My other post had to due with the difficultly in obtaining written narcotic prescriptions for my father on a timely basis. I thought it couldn't get worse...but it did.
Last week the Hospice RN called my father's PCP with a request to refill his two narcotics. She called me to say they were at the front desk of the clinic and I could pick them up. So as usually I obtained the SEALED envelope and delivered it to the pharmacy unopened for refill. They all know me and my husband by first name because Hospice will only approve prescriptions for 15 days so we are there often.
My husband went to pick up the narcotics that evening and there was only one RX. The pharmacy claimed that was all that was in the SEALED envelope. So the nest morning I called the office because our Hospice RN was off for the day. The refill nurse was initially rude but said she would call back after she had "investigated" the situation. True to her word she called me and apologized for the error. She said the RX was signed and waiting for me at the front desk.
So later that day I went to pick it up. You guessed it, it wasn't there. It was Friday and the office would soon be closed and my father would be out of pain medication for the weekend. I recounted my story to the receptionist and she said, "It's not here." I asked her please to check on it. After a 20 minute wait the physicians nurse appeared with a journal in her hand. The area was filled with about 15 other ppl. She was very loud and sarcastic and pointed to her opened journal and said, "You're NOT getting another prescription. They were both written on the 10th. Do you UNDERSTAND, you are not getting another one!!!"
I had only 3 hours of sleep again. I had been holding my father upright so he could breath better and I was exhausted . I lost it and loudly said, "Do YOU UNDERSTAND that you have made the mistake. Don't accuse me of stealing the sh#! Do YOU UNDERSTAND my father is dying and YOU are making the process WORSE by your incompetence!!! My father is DYING!!!"
Suddenly I was whisked into the office. The doctor had left for the day. Calls were made and the wonderful pharmacist that had opened the sealed envelope verified there was only one and not two RX's in the envelope. The RN that had called me and told me they had made an error was also called and verified what had happened...but still the RX could not be found. The front desk ppl verified that I nor anyone had been there previously that day to pick up an envelope. Again they made the error. So the rude RN was now very apologetic and said, "You shouldn't have to go through this." And I said, "Than you shouldn't put me through this." I left with a written RX signed by another MD. It was a horrific experience.
In about another week he will need refills of both those narcotics. I am dreading and sick at the thought! It upset me so much couldn't even discuss this till days later.
I have talked to all the Hospice Staff involved in my father's care as well as local nursing staff. The treatment and difficulties I have experienced is not the norm. It seems to be just this particular physician and his staff. It's far too late for my father to change physicians, indeed he won't even consider it.
Hospice will not, cannot by law pick up his prescriptions. Anyone have any suggestions?
I am thinking you might possibly get better service in the future from this group of clowns, following them being embarrassed and having to apologize to you. I hope so ... that's all I can offer at the moment. I go through this sort of thing with almost every single medical establishment, so I thought it was the norm.
Just last Monday, my husband went "off" after being home only a couple of days after a spell in the hospital. As instructed, I called his primary physician. Instead of simply telling me the truth, that the office was closed for Presidents Day, they put me through a 10-hour charade pretending somebody was actually in the office and actively phoning prescriptions into the pharmacy for me to pick up. Turned out I was talking to an answering service that never reached any doctor or nurse, and the prescription was a fantasy. Why do this to people, isn't it more work than just telling the truth??? I ended up taking him to the ER at 2:30am after messing around all day with the lies and waiting for the phone to ring, and driving back and forth from the pharmacy without getting any prescription. Doctors just hate caregivers, is my only explanation. Or maybe the office managers have some evil psych problem about control? Must be some reason for this.
Thanks for responding Lynne. I think you got it right, "evil psych control problems" with the staff. And yes I do think they sometimes hate caregivers. I don't think they know what the truth is....those answering services are a joke. I'm sorry this happened to you...and your husband.
If they understood how difficult the caregivers roll is they wouldn't behave in this manner. But no one understands until they have been there. I know I didn't and I have years of medical experience...some of it in long term care.
My Dad's Hospice RN just talked to his Doc's staff and insisted that the narcotic RX's be faxed and than mailed to the pharmacy from now on. For Hospice patients that is legal in our state. The idiot nurse said, "And what if the prescription gets lost in the mail?" Hospice RN said, "You'll have to take that up with the US Post Office. After the way you treated the daughter.. she is out of this."
Yeah for Hospice!!!
But some how I have a feeling this in NOT the end of this story. No wonder our senior citizens can't make it alone. I can't begin to tell you the mistakes I have caught that my father would have never noticed....but would have been detrimental to his health. Granted my father is terminal but even if he were not at 81 he could never wade through this pile of dung known as the health care delivery system.
I hope things are better for your husband. Are you his caregiver?
I am extremely glad to hear that the hospice could intercede for you. That repeated run-around they were giving you, was unacceptable. I had similar experiences with my mother during her last three months, but she was hospitalized and not in our home, so somewhat easier on me. I took family leave from work and abandoned all other responsibilities, just to stay at her bedside early morning through late night. It was necessary. Doctors would actually come in and ask me the nursing questions. One exhausted day, I went down to the hospital manager person and asked her how seriously ill patients can possibly make it without a personal caregiver camped out in the room, and the response was "They would have to hire a private nurse." I did just about everything, ask me anything about respiratory care ... anyway, this experience helped me make some decisions about what I will probably do if it starts looking as if I am going down the road to permanent helplessness ...
Thankfully, my husband has only occasional medical episodes with heart trouble, mostly, but a few other things too. When he is hospitalized, it is for extremely good reason and it's very serious. But I must be in charge of his regimens and drugs!! The mistakes and misunderstandings and goof-ups are unbelievable. He is getting better about understanding his treatments and caring abouit it, because it really is necessary to have somebody else double-check. These medications can be fatal if overdosed, it is vital to monitor and check and double-check and you can't just pop something in your mouth that was handed out to you. I grab bottles back from him and go online -- half of his medications have serious interactions with other drugs he is already taking. We are working on weaning him off of some of this stuff, to see how many drugs are merely to treat complications of another drug that was given to treat a complication of a third drug he doesn't even take any more ... the drugs alone start consuming your whole life.
We are doing much better this morning, after a very hellish weekend, thank you very much for asking!
I am glad that you and your husband are doing better. He is blessed to have you looking over things, especially his medications. I do understand the "mistakes and misunderstandings and goof-ups."
I often ask myself what seriously ill ppl do without someone else to monitor them, especially our senior citizens.
About 19 months ago my mother had open heart surgery. I and my sister sat at her bedside during those long days and nights, both of us are nurses. Mom was independant, about 74 and other than high cholesterol, fairly healthy. The facility has a great new cardiac unit. But still we caught and stopped errors and saw to it she received nourishment and was kept comfortable. She would get up in the middle of the night with tubes attacked and head for the bathroom totally unaware of her condition or surroundings. If we weren't there her IV's and drains would be ripped out and once she even fell. So we camped out there at night much to the staff's distress..
I brought her to my home post-op thank goodness my sister stayed for about a month. It was a nightmare for mom with drugs, pain and confusion. After a few months to the casual observer she looked "ok." However it left her memory impaired, unrealistic and disorientated at times. She is no better today and spends about 70% of the time here also..
Between my father and mother medications are a nightmare. Neither has any understanding of what they are taking, let alone what it is for, when to take it and what side effects to watch for. Obviously dad is terminal and I must dish out his meds but he still will take a PRN pain medication on his own most days. My heart knows that he would never survive for more than a few days in an alternative care setting.
So what do you do? I can't walk away from them. And yes this experience has made me make decisions I thought I would never make. I have made my two son's promise that they will NOT take me into their homes should I be unable to care for myself and my husband has passed, or not able. They are instructed to visit often, monitor my care to the best of their ability, take me out if I can go and write me long (large print) letters and send me cards and chocolates.....but more importantly, live their own lives.
Life is a journey, full of surprises. Many of them not too nice.
It is great chatting with you, too. I use humor to make myself laugh when it is "safe," it helps me when I start feeling depressed -- But I have to be careful about my spontaneous comedy routines that erupt here and there, because it often gives other people the entirely wrong impression.
You certainly have more than a full load. I also dealt with both parents being critically ill at the same time, but it was a brief time, three or four months. My father passed away within two weeks of my mother. They were on different floors of the same hospital. My husband and I were making plans to move them to the home next door to us when it looked like my mother was recovering ... but her condition went bad suddenly and my father simply gave up. Very shocking and surprising. It was an entirely different situation than what you have in your home, and I can't even imagine how difficult this is for you. During that time I saw what you mentioned -- the patients were not nourished, were not monitored for getting out of bed, unhooking and unplugging themselves, etc. I have to think most elderly critical patients more or less just "pass away" from reasons like this. Most adult children simply will not/cannot camp themselves in the hospital rooms. My brother's contribution during our shared sad time was to chide me for being a martyr and inviting me to barbeques ...
I am thinking that most people do not provide the level of care that you do for your parents and therefore have no idea of what your life is like. Well, people who come to this forum would understand and empathize, but not people in the general population. I have friends who consider themselves caregivers because they take mom, who lives elsewhere, out shopping once a week and answer her same annoying questions more than once a day, etc.
I do not think life should be like this, but I don't have any suggestions for changing things. It is your personality to care this much and feel this much responsibility. There aren't any Handy Tips Of The Day! that will make this any easier.
Gosh Lynne, I am so sorry that you lost both parents so quickly and so time close together. It must have been very difficult. I often wonder and have been asked which is easier on the survivor, quickly gone or the lingering. I just don't know. I think it is tough whatever the length of time but in different ways.
You got the martyr statements too!! I've heard them...and mostly from my brother also. I think that is the one of the ways he can deal with the fact that he gives nothing to our father. And of course there are the excuses that Dad was all HE thought he should be......another way to avoid and justify any time or obligation. And all Dad would like is an hour visit here or there. Brother offers a "beer" as his contribution.
I just saw on the news that studies now indicate or prove that it is possible to die from a "broken heart." Something I and many others suspected all along.
I beleive your assumption is correct regarding non-monitoring in health care facilities. Many, "elderly critical patients more or less just "pass away" from reasons like this.
You're also correct, there are no tips for the day to deal with situations like mine. No words to make this challenge easier. What I hope is that I have made my father's last journey on this earth as comfortable as possible. That he will leave this world knowing that he is cared for and loved.
I do find that laughing whenever I can helps. It may seem inappropriate to outsiders but I'd rather laugh than cry...and laughter is good for the soul and healing. I found stool on the tip of my father's nose after a hour and a half of cleaning him and the room up after he had a involuntary BM, I laughed. I was so busy cleaning everything I never looked at his nose. Dad was so embarrassed. My laughter eased his embarrassment and the tediousness and not so fun task became a funny memory. He laughed too.
So if there is a tip for the day it must be the old one..... laughter is often the best medicine.
I am a mental and physical mess being the primary caregiver for my mother - who has just enough dementia to destroy what is left of her life. I'll post my story sometime today - IF I'm not called to take Mom to the ER yet again only to scream to be discharged less than 24 hours later because she isn't "fixed" already.
This thread is the first one I opened on this forum, and while I hate that we're all in a terrible position, I'm glad to know I'm not alone by a long shot.
I agree with you Tuck. There are a whole lot more stressed out caregivers in the world with no time to call their own. Although we are the only ones who can solve our problems, it does help to have a safe place to vent with others who completely understand. :-)
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