For a dementia patient, when does hospice become an option? Or even palliative care?

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For a dementia patient, when does hospice become an option? Or even palliative care?

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My mom is stage 5, getting close to 6. I just want to know when we can stop her taking so many meds. Like for RA, for example. Does this need to be treated? I haven't talked to the LTC doc about it yet. I also want to be 110% clear that no heroic measures of any sort are to be taken and I think hospice would make that obvious. I don't want to do anything to extend her unhappy life with this hellish dementia. All I care about for her now is to be safe and pain free.

Alzheimer's & Dementia End of Life Hospice Palliative Care

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Palliative care as soon as possible. They will discuss all meds. She can still get treatment, more access to care, and can still be hospitalized and treated if chosen. RA drugs are often crucial for pain relief, but ALL drugs will be spoken of with them. They will help you to make the best decisions re Hospice care when appropriate also.

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Reply to AlvaDeer

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Thanks. I'll look into getting her on palliative care. She is going to be moving soon to a very nice facility near me and since it's in a different state (we live on the border) it might be more prudent to do it once after she moves.

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My dad had dementia and various other medical issues including suspected bowel cancer and suspected metastasized skin cancer, but no definitive diagnosis of anything that would lead to an expectation of 6 months or less life expectancy, which I believe is the standard for Medicare for hospice. I asked his geriatrician about hospice. He said he could not do the referral himself. My dad was lying like a corpse with his arms folded, refusing to eat or drink. Would not cooperate with bathing or changing his clothes. Largely incontinent. My mom was not willing to put him in a SNF but also could not really care for him at home herself.

The geriatrician said to take him to the hospital, where my dad told everyone he encountered that he wanted to die and why couldn’t they euthanize him. He actually perked up and became a lot more alert and talkative while there, just from the intravenous fluids. I am grateful for some of the conversations we were able to have that day.

Anyway, he had been losing tremendous amounts of weight and they diagnosed adult failure to thrive which was the key to the hospice referral in his case. I think the other way would have been to get a definitive diagnosis of terminal cancer, but he didn’t want to cooperate with the tests the various drs were calling for to confirm the diagnosis.

I am very grateful to hospice. They did switch him to palliative medicines only at that point and no more need for Dr appts. He lived another 4 months at home and spent only the last 3 nights of his life in a hospice facility. That too I am very grateful for as he had round the clock oxygen and morphine and multiple people caring for him around the clock. Best wishes to you.

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Reply to Suzy23

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The question to her medical team should be does the RA meds reduce or keep pain at bay?
Only give meds that help keep her comfortable. Some might be curative and keep her out of pain.
Keep her out of pain even if it extends her life. That’s okay, Right?

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Reply to 97yroldmom

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I had mom evaluated for hospice twice. The first time she was denied bc she wasnt losing weight. 🙄 The second time, a few months later, i spoke to the nurse doing the evaluation FIRST. I told her all about mom and her dementia, her myriad conditions, etc. Otherwise mom might Showtime her way right thru the evaluation once again! This time she was approved, under the Medicare code of Senile Degeneration of the Brain. Good thing, too, bc she died 2.5 months later!

Speak to moms doctor about writing an order for a hospice evaluation. Palliative care does review all the meds a patient is on, but tends to add IN prescriptions. If you feel moms on too many, ask PC to remove the ones that are not offering her pain relief or depression/anxiety relief.

Good luck!!

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Reply to lealonnie1

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Hmm, I don't know if my mom is losing weight or not. At the time your mom did get approved, what was her dementia like?

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My Mom just passed at 98 under the care of hospice. I don’t know how we would have done it without them. Under their direction my Mom was allowed to pass quietly and at peace.
if you are offered hospice care for a loved one I would highly recommend that you accept.

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Reply to jbramwell

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When the time comes, I definitely will. I don't see any point in extending a horrible life. I never want to live with anything close to what she's got. Noooo!

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She wouldn’t be put on hospice just because of advanced dementia. There is certain criteria that must be met. My husband with dementia had stopped eating and was losing weight. He also was in and out of the hospital for various infections including sepsis. I made the decision not to send him to the ER anymore after I witnessed the torture he was subjected to, the tests, prodding, jabs etc. and just let him be treated at the SNF he was in. He was on hospice for about one month before he passed.

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Reply to JColl7

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I am not letting her go to the ED anymore, unless she has a broken bone or excessive bleeding that requires stitches. It is so hard for her when she goes to the ED. So confused. So many tests that all come back as negative. Such a waste of time and money.

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Call the national Hospice organization and ask to speak to someone at a local Hospice Center.

Sacramento HQ

2020 West El Camino Avenue
Sacramento, CA 95833
Phone: (916) 440-8300
National Hospice And Palliative Care

Main Administrative Office Address:

302 Cherry Ln
Manteca, CA 95337

HCAI ID: 406391391

Facility License Type: Home Health Agency/hospice

License Category: Hospice

Facility Level Description: Parent Facility

And speak to her MD. S/he should have already discussed this with you / the family / who has legal authorization to make these decisions.

Gena / Touch Matters

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Reply to TouchMatters

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My mom has late stage dementia and her Medicare primary care doctor referred her to hospice. She can’t do anything by herself, she rarely talks, needs assistance to walk and she eats normally. When the hospice nurse evaluated my mom, my mom didn’t say anything until the nurse mispronounced her name and my mom corrected her. The nurse was laughing but she said that mom almost didn’t qualify. I asked the hospice nurse if they canceled hospice because I know someone else with dementia whose hospice was terminated when she started eating again. The nurse said that their company doesn’t cancel hospice for dementia patients but some other companies do.
She’s been on hospice for 5 months. A nurse visits once a week for vitals, a CNA assist with showering her Monday through Friday, a chaplain visits about once a month or every other month, the social worker and doctor visited once. They send cheap quality supplies weekly; a pack of diapers, wipes, bed pads, cleanser, and ointment. Since what they send is not close to enough, I still have to order her usual supplies as before.

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Reply to NaturalCharli

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My father (age 84) was evaluated and approved for hospice at the memory care facility by the hospice company they used. He had vascular dementia with late onset Parkinson-ism (wheelchair bound). The goal was to keep him out of the hospital. They can do many "hospital" tests right in his room. They gave instructions to the medical staff that were customized to his needs. Hospice will go over the patients end of life goals and have those tough conversations that some family members are not willing to discuss. I was very impressed and so grateful for the kindness and compassion!

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Reply to Caregiver2024

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My mother (97) has been under Hospice care for about 18 months. She lives with me and I'm her only caregiver.

She was formally diagnosed with dementia by her former PCP in January 2020. When he got tired of dealing with her and told me to find another doctor, I told him to refer her for a palliative assessment.

So she moved under Palliative care but when she contracted an upper respiratory infection, Hospice came to evaluate her and she qualified.

The nurse visits comes to check on her every week. A social worker comes every 6 weeks and a Nurse Practitioner comes every 6-8 weeks to reassess her. My mother is declining, and although it's typically small changes, it does keep her qualified for Hospice under Medicare and her Medigap supplement.

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Reply to southiebella

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So do you care for her at home? Do you get a break? I am caring for my mother she is 83 on Hospice I am her sole caregiver.

For a dementia patient, when does hospice become an option? Or even palliative care?

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