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I don’t know where to start really. Mom has had headaches for months now. But nearly 2 weeks ago they became really bad. Her back pain also increased. Lots of nausea She does not have a UTI! Because she can still speak & walk very little with a walker she doesn’t qualify for Hospice. She’s on their Pallative & Dementia Care. Mom maybe eats an ounce of food a day & drinks little. She’s a bag of bones. Her BMI is 15. Shes sleeping 98% now. Her eyes look different. Her communication and understanding is worse. She’s fallen a few times. She’s been put on Tramadol, a steroid, pain patch & nausea med. Nothing has alleviated her headaches. I've been going round and round with Pallative Care nurse and her dr (took her in last week). Her dr said well she had a brain scan a couple of years ago-seriously? I told him so did my SIL who passed away last year from Glioblastoma. Things change! So supposedly he’s ordered one, hasn’t been scheduled. Here are some of the many things the nurse has told me: dementia pts don’t have headaches, I’m not trying hard enough to get her to eat, steroids don’t cause headaches, she even accused me of demanding she prescribe Fioricet for my mom, so many other things. I asked her if mom could get something stronger like Fioricet. She declined. She said she didn’t have a diagnosis to support that!!! I sent her the chart notes where unspecified headache is listed, still no! I truly feel like I’m failing my mom. I’m fighting so hard but getting no where. Her labs came back with lots of abnormal results. I researched to see what the common factor was and it mostly comes back to kidney failure. Nurse dismissed this too. I’m going to get a specimen cup today and take her urine back to dr for further testing. I don’t want to take mom to the ER. I’d have to call 911 because she couldn’t sit and wait. What do I do?????? I sit and cry because I’m failing her, we truly think she’s dying but nurse doesn’t think so.

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Y’all will not believe this! As I was leaving for a specialist dr apt(my hubby was watching mom) there was a lady in the hall looking for unit 102. I thought she was delivering our groceries. So I said that’s my mom’s address. She said oh, what were our names. I told her. She said she was looking for us. I said you must have our groceries to which replied, no I’m from Adult Protective Services!!!! “Someone filed a complaint against me! The complaint stated I was neglectful, my mom had lost weight(of course she has) and get this- I only feed her strawberries! Can you believe this! Well after all was said and done the investigation revealed of course no neglect. After my hubby and I explained what we’d been thru with the Pallative Care nurse & her dr she was appalled! She was impressed at how meticulous my record keeping was and asked for copies of all 107 text messages that I purposely saved between the nurse and I. She is going to contact Hospice herself and see what she can get done! She remarked what an amazing job I was obviously doing with my mom and apologized for what we’ve been through. We see mom’s dr tomorrow and you can be darn sure this will be addressed. Thanks again for all the love and support. I’ll let you know what the dr says.
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Reply to Momsonlychild
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MammaDrama Aug 6, 2020
I wonder if the person who filed the complaint was really trying to help YOU and it was the only way they could do it. Maybe another nurse witnessing the whole thing? Glad you are getting some help.
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First, please know you are NOT failing your mom. Based on the description of your mother's condition, you are both being failed by your local resources. Based on Medicare standards, (loss of weight, decreased nourishment intake, BMI, continual sleeping) your mom qualifies for in-home hospice care. The caveat is if you continue to provide curative care. Hospice care will help you make her comfortable and provide a better end of life quality care for your mom and for you. If one hospice agency denies her, keep trying. Another one may accept her. I have seen this more times than I can count.

You are not on an easy road. I have traveled it both with my mom and with clients of the in-home elder care agency I founded. But you must find the energy to advocate for both your mom and you.

Sincere best regards.
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Reply to AmyLock
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Please take your mother to the ER via ambulance now, and get some help for her. She needs a workup and pain medication The ER should be able to request a consult with a palliative doctor. In stressful times like this you need a reliable agency and physician! He/she should be able to assist your mother in a compassionate manner and help you get the right home care. My mother had a consult with a palliative physician, and he was so helpful. I ask for him when my mother stays in the hospital. I did not like the agency mother had, and he suggested a top agency and we had this agency for almost a year. All set up if and when my mother needs palliative or hospice care. The best agency I have the privilege to work with.
I just recently took my mom to the ER. I called the ER first, no cases of the corona virus. She had her work up, IV therapy, and observation for the night. I was able to stay with her. I had prior authorization before I even stepped into the door. I would consider a new doctor and you may need to change nurses as well . I hope your mother gets the help she needs. The hospital followed strict guidelines and I felt safe. Your mother should not be in so much pain. I hope and pray your mother feels better and is pain free.
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Reply to earlybird
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As near as I can tell palliative care in America is hospice without any of the benefits that go with hospice, other than a philosophy of care it is pretty much useless. You doctor and the nurse assigned to you are failing you and your mother enormously, the whole point of end of life care be it palliative care or hospice is to maximize comfort and quality of life, neither one is assisting you to do that. It's past time to get some answers: call 911, put on your Xena Warrior Princess persona and kick some azz.
(And from my web search Fioricet in America doesn't even have codeine in it, so what is that nurse's problem?)
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NobodyGetsIt Aug 5, 2020
Yes, "cwillie," palliative care is nothing compared to having full hospice care. Even with that, hospice companies can vary. In our case, we use one of the biggest in our state because it's a not-for-profit organization. I don't know what our family would have done without them both for my dad and mom. After my dad died, I supported them financially because I was so thankful for everything they did as I never even heard of hospice care back then. I was only 41 and never experienced caregiving. As with anything, you pretty much have to do your due diligence. And yes, "Momsonlychild" isn't failing her - the hospice palliative care team is failing them both!
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Some below who suggest taking Mom to ER will get things such as scans and MRI done faster are correct. However, you mention that Mom is now on palliative care and is, in general, failing. Palliative care means that there is an understanding with Mom and family that she has no cure, and is moving toward death. There is very little "diagnostic" care done in palliative care. It is more comfort care. However, for Mom there is NO comfort. Whatever is wrong within Mom's head, even a cancerous tumor, there is very unlikely a cure for it, and the treatment would be harder on Mom than anything else; so the tests are almost irrelevant.
I would suggest moving from palliative care to hospice now. You describe someone no longer eating, and sleeping much of the time, someone who is very very debilitated and in pain. Mom will be out of pain when hospice gets there. Will that hasten her death? I have to say it will in all probability do so, but not by more than a month of two of acute suffering.
My heart breaks for you all.
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Reply to AlvaDeer
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Momsonlychild Aug 5, 2020
That’s exactly what I thought Pallative Care was and called the nurse out on it. Mom had a brain scan done today at the hospital. Now waiting for results. Taking urine sample to dr tomorrow. I hope they will be looking at kidney issues. Mom doesn’t qualify for Hospice as she walks a little with a walker and still speaks. I think the Pallative Care nurse butts heads with me because I have medical knowledge and she can’t be challenged, how professional is that?
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And you are still going to this medical center why? The nurse is failing you!! Seriously take your mom to another doctor. You should not be this stressed over getting answers from her medical team. Stay strong. Go somewhere else.
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Reply to sneeze1234
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Hi. It seems odd that she won’t qualify for hospice. I think you should call a hospice service and have them come see her. My dad has dementia and he passed on Friday. We all went through so many ups and downs since he was diagnosed in 2009. Walking around affects nursing home acceptance from what I experienced but my father was on hospice for over a year and he was bolting around in the beginning. We are paralyzed by the medical industry unless we take charge. You need to get a hospice person over there... don’t just listen to one opinion. Take charge. Tell them what you want and what you think because you will regret it if you dont... and fight like you would wish to be fought for. You are an advocate for someone that cannot take care of themselves.... be strong and get them what you think they need. You are not failing... but when you watch someone sick you feel like you’re failing if you cannot take the pain or process away and that would be impossible. You care, you are there, and I know you will be taking charge and getting her the care she needs. I fought many doctors and nurses opinions... and I won. Yes my dad passed but I did the most to make sure the care was there and the comfort and that’s where hospice comes in.
you are doing fine and you will get her what she needs.
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Reply to Lookin4hlp
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Since your asking "what do I do?"

IMHO: Call 911 and get her to ER!
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Reply to Blue24
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I don't get it about hospice. Both my parents used a walker and were able to speak fairly well. We were told if there is ANY weight loss, falls more than usual, not eating as well or sleeping more, worse dementia. I don't think the hospice that you're dealing with knows their stuff.
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Reply to LivingSouth
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Exactly, have her taken by paramedics to the ER. That will get her seen faster than if you take her. Follow them there and let the staff know she can’t reliably speak for herself due to dementia
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