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After being the sole caregiver for my mother, who is 80 and is in Stage 3 Renal failure, Diabetic, 2 heart attacks, 2 stints, and put on dialysis for 2 days, I have learned which doctors, nurses, physical therapists, etc. I will have a problem with in either questioning my decision, attitude, and care when she is in the hospital. I have 4 other sisters and 1 brother who are still alive and have not helped in the past with anything unless I practically begged for it. I was told today, after seeing the physical therapist that we have had in the past that has a superior attitude and can be rude and my mother doesn't remember but said the last time she didn't like him, that I had a negative attitude and I needed to give him a chance. And that the others can't ask a question without me giving them attitude and getting upset. The thing is that they are the same questions that were asked each and every time she is in the hospital. When I do say something their excuse is that they forgot and they can't remember one day from the next. My response is that I had to learn these things and write them down and memorize them, why can't they? I know what the answer is, that they don't have the sole care and therefore don't take the time. I am just wondering, am I wrong to feel the frustration with feeling like I am being taken advantage of and that I have the right to have my feelings about past incidents with the healthcare providers?

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There also some valid reasons why the exact same questions are asked every time. One, it is REQUIRED to ask allergies and verify meds every time. Records can have errors. People can forget they had something changed. New allergies or ADRs can be acquired. Other odd little things can become requirements, though not with as good reason sometimes...for example, my gyne office is apparently on a system where they have to ask about falls every time if you are over 50 or 55...my bone density and balance happen to be fine, but they would not have a fast way to know that. Easy and fast to asnwer and let them check off the checkbox for me, and avoid missing the opportunites for other old ladies to have things done to prevent their hip fractures. And finally - it is very possible to get into BIG trouble by not reviewing history of a new patient - which means new to you or new to the system - maybe not asking the whole story from scratch every time - but what is in the records can be wrong, or something new could have been remembered or learned that might be very key. All of us know of times when a more detailed and careful re-taking the history made all the difference. Humor us a little.
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9thyoungest, I think I see a part of the problem.

No one wants large three ring binders. No one has time. And making multiple ones is not the best use of YOUR time and energy. ONE big binder is good to have but it stays home. Little manila folder with POAs, contacts, and med, diagnosis, and allergy/ADR list goes with you, as noted above. Look, you are doing an awesome job managing data and keeping tabs on medical issues, but the health care folks need short summaries and you and your family need the emotional issues addressed. I do not mean to be mean and I do not want to cause you nay pain, but you are going to have to get your own focus onto the non-medical side of all this too and stop protecting yourself from every negative, normal human emotion by focusing on how great a medical care coordinator you are and how the medical staff can't remember every detail as well as you can.

I have a feeling you would hate and reject me as a health care provider because if you asked me what your mom's potassium level was last visit or two visits ago I would probably be honest with you and say I would have to look it up. I could be reading this totally wrong but if that's the feeling I get maybe that is the feeling some of your mom's providers are getting too. And if I was your sibling, whether I was a health care provider in real life or not, I would be as intimidated as hell and afraid to get involved for fear I would not be up to your standards of knowing everything that was in the big binder.

One thing I have to keep in mind as a health care provider is that health care is basically an inconvenience and something people would rather NOT be deailng with at all, so they can get on with living their "real" lives. One of the best things I can do for a patient and family is to simplify a care routine and get some of the health care stuff out of their way. Granted, it is often necessary to do a bunch of things consistently and properly in order to have enough wellness to do that, but the healthcare is not the primary thing, the wellness is. I have made a diagnosis of "fun deficiency" more than once when the focus is way too much on the chronic illness that will not go away, though there is also such a thing as "picnic-in-the-park syndrome" when people won't do the stuff they really need to do because they underestimate their chronic illness and its possible complications that CAN be avoided. There has to be a good balance for a person to live as well as they can.
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What I am reading here is..... you are beyond exhausted, your family is full of unconscious morons.... and the thought of having to tell a medical person, all of this, over and over, is your breaking point.....

My question is.... does your family inquire about your mom???? If not, then stop feeling it necessary to detail all that is going on with them...you sound so tired and frustrated... and I know for me, when I am like that.... my patience goes out the window.....recently a speech therapist was droning on and on about the same things and talking down to everyone in the room....she has done this before, and I never saw her DO any therapy with Gene... I finally interrupted her, told her we got what she was saying, and asked her what line of therapy she was going to do with Gene....then I left the room for a little while, when I got back her whole attitude had changed..... I'm sorry that her work load is such that she was trying to do the impossible with Gene at 7 o'clock at NIGHT.... he was very tired and had no intention of cooperating with her....but she is the exception to the rule.... most are tired, but receptive if they feel we acknowledge their job, the toll it takes....

And as a paid caregiver myself,,, I do see a different expectation of us.... like we are this never ending source of energy and information.... robots with no feelings, no problems, ect.

So, I am hearing you are very frustrated with your family..... if they aren't asking... then take care of you... your mom.... and let them find out on their own... sending you lots of hugs from one very tired caregiver to another....
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I hadn't finished but it posted itself.
Keep the medical history to one page and typed so it is easy to read underlined etc
Have your three ring binder with you so you have the answers available. You can always hand over single sheets so the nurse can photocopy.
That is all I can think of but remember a medical assistant wont have the same knowledge as a RN so make it easy for them.
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9thdaughter
Having all of your mother's medical history at your fingertips can be extremely helpful to your mother's medical caregivers but also quite frustrating when time is short
Here is what I would do (Remember you are dealing with people of different levels of expertise )
List of medications with trade and generic names, dosage and times taken and any special instructions ie "give 2 hours after regular meds"
Current medical problems ie hypertension, left hemiplegia from stroke 2010.
Recent lab results, x-rays
Current treatments ie dialysis 3 times weekly at hospital ABC In home physical therapy
Recent surgeries(last five years unless still causing problems)
List of current physicians with phone numbers
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UNLESS the worker comes in with an attitude from the get go or is mistreating my mother in the way they are handling or moving her around. Then I speak up and say something, not in a rude or harsh way. Working at a hospital and working over 10 hr days I know you can get tired, however that doesn't give the excuse that they can treat their patients rudely or carelessly. I do not blame my mother, as someone hinted at, for her health problems unless it is because she is eating something that she knows that she shouldn't because of her diabetes or renal failure. When she is feeling good, she is in complete control of her personal hygiene, food choices, chores, etc. She prefers it that way. What I do get frustrated with, is that for 15 years I have been the only one out of the 9 who has taken care of my mother with absolutely no help from my siblings. Not in her care or in monetary support when she couldn't pay for her own medications (which she has over 20 different meds), or even putting on a handicap porch on her house because she can't use steps very well. I don't have a job that pays much more than minimum wage and they all have more money than I do. It is not unreasonable to expect help from them. I am the one who gives my mother her shots and so forth. They don't even want to learn how to do that. If all I ask is for them to educate themselves on what my mother goes through than for me to retell each and everyone of them each time she is in the hospital, and to let me get my frustration with those healthcare workers who has given problems in the past, then I feel they should do so. As for emailing, I have done that and also texted as a group. They either don't read them or don't care and ask for the same info again. I do have a medication list, a list of past medical history and procedures, etc. It is a large three ring binder that I give to everyone with notes from each office visit, lab work, etc.
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Sorry, last post got cut off for some reason. To continue, UNLESS
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Just so everyone understands a few things after a couple of days to calm down with the argument with my sister. First I don't yell, scream, or give an attitude to the healthcare worker UNLESS
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Of course you are allowed to feel frustrated. How could you not? But as has been correctly pointed out, what you can control is how you behave.

Because I have been told - by people who like me, note, and work productively with me - that I can be "challenging" and "uncompromising" (when I thought I was being nice…!) - I am INCREDIBLY careful to speak courteously to and be patient with every single person my mother and I come into contact with. You have to concentrate hard on what the impact of your words and actions will likely be on the person you're dealing with, and what the outcome will be. So, for example, even if some harassed nurse or clownish medical student has done something moronic, it is NEVER going to help if you blow your top or make him or her feel humiliated. At such times, take a deep breath and make a conscious effort to be extra understanding - you'll get the problem solved quicker and earn Helpful Relative Points with the person at fault.

The issue of your mother's not taking to a particular person is slightly different. Start by thinking carefully about it: from what you've observed, is your mother's dislike reasonable? She thought the PT was being superior - was it just an unfortunate manner, or did you think so too? Have you noticed other patients nudging one another and whispering? I can think of one cardiac physiologist that no one in our clinic wants to be treated by - word gets around. On the other hand, there are perfectly good, capable people my mother lays her ears back at for no discernible reason at all; and if that's the case then it's your mother's attitude you'll want to work on. After all, she doesn't have like this person, just co-operate for a brief period. So if there's no problem with the quality of the person's work, yes, give him or her a chance - don't reject someone who could be very good indeed at the job in question just because he's got an irritating personality.

I agree that in an ideal world people who see or work with your mother regularly would have a good grasp of her history. I feel blessed that my mother's family doctor's team does seem to have been beamed down from that ideal world, but boy! - do I appreciate that I am blessed. In this real world, it hardly ever happens; and think about it: would you rather the nurse or doctor or whatever interrupted what she was doing to look up a particular point or just quickly checked with you (or, God forbid, didn't bother to check at all)? To expect them to carry every detail around in their heads is completely unreasonable - of course they can't. Be vigilant with the aim of being helpful, not critical. Would you rather get a good job done in spite of small lapses, or go through every member of staff until you've weeded out all the ones who aren't perfect? There won't be many left.

In your shoes, having mulled over the comments made, I think I'd be inclined to go discreetly to the manager of that centre, explain the stress I was under, and eat some humble pie (only a bit, not too much to get down!). A gesture of that sort would be appreciated more than you might think and could help you reboot the relationship on a better footing - they'll have more sympathy and understanding of what you're going through, so you'll find it easier to get along with them, and with a bit of luck you'll all be back on the same side.

For what it's worth, I don't think you're being negative: I think you're doing a heck of a job taking first rate care of your mother with minimal input from other people who should be helping, I think you should be proud of yourself, and I completely understand that it would be a huge relief if you could trust her healthcare workers to be as conscientious as you are. The trouble is, perfectionism can make life very difficult for people who are trying to help. Trust me, if you meet them halfway it can work miracles. Good luck, make friends.
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Your question really seems to be...are you allowed told hold a grudge against a health care provider that you've had a problem with in the past. Is there an alternate therapist who can be assigned? Then maybe. Did your mom not like him for a particular reason? My mom takes instant dislikes to certain nurses, therapists and then has no memory of that two days later. Frankly, physical therapists are rarely warm and fuzzy people as their job is getting people to move things that hurt. All of my pts have been tough love types...my knees and shoulders are better for that.
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I am totally confused. Are you frustrated because your siblings can not remember lab results and their meaning? how could they and why should they?
All they want to know is why Mum is in hospital this time and how long she will be there and what does this admission mean in general. A simple answer like "Mom's blood work is messed up again and she is dehydrated so she will be here at least three days and given IVs to correct the problems"
If you are having issues with not getting needed help from your siblings with mom's care at home that is another issue.
mom's records should list all of her problems and her current problems in more detail so all the healthcare workers can quickly get the picture. keeping a nice clear typed up list of current medications handy saves a lot of time and anyone that wants it can easily copy it. In fact I often just hand over a copy and the job is done especially if I am seeing a new Dr. As other have said be patient and make peoples jobs as easy as possible. They work long shifts these days and have homes and families too. Be polite to them and they will be polite to you and voice your appreciation. Keep your family updated with emails etc and avoid frustration. One email copied to all the others is quick to do. If they aren't medical say it in lay terms. As well as the med list you might also have a brief medical history available too. if you take her to a neurologist fro the neuropathy in her feet it saves time if he knows she is diabetic, things like that.
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Dear 9th; Those of us who work in a field (medicine, psychology, auto engines) take it for granted that the rest of humanity has the same base of knowlege that we have. I know that I make that assumption about the parents of the children I deal with (and even with my own daughter, in respect to her son). Do any of your siblings take chemistry or biology or anatomy? Most people have no idea what the kidneys REALLY do, or that high blood pressure can have an effect on them! Much less stuff about potassium and other electrolytes. You are the point person for your mom's medical care because you have the knowledge base needed; you can't assume the same for the rest of the family. Set up a blog, a page that all can sign in to or simply send email blasts. It's been working pretty well for us. Sorry that you are dealing with so many of you mom's medical issues and don't feel suppported. Post here and feel the love!
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Group email, group text.....If you're the caregiver and your brother and sister would like to know what's going on with mom can you send a group email? Or if they're on FB and you're on FB you can start your own group that is shielded from the rest of your FB friends. Lots of ways to keep them in the loop and keep your stress level down. Also, people who are not in the medical profession often have no clue what we are talking about when we talk about potassium levels and kidney filtration. People not in the medical profession usually don't know what these things are and how they relate to your mom's health. Although most former and current caregivers would be an exception. ;-)

My brother was the same way. I'd rattle off a bunch of tests and lab values regarding my dad and he'd have no idea what I was talking about. When it came time to revisit some issue or another and I'd talk about lab results or ejection fraction or whatever again, my brother didn't understand what I was saying.

It's like when I go in to get my care fixed and the mechanic is telling me what's wrong with the car. I have no clue what he's saying because I don't speak car. Many people don't speak medical. It's a good opportunity to teach your siblings what these things are so they can have a more thorough understanding of what's going on with your mom.
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You probably do have an attitude, although you do not notice it. Although you feel that you basically have a right to have an attitude. Sorry I deal with a sister with an attitude and it does drive everyone crazy!

I understand where you are coming from and have actually done the same thing a time or two but I think you are stressed and under a lot of pressure....you are probably all business and that comes off in a bad light. You need a vacation and a yoga class!

Take care of yourself or you may wind up dead before Mom....that's what I'm afraid of!!!
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I have found that when people ask the same question over and over again, it is because there is a different question they are really asking but can't put into words. With those siblings, I doubt it is the serum potassium and magnesium they care about. I think they are trying in some way to ask why or for how long she is going through all this and what is going to happen next. This really is hard. And Caring Bridge can be wonderful. And we health care providers can be frustratingly human too, but the best patients and loved ones figure out how to get the best out of us most of the time...mot of us sincerely want to give our best and just sometimes miss the boat or miss some subtleties of what people really need most from us. We are no better than most people at seeing how we really are and how we really come across, but most of us really care.
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Wow. Even knowing now what the question is supposed to mean, I have a hard time reading it and sorting out your frustration with the medical professionals from your frustration with your siblings. So, OK, with that further information I'd say we covered the medical professionals side. Here is my comment about your siblings:

You may certainly feel as frustrated with them as you care to. Just be aware that this does them no harm, teaches them nothing, changes nothing, and probably causes you stress.

Why not set up a blog on a site such as Caring Bridge? You can post each message once, and all who care can read it. They can even go back to previous messages to be reminded about the three measures. You can post a picture or two now and then. This will fulfill your responsibility to keep family informed, and, I hope, reduce your own stress levels.
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Maybe that's the whole problem. If you can't remember how to pose the question, how do expect them to have the right answer?
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I must not have made myself clear when I was talking about who kept asking the same questions each time she is in the hospital. It isn't the health care workers, it is my sisters and brother. They have taken no interest in finding out exactly what is involved with my mother's health. I work in the medical profession and know that there are thousands of patients that are seen in the hospital. It is only a handful of individuals that I deal with in the healthcare that give me the most problems. The majority of the time I have no problem with the hospital employees. With my sisters and brother, however, for the past five years my mother has been admitted to the hospital for her kidney function. There are only three things that I mention to them that the doctor is watching the lab work for, kidney filtration, potassium level, and magnesium level. Each time I have to explain it to each and every one of them. They don't even try and remember what I tell them in regards to this. That is what I was asking, is it natural for me to feel frustration with family members who don't take the time to listen and retain what they have been told numerous times over the past five years?
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I'm an impatient person by nature. I want everything done and I want it done yesterday. That's my stuff, not someone else's. And knowing this about myself I have to watch my frustration and tolerance level and I have to work on it everyday. In the grocery checkout lane, at work, in my home life.

I've worked in healthcare my entire adult life and I have seen healthcare workers who were treated poorly by family members not give their family member the attention they'd give to some other patient. This isn't the norm and it is certainly unethical but it does happen and when my dad was in the NH I remembered that every single day he was there and made sure I treated the staff kindly and with respect. Not just because I wanted them to treat my dad right but also because I wanted to be a nice person and these were the folks who had taken over my dad's primary care.

In the last few years (which is pathetic because I'm already 44) I have learned that you catch more bees with honey than you do with vinegar. And we've all witnessed some customer in some line somewhere having a meltdown and going off on the poor employee. What do we usually think of that person? That they're childish and maladjusted and maybe a little unhinged. And then we make sure that we're extra nice when it's our turn to make up for that person who went off before us.

My dad was so hard of hearing that he could never hear anything that medical personel told him so I'd answer the questions for him and he was fine with that. But to someone who didn't know he was profoundly hard of hearing they'd always look at me like I was some harpy who never let my dad get a word in edgewise. I was frequently asked, "Is this your father?" and after about the 5th time of being asked that I began to tip a wink in response to the question and say "No, he's my husband. I married him for his money."

I've also learned that if I seem to be engaged in conflict on a regular basis then it's most likely because of ME since I'm the one constant in all of the situations.

Also, if we complain or gripe a lot and then something happens that deserves to be complained or griped about we're not taken too seriously since we have that reputation to begin with, like "Oh, Mrs. So-and-So is bitching again". Once we have that reputation we're never taken seriously and that can get in the way of caring for our elderly parent.

And like the others have said, our parent's healthcare providers cannot be expected to remember our parent's medications or illnesses or conditions. That's why they have charts, so they can refer to them and see our parent's medical history.

If we find fault with everyone and everything no one is going to listen if we ever do have a legitimate issue. You may think something's unfair but what is unfair is your mom not getting adequate care because her healthcare team may not feel comfortable with you.
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If I read your question correctly, you're expecting hospital employees to remember your mom and her medical history from visit to visit? If that's right, you're expecting an awful lot from employees who are overworked and understaffed. Your mom is only one of probably hundreds of patients they're dealing with from week to week or month to month.

Is it frustrating to have to repeat info over and over? Yes. I took my mom to the cardiologist last week and they asked for her meds when we got there. I gave the receptionist the information. When we went into the exam room, the nurse asked for her list of meds again. I'd just given them that information at the front desk, but I didn't get upset about it. They're double checking, which is good.

You get more flies with honey than vinegar. Your goal should be to get your mom the best care possible and the way to do that is to be as kind and considerate of the healthcare staff as you can. You need to speak up if something is wrong, but you can still speak up in an even , non-aggressive way. Come here to vent, but keep your cool with the people who work with your mom.
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You certainly have a right to your feelings. If you feel frustrated, you feel frustrated, and you don't need to justify that to anyone.

How you feel and how you behave can be two different things, as pstegman illustrates. When you are dealing with your mother's health care workers your goal is probably to get the best care for her that you can. It isn't to be "right" or to show the health care workers up, or to express your feelings. (Come here to express your feelings. We understand.) Keep that in mind as you interact with them.

Your mother has a big basket full of medical problems. That is not her fault, and it is not the fault of the health care workers. Try to work with them so that they can do their jobs and use their knowledge to help your mother, without a lot of negative vibes getting in the way.
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I feel frustrations too and I have been told that when I ask a question it sounds like I am barking an order. I try to take an Ativan before I talk to them and I try to remind myself to ask a question instead of making a statement. I know they repeat questions, and I remind myself that some patients change their answers a lot. I remind myself that they have a hundred patients and I have one. And I try to remember to say please and praise them and thank them when they get it right. It's not easy. Not for us. Not for them. They burn out just like us. We just have to hold hands and get through it.
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medicine is undergoing some major changes right now as the federal govt tries to institute some effeciency in the system from top to bottom. the providers dont have the time to educate us about things that are complicated even to the specialists. if youre patient and respectful towards the professionals i think theyll be appreciative and treat you kindly in return. they are overworked and under a lot of duress.
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