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Post by Deleted on May 5, 2015 16:25:37 GMT
is not life.
As you know, my dad is in an assisted living facility for dementia and Parkinson. He has been there 8 months. It has been less than wonderful in my opinion, but my mother can not care for him. Most recently he was in the hospital for 3 days due to chest pains and shortness of breath. He had tests and it was not a heart attack. His test came back fine. The social worker told my mom he gets violent and is "very strong".
Last month there was an outbreak of scabies in the unit. He got it. He has lost weight. He is frail at this point. I and my mom are not thrilled with the care he is getting.
Her insurance co. called her to see about his latest hospital visit and spoke with my mom about having him evaluated for a hospice situation. They said if he qualifies after an evaluation he can go there and be cared for with dignity. Also the insurance will cover it as apposed to my mom paying $3000.00 plus a month for his care.
Has anyone had this situation for a loved one where they lived in the facility, but currently are not at end of life. Please give me the true picture. Thanks much.
**added info**My dad is 82. My mom, brother and I have already decided if he where to get sick, we are not going to prolong his life with treatments. He has no quality of life any more. I think the reason the insurance co. called with the info about the hospice is because my mom spoke at length with the hospital social worker with her concerns for him. Maybe the social worker submitted a report about his condition.
5/12/15*
The assisted living facility called my mom and said my dad is now down to 126lbs. She is going to call the hospice.
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Post by cindyupnorth on May 5, 2015 16:28:52 GMT
I would be leery about an insurance Co. advising my loved ones medical care, vs a Dr. I would have your mom talk to his Dr and see what they think. Hospice would mean he would be only comfort care med's. He would be DNR/DNI. if he would have a heart attack for real, there would be no CPR, and he would pass. No life saving measures would be done.
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akathy
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Post by akathy on May 5, 2015 16:37:02 GMT
It is my understanding that to qualify for Hospice a patient has to have a doctor's diagnosis that they have 6 months or less to live.
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Post by cindyupnorth on May 5, 2015 16:39:17 GMT
Kathy, that is no longer true.
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lesley
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Post by lesley on May 5, 2015 16:44:52 GMT
My brother had several hospice stays before his ALS became debilitating, and on one of those stays he was given treatment which extended his life for a further year. I understand what cindyupnorth is saying about him only receiving meds for pain relief and to keep him comfortable, but if he has dementia and Parkinson's, wouldn't you want to have a DNR in place anyway?
That sounds really hard, but I'm not finding the right words to use here.
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MerryMom
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Post by MerryMom on May 5, 2015 16:52:30 GMT
linkHospice Benefits The Hospice benefit is an optional state plan service that includes an array of services furnished to terminally ill individuals. These services include: nursing, medical social services, physician services, counseling services to the terminally ill individual and the family members or others caring for the individual at home, short-term inpatient care, medical appliances and supplies, home health aide and homemaker services, physical therapy, occupational therapy and speech-language pathology services. Individuals must elect the hospice benefit by filing an election statement with a particular hospice. They must acknowledge that they understand that other Medicaid services for the cure or treatment of the terminal condition are waived. Individuals may, however, revoke the election of hospice at any time and resume receipt of the Medicaid-covered benefits waived when hospice was elected. A hospice provider must obtain a physician certification that an individual is terminally ill and hospice services must be reasonable and necessary for the palliation or management of the terminal illness and related conditions. A hospice plan of care must be established before services are provided. There are four levels of hospice care: 1) routine home care where most hospice care is provided; 2) continuous home care which is furnished during a period of crisis and primarily consists of nursing care; 3) inpatient respite care which is short-term care and intended to relieve family members or others caring for the individual; and 4) general inpatient care which is short term and intended for pain control or acute or chronic symptom management which cannot be provided in other settings. The national hospice reimbursement rates for these four levels of care change annually. Medicaid hospice rates are based on the annual Medicare changes and are typically a little higher due to offsets attributable to Medicare coinsurance amounts. Beginning March 23, 2010, with the enactment of the Affordable Care Act, Medicaid and CHIP-eligible individuals under age 21 who elect the hospice benefit no longer have to waive services for the cure or treatment of the terminal condition and can receive both curative care and hospice care for the terminal condition. As an aside, I guess the propaganda about ACA "death squads" were inaccurate.
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Post by cindyupnorth on May 5, 2015 16:57:01 GMT
As aside, as someone who works in PT, and if we would get a order, and the patient was on hospice, we would only see them a few times. Either to show the caregivers what to do, or to make sure they are functioning safely. We would not cont to see them for any length of time.
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Post by littlemama on May 5, 2015 16:59:59 GMT
2 years ago, when my stepdad entered hospice (due to dementia and general failing health), a doctor had to evaluate him and state that he had 6 months or less to live. When the 6 months were up, he would have been reevaluated and hospice could be renewed. He passed away at right around the 6 month mark.
I think he would only qualify for hospice if the evaluation showed that he was near end of life, which with dementia, can be sooner than a lay person might think.
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Post by jackie on May 5, 2015 17:02:29 GMT
"I would be leery about an insurance Co. advising my loved ones medical care, vs a Dr."
The people at an insurance company that would give that kind of advice ARE medical professionals. Case managers, doctors and clinical social workers can be wonderful resources. I wouldn't discount their opinions just because the work for the insurance company.
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Post by rst on May 5, 2015 17:39:43 GMT
If you take the hospice route, he would be getting palliative (reduction of suffering) care, as opposed to curative (trying to restore normal function). With his current issues, that's appropriate. Another thing to remember is that DNR and DNI are not necessarily absolutes. You can work with a physician on a POLST (Physician ordered life sustaining technology) order that you are comfortable with. Additionally, it is possible to change a POLST if his situation changes.
My son has a modified POLST and is on palliative care/hospice. In his case, that means that we agreed with his physicians that it's not in his best interests to have chest compression or intubation, but we are comfortable with IV fluids and nutrition, medications, O2 and bi-pap. We still treat him when he has a viral infection or an illness or accidental injury from which a recovery is a reasonable expectation, but we would not try to prolong life when his system is shutting down. All of which is much easier to say and distinguish in the abstract, but hard in the moment.
Hospice and palliative care teams are amazing about helping families work through the whole process of making care decisions for a variety of scenarios. They are also going to be much more focused on comfort and a positive state of mind, quality of life and a dignified death. So therapies might not be about restoring normal function, but they would be about making him comfortable and ensuring that it's possible to keep him clean and well groomed. They would ideally be identifying what makes life good for him, and maximizing his personal definition of quality of life, even if that might be in conflict with keeping him breathing as long as possible.
In my son's case, hospice care looks like 24 hour access to home nurse visits, weekly nurse assessments in the home, social worker support to access services, weekly social visits from a chaplain (who reads books or plays games with Dan) counselling for family members as needed, and volunteer services, which can be anything from help folding laundry to running to the grocery store.
I think it's a good thing to meet with a hospice team and find out if your dad qualifies, what they can offer, and if you're comfortable taking that route. While there are some Parkinsons's treatments that may be taken off the table for him if hes on a hospice track, it doesn't sound like he was a candidate for surgeries or drug trials anyhow. A frank look at the pros and cons for him may help you decide.
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Deleted
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Post by Deleted on May 5, 2015 20:02:49 GMT
rst, thank you for your very comprehensive answer. I believe this is the type of care my dad is ready for. There would be no restoring normal functions for him. His dementia is not reversible.
I am sorry about your son.
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Post by janniepea on May 5, 2015 20:17:09 GMT
My father in law is 89 and under hospice care now, but not at end of life care, but palliative care. What a blessing and a relief. He was constantly going to the doctor until he had a pretty significant stroke in December followed by 5 weeks in the hospital and rehab. He was home for one day in pretty good shape then came down with the flu and he had to go back to the hospital followed by rehab again, this time for a little over 3 months.
The services he receives are wonderful. He's bedridden now but he's home with his wife of 65 years and happy to be home. Whatever he needs, it's there. We know that he's at the end of life, given his age, but with many more medical problems we are so grateful for hospice care.
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Post by jenjie on May 5, 2015 20:47:41 GMT
My stepgrandmother was in hospice care for more than a year. I'm not sure how that came to be. She was already living in an assisted living facility and hospice took over her care. My mom can't say enough good about their care of her.
In the few days my dad was in hospice care before he passed, I was able to see that there is something special about someone who chooses to work in hospice.
My sister in law, whose mom was previously in hospice, said it well. They don't hasten death and they don't prevent it. they do everything they can to keep the patient comfortable as well as provide comfort to the family.
One thing else, in the hospice wing where my dad was they were great about visitors. I shared here about how we brought thanksgiving dinner and pretty much the whole
Family was there. People have celebrated graduations and other events there with their loved ones. So don't feel that hospicw automatically means isolation for your
Dad.
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Post by Deleted on May 5, 2015 20:49:55 GMT
My stepgrandmother was in hospice care for more than a year. I'm not sure how that came to be. She was already living in an assisted living facility and hospice took over her care. My mom can't say enough good about their care of her. In the few days my dad was in hospice care before he passed, I was able to see that there is something special about someone who chooses to work in hospice. My sister in law, whose mom was previously in hospice, said it well. They don't hasten death and they don't prevent it. they do everything they can to keep the patient comfortable as well as provide comfort to the family. One thing else, in the hospice wing where my dad was they were great about visitors. I shared here about how we brought thanksgiving dinner and pretty much the whole Family was there. People have celebrated graduations and other events there with their loved ones. So don't feel that hospicw automatically means isolation for your Dad. Thank you for sharing. actually feel he is more isolated in the assisted living facility at this point. I know the person my mom spoke to was telling her my dad would have his dignity, be cared for and comfortable. |
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Post by papersilly on May 5, 2015 21:31:08 GMT
It is my understanding that to qualify for Hospice a patient has to have a doctor's diagnosis that they have 6 months or less to live. I don't think that is necessarily true anymore either. when we entered hospice with my mom, the nurse told us there are people who are in hospice for years and those who go into hospice and are released a few months later and then go back in. for my mom's health care provider, hospice patients are evaluated 6 months to determine if they still qualify to remain in hospice. |
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Post by jenjie on May 5, 2015 22:05:45 GMT
My stepgrandmother was in hospice care for more than a year. I'm not sure how that came to be. She was already living in an assisted living facility and hospice took over her care. My mom can't say enough good about their care of her. In the few days my dad was in hospice care before he passed, I was able to see that there is something special about someone who chooses to work in hospice. My sister in law, whose mom was previously in hospice, said it well. They don't hasten death and they don't prevent it. they do everything they can to keep the patient comfortable as well as provide comfort to the family. One thing else, in the hospice wing where my dad was they were great about visitors. I shared here about how we brought thanksgiving dinner and pretty much the whole Family was there. People have celebrated graduations and other events there with their loved ones. So don't feel that hospicw automatically means isolation for your Dad. Thank you for sharing. actually feel he is more isolated in the assisted living facility at this point. I know the person my mom spoke to was telling her my dad would have his dignity, be cared for and comfortable. I guess that would depend on people coming. My mom didn't want us to visit her mom because she wanted us to remember her the way she was before. With my dad we knew he was actively dying and we made sure to be there as much as possible. That was another thing, the hospice nurse was great about letting us know if she felt it was "safe" to go home and get some rest, and on the night he passed she encouraged us to stay. They know the signs. If you want visitors for your dad, get the word out. |
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Post by theroadlesstraveledp on May 6, 2015 0:20:30 GMT
Some assisted living facilities will allow hospice to come and take care of the patient there. That was something we looked at when we sent my grandfather, who also had Parkinson's to one. This isn't something we did immediately because my grandpa perked up in the assisted living facility and was having the time of his life using a walker, and eventually a wheelchair. He was in and out of the hospital with other things going on such as; dehydration, and an infection from a scratch. None of those kept him down for very long. While he did have Parkinson's Dementia, as well he was usually lucid as long as he was taking his meds regularly. They have made strides with some of these drugs and they do help. Are they giving him his medications regularly at the assisted living facility? Because if they are not, then it would be wise to talk to his doctor about that as well. Every four hours is what is recommended for Parkinson's.
You know your fathers' condition better than I would. Depending on where he is in the disease process of Parkinson's, and other health problems he may have, it may not be a bad idea to talk to his doctor about hospice and palliative care. There isn't anything wrong with seeing what your options are (I noticed that you have already started this.) I wouldn't totally discount the insurance companies' opinion, and would talk to his doctor, and the case manager at the assisted living facility. If you are not happy with his care have you talked to them about it? The truth here is the more you are involved in his care at the assisted living facility, the better the care he will receive. This is a proven fact. I say this because I have been there, and we didn't always approve of the care we got but when we started to ramp up those visits things changed. If you feel that more visitors will help then by all means make a schedule with family members and friends and use them as your eyes and ears as well.
As I said we didn't enter hospice with my grandfather because we didn't think he needed it at the time. The idea wasn't entertained until he had a sudden stroke and the doctor who treated him was talking to us about hospice. It had only been 24 hours from the last time we saw him. Unfortunately, he never recovered from the stroke so we never finished the process.
Many people have different opinions about hospice and sometimes think that it is a bad thing when in reality it allows someone who is dying to be comfortable, and supports the family members as needed. I agree that this doesn't mean isolation from others at the facility. There might be other people there who could be on hospice as well.
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Post by Deleted on May 12, 2015 19:51:40 GMT
mini update for 5/12
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Post by papersilly on May 12, 2015 19:57:29 GMT
just from our experience with hospice, when they come for the initial evaluation, ask any and all questions you have about the service they will be providing. engage in the process so your dad can receive the maximum benefit and comfort from it. get to know all the providers who will be part of your dad's hospice team so you are comfortable going to them with any concerns or questions you have as time goes by. my thoughts are with your family and your dad.
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Deleted
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Post by Deleted on May 12, 2015 20:02:03 GMT
just from our experience with hospice, when they come for the initial evaluation, ask any and all questions you have about the service they will be providing. engage in the process so your dad can receive the maximum benefit and comfort from it. get to know all the providers who will be part of your dad's hospice team so you are comfortable going to them with any concerns or questions you have as time goes by. my thoughts are with your family and your dad. Thank you papersilly. Could you provide a list of questions you would ask? I am afraid I may miss something. |
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Post by papersilly on May 12, 2015 20:13:21 GMT
I'm sure there are many people here who could contribute to the hospice questions but here are some of mine:
-how often will the doctor come
-will the same nurse be coming each week
-how often will the nurse come
-what other hospice workers will come
-what if we need meds, who will call that in and will it be dropped off here
-what if we need additional medical equipment
-what if he gets sick with something not related to his current illness. what is the protocol?
-what kind of measures will hospice be administering to him
-what additional meds will he be on
-what if he can't eat anymore, what is the procedure for having a feeding tube (or not)
-what is the 24/hour help line for hospice
-what if the family needs additional help while he is in hospice care
-what other services can hospice provide
-what physical signs or symptoms should we be aware of as his condition changes or deteriorates
-what do these signs or symptoms mean
-what happens during end-of-life
there are more questions I'm sure I'm missing at the moment. it's been 5 years since my mom was in hospice. but our hospice team was great. I can't say enough good things about them. the nurse and home health care provider were the same ones that came each time so they became part of our lives and our routine. hospice was great in educating us about end-of-life matters. they kept my mom comfortable until the end.
I hope you and your family find some measure of solice with any assistance that hospice can give your dad.
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Deleted
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Post by Deleted on May 12, 2015 20:15:41 GMT
Thank you
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Post by Deleted on May 12, 2015 20:28:26 GMT
My dad had hospice visit him at the assisted care. One thing my mom was upset about was that they discontinued his PT. It was hard for her to understand and accept that he wasn't going to get better, and that the PT wasn't going to help him anymore. Other things to consider: do you have end of life directives and medical proxies for him? Do you want him to have feeding tubes, breathing assistance, fluids, etc? Would he like religious support? Most hospice groups have chaplains on staff.
They were really good to my dad and my mom. The nurse and social worker were outstanding -- kind and helpful and all around nice people. Their entire reason for being was to make sure that my dad was comfortable and taken care of.
Good luck to you with such a difficult situation. And big hugs to you.
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Post by rst on May 13, 2015 1:01:37 GMT
You might ask hospice about how they deal with life sustaining technologies, and ask them to help you think through what measures you as a family want to see used for sure, which may be conditional, and which never.
So for example, in my son's case, after talking with specialists who know him well, we agreed that we would definitely continue tube feeding and hydration. We are ok with using warming or cooling technology (temp control is a huge issue for him). Conditionally, depending on prognosis and what's going on, we are ok with antibiotics, IVs for hydration, blow by O2. We absolutely do not want chest compressions, trach, or intubation. In our system, that's all formalized in a document called a POLST (Physician Ordered Life Sustaining Technologies.)
I would also ask them to help you understand the lines of communication. So who do they report to in the family, who are they authorized to contact in his medical team, what's the flow of information -- do they contact each family member with updates, or do you need to have a communications officer elected in family ranks to take that on?
Then -- this is a sensitive one, but I'll put it out there, because frankly, it's useful to address before a time of highest stress. Can they give you contacts or supports in terms of burial or cremation options, and what steps can the family take now to make the situation easier down the line?
I think it could also be useful to get input from them as to what situations are reasonable to go to the ED, what are issues that should be dealt with by regular clinician, and when is it ok to continue his care at home with hospice nurse supports.
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Post by lindywholoveskids on May 13, 2015 12:30:24 GMT
my MIL, mom, and FIl all had Hospice visit them in Skilled Nursing. they were wonderful in all cases, and each was different.
What I loved with both my mom and FIL was that the spiritual volunteer or chaplain respected my Jewish religious practices. Neither my mom nor my FIL were able to participate in prayers, but I think it didn't matter,..they were comforted.
My MIL was just qualified for Hospice about a month ago. she's in the late stage of Alzheimers and also they think she has uterine cancer.
there is just comfort care, and they are continuing her meds now. she had been reduced about a yr ago when she went from 24/7 care at home to the Skilled nursing non profit wonderful place. Everyone is fantastic with her. she can't talk but she wants to hug people and they love her a lot.
we don't know when she will die, but she will be 98 in July.
When her doctor prescribed Hospice, the wheels started moving. we met with the intake RN there, and she examined her. we have talked to the Social Worker but not met either her or the nurse that comes.
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Post by lindywholoveskids on May 13, 2015 12:32:58 GMT
Oh, there is an end of life booklet that most Hospices have. It answers many questions.
When the patient can't eat anymore, or doesn't want to eat, no feeding tube is put in. that's too invasive.
My MIL will have no tests done anymore.No labs, and certainly no trips to the ER.
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Deleted
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Post by Deleted on May 13, 2015 14:07:00 GMT
You may want hospice care for him. My mom is in hospice now. She has emergency access to doctors and nurses round the clock. She has home care coming out 64 hrs a month and we may be getting more. She gets great easy access to medications (the good stuff). I am able to call her GP's office, talk to his stupid MOA (who is stooooooooopid btw) and still get morphine ordered for her and not have an office visit. We do NOT have an DNR for my mom. She is still please resuscitate. We get counselling if we want it. We get lots of care for my dad and I. You may want to look into this. With  |
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Post by mikklynn on May 13, 2015 14:08:10 GMT
I'm sorry. Sending you cyber (((hugs))).
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