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Terry1182 Posted October 2021

Anyone finding it difficult to get advice from your parents' doctors on finding out about getting palliative care…My mother is sinking slowly.

At 92 My mother is slowly deteriorating….She has a pretty strong heart but suffers from Alzheimer’s..A cancer survivor… is now suffering from a pre-cancerous painful area surrounding her Vulva area…( it is not an option for surgery)…My sister keeps a constant watch on this area to keep it clean and medicated..My Mom sleeps very little, doesn’t have any type of appetite (although My sister does mange to get her to eat) and of course not really getting enough fluids! Everything is a struggle to get her to eat or drink..My Mom is now crying thru most of the night saying she is in pain, but during the day very rarely complains..My sister spends 2-3 hours a day just getting her up, bathed, dressed, fed and forcing her to take her meds…She is home all day, every day just caring for my our Mom….I truly believe My Mom is slowly dying and we cannot get help from any of her doctors on how to proceed with caring for her at home with the help of Medicare… So, any ideas would be of great help…anyone know how to proceed with help from Medicare…

Dantonio Oct 2021
Yes! I know it's possible somehow to force my mother into a memory care facility being her guardian, but everyone I talk to just tells me to trick her into going, and then they will distract her and I can leave her, but, that's not gonna happen, she won't even get in the car with me. She's so paranoid, she was up last night the entire night ripping up old documents in her room, and then about an hour ago, came out to the kitchen and soaked all the tiny pieces of paper in water...I would love some advice on how to get her there by force... She's ruining my house, c my family, even my marriage might be in jeapordy, had I known it was going to be like this, I would have never let her stay here, the plan was for me to help her, but the second she got here from southern New Mexico, to Northern Minnesota, she locks herself in her room, and won't let me help her at all, that's why I had to petition the courts for guardianship.
I hope you get the advice your looking for.

cxmoody Oct 2021
I called Hospice first.

I had met the chaplain at my mother’s Memory Care. I was very impressed with his manner.

THEY contacted the doctor at the MC.

Ours is a faith-based hospice company. Others that interest you may or may not be.

You can call and speak to as many companies as you want. You don’t have to have a doctor’s note to make these calls.

Before my mother moved to Memory Care, her primary doctor was ZERO help in caregiving information. I just don’t think they know that much about it. Even though this was a doctor for adults, her focus was on meds and moving on to the next patient in her busy practice. Not complaining. This was just the reality of situation.

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Grandma1954 Oct 2021
Contact the Hospice of your choice. They will contact the doctor to get the appropriate information and records.
Many doctors do not like to refer to Hospice or Palliative care because many see it as a "failure", doctors are taught to CURE not on how to allow a person to die with dignity and a better quality of life in the last months or in some cases years (or days) of life.
And...there are 2 basic types of Hospice.
FOR profit and
NOT for profit.
do your research, look at reviews and interview them just like you would any other medical service.

cwillie Oct 2021
The number one regret I hear from people about hospice is that they left it until much too late. People don't need to be at death's door to qualify, in fact it can improve quality of life so much that many who choose hospice earlier actually live longer than those who don't.

notgoodenough Oct 2021
How far into ALZ is your mom? Can she advocate for herself yet, or is she too far into the disease? If not, do either you or your sister have POA for her? Did mom ever fill out EOL directives?

Sometimes, you have to be insistent with the doctors, for all sorts of different reasons. Having paperwork in hand will make things easier sometimes; sometimes you just have to be the "squeaky wheel" to get results.

I would start by you and sister writing down SPECIFIC ways that mom is starting to fail: giving the doctor a vague "she's doing worse" is not as effective as "Monday. she only was able to get out of bed for an hour; Tuesday, she only ate about 4 ounces of food; Wednesday night she cried from 2 AM to 5 AM constantly that she was in pain..." and so on. Because using terminology like "she's doing worse" is so very open to interpretation that doctors can let the comment pass by without doing anything. I found, when dealing with my mother's doctors, it always got more attention and better results if she or I gave very specific details.

If her doctor(s) still refuse to honor your request for a hospice/palliative care evaluation, call around to the various companies and talk to them about what's going on. They often can help with any logjams that mom's doctors might be creating, even if they're doing so inadvertently.

I hope you can get her doctors to agree to hospice/palliative care; it will make a world of difference to her and to you and your sister.

Good luck.

pheonyx Oct 2021
either find another doctor or be persistent. it is hard but remember that your mother has no one else to advocate for her. i am inclined to also agree with cwillie on the hospice thought so she wont be in pain but is she is still trying to eat and drink....
additional thought, to relieve you and your sister a bit medicare should cover an in home nurse. maybe not 24 hr but some relief

cwillie Oct 2021
I would skip asking about palliative care and have her evaluated for hospice instead, they at least would provide her with decent pain meds.

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