Our best experience was with the aide who came 5 times/week. Twice my mother improved enough to come off hospice after 6 months and I credit the aide and one really great LPN.
My main issue with nurses was when she was actually a few months from dying, and dementia was worse with more agitation, but i had to fend off some of the medications suggested or tried! I researched and requested gabapentin which worked.
My experience with the hospice house for the last 3 days was traumatic. I won’t go into it, and have talked with administrators there to try to help bring about some changes.
Hospice was the right choice, but I agree that it was a hard one to make.
We (siblings, mom) imagined there was some slow process and long discussion with the teamof doctors. Instead, there was a suggestion by an RN friend, which was literally whispering to me at the hospital “Do you think it might be time to talk to palliative care?” and I saidyes, and days later he was in hospice. We had no idea what the day-to-day would be like and that was scary.
Certainly we all agreed that the situation warranted it. But we weren’t sure which of the doctors had any input, how Dad qualified, etc. We had to be asked why we couldn’t justtake him home (the RN looking right at the three grown children with a LOT of look). Mom took two weeks to feel like she wasn’t intruding on processes by simply being there (Dad was in residential hospice). She was haunted by having to decide on her own mother’s end of life care so we had to really reinforce that it was all of us deciding, and I think sometimes she blames us for not fighting harder for some new treatment or therapy (this was not a real choice at all)
Hospice care itself was exemplary and the staff were amazing. Yet, it is SO much to try and change to a “feel better, not get better” mindset. I often have nightmares where I realize we are killing him when he could have lived another two years (this is a fiction my brain is inventing).
So it can be hard, yes, in many ways. Interesting that everyone’s hospice experience is so different, but in retrospect very very few say it was a bad choice.
After my dad was gone, my mom made a couple of comments like we killed him with morphine. She’s not the most sophisticated medically so I had to just let her talk and not take it personally.
@MaineLonghorn and her sister were just here and asked about my mom. I explained a little more about what she’s doing and what she’s not, and they think it’s time. I’m glad they said that as I wasn’t sure that she would qualify. We still don’t have a mtg set up with hospice yet.
Sorry for all the challenges. It is distressing to see a family member so agitated over time and it can compromises opportunities as well whatever quality of life may be possible. If the initial geriatric psychiatrist consult wasn’t useful, it may be helpful to consider a geriatric psychopharmacologist. Their expertise would allow them to do a thorough assessment of medications and they are often more up to date in pharmacological options. All my best with this.
I wanted to come back to this. My sister was really against mom taking anxiety and depression meds. My SIL feels like more drugs the better! It was such a balancing act as my sister was suspicious that SIL just wanted mom drugged out so she’d be easier to handle.
The worst night was when dh and I were in charge. Mom was up almost all night. This was a new low. Well, come to find out that my mom had run out of her anti-anxiety med four days before, and my sister had not moved on getting it refilled (they kept waiting for it to show up via Express Scripts). Well, after hearing about our night she was motivated! Again, family not medically sophisticated, and I told her that she NEEDS these meds for equilibrium. I know my sister feels like these kinds of drugs carry some kind of stigma. But, hey, knowing she might be up all night with mom and then having to go to work the next day … THAT got her to call the doctor and insist on a 10-day supply until the other meds showed up.
Anyway, for me, these meds are about making her feel better and to have more pleasant days and nights.
I hear you loud and clear. And I wouldn’t discount her feelings in any way.
And yet if you don’t use the morphine then you let them stay in pain?
It’s a merry-go-round of “what ifs”, buts and "only if I did something else or other"s.
This is why you make the best decisions you can with the information you presently have and then let it go. And forgive everyone around you including yourself.
Excellent goal.
Not everyone has a medical background but they do have two eyes. For example, if your loved one gets dizzy after taking a medication and is now wobbly and in danger of falling then something needs to be changed. What’s worse? A higher blood pressure or falling and breaking a hip with a long hospital stay? Many factors and many possible solutions.
Don’t ever stop advocating for the person in your care. Only someone who is around for longer time periods will notice the small differences in behavior so make sure your concerns are heard loud and clear. I know this particular sub is filled with “warriors” who advocate in the best sense. But I also know it is TIRING to be the “lone voice in the forest”. Keep on trucking!
I know various pharmacy programs and use of ‘Express Scripts’ - we had a very bad experience with DD’s medications not arriving - to where I had to be on the phone with Express Scripts or whatever other service for hours…DD needed anxiety and depression medications, got approval for having it filled with local pharmacy, but OOPS was already in process and had to have someone ‘find’ the filled medication to expedite sending. What a disaster!
Fortunately DH’s employer got so many complaints that we could go back to local pharmacies (this was over 8 years ago).
With many having CVS or Walgreen’s nearby, and so many drug plans working well with those, we have been using our local pharmacy for our Medicare D plans.
Tough when you get the worst of the situation due to some else’s poor judgment.
One does not want to get limited to not being able to use local pharmacy.
Son in law and his brother have a situation with their parents. Dad has Parkinson’s and is declining to where he now needs a wheel chair. Mom needs cataract surgery and also some back injections, but needs a driver and has somewhat put her things off (dad hasn’t been able to drive for over a year). Mom seems a bit reluctant to ask for help or is overwhelmed, or both. Now things are getting to where some tough decisions need to be made.
They may not even have their home paid off. The dad had to retire at 55 (federal law enforcement), and his Parkinson’s showed up about then. He had a bad fall off a concrete dock and needed surgery on both legs/knees. Scarring and nerve damage are also affecting his mobility. At Christmas last year, there were some home projects that needed to be done - DH improved the kitchen light situation. Sons went through paperwork to get some stuff tossed. Parents have only gone out of town (a distance, with travel in one day) for a 2nd opinion on the mom’s cervical and lumbar spine issues. They drive about 1 1/2 hours for some of dad’s Parkinson appointments, but that may be ending soon with some PT at home now, borrowed wheel chair until the right one for him can be ordered/obtained.
They are getting grab bars installed, and the dad may be able to stay at home for a time before needing skilled care facility. In the interim, they are having to work out of their ‘what are we going to do’ thinking.
Most likely, manage at home until he has to go to skilled care. If mom needs various surgeries, schedule them and have the help come. Schedule to have someone come help with dad’s personal care - as that is needed.
We may become in the mix of ‘family helping’. We can get to their home in one day drive. We will see DD/SIL this coming weekend, so can find out from them on how things are going to work out.
just now, we met your friends at the memorial service. Small world!
We have express scripts, it’s worked well for us for many years. We had automatic refills turned on and medication was shipped to us on time.
We use their specialty pharmacy Accredo also and it’s also been good.
No complaints
When my mom’s doctor recommended a hospice evaluation, I wasn’t ready to hear it (she called me on Christmas Eve!) but after a few days of thinking about it, I called the company she recommended and a few days later, signed my mom up.
I felt very emotional signing the papers, as if I was letting Mom down or giving up on her. It was the right thing to do, but still a very hard thing to do. I knew that some people last a year or more on hospice, but thought my mom might have six month. In reality, she made it three weeks.
Being her daily caregiver for almost ten years made it impossible for me to be objective in assessing how much she had declined and how much I was fighting a losing battle. Near the end, she was frightened, combative, biting the nurses, yelling, definitely not having a peaceful existence. The morphine helped her have that peace, even though it gave me less time with her fully awake. Looking back, I was probably being somewhat selfish in trying to keep her alive longer, since she wasn’t having any conscious enjoyment.
The hospice people were wonderful- the nurse, social worker, chaplain, etc. Very warm and compassionate. Knowing what I know now, I would have used them sooner.
It’s so hard to figure things out when you’re totally enmeshed in the middle of it! It took me years to get a perspective on my dad’s last two years. xoxoxo @psychmomma
@oldmom4896 , you are so kind.
My in laws had always insisted that they would stay in their home forever. FIL had Parkinson’s. At first, they had in-home care for FIL - he needed help with showering, and he needed someone to chauffeur him around so that he would not be tempted to drive (he was on opioids for pain from spinal stenosis). My MIL probably could have helped him, but she would not - he had long term care insurance, so maybe she figured she didn’t need to. Anyway, he began to need more help, so they actually decided to move to assisted living. It was a godsend for my FIL, who was very friendly … he loved the social aspect. When FIL passed, it was really helpful to have her in the AL environment, where the staff made sure she was well taken care of. Hopefully, your SIL’s parents will consider AL.
Assisted living can really vary as can 24/7 caregivers. Quality at both can vary greatly. We experienced this 1st hand with our folks. Some caregivers are more attentive and provide better care, companionship and stimulation than others. Ditto for assisted living. One size does not fit all situations.
Mom got to the point where she needed 3-4 people to change her diaper 9x/day. Skilled nursing allowed us to be her kids and loved ones instead of caregivers and allowed autofocus on bringing her joy.
Since she was hospitalized before the discharge for skilled nursing for multiple days, Medicare paid for her most of her care and included on site occupational and physical therapy, plus speech therapy. It was very helpful to us, the family to have skilled nursing in her final months.
She had family visitors at least every day.
We were advised by palliative care that while aides are theoretically possible, in reality it is very difficult to find qualified care even if you can afford it. The staffing shortages are just impacting every level of care. My inlaws are convinced since they live in the city suburbs it will be different for them, but I am not so sure. We can’t even find a cleaning lady in mom’s little town, and we know (or are related to) almost everyone there.
I think this will be a major concern for all of us baby boomers. Fewer aids, and a huge influx of future ‘clients’. Anyone know of organizations or movements trying to offset this future challenge?