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I realize that as a person who is 40-something with parents in their mid-seventies that I need to be my parents' advocates when they are hospitalized. Everyone says you need to be their advocate and I have issues with that- but that's for another topic.
I'm trying to prepare myself so I can handle situations with more information later because it's becoming relevant and it's daunting and I used to feel that people were well-cared for in hospitals but over the last few years my father's instances of being hospitalized and my friends parents have been hospitalized and had parents die- I'm just confused...I'm not able to help my friends and feel very ill-prepared for the next years.
My father was hospitalized last year and his experience was so bad I fear he would rather die at home without calling for help than go back. Last year he had a few falls and was hospitalized. He was held and rarely seen by anyone other than a nurse for two weeks. When he went in his neurologist came in within a few days (for his one day a week round at the hospital) and told whomever at the hospital that due to my father's idiopathic shaking that he could not possibly stay still enough for a CT scan. The hospital repeatedly attempted CT scans and they berated him for not staying still.
He was billed of course for each one and yes he had good medical coverage as he worked in "yesteryear" when companies provided decent health coverage for retirees but the way the hospital staff spoke to him was unacceptable. He is physically incapable of staying still. Eventually in the second week they gave him a sedative that slowed his movements and they were able to get some images after a few tries- yes a few- 3 tries. But why did it take that much? Why wasn't' the neurologist's word enough for them to administer the sedative from the get-go? His regular GP as well as his regular neurologists and his other specialists were in contact and recommending sedation? They did a CT scan multiple times without sedative and each time he was berated for not being able to be still- something completely out of his control. How awful it must be to be yelled at over something your body is doing through no control of one's own.
Meanwhile each day he had shots in the stomach to reduce his chance of stroking out because he wasn't walking- no one even tried to walk him. This will become relevant later. Two weeks and the most he walked was from the bed to the toilet aided by a nurse.
So fast forward a year later to a hospital one state away. My friend's mother went into the hospital and while she was there she had a stroke. She mentioned how all of sudden she couldn't see to several workers and nothing was done. She was released. No one checked her for stroke even though she was trying to tell staff that there was something wrong. No one listened and it was all someone else's responsibility. She never had any anti-stroke medications. She's in her 90's and she was bedridden. Why did my dad get anti-stroke shots while she did not? She was at higher risk of stroke and a good 20 years older than my dad.
And now the same friend's partner has been hospitalized for some autoimmune disease. Apparently he's been in for a few weeks and was sent to rehab while his meds still hadn't been worked out and he couldn't walk. The PT says no way he is up to walking and he is not ready to be in rehab. Weeks later after pestering the admitting doctor my friend gets a message back from the admitting doctor that he's very seriously ill with liver cirrhosis. No one has told the patient. The patient has no idea how poor his prognosis is. He has no idea how serious his condition is. The admitting doctor says he's a kidney specialist who was just doing rounds at the time of admittance but that my friend's husband needs a liver specialist- through message weeks later. WTF? Why didn't anyone say anything sooner?????? Like a month ago?????
I just don't get it. I really don't understand. I used to view hospitals as being places to get emergency medical care but it really seems like no one takes time to speak to the patient or the patient's family and information is withheld to the great detriment of the health of the patient especially when they are considered older.
Going back to my dad- the nurses told me that he needed to go into a home (off the record). That he did not have the mental acuity to live on his own. Turns out that he was just in so much pain that he couldn't think. After he got in-home PT (which was wonderful for him) he regained functionality. Once his pain lessened and he was out of the hospital he was able to think clearly and his doctors say there is no issue with his acuity.
So how does someone with an average intelligence and average strength of character deal with this? How do people talk to and get valuable information from hospital staff (doctors, nurses, specialists, the grand poohbah- whatever) in a timely fashion? Is there a book I should read? Do I need to go into nursing to understand this?
I just feel completely useless and I look to my parents to navigate but they can't because the system has changed. The doctors don't visit the patients daily, when they do they are there for 5 minutes and just read the chart and talk to nurses. There is no patient/ doctor interaction of any value and it's all so disheartening.
What do people do who have no children to be "advocates"? Think about it. Many have to hire help and pay for this help.
My parents went thru their issues and lived into 90's and had to hire people to help them. Their 3 children lived far away from them and one child who lived the closest considering, was involved a good deal. I was not nor my brother.
Hospitals can't/don't get involved in personal lives of the families.
I have a couple friends who have a fear of sorts as they have no children and siblings who lived far away and siblings don't just jump in. My friends have some health issues and are getting up in their years too. What do they do?
We must do everything in our means to take care of ourselves so we can get thru life without the need for a lot of help. That's one HUGE reason why I talk about prevention so much on this forum.
A side story -- I have a friend who is 92 and her 3 sons all live on East Coast and she has no help from them, NONE.....she's pretty strong woman and been thru 2 surgeries in the last 8 yrs and done this on her own. So again, do all to keep oneself Healthy....and yes stuff can happen I know that. This woman started hitting her body with more supplements in her 70's and they have paid off, she's pretty strong and NOT sick but weak with aging. And surgery complications and falls and more.
Last edited by jaminhealth; 01-07-2019 at 06:04 PM..
Some facilities have people called "patient advocates" you can ask for help; I would ask for such a person, and just be honest, that you're overwhelmed and need some guidance in making decisions. If the facility doesn't have such a person or acts like you're just being a pain I would look for a different facility if that's an option.
So how does someone with an average intelligence and average strength of character deal with this? How do people talk to and get valuable information from hospital staff (doctors, nurses, specialists, the grand poohbah- whatever) in a timely fashion? Is there a book I should read? Do I need to go into nursing to understand this?
.
I would depend on my PCP to help out with such problems. You have to ask questions and voice your concerns to a doctor that you know and trust, which hopefully would be the PCP--the patient's own doctor--not various hospital staff. Ask the PCP to explain what's going on.
Your dad will be back in the hospital at some point.
These are the things I figured out when my parents have been hospitalized:
Get to the hospital early in the morning when the doctors are making their rounds so you can ask questions or they can tell you what you need to know. Write down important info or if you can't write fast enough, use your phone to record the conversations and make your notes later.
Save the business cards the various specialists give you, so you'll have their contact details and office location when it's time to take your parent for a follow-up.
Remember to eat and sleep. The hospital cafeteria is often better than you'd expect, so eat there if you need to. You can't take care of anyone if you don't take care of yourself. And take a couple bottles of water to drink if you're spending all day there.
When an older person is in the hospital more than a few days, plan on them going to a rehab for a few weeks before going home. If they insist they don't want the rehab and they're ready to be home, try to change their mind, because they'll need it more than they realize they will, unless you have the free time to become their round-the-clock caregiver until they're able to get up and around again. And if you are caring for them, it will take them longer to get back to their normal selves because they don't have the incentive of wanting to get out of the rehab and go home.
First, legally hospital can not talk to anyone - even a child - if there isn't a healthcare proxy form naming that child as the legal representative. Do the form and make many copies of it, for the primary care doctor, the hospital and for specialists.
Second, not all hospital are good. Find the best one.
Third, you need to build a close relationship with your parent's primary care doctor. He'll be able to direct your parent's care better if you work as a team. Primary care doctors do make hospital rounds a couple of times a week. Daily visits are not necessary.
Fourth, I agree with Hedgehog Mom "Get to the hospital early in the morning when the doctors are making their rounds so you can ask questions or they can tell you what you need to know."
This post is related to the post "Woman says her son couldn't afford his insulin – now he's dead" Many people are listing things the son could have done to get his insulin, but really does healthcare have to be so darn hard?
Study the politics of the hospital - who does what - charge nurse, hospitalist, etc. Get the fax numbers of all (unless they have email to specific people) - and fax any and all concerns to them so they can address issues in real time and there is a paper trail - I think the paper trail could possibly scare them into being professional for awhile - it's a gamble, but you could get lucky.
AndCatsForAll - Sorry to hear about your experiences with less than satisfactory health care treatment for both your family and friends.
A part of the problem is often "ageism". Meaning especially with people who are elderly, medical people automatically often discount anything they say because they are just "old" and not worth a medical professional's time. If you doubt this...one of my clients overheard her doctor saying almost those very words, and she immediately found another doctor. She was an intelligent, lovely person, and very dignified. Yet that is what her doctor said. Not all medical people treat them this way, and MANY DO. I've seen this over and over with my clients. My clients complain about it. They have been treated with no dignity whatsoever.
This also connects in to our healthcare system and laws concerning how long a patient can be treated in a hospital. Some of the problem is that many people, not just the elderly, often will not ask questions of their doctor or the hospital. Many tend to be much too passive in these instances. They just accept the answer they get and that's it. There's no communication. I have observed the interaction of my clients with doctors and hospitals when they have surgery, etc, when they go to their own doctors by appointment, when their quality of life is seriously affected with medication side effects.
IMHO, our healthcare system, which includes hospitals, needs a major overhaul so that patients are kept in the loop and can't be forced to have treatments, CAT scans, etc. And what about people who don't want any of those kinds of care or treatments? Some people would prefer to be without all this extra care once they reach 70 or 80 or 90. Many people's lives are prolonged while being treated with all the latest meds that give people terrible insomnia, the latest surgery, radiation/chemo, the latest everything...meanwhile, they could be at home, enjoying their life as much as possible until it's their time to go. Healthcare is a hostile world for many. And that's just the way health care in our country works.
Even though I have health insurance, this is my philosophy about my own personal health care. I refuse to be on a gaggle of medications that render me useless to enjoy my life and give me side effects that prevent me from sleeping at night, that make me cough, the list goes on. It's very difficult for me to watch my own clients suffer from these side effects. I've learned valuable lessons from their own health care treatments and their seriously-lacking relationship with their doctors.
Last edited by 'M'; 01-08-2019 at 12:03 AM..
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