Moving Mom to palliative care. Has anyone been in this position?

i have walked in your shoes. Metastatic breast cancer is what my mom was dealing with. Hospice was definitely the right way to go. Even if she took all her meds the cancer was still going to kill her. I placed the goal of care on pain and anxiety control. I promised my mother I would not let her hurt or be afraid. I also knew that toward the end in order to keep that promise she would have to be sedated or else she would have been in terrible pain. So there was no more blood pressure pills, diuretics, no feeding tube, no more emergency room visits. It was hard as I am a nurse and geared towards wanting to do “everything”, but there comes a point where “everything” isn’t the best thing to do. She was comfortable, clean(did have a Foley catheter to help with that). Eventually an IV for pain meds when she couldn’t swallow. I still feel guilty but I can’t cure cancer nor can I reverse old age(she was 83).Don’t beat yourself up, you have done what was in your power to do.

At this advanced age I would strongly suggest hospice care now. Palliative is a beginning step. If Mom isn't wanting her medications her rapid decline is inevitable, and is somewhat dependent on whether she has left heart failure, right heart failure or both. Left heart failure is much more quickly and unexpectedly lethal because the fluids retained are in the lung, hence making breathing difficult to impossible. Right heart failure tends to let fluids accumulate more in the peripheral vascular system, swelling feet, legs, abdomen. Each patient has a reaction as individual as his or her own thumbprint to this withdrawal of medications due to variations in individual heart, overall health, health of other major systems. I wish you the best of luck and would coordinate with palliative to let you know when it is time for hospice care.

My mom has been on hospice for six months and refuses her medications frequently. It hasn't affected her much except her heart rate is elevated when she doesn't take them, so I wouldn't necessarily expect her to go downhill as fast as you think.

I agree with Alva that hospice is the better choice at this point, and don't hassle her about the meds.

Your profile says that mom is in independent living. Is she capable of living alone with Alzheimer’s disease? You may want to seriously consider a facility for safety reasons.

My mom’s doctor suggested palliative care in the beginning of her decline. All this really means is that your mom won’t be as proactive regarding her medical condition. For instance, no surgeries would be done, no treatment of cancer, etc.

Hospice care is a better option in my opinion. My mom recently died in a hospice house house. She received excellent 24/7 care. She was initially kept on her Parkinson’s meds. She was also given anxiety and pain meds. At the end, her Parkinson’s meds were dropped. Hospice care is comfort care. You will have the advantage of a very knowledgeable nursing staff that are fairly accurate in determining what is needed at the time. There will also be a caregiver staff, social worker and clergy to assist the patient and their family. I am very grateful that my mom received care from a truly wonderful hospice organization.

I would advise to research all hospice organizations in your area. If possible, please choose one that has an ‘end of life’ house or facility. Check all stipulations for acceptance. Each hospice organization has their own set of regulations.

Wishing you and your family all the best.

Why not see if Hospice would be an option. She would get more services and more help as well as supplies and if needed equipment that will help make her more comfortable.
But transitioning to palliative care is a good first step. And you do not even need to tell her if you don’t want to or if you think she would be upset.

In doing research for another poster, I saw that some hospice organizations offer more than one level of hospice care. You might want to look on the Medicare.gov site for your city state or zip and find the various hospice providers.
If you look under level of care you will see that some only provide one basic level while others provide several levels. If you choose one that only offers in home residential hospice for stable patients, ask what happens when the patients condition advances. Others offer multiple levels. They all identify as hospice.

https://www.medicare.gov/care-compare/resources/hospice/levels-of-care

Here is a link that might help.

Many hospice agencies now take dementia patients and palliative is what is provided for much of the time...as far as the medication issue, my mom seems to be not cooperating and taking things as usual. To me, no matter what others say, I think she has this capacity to convey her own thoughts and self-determination re it. So I am not distressed and not forcing it. All she was taking was a calcium supplement, vitamin and a bit of BP medication (the most important of them). She was agitated when the MD made a visit from hospice as well as the nurse the day prior, so objected to anyone using the pulsox, and there seemed little sense in checking BP causing further upset. MD did suggest we might want to try seroquel, which I may try if she'll take it; she also has refused the stool softener they provided/suggested to the point of spitting it out and throwing it...which she also did with a fudgecicle...we are in a tough spot, but what good comes of forcing the meds? I know observing all this has made me realize the importance of making my wishes clear legally should others have to make decisions for me. We all want that right to self-determination, and sadly we know how this story is going to end, for all of us, and we cannot really change it....No easy answers, but take comfort in knowing you have done our best.

The belief her meds are "tainted" deserves further investigation. Usually hallucinations and strange ideations may have a medical basis: poor oxygenation. not enough blood circulating into the brain, an infection, a blood chemistry imbalance, a stroke... Please have her doctor evaluate her promptly.

If your mom truly does not want to take her medications any longer and understands the consequences, then hospice may be a better option. Palliative care is "comfort care" but they would have to intervene if she stops breathing or her heart stops. Hospice care provides "comfort care" as well but will not intervene when clinical death occurs.

This is the type of person that Hospice serves best. It gives your mom safety and medical oversite, and give you peace of mind that there is an overnight shift. My husband ended in a Hospice Lodge overlooking some woods. I was able to sleep with a clear mind knowing he was well taken care of. I was free to visit as much or as little as I could. I also have the option of sleeping in the same room as he. The reasons the statistics are so low in useage is that families and mostly doctors (that includes palliative care doctors) wait too long to make the call. Yes, call Hospice today. ( I also found that like the Insurance companies that make you try the less helpful med before they 'allow' you to take the one your doctor really wants you to take,....... an additional level has been added to the dying process, and that is palliative care. They spend so much time doing more interviews and tests. Hospice is the best!

I was faced with the same situation with my 91yo mom in 2018. She also had Alzheimer's & history of CHF with her DNR & Advanced Directives in order. She slowly started eating less, sleeping more, weakened so they she couldn't walk with help anymore. I notified my siblings of mom's deterioration and that it was just a matter of time. She started spitting out her pills & refusing to eat. Because she wasn't taking her pills for the CHF she started retaining fluid, I realized that it was time to call Hospice. The hospital bed was delivered along with the prescription meds. The nurse came to the house & taught me what to do & when to give each med & why. I taught my brother who lived with her but worked during the day what the nurse had taught me as I was her daytime caregiver. It wasn't long before I knew it was just a matter of a few days & called my siblings again. Mom lasted about 3 days & died peacefully with me holding her & telling her how much I loved her. As hard as it was I was able to spend time with her & held no guilt about her being in pain or S.O.B. I kept my family up to date with her decline so that they weren't surprised when she died. Spend time with her & be there to comfort her. God bless. 🙏🙏