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.
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.
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.
We’re there with my dad, no ability to know how long he’s going to be with us.
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.
Anyway, worth a shot. See if his primary Dr. will do a referral to a hospice company. Sometimes they can help move things along. If they do an evaluation & say he doesn’t qualify yet, ask what specifics they are looking for where they would approve him. I believe there is a waiting period (not long) before you can have him assessed again, but they should let you know what that is. Most hospice companies are very helpful, but some are not trained as much with dementia patients that will live for awhile. If one doesn’t work out, try a different company & don’t be afraid to ask questions about their dementia training.
if you are offered hospice care for a loved one I would highly recommend that you accept.
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
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?
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!!