Mom is 94 with congestive heart failure and advancing dementia. We want to move her to palliative care so to provide her comfort and provide us with a sense of security in her safety. She has started to refuse her medications believing they are "tainted". Without her meds we know she will decline. Has anyone been in this position?

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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.
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Reply to Violet2021
gdaughter Jun 26, 2021
what a blessing for you to be a nurse and have the knowledge to process all of what your mom was going through and help as you were. So sorry for your loss.
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.
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Reply to AlvaDeer
yolandason Jun 24, 2021
Thank you for that insight on the heart. I imagine its the right. We are waiting for a decision from her primary care dr. I'm guessing he may move to hospice and bypass palliative. We have made the decision to keep her in her home as long as possible.
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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.
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Reply to MJ1929

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.
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Reply to NeedHelpWithMom
Cover66 Jun 26, 2021
Pallative care is roughly the same.
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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.
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Reply to Grandma1954

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 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.

Here is a link that might help.
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Reply to 97yroldmom

Many hospice agencies now take dementia patients and palliative is what is provided for much of the 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.
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Reply to gdaughter

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.
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Reply to Taarna
jemfleming Jun 27, 2021
Palliative care does not have to intervene if she has a legal DNR order.
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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. 🙏🙏
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Reply to ToniFromRVA

All Hospices are palliative care but not all palliative cares are Hospice.

When I refused Hospice for my wife, the hospital care manager suggested palliative care. I checked around and the best that they could do for me was a monthly nurse visit, an aide a couple of hours per week and a phone number I could call if I had a problem getting needed services from a doctors office. I have a long standing relationship with my wife's doctors, their nurses and office staff. She has seen some of them for almost 20 years. If I need something done, it gets done, I don't need an extra voice to phone them. I have her PC and cardio's personal cell number in case of emergencies. I always go through the answering service first, but if that doesn't get the results I need I use the private number.
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Reply to garylee

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