Mom Update: Challenges with the Medical Communtiy
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- Опубликовано: 27 сен 2024
- Mom Update: The last three weeks have been challenging. Part of the challenge has been with the medical community.
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That was a great video. I laughed amidst your mom's situation. You are spot on with the medical staff. Thank you.
Deborah, thank you for the update on your mom. I've been concerned about her.
My neurologist feels I have Lewy body dementia. I go for my Petscan Fri.
I know your mom is in pain..I have chronic pain from my autoimmune diseases.
I won't lie, this is one scenario that scares the pudding out of me..that kind of pain is relentless and all encompassing. You can't eat or sleep and as you know her chair is where she has found somewhat of a way to rest. I can see you banging your head against the wall 🧱 Deborah. I've worked nursing homes and hospital care. Stand your ground for her. One of her rights is to receive her pain meds, it's part of her palliative care..I'm sorry your going through this. None of it is easy..Take care 🙂🤗🤗
Unfortunately, I've gotten the most cooperation from medical professionals after I pitch a whole, entire fit. Being polite and cooperative has only gotten my loved ones ignored. I hate acting like that, but it seems to be the only way that many people will actually pay attention to people on palliative care 😕
Standing in the observation ward bellowing about how this country treats pets better than the elderly causes people to pay attention, if nothing else. They didn't seem to care too much about my grandmother, but they were willing to do whatever I asked in order to get the deranged woman to quit yelling.
I just wanted her to have a sedative because she was disoriented and utterly terrified, and we wanted to take her home where she wanted to be. Why is that seen as such a horrible thing?
Then there was the time that the hospice nurse kept telling me that I was 'overdosing' my uncle who was dying from cancer.
No, I'm trying desperately to keep him out of pain and reasonably content by letting him have whatever he wants.
No, you're overdosing him. He wasn't in pain when I was there yesterday.
That's because I'd 'overdosed' him, you insensitive, rude... but instead of saying that out loud I did the old fashioned and very gratifying slamming of the receiver (bless those old handsets!), called the hospice directly and made it known that I WAS going to speak to a doctor. Immediately.
The doctor had enough sense to realize where the communication gap was and asked how I knew he was in pain.
What? Because he tells me he is, that's how I know. And tbh, I don't care if he's lying because he just wants drugs. He's actively dying, let the man have a damned buzz if he wants. Ggrrrrr 🤬 I was ready for fisticuffs in the backyard.
But apparently, when someone takes 3x the prescribed doses of morphine and sedatives, they aren't supposed to walk into the living room complaining about their back hurting. 🤷🏻♀️
The Dr had a phenomenal amount of drugs delivered almost immediately with written instructions for as much as needed.
He also explained that frequently, pain will keep someone locked into their body. The theory is that with such intense physical sensation, they simply can't disconnect and let go. I've lost more sleep over this horror than I want to talk about.
I can't stand up for myself for any price, but I will be 🤬🤬🤬🤬 if someone is going to leave my loved ones in unnecessary pain. Nope.
Interesting about pain keeping them here. Makes sense! Thanks for the info.
Your videos have been so incredibly informative and helpful. I think I sat and cried through the first few. Just more because of lack of family support and then knowing what I am doing is right. I keep starting to my dad that I need him healthy and safe. Thank you for being so open.
Amen Sista!
Oh man. I’m just finding your channel, and the frustration with the healthcare system is very real!
A lot of times UTIs don't present with a fever and they act crazier than usual.
As far as doctors - just like they act when you would bring your child in - YOU don't know anything.
My stepmother's general physician was pretty good about listening to me....unlike the cardiologist would basically ignore me
It is aggravating for sure. In general, I do like the PA. I'm not sure why this was an issue this time.
Not everyone with lupus has the butterfly rash with flare ups. There is so much more that happens.
Thanks for sharing : watching this in 2024 from France, sadly I can say nothing has changed, whatever the year, whatever the place 😢
Hopefully one day things will be different.
my heart aches for you. may you find comfort in your concern .
My girlfriend has dementia. She was having anger problems associated with the disease. Her family, put her in the hospital, long story short, she went off on the doctor, the doctor put her in a psych ward. They don’t understand I have knowledge to diagnose dementia. So the doctor put her on psychotic drugs to calm her down. Well people with dementia on psychotic drugs only makes things worse for them. When she finally get out of the hospital I saw her a month later, it wouldn’t let me go because I was not family. She was a lot worse than that month. And I do believe it was because of the antipsychotic drugs they put her on. Not knowing that with coupling with dementia it makes so much worse. Most physicians, or doctors and hospitals do not have knowledge of dementia. They know of it. Anyway she’s really bad now can’t walk can’t talk. She did tell me oh hi sweetie when I was leaving after two hours. But it was nice to hear. I love her, I feel so helpless.
Antipsychotic drugs can do a number on people. They usually ween them on and off them.
My mom’s neurologist gave her seroquel. She flipped out worse than ever shortly after one does.
You said she didn't have a UTI because she didn't have a fever. Seniors do not always exhibit fevers even when they have infections. Sometimes their temperature can even be subnormal with an infection.
True but my mom never had a UTI without a temp. They did test for it, but it was a struggle.
I hope you don't mind this but do you ever worry you will get dementia? I worry about it constantly since both my grandmother and mother had it.
I don't worry about it. I have a large extended family and my mom is the only one who has it. She is also the only one with lupus. Her doc told us a while back that if she lived long enough with the disease, this would happen.
Exactly. I have been dealing with this for 13 years after my husband got a deadly viral infection in his brain that was misdiagnosed for a critical 3 days until he coded and ended up on life support for weeks. Oops. over the years this has progressed into what they call mixed dementia. Nothing else.I often leave those doctors appointments shaking my head or ready to scream. You are pretty much on your own.
No other disease gets treated this way.
Wow! I feel your frustrations and am right there with you!😩 “She walked down here so she can walk back.” WHAT??? I just found your channel and it is validating in so many ways. I care for my mother with Alzheimer’s and thankfully she is 94 years old and was just diagnosed 3 years ago….even though I realize now it was present long before that. I’m definitely “the warden” most of the time. 😂 Whatever. I just do what needs to be done. At least she’s pleasant to everyone else.🤗Thank you so much for sharing your valuable stories.
P.S. I ordered your book yesterday!
I appreciate your videos so much! And I understand,: sometimes you just want to scream. I shouldn’t be smiling at your “Do you think she might be in PAIN?” but comic relief is good for the soul, especially in the presence of this horrible disease.
Deborah, our moms could be twins! I am watching you talk about everything that is going on and I am FEELING with you! I am not able to get my mom into AL because she isn't ambulatory at all anymore. She's currently in rehab, but when she is released she will have to go in to a nursing home. It's AMAZING the amount of money that is paid for their care, and yet we still ahve to provide their drinks!!! RIGHT!?!?!?
We've been down the nursing home road before. The whole thing is hard!
PS..... this disease as you know, it’s like a moving freight train never stops. I Go visit her once a week. I was doing more, but was taking a toll on me. So unless her family calls me or something more urgent, I’ll continue to go once a week, until God forbid her demise.
Not everyone has the butterfly rash, please don't say that..the rash constitutes Discode LUPUS, I have Lupus Sle and get red in some areas & heat Sun are not our friends sle & discode.
That's true, but in my mother's case, she got the rash every time without fail. Plus, they were grasping at straws.
In the elderly they don’t always have fever with infections. The biggest mistake we made with my dad was not starting a pain medication routine earler. He couldn’t tell us he was in pain but all the signs of pain were there.
You are her safe person to freak out on. My dad would treat us horribly, but sweet as pie for everyone else. It’s not you it’s the disease.
So true.