Has anyone worked with palliative care?

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Has anyone worked with palliative care?

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I contacted Alzconnected for some advice awhile back. My mother has a number of co-morbidities I'm juggling. It's overwhelming to figure how to prioritize. (Alzheimer's, vascular dementia, a-fib/prone to strokes, rheumatoid arthritis/candidate for revision hip replacement, dental issues the dentist wants to sink a bunch of money into for long term solutions I don't think are prudent or practical considering her health - nor does she have the disposable funds.)

The Alz people suggested I establish a relationship with a palliative care provider who can help. I don't really know anything about this specialty, so I'm hoping for some insight. Thanks!

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heather, my mother is on palliative care. The things she has can't be fixed, so the care is aimed at maintenance and comfort. She receives medications for her diabetes and hypertension and a pain reliever for her spinal stenosis. She also gets a sedative for her generalized anxiety. She receives treatment for things that come up, e.g. UTIs, but they don't worry with thing that could cure her. She no longer has invasive or extensive tests. It is all very straightforward. The aim is to keep the quality of life as high as possible without trying to cure her. It saves a lot of frustration.

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Side note regarding the hip surgery. My mom had hip surgery five years ago - she was a nightmare to deal with regarding her recovery. Mom always has been a hypercondriac - she was told her surgery need was boarder line. But mom badgered the doc till they gave in. Mom had it in her head that rehab was going to be like a spa visit and that people were going to wait on her hand and foot. She also expected an immediate fix with no work on her part. After her rude awakening she carried on for a few years that everything was her surgeons fault. Fast forward to a year ago when she became fixated on getting her other hip done. I knew if it was the way it was five years ago, now that the dementia had kicked in hip surgery would be a disaster. So when we couldn't stall her anymore - when I took mom to a geriatric psychiatrist for a variety of things, I had him include in his report her appropiateness as a surgical candidate. That was the end of that. When mom finally understood that no one would operate on her, her hip pain magically all but disappeared.

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I worded that badly. They do try to cure UTIs. They don't try to cure the dementia or other chronic conditions.

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My mother has vascular dementia. The first thing that let me know something was wrong was her lack of reasoning ability. From what you write, your mother has the same problem. I also cannot make my mother see reasoning, since she doesn't think women are very smart. She will listen to her doctors, though. You'll just have to make sure she doesn't get around a doctor who is eager to sell her an operation. Doctors like that are out there. I think what the doctor said about only in the case of excruciating pain is good.

My mother's PCP at the present time is not so good. She is with the geriatric clinic at the local hospital. Her first doctor was okay, but she left. Now we have a doctor that is sub-par IMO. We've had 3 doctor changes, so it gets discouraging. Everything is done as a team following the guidelines for palliative care.

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My cousin, who has severe VaD mixed with AD, has Palliative Care. It was first explained to me by the nurse at the Assisted Living facility that my cousin first entered. I had to change her doctor due to a move to Memory Care and I located a geriatrician. I made an appointment and met with him to discuss Palliative Care for my cousin. (I'm her HCPOA.) I made sure he understood what it was and that he would be comfortable providing that type of care. I think that most Primary Care doctors should be able to accommodate you too.

Still, you have to constantly remind health care providers what the goal is. When she suffered some fractures, I had to be sure to reinforce that we wanted the least invasive treatments to keep her comfortable. I've had to do the same thing with her dental care. I had to explain that we want to keep her teeth as functional as possible, without invasive treatment.

It can be frustrating, but we have to continue to advocate on their behalf, because doctor offices love to run tests and set up appointments.

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Thank God my mother was sooooo hard of hearing because I could talk to the doctors right in front of her and she had no idea what was being said. I had her internist and her cardiologist that worked in tandem. After my mother had 2 small strokes that only we her family could tell because she had a defibrillator & could only have a CAT scan and not an MRI, her primary doctor agreed to set her up on Pallative Care. Mom had been able to live on her own (with the help of nursing care coming 2 times a week) in a small home we bought for her about 5 minutes from my husband & I. She wanted her independence and we gave it to her as much as possible. But after the TIA's it got to the point where we could not keep her blood pressure below 200 so we had the palliative care set up at our home and we moved her in with us. My horror happened when mom had a BIG stroke and they did not want me to call an ambulance. They wanted me to wait until they could get their own nurse, not a doctor, but nurse, to my house to look at my mother. I basically hung up on them and called 911 like my heart told me to. I am 57 years old and I knew this was a major stroke because the entire right side of my mothers face was drooping. Her eye, her mouth and I could barely understand her speech. I knew time was of the essence if I could possibly get my mom help, so I did what I had to as a daughter.
Unfortunately, the er doctor told me that this time a massive brain bleed showed up on the CAT scan this time and I had to make the decision then and there if we were going to stop life saving measures. I DO NOT wish this decision on anyone. It's the most difficult one you'll ever make for a loved one.
But, know that if your parents primary doctor sets you up with a health care company that provides hospice and palliative care, that this is what may happen.
Having to watch my mother die during the 7 days after her major stroke was horrible and everyone tells me it was the right decision. And in my head I know they are correct, but in my heart, the guilt and sadness of that decision still haunts me. But I'll be damned if I was going to let some Health agency tell me what to do for my own mom and not call an ambulance for her. The outcome was the same, but I knew that at least I had done what I needed to do as her daughter.
Sorry, I don't know if this gave any information that might be helpful or not. But your question brought up so many memories and feelings that I just had to share my own experience.
I wish you all the luck and be careful with listening to the family members that are living at a distance. My brother was ready for my mom to just die so he didn't have to deal with or even hear about what was going on with her. The best emotional help I received actually came from my mothers 2 surviving younger brothers. Both of them in their 80's. My mom was 92.

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Thanks JessieBelle!

Do they "replace" her primary physician or work in the background? This past year I've run from neuros, to orthos, to dentists, to rheumatologists, to cardiologists. Neuro offered to refer her to a sleep clinic since I explained that to date NOBODY has dealt with her issues with the bi-pap & ill-fitting masks that sound an alarm constantly at night alerting to "air leaks"...As if she's supposed to get any sound sleep that way.

Anyway, it was actually the cardiologist this past Monday who spoke very firmly to mom saying unless she is in excruciating pain she shouldn't even be entertaining the artificial hip revision surgery...She's on blood thinners which is how we ended up with him in a round about way...She's obsessed with hip surgery making her quality of life so much better. The ortho surgeon told her she needed to change her medication if she were to have surgery. Well we just had a neuro appointment & an updated scan showed she'd had a small stroke recently - in the "middle" of the process of changing her meds. Oh & now...We're not on "only" dealing with Alzheimer's...now we've added vascular dementia to the list! (Probably related to not using the damn bi-pap.)

KNOCK KNOCK KNOCK - that's my head hitting the wall.

Extended family chimes in and encourages surgery too. (From the comfort of their homes - 3 hours or more away.) Unfortunately, it's 2 days later and she's back to her "can't wait to have surgery" kick because she's completely forgotten what the MD told her. Even more "ironic", she complains about having to attend all the medical appointments as if it is inconvenient for her.

So many dilemmas...I feel like a hamster on a wheel some days. If palliative care can take some of this pressure off - I'm all in!

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I appreciate all the insight I can get. Yeah, the hip surgery issue is starting to drift away after the cardiologist told her (not for cardiac reasons - but based on good old common sense as an older MD) that whatever she's expecting the surgery to fix is going to fall short. She's had various surgeries over the years to deal with this/that related to her rheumatoid arthritis - which have proven absolutely useless. But being the advice against surgery came from a man, she is more apt to listen. Go figure. He told her, having had a hip replacement himself, that unless she is in constant excruciating pain, there is absolutely no reason to do this. So, what does mom do? Starts telling people I (personally) decided she wasn't going to have the surgery. Which of course leads to me having to explain (defend) it wasn't my arbitrary decision. And since there aren't already too many cooks in the kitchen, I did a search for a geriatric psychiatrist today. Found a geriatric memory & geriatric behavioral doc. The last thing I am anxious to do is bring another doc into the mix, but since we JUST had a consult with Mayo - that uncovered she has Vascular Dementia + Alzheimer's and they didn't offer any treatment recommendations, but found a recent stroke on the MRI (which is what led us to the cardiologist - mom has A-fib), I wonder what if any medication changes are in order. She's on donepezil & sertraline. Nobody has taken a comprehensive look to see if either is effective or necessary based on the stage she's at. The palliative providers I've found are associated with the oncology department, so now I wonder how effective they'll be in dealing with "making her comfortable" with her varied issues that have nothing to do with cancer. I also thought about seeking out a pain clinic doc to see if there is an injection that could help hold her hip pain at bay, in lieu of surgery. It is FREAKING exhausting trying to figure out what to do, who might be able to help. I used to work in workers' compensation - have ALOT of experience dealing with people having chronic pain issues, needing pharmacological management, etc. If I didn't have this experience, I don't know what the heck I would do. But, then again, am I overthinking ways to "make her comfortable"? Only other HUGE concern on mom's radar is dental work - 2 bad teeth in a mouth full of her own teeth. I want them pulled rather than all the "restorative" work one dentist proposes. I feel like I am caregiver and care manager (like most folks on here probably are), but I literally feel like I'm playing a never ending game of whack-a-mole. Exhausting....which leads to my whining. Sorry for the rant. But again, thanks for your all your insight!

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Responding to kgaither

I requested palliative care from both my PCP and my lupus doctors & they didn't agree. I sought & found a house-call doctors group and, after I refused intense procedures and interventions, I was quickly referred to hospice.

I feel that calling the ambulance when stroke symptoms appeared removed your dear mom out of palliation. I don't 'blame' you for calling the ambulance. In fact, I hope to get my house in order then go to sleep and never wake up before additional incapacities arrive so that my son/caregiver would never have to watch me in death throes (and this 1 time avoid rescuing me though he's done it countless times for half his young life) since lupus+RA+Sjogrens+DVTs+pulmonary emboli+ pulmonary HBP+ vena cava obstruction have damaged so much of my body.

It's the only thing worse than waiting to die- the impact upon my only child- not wanting to lay any guilt on him. Death is inevitable for all of us, some sooner. The dilemma of rescuing my mom when she is in distress, I just don't see how it can be overcome, even when, like myself, she's made it clear that heroic attempts to keep her tattered and weary 55yo body is too terrible to endure.

At any age, for me, prolonged suffering is to be avoided. But every 'patient' should have the right to pick and choose how much intervention they want to endure.

I think you are to be commended for trying your best to navigate the journey with your dear mom. I think and feel that all we EVER need to do is our best effort. That is what I am always telling my 30 yo son, "do your best & leave the outcome to God"

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Mella111

I am so sorry for your situation. Your bravery brought tears to my eyes. I think when you go through so many illnesses, you just get worn out and you are ready at a point to die. My mom wasn't though even at 92. She and I talked about it. She was afraid. So I tried to abide by her wishes as much as I could.
My own son will be 30 this year just like yours. Because Jason works in the medical field, he's a Cardiac Invasive Specialist, I've told him I do not want to put him through what I went through with my own mom.
He's a strong young man, but I know medically he will always know what questions to ask and he will be honest with me. I've told him my wishes, so he understands not to prolong medical care.
I wish you all the blessings God can give you, and the ability to your son to be strong when he needs to be.
Take care.

Has anyone worked with palliative care?

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