I think it is the lid not the handle though.
I need her to open the lid and go, just not flush. I found three different handle locks online.
It is amazing the stuff sold online, if you can figure out what terms to search for you may eventually find the perfect widget!
We have an odd hospice issue, and I wanted to see if there is any perspective from the collective wisdom here. My mom has now had 3 hospitalizations, and 3 rehab stays since August. The last, sadly, was for an A fib related stroke when cardiology refused to put her back on her anticoagulant. She is back on it now, and after the rehab stay is doing quite well, if struggling with expressive aphasia and decreased short term memory from the stroke. But she is stronger physically due to good rehab, and some other issues have settled out as well due to medication adjustment.
At rehab, a hospice representative came on rather strong, and she qualified, so they had a meeting last week at the house she shares with my sister, and my mom signed up. The support and involvement in the hospice benefit are rather wonderful and they like some of the staff. However, hospice is insisting that she switch her medical care to their physician, and per my sister, her meds will be changed. I am guessing that as she is on a few expensive meds, they are not willing to pay for them. My sister and I are ready to quit hospice due to the med issue, as well as the insistence that she see their physician only, with no specialists.
Though she is 94, I come from a long lived family, and my mom is not ready to give up on life. She enjoys her study and music groups, church and socializing. She may be age appropriate for hospice, have garbled speech these days, but her congestive heart failure is not symptomatic, and her respiratory problems have mostly evaporated with her med adjustment. Hospice states the cardiac and respiratory issues are qualifying diagnoses.
I feel admission is premature, and I am wondering if there is an economic incentive to admit people as well as change her meds and limit her care. Has anyone else seen this? Or felt pressured to admit?
As a strong believer in palliative care and the hospice movement, I am surprised at my developing attitude of suspicion regarding reason for admission. Opinions?
BTW, upthread by 6 months or so, I had asked a question regarding airfare decreases for emergency travel. I was detained in Arizona due to one of my emergency visits, and Delta was very kind in waving their $200 change fee for my return flight.
My experience with hospice is as a volunteer. It’s meant to be a graceful and sensitive management when the final stages are near. It’s not age dependent, but about the individual and prognisis. I think some posters have seen their elderly discontinue hospice, when there’s improvement.
I know this is hard and I’m sorry. But a consultation with her doctor (and perhaps the hospice social worker or an ombudsman) may help clarify and understand the medical assessment, from their perspective.
I don’t see an ‘economic incentive.’ Maybe some orgs handle this differently, better than others. Or not. Maybe hospice, in her case, is premature. You do have to start with your own instinct. But there may be more to learn.
Three hospitalizations and rehab is tough. Best wishes.
Personally, I’ve never heard of hospice limiting the patient to just their physician. But, if you and, your sisters, and your mom are not ready to give up on specialist visits, it seems to me hospice is not the right place for her at this time. Indeed, it seems your family does not see your mom with needing comfort care for end of life. There are for profit and not for profit hospices out there which may explain the strong sales pitch.
@great lakes mom- my understanding is that one major change with hospice is that diagnosis-related meds, interventions and assessments are re-evaluated with an eye towards comfort measures, with some diagnostic tests and procedures limited. There is an approach of why seek more information than you are planning to act on, given the patient’s health status. Medicare may require that the patient be unenrolled from hospice (sometimes temporarily) to do testing related to hospice diagnosis, for example. Medication decisions are likely made based on the purpose of the drug, potential interactions and side effects, rather than the expense.
The hospice context seems to be about maintaining comfort when treatment is unlikely to be effective or well-tolerated by the patient. If your family and mother (if competent), would choose to see a cardiologist and seek active treatment (perhaps after recommended diagnostic testing) if her congestive heart failure symptoms were to increase, it is worth asking hospice how that would play out.
I had 2 parents on hospice; they were not required to give up their primary care doctors to join. I did make sure that the primaries were comfortable with the plan so there could be cooperation.
I think it would help to run all of your questions by hospice as @lookingforward suggests. Hospice works best with all on the same page. I was comfortable with it as by the time my parents were enrolled, it was clear that additional treatment options would yield little in the way of quality of life, while further taxing a frail person.
Best with sorting it all out and sorry for your mother’s challenges.
@great lakes mom, if she is not ready to give up on life, and you and your sister are willing to continue taking her to her doctors, she is not a candidate for hospice.
The whole point of hospice is to keep the patient comfortable and comforted while nature takes its course. Curative medication is stopped, only palliative medications. It’s not about her age or economic incentives for the Hospice provider, it’s about whether she is ready to stop the hospital/rehab cycle. If she’s not, and you and your sister are not, then it’s time to go back off hospice.
The extended in-patient rehab after a stroke really can do wonders for the patient’s health. FIL was more robust when he was finally released after his stroke than he had been in quite a while. Unfortunately, he was still cognitively impaired, couldn’t understand at all why he needed any more exercise ever really, and failed soon after. If she doesn’t keep up the rehab type activities, she may have the same results.
I really don’t see how she is qualified for hospice by diagnosis only. She is asymptomatic at this time and it seems that you may wish the option of pursuing medical treatment that is contradictory to hospice mission. Medicare will require review and can discontinue payment for hospice. I don’t think, from what you are explaining to us, that it is a proper placement at this time.
I’ve got my Mom for ten days to give my sister a break. One of her big problems is her hearing. She wears hearing aids but sometimes still has trouble understanding the spoken word. If it’s written out, she gets it. One of her favorite past times is playing words with friends and solitaire on her iPad. We’ve discovered a great app that helps us communicate. It’s “notebook”. It has a few different things to it, but we use it where you can use your finger or a stylus and write words in large letters - just as you would a sheet a paper. After she reads the msg., it’s easily erased. We were looking into getting a small whiteboard to use just like this when one of us found this app.
@psychmom {{hugs}} is all I got.
@greatlakesmom. First, I have a very different take than several people upthread re your mom being cared for by hospice. Second, oh, yes there is financial incentive for a hospice organization to take charge and bill Medicare, there are SO MANY auto charges that they slip in there to bill for. Third, the physician issue is very interesting…
I am just describing MY take and MY experience with hospice in Mom’s state, states have different rules all over the place.
FIRST: your Mom may qualify for hospice because it can be described very loosely as “We make an educated guess that this person could die in 60 days”… There you go, your mom has a bad heart and could have troubles in 60 days… she can be on hospice. It is not (or no longer) true that only people going to die in 3 days get hospice. Plus people now go on and off hospice care all the time. First time we signed Mom up, she was on for 6 to 9 months. She was off for 3… had to go to the hospital (just dehydrated) and so qualified to go back on hospice. I want her on hospice to avoid the trips to the hospital. Her medications were NOT changed with the first trip through hospice, but just recently, they did a cut back because Mom isn’t swallowing her pills (even mashed up, clever girl to put them in her cheeks).
SECOND: Medicare is paying a ton for hospice for Mom… Medicare will pay hospice to shower Mom, but will NOT pay the memory care aids to do it. (smh, what???) They order the Depends, Medicare pays, but they get a %… and so it goes. I will say that they are NOT drumming up work as there is more people needing care that people to provide it, but the person who has medicare and maybe a good supplemental medicare will get on hospice. If there is little $$, I think they provide care not as long and for people who are truly ill.
THIRD: So the first round of hospice care, they said the hospice DR would take over and review the meds and blah blah blah. But nothing at all changed. THIS time on hospice, they said Mom’s old Dr is still in charge and still reviews all the meds and they run all the changes by him and he signs the orders for hospice and memory care. So that is different than what I understood in the beginning. SO … YMMV for sure.
If your mom has Medicare and supplemental insurance that will pay hospice, and you confirm that they do NOT change her meds without approval by her own DR (who you clue to get you in the loop), then I would let hospice help out for the initial period . They don’t have to do another assessment for either 30 or 60 days. After that, medicare will require a re-certification and with their help, maybe your mom will be much stronger and they can go away! (and come back again later as needed).
Hospice is die within 6 months. Each state has different guidelines on how to qualify. My mom’s local hospital admitted her and the 3 docs in WI all signed her off for hospice. She had what they thought was a gall bladder infection. so she was admitted on a Monday and given IV antibiotics to clear up the infection, discharged to home on Thursday (hospital bed delivered and set up in her living room) and she died the following Monday. Her desire was to die at home, and it worked out. My sister and brother were present over the weekend and it was pretty clear at that point with her breathing, no intake of food/drink, that she was ready. Mom had dementia and died at age 77.
Thank you so much for all the kind and detailed replies!
SOS, yes, that is a clear indication for hospice, and it sounds as if she was ready.
eso, it sounds as if you have had dealt with a variety of stories as to scope of medical care and which physician is to be making decisions as well. I know you have appreciated the longer term involvement, as they can help with a number of care resources. This is why it initially seemed to be a good idea. Yes, she has a good Medicare supplement.
However, this crucial point sort of brings it all home, from MomofJandL, that our goals of care are different, and that is why I am struggling with the appropriateness of hospice at this time. My understanding of hospice is as travelnut states regarding her parent’s path, " it was clear that additional treatment options would yield little in the way of quality of life, while further taxing a frail person". At this point, hospice seems like they would give us some nice benefits while things are going well, but in the event of medical crisis, we’d be struggling to get her appropriate care.
I have no problem with hospice, and very much believe in avoiding hospitalization at that point of life, or when treatment becomes a burden. But as stated before, we are not there right now.
When in Arizona in February, I met the Hospice Liason who is a social worker, stated what I thought were incongruities, though wanted to hear what she had to say, and she had a counter for each of my concerns. My mom was eventually found to not be hospice eligible. After the 3rd and last rehab stay, she showed up again, called the primary, who had not seen my mom, and got authorization for hospice. She went to the house for a visit with my mom and sister, and my mom ended up signing the papers. I have had several conversations with this liason, and she is nice, insightful psychologically, but does not have the insight into the medical conditions that I do (I work in cardiology). For some reason she told my sister that I had given approval, as health care POA, though it is not activated. But I was not there hearing the details as explained to my mother. By the time I get things filtered to me, the facts sometimes get a bit twisted around.
I tried to call the RN today, but she was out and should call me tomorrow.
Walking Home, that app sounds great. One helpful item if hearing aids are not sufficient, is a pocket talker. It has a microphone and earbuds or a earphones. Talking into the mike, it goes directly to their ears and works well for those who can’t hear well with hearing aids. This works best for one on one conversations. https://www.amazon.com/Superear-Personal-Amplifier-Headphones-Discreet/dp/B000U7XJO2/ref=pd_sim_229_6?_encoding=UTF8& There are many models at different price points. I bought one a few years back for a friend at Radio Shack that was in the $40 range and worked not badly.
I talked to a lady at the gym last night. Her 87 YO mother (who has two daughters and a son) has a grandchild and her son living with her (niece to the gal I talked to). Turns out the sister got POA and has taken $$ from the mom, who has early dementia. The grandchild (who by choice became pg at 21 with no intentions of marrying the father to her child, and now is taking advantage of a lot of freebies with grandma but not really contributing much). This lady spends every Thursday with her mom and helps her with household duties, appts, overseeing what is going on. She sees a lot. The brother really doesn’t want to get involved. There are caregivers that come into the home too, and this lady also is seeing that her mom isn’t being taken advantage of while getting the services paid for.
One has to be pro-active. When it comes to money, some people definitely lose some of their morality and principles.
Regarding Hospice, we had two parents, one after the other, go on Hospice in SoCal. We had moved them to board and care homes and we went with the hospice that the B&C home preferred as I figured they would be all working together.
I did not understand how MIL qualified as she seemed no worse than she had been the last 5+ years, but talking to the orthopedic surgeon, after her broken hip precipitated all this, he said when people break a hip and move out of their home, they often just fade away.
For her hospice was a kindness, I had to arrange a medical stretcher transport to that ortho appointment, with hospice she never had the stress of having to go anywhere. Sadly, when she came out of SNF she had the beginnings of bedsores on her heels. The day she moved the hospice nurse showed me the two spots and said they would become sores soon, and they did, and the hospice people checked them regularly & offered a shower person, which did not help me, it helped the B&C. But the B&C people were great and if anything helped their day, then it helped MIL and if anything gave them a better feeling toward her, so much the better. She died 5 months after entering hospice, she just faded away.
FIL was different, he did IL>AL, he had been fighting his decline constantly, he actually got fired from the AL doctor for belligerance & threatening to sue. In the months before he began hospice, he did ED visits, he saw the cardiologist, got a nuclear stress EKG, saw the urologist, saw the PCP, saw the gastroenterologist, more tests, saw the hematologist, admitted for transfusions, etc. etc. So many medical tests, so many medical bills, so much Medicare money spent. Ah, but the ambulance rides for all the ED visits, yah, medicare did not pay for those ($1000-$1500 each)
It was an extremely stressful 6 months of him fighting his decline with medical care that was not making any difference.
He got kicked out of the AL, both because he was losing his ability to stand with only one person helping and because he was a real jerk about it 
We moved him to a B&C and I got him on Hospice. When I was doing that, I did not know if he would die that week, he looked so miserable, or rebound and last to 100.
He lasted 4-5 months on Hospice.
FIL was angry he could not use his own PCP, but the hospice people were good at dealing with that, they reviewed the initial care plan with his PCP and were able to tell him the PCP approved
Having hospice come to him was so great for us. No more ambulance rides, no more ED visits, no more exhausting himself on medical tests and appointments and everyone came to him in his room. That was great
But here’s the thing, for each of them, I signed the DNR and I chose comfort care only. One was 86 and one was 96, they had been moved out of their home of 50 years, they were done fighting, there was no quality of life remaining.
For your Mom, how hard do you want to fight things that come up? I would talk to your hospice (and there are probaby multiple hospice services available) and ask them, I don’t recall the details of the three levels of care, but I chose the least agressive, comfort only, You could choose the more aggressive level of intervention. Is that enough.
Interesting that some hospice experiences say the person keeps their doctor, I thought the reason Medicare paid hospice (and it was $5-6k monthly for the in laws) was that it put all medical decisions in one place and kept costs down by avoiding hospitals and tests?
Also, our hospice did review the meds and changed a few, more about comfort, not so much about prolonging life, but also not wanting to pay for expensive ones, By the same token, why they heck did the gastro put FIL on a $300 pill for reflux instead of omeprazole? That change was fine.
In home hospice support or in a hospice facility?
Not sure who you are asking Loookingforward, but for my in laws, it would be considered home hospice as it was in their board and care home.
Lookingforward, in mom’s case it is home hospice, but they contract out to two rehab/nursing home facilities if someone needs inpatient care, and they also use those facilities for respite for home caregivers.
Ironically, a good friend is in our very reputable local inpatient hospice right now, helping get the pain managed with her cancer progression. She very much needs them.
I talked to an RN today, as hers was not at work. The stories conflict, as she says we can keep the current meds, keep the primary, but care is overseen by their Dr. They do change some meds in time, if more in keeping with the goals of care.
Somemom, I appreciate hearing your story, and the detail about levels of care, which is new to me. It sounds like quite a time! Belligerence is so hard to deal with!
If up to me alone, I might agree to keep them, and keep a close eye on how things are going. However my sister is the one to have to get to the ER, she has built up some resentment against the hospice folks, and there are hoops to jump through in times of crisis to sign off of hospice. My mom seems to go with the flow.
Well, my folks are with my sis and MD BIL. They were at church and then at some point mom went limp and started shaking and having irregular heartrate. Afterwards, she was back to normal. This was similar to Thanksgiving incident when we called her the ambulance and she was taken to ER and hospitalized for observation overnite. A full cardiac workup including a nuclear stress echo and 2-week holter-type test revealed nothing.
The folks refused to have anyone called. Food was brought in and the 4 of them are having a quiet meal at the folks’ house. Another sis and her family will be having dinner they bring over with the folks tonite.
I suggested these incidents be journaled and shared with her regular providers so maybe they can figure things out. I doubt ER or the cardiologist would do anything different from last time.
Watching parents age it tough.