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?
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.
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....
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.
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
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.
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.
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.
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!!!
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.
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.
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.
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.