How do you know when to ask for hospice care?

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How do you know when to ask for hospice care?

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My mother will be 98 years old in May and resides in the memory care unit in an assisted living facility. She suffers from dementia, hypertension, high cholesterol, polyarthritis, muscle weakness, fatty liver disease, cholelithiasis, macular degeneration and glaucoma. The arthritis is so bad that getting her in and out of the car and into a wheelchair to take her to doctor’s appointments has her screaming in pain. The only prescription medication she takes is for her cholesterol (atorvastatin) high blood pressure (lisinopril and metoprol) and glaucoma (latanoprost). The only drug her doctor ordered for her arthritis pain is Tylenol (325mg) two tablets in the morning and two before bedtime. Her insurance does not cover the visiting physician who comes into the assisted living facility, so she has to be taken out every time she goes to her PCP, which is every 3 months, first for a blood draw and then for the office call. He will not prescribe a pain medication and the Tylenol does little, if anything, for her pain.
The facility where she lives does have a van that will take her to doctor's appointments but it costs $30. She has been in this facility for 3 years at a cost of $5,300 a month and at this rate she will run out of money in two more years and I will have to try to find a Medicaid facility for her. I am in my early 70’s and the stress involved with taking her to the doctor’s when she screams in pain getting in and out of the car and the fact that her dementia gets worse every year keeps me in a constant state of anxiety.
I have sister who is six years younger than me who doesn't even call her on the phone and has not visited her even once in the three years she's been in assisted living because she lives an hour and a half away and according to her, her back hurts when she has to be in a car for more than an hour.
Would my mother qualify for hospice care even though she has no life-threatening illness? Even if she could get pain medication for the arthritis would be a blessing.

Care Decisions Hospice Joint Pain Memory Care

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At 98 with dementia, she would probably qualify for the diagnosis of senile dementia of the brain. If you.verify with hospice that her drugs are to continue but that you have no intention of going further down the curative route, she may well be a suitable patient.

Unlike pcps,, hospice docs are expected to scrip lots of opiates and controlled drugs, such as Ativan. The whole original purpose was pain relief. Contact a hospice, preferably non profit, and avoid Vitas at all costs.

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Unless it would conflict with her other meds, I think it's a bit cruel of her doctor not to prescribe pain meds for her. (Tylenol doesn't do anything for me for even small discomfort such as a minor headache, much less arthritis! If that's all that is available, I just go without.) I wonder if her compromised liver is why he won't prescribe any. But at this point, I would think it is more of a quality of life issue.

It's time to talk to her PCP about hospice or palliative care - the visits to the doctor seem like unnecessary torture for the both of you. Explain to him that this 3 month routine is akin to torture and she doesn't seem to be gaining anything by it. At this point, her comfort is what should be priority.

I'm sorry that you're going through this and hope you get some answers soon.

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Thank you. This whole situation has negatively affected my life. When she cries out in pain like she does, it takes all that I have to keep from bursting into tears.

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Thanks for your advise. They do have hospice services at her nursing home. I will make an appointment with the director and see how it goes. I hope she qualifies.

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I think the doctor has to recommend her for hospice or somehow qualify. Medicare can cover house-calls, so call them to see if this can be arranged. Your mom should definitely be getting something more for her pain, at least on the days she has to travel for appointments. My mom takes 600mg of Tylenol for Arthritis when it bothers her. I think she can't exceed 1200mg per day. It does affect your liver and kidneys so maybe this is why the doc doesn't prescribe more, because of her fatty liver disease. Keep after her doctor for better care and pain relief.

Does her current facility not accept Medicaid? If not you may need to consider moving her to one that does while she's still on private pay...this is so she doesn't have to be on a waiting list, if this is an issue where she lives. Current residents get first dibs on Medicaid beds before "outsiders". You may want to consult with a Medicaid Planner for her state to make sure she qualifies when needed. In most states Medicaid doesn't pay for AL or MC.

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Personal opinion...It is never to early to contact Hospice.
They will evaluate her and if she does not qualify for Hospice you can ask about Palliative Care. They can also help with prescriptions as well as managing pain.
If at this time she does not qualify for Hospice (and I seriously doubt that would happen) once on Palliative Care the Team that sees her would be the first to notice when she would be able to transition to Hospice.
Make the call to the Hospice of your choice. Many facilities have great relationships with all the Hospice that are in your area and could give you some suggestions if you do not know what is available.

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My 92-yr-old mother has been under Hospice care for about 2 months now. She was not getting good care at her MC facility so extra eyes in the form of hospice caregivers is a welcome thing.

I had to think long and hard about placing her on hospice as, once she is on hospice, no diagnosing or testing is allowed to be done. Mom has recently taken on a very yellow skin tone which indicates to me that something may be wrong with her liver. The hospice nurse said that, even if that was true, all they could do would be to remove her from what few meds she is currently taking. Hospice would not administer a UTI test for a possible infection but just prescribed a broad-spectrum antibiotic for her. The goal for Mom now is comfort.

Her dementia has progressed so quickly and I think part of that is a result of the move from the MC facility to a Residential Group Home with 6 residents and two caregivers. She has stopped walking and talking and just about stopped eating and drinking. It is very sad and leaves me with such a helpless feeling.

The Hospice Nurse comes about once a week and I can text her if I need to, but she is very realistic about her goal for Mom's care. The aide still showers Mom three times a week and gets her dressed for the day (still don't know why they insist on getting her up if she is non-responsive.) Hospice provided a tall-back wheel-chair for her and they supply briefs and bed pads and wipes and meds that qualify as "not curative". The hospice doctor only comes to see her at 6 months and that is to determine if Mom still qualifies for hospice care.

Mom was having trouble breathing last Sunday and we called the on-call hospice nurse who came to check on her and put her on oxygen. The nurse asked me if I wanted to take her off of hospice and send her to the hospital in case she stopped breathing all together so the hospital could maybe revive her. Nope. I don't want my mother anywhere near a hospital. Besides, there is a DNR in place. So, you can go off hospice, get treatment, then go back on if you still qualify.

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Some very helpful information, thank you.

(2)

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Thank you for this information. It is amazing how much we don't know and how difficult it is to find the answers you need to know when you find yourself in my position.

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That's a very conservative Tylenol px. Why so stingy? I agree that Tylenol is no miracle when it comes to pain relief but an adequate dose taken preventively is better than nothing - until her PCP comes up with a better idea. What's the rationale for refusing to treat her pain? What's the alternative suggestion?

This is one of the most frustrating and exasperating aspects of the US healthcare system. Your mother has access to two licensed physicians. One her insurance won't pay for. The one her insurance WILL pay for won't prescribe her adequate pain relief. I don't know how you restrain yourselves, sometimes, I honestly don't - the longing to bang people's heads together would overwhelm me on these occasions.

Actually, thinking it through, I'm now even crosser. You're paying for insurance which doesn't cover the healthcare service she can access. You're paying for a facility's services, and their services aren't made available to her. And her doctor is paid by her insurer, and denies her treatment for her pain. Wouldn't it be nice to get all of these USELESS people in one room and ask them what they've got to say for themselves?

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I am not a doctor or nurse, but the screaming pain does not sound like arthritis. It sounds like she might have compression fractures in her spine due to osteoporosis. My grandmother suffered with this and was put on calcitonin for a number of years in her early 90s (she lived to 103). Its purpose is to increase bone density but it has a well-known therapeutic effect of reducing pain. Your mother is entitled to better care than she is getting. By all means have hospice evaluate her but maybe you also need to take her to a different doctor.

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Utmost sympathy from me. I have no answer (I'm in UK), but my mum's in a similar situation so I feel your pain. Mine has had osteoporosis for at least ten years, with at least three spinal compression fractures that caused her excruciating pain. Now her memory's gone too (probably dementia). Like yours, she's 98, and has been in a care home for a year. She's on an opiate patch, paracetamol (acetaminophen) and I think a bone med, but nothing else. She has no other medical conditions - but she's completely miserable and in pain all the time. Last week she had a fall, spent 12 hours in the ER 'being assessed' but X-rays showed no fractures, only bruising. I did see her the following day but she was fast asleep... I'm going again tomorrow, dreading it because it is so awful to see them in pain and there's absolutely nothing we can do. They say her mobility is even worse now, unsurprisingly, and I wonder how long they'll let her stay before she has to be moved to a nursing home. I wonder how much longer she's got to suffer like this... It's so cruel, and so painful, in different ways, for both her and me. So I wanted to say I feel your pain, too, Roxy50. Hugs xxxxx

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i don’t care how many conditions one has, there is no excuse for someone to be in so much pain. I concur with most everyone here. Dementia is a terminal illness and should qualify for palliative/hospice care. It breaks my heart that she has to be transported in pain every few months to get Tylenol. (My own mom, age 96 takes Tylenol Arthritis ER 650 mg (2 tabs 3 x day for a total of 3900 mg per day) and has for years (prescribed by her Care Home dr). At 98 we know there is much time left. Mine and my moms theory is to live in the least amount of pain possible. Good luck.

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My mother hated getting x-rays for her hip-very painful. She said she wouldn't get a hip replacement, so we stopped going to that Dr. She has cancer but said she would not be treated if it came back, so we stopped going to that Dr. We knew her stated, written wishes of DNR, no feeding tube, no surgery of any kind to prolong her life. Her last act was to refuse a pacemaker at age 93. She went on hospice and passed a few months later. Hospice will keep your mother pain free but you have to be prepared for them to not treat her for anything other than pain and to gradually reduce the medication she is on. When Mom was unconscious and the hospice nurse recommended a a course of action my sister's response was "it's not what we would've wanted but it is what my mother would've wanted". Knowing my mom's wishes made all the decisions easier.

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My understanding is the way to qualify for hospice is for a doc to say she likely only has six months or less to live (which doesn’t have to necessarily be true), and I’m sure the PCP would be willing to do that. Should she outlive the 6 months, she’d have to be recertified. Given the amount of pain she’s in, it sounds like hospice is the way to go. Good luck to you and your mother:

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Yes, she could qualify. Talk to her doctor about getting her hospice care. My mother, with advanced dementia, was falling and her facility kept sending her to the hospital. She didn't understand what was happening to her in the hospital and hated it. She hated going to doctor and dentist appointments. Her doctor agreed to recommend her for hospice (comfort care), and we added "no hospitalization" to her medical directives. I asked her opthalmologist if we could stop going to the eye appointments, as she couldn't respond to the eye charts. He agreed and kept filling her prescription. Hospice re-evaluates her condition every 6-months or so. You might want to contact your mother's insurance if she gets on hospice care. They may have some provision for her to use the facility's doctor to get "house calls" for her.

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Nancy, to what medical directives did you add the "no hospitalization" clause? Was it part of the hospice paperwork? My mom doesn't want to be taken to the hospital but does not qualify for hospice yet. We are in the process of getting her on "palliative care," which is a "step down" from hospice (at least in her area) and does not offer the same protection from being treated/removed from the home against her wishes (which almost happened last week). I'd like to build that protection into her medical documentation but my mom's attorney said it really wouldn't hold up in a living will, and I'm not sure where else to document it.

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First of all ask the facility where she lives if a visiting physician attends to patients there.

Immediately change her insurance to cover these services.

My mom has a visiting physician and I have also located a home visit lab & mobile xray service. Her insurance covers the labs but mobile xray is not covered. It still is well worth the pain, time, stress of needing to move her to an office. Mom is also using community palliative care services. No charge. Her facility should provide visiting services for dental, eye and podiatry.

Please check into these things for your poor mom. She will get monthly check ins and it will be a lifesaver for you.

God bless.

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Your mother is not particularly Hospice-ready. It is well worth $30 for a trip to the doctor to spare you the stress and anxiety. It may even be worth paying the in-facility doctor's fee for the same rrason. You are undergoing too much negativity to save small amounts of money. Your Mother's $5300 month is a lot less than many facilities where $7000-9000 is more common.

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My mom is in a memory care facility.
She has dementia, compression fractures from osteoporosis,
A fib, hypertension. She seems to be sleeping more during the day and I think the dementia is progressing lately. She hasn't been able to walk since before she got there 3 and a half years ago. She hasn't been able to stand for the past 2 years.
This happened during lock down with Covid. I was told they were changing her in
bed. All the moving can aggravate the fractures.

Also, eating less.
I asked the nurse if she thinks she would quality for hospice. My mom turned 103
in Feb. She said she should quality because she is over 100. Not true!
The hospice nurse and director evaluated her and went through her chart,
weighed her. I was told she doesn't qualify.
She would have to loose weight, fall multiple times, be taken to the ER etc.
She hasn't, thank God, been to the ER since last year when her fractures caused
severe pain that took her breath away. That is when we found out about the A fib.
The treatment for that is blood thinner which she is not prescribed because of her age. She has Tylenol for pain but she has to ask for it. She has dementia, people!
Hospice will evaluate her again in 2 weeks.
Some of the residents have been on hospice for years.

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I’m sorry you’re both going through this. As someone born with arthritis, I understand that kind of pain. I know just the thought of all it would involve will make you weary, but if it were me, I’d get another doctor. One who understands quality of life is the main thing to consider in a 98 year old patient.

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Even if you paid the $30 for the van, she would still be in pain. It's inhumane to drag out a 98 year old woman with all those disabilities for a "well" visit. Speak to her doctor about getting a phlebotomist to do blood draws at mother's facility. (My father had this done). If her doctor won't do this, find a cardiologist who will. Don't be afraid to change her medical insurance to one that covers all her present needs either. Otherwise, please reconsider paying for the attending doctor,

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Getting your doc to certify your mom hospice-ready is just half the battle. The other half is finding a good one which accepts your mom. Not all hospice agencies are the same and not all are willing to accept clients.

My husband is in hospice and getting him there was a exhausting. Two agencies turned him down because he did not meet THEIR eligibility criteria, regardless of what the doc said. The third agency accepted him. The services are fantastic.

Shop around. Good luck.

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A few things: My mother lived in a Memory Care ALF and the doctors came in THERE to see HER. No trips to see the doctor were EVER taken, and your ALF has some nerve charging $30 a pop on top of rent! SMH. Your poor mom should not have to schlep out of the bldg for doctor visits; that's part of what an ALF is good for; to have ALL services IN HOUSE! Is there no doctors coming in to see the residents there? If not, why not? My mother had labs, EKGs, echo cardiograms, doctors, dentists, dermatologists (for her endless warts), phlebotomists, all of them going into her MC to see HER!!! And it was all covered by Medicare and we had the co-pay of either $20 or $30, that was it. The dentist was full pay on her, though, but whatever; worth it to not have to schlep her out in a wheelchair!

So the doctor writes the order for hospice to come out & evaluate mom (I didn't read the responses here, so I'm sure it's been said already). Hospice has to find a viable condition that MEDICARE will pay for; my mother had congestive heart failure but it wasn't killing her, so hospice used "Senile Degeneration of the Brain" as the terminal disease that would meet Medicare requirements. The first time in November she was turned down for hospice; the second time I asked for an eval. was in Dec and I spoke directly to the nurse at length; told her of ALL mom's conditions and how she showtimed up a storm, in spite of advanced dementia, but that she had chronic pain and had been declining something awful the past 6 months. She was ACCEPTED on that 2nd evaluation, thank God, b/c she passed away 2 months & 1 day later. Hospice was great; they were able to give her pain meds and anti anxiety meds that kept her calm and pain free throughout her end of life experience. Plus they brought in a hospital bed, special wheelchair, Depends, chucks, everything was free to us. Your mother would benefit greatly from the nurse/cna/chaplain and social worker visits from hospice, not to mention the medications they can give her for pain management. Tylenol is a joke, really; I know, I have bad arthritis which is awful.

I really hope you can get these services in for your mom. Also ask the Memory Care ALF which hospice company they use most; that helps YOU b/c they work closely WITH the hospice company to facilitate the best care for your mom.

Best of luck!

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My mother's assisted living facility does have a visiting physician but her Blue Cross Medicare Advantage insurance does not cover them. In order to take advantage of that service I would have to pay $4,000 out of pocket and then when I met that amount all additional visits would be $40. This would then reset every year. She worked as a press operator for Chrysler Corporation for 30 years and gets her health insurance through the UAW. Since there was no ear protection when she worked in rather press room, she is profoundly deaf. The UAW sued Chrysler and won so they pay for new hearing aids, at no cost to workers whose hearing was damaged. This is why I have not shopped around for a different insurance. Without the hearing aids she would hear practically nothing.

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Your insurance change might be worth it. Get the Hearing aides, ditch the insurance after.

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Talk about hospice with her PCP who can order it. Tell Dr it’s too stressful to physically take mother out to Drs . Also ask for stronger pain meds. She don’t need cholesterol meds. That’s a waste. You should try to get her into skilled nursing facility now & not wait until last minute. She needs more care than memory care can provide. You’re not getting any younger either, so stressing yourself with Dr trips is not good for you. Take some tours of those facilities. You’re not alone with having the whole burden on you. Most of us have siblings who don’t help. Hugs 🤗

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roxy50: Imho, something seems to be amiss if your quite elderly, ill mother has to leave her Memory Care facility to be seen by her primary care physician. That's rich.

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For my Dad hospice came to his home for an evaluation, at no cost. He did not qualify, but a week later they did another evaluation. Dad had lost weight and wasn't eating much so they accepted him on the basis of declining condition.
Hospice doesn't have the "time frame till death" requirement any more.
It appears your mother has informed you of her wishes. It's crazy to have to force her to suffer so much to see a doc. Hospice would be a kindness. She'd get the pain relief she desperately needs, and you will benefit too. There is no cost and no time limit.
Best of luck to you.

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How do you know when to ask for hospice care?

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