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My LO in the nursing home needs one of her meds changed. Her outside neuro doc is willing to write a script for the new dose. Neuro asked me the best way to get the new script to the nursing home.



Silly me... I asked the nursing home via text for the "best way" to get the new script to them. The reply? "We need the new script before we can act on it." Ummmmm yes.... My question was HOW do they want the new script (i,e, so it doesn't get lost). Fax or some other electronic means? Carrier pigeon? I again asked HOW to get the new dosage put into effect as this isn't even a new med - just a higher dose. The response this time from the nursing home? "You should hand-deliver it to us." So many things are electronic now. It's not a strictly controlled drug either, so that's not the problem. My concern is that no matter what the drug is, how on Earth would my LO get it if I weren't available to do the hand-delivering of the script? Yes, they have in house docs at the NH but this is from an outside provider? So if I could not pick up the script and drive it to the nursing home (guarding it with my life all the way there), my LO would not be administered the new dose?



It continues the shock me how much family/friends are expected to do - even after the person is in a facility. It's not the first time I've hand-delivered something from a provider to the NH. What if she had no family to do this? I know many here have faced this same thing - the assumption that family or "someone" will take care of such and such. What if family cannot or will not?

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I wish I could use Beatty's expression here: "There will be no solutions as long as you are all the solutions".
But in reality, our elders would pass more quickly without us almost certainly. As it is they go on some years longer. The quality of those years I myself question.
This new script? We can't know how good she would do without it. Many people say "I am sick of dialysis and am stopping it; I will be gone in a few weeks". But that isn't always the case. Many keep on living quite some time. Many do not.
I have seen seniors die DUE TO medications, especially blood thinner types. So there is also that. I have seen a dosage of blood thinners increased the consequent demise from brain hemorrhage more often than I care to think of. I have seen seniors die of having blood pressure meds increased because pressure was up in office but normal at home--consequence? Low BP and falls that are the beginning of the end.
So who can know. Overall our seniors are living longer. A LOT longer. I don't think most are living with family now, but have no idea the stats on that either. I just remain uncertain whether that living long counts on the happy side of the full ledger at the final summing up.
Your supposition that your elder would be without this med until at least Monday is almost certainly true on this holiday weekend. Without great medical followup the script would likely not have even been changed at all. You don't say what the medication is; so likely your senior would be just fine for that three day period on current dose.
Your questions is valid for sure; but brings up a whole raft of other questions. There are so many seniors with no family at all. Are they really dying so much sooner? Who can know.
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Mysteryshopper Apr 2022
Thank you. And I think you're right that the script would not have been changed in the first place had she not been monitored and followed up and all of that. The drug is basically an anti-depressant being used off label. Somehow, some way, it seems to calm her delusions and makes her less fearful. She was living in fear and claiming she was being sexually abused by the NH staff. We have no reason to believe there's any abuse, so the drug was restarted (after a period of her refusing it). No more stories of abuse and she's much calmer overall and not scared all the time. She also sleeps better while on this drug, and neuro is looking to get her sleeping thru the night and wearing her sleep apnea mask all night - hence the dose increase. I think as long as she's living, better sleep and no delusions will help. But I'm glad you pointed out that not everything can or should be treated. We're run into medical staff who either want to treat everything or they give up too quickly.
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Mystery, If it were me, I would ask the providers who take care of the residents at the facility what you should do. Ask them how to get Rxs from other providers filled and started at the nursing home. It will be interesting to hear their answer.

Another option is to have the neuro doc send the prescription to the pharmacy the nursing home uses, and then email the Director of Health Services and cc the Director of the facility to tell them the new script has been sent to the pharmacy. Then insist they notify you when the medication has been received and has started being administered to your LO.

OR, if your LO has to use a pharmacy other than the one the nursing home uses (my mom has military benefits and has to use a different pharmacy than her AL uses), have the pharmacy deliver the new dose to the NH, and then email the Directors, as described above.

I, too, am finding out that I have to do a LOT of legwork for the place where my mom lives. I have no idea what we would do if I lived too far away to do it. I KNOW she would be in a worse situation if that were the case. It might require hiring someone else to do the legwork and the following up.
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Maryjann Apr 2022
This is what worries me about my MIL. Her husband, my FIL, passed away last month and she is adamant about not moving anywhere. She can eke along all right for a while as we have someone coming in two days a week and the neighbor is a retired firefighter, but it's completely a situation where when we move next year, we are going to be stuck figuring out what to do when she WON'T move because she won't go anywhere "cold" because she's "paid her dues" growing up in Minnesota. Until her Alzheimer's is so bad that she won't know where she's moving to, I guess we play it by ear. (We live approx 120 miles away as is with plans to move 1,000 miles away. My husband, her son, feels no problems with this because he knows that she would move away from us, and has in the past. What a family. . . .) But I'm worried because of this post. However, here we are.
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I agree with you. It shocked me how many gaps in communication there can be when someone is in a facility, and how we have to facilitate better communication, care, etc. My mom was in memeory care for all of a week, (she then came to live with us). When she was in Memory Care, the doc had faxed a change to her meds, but it went to the nurse's fax machine, and she left at 5, so the information wasn't received until the next day. There were nurses there round the clock, but the fax machine was in the nursing supervisor's office, who worked 9-5. Unbelievable. I had to double check and follow up on everything. My husband's mother was in assisted living for over a decade, and he'd often swing by there after work, and he had to intervene a lot on her behalf. If she wasn't particularly hungry at dinner, for example, he'd convince her to eat or drink something when he was there. Covid restrictions brought to light the importance of unofficial caregiving provided by family and/or friends, to suppelment the care in facilities. We were lucky in that we dealt with things pre-Covid. Before we faced those situations, I had no idea how much we'd need to intervene for our moms. I know some people have hired additional help to sit with their moms several hours a day while they were in facilities, but that can be prohibitively expensive. Caregiving responsibilities for Hubby and me (and so many others) became a second job. For us, it was the aggravation associated with back and forth phone calls, mis-communication, being put on "hold," (or sometimes "ignore"),etc., that added insult to injury. It was a relvelation as to how our lives would be impacted by all of this, sort of like an impacted wisdom tooth: it hurt, (but we attained wisdom along the way).
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Mysteryshopper Apr 2022
Yes. All of this. Thanks for putting it into words. I can't imagine your frustration that the nurse left at 5, so the fax wasn't acted upon until the next day. I could spend all day telling stories like that. Wow. My LO is in one of the better facilities in my area and things still go wrong.

I was accused by family members of "dumping" the lady in a nursing home so that I wouldn't have to "deal with her" anymore. It's sad that a lot of people don't realize that I'm *still* doing a LOT behind the scenes to make sure she gets what she needs. I feel very invisible right now. When I was up to my elbows cleaning up body fluids, I actually was doing something that others could see and therefore either appreciate it or not. My role right now is very stressful, but no one sees that I've accomplished anything and that just makes it feel worse because the assumption is there that I'm not doing anything at all.
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Mysteryshopper, anytime I need a new med script, my doctor forwards it to the pharmacy.

Find out what pharmacy the nursing home uses, then all scripts can be sent there, and will be delivered directly to the nursing home.
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JoAnn29 Apr 2022
At Moms AL, the Nurse was given the prescriptions and she dealt with the pharmacy they used.
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DEA controlled drug prescriptions at one time had to be hand delivered. They were not allowed to be faxed on emailed. I thought that had been changed. Its been almost 20 yrs I worked for a Pharmaceutical company and the Pharmacies who dealt with us had to mail or send with the driver any prescriptions filled. We actually had a "cage" that the drugs were kept.
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Horseshoemama6 Apr 2022
Controlled substances can now be electronic transferred but I believe there is a certain system they have to use.
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I think, like many situations, they try to delegate the work to family/friends. People are always trying to shove the work onto other people, so there's less work for themselves to do. If there's no family, they would have to find another solution -- or ignore the problem and do nothing.
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Mysteryshopper Apr 2022
Good point. There was another situation within the past year or so where my LO needed a test (again related to the fear/delusions/insomnia). Long story short, the test wasn't so simple and NH wasn't being particularly helpful - even though all parties agreed the test needed to be done. I got frustrated and asked NH what would happen if this particular LO had no family??? I asked NH to treat this situation *as if* the lady had no one to help. You're probably right that if there's no family, then NH has to think of some other way. Or, the problem gets ignored. Probably depends on the facility whether or not they get creative or just ignore it.
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During my mom’s NH years we frequently advocated and intervened to have everything in place for her care. Those in the NH who didn’t have advocates were cared for and kept safe. But they undeniably they received more minimal attention. It’s not fair or right
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Mysteryshopper Apr 2022
Well said. I think everyone in this particular facility does get the minimum and I'm pretty confident in saying that. People with advocates do get a little more it seems. Sometimes, people with advocates get a LOT more.
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I used to work at Social Services, and at least in Minnesota, social workers can intervene and ask for a patient to become a ward of the County if they are unable to advocate for themselves and have no family. It isn't a perfect system, and we desperately need a better one, but it's much better than having no one to speak for you. It does require a court hearing, however.
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Mysteryshopper Apr 2022
My state has something similar (I think). I guess I'm left to wonder how much individualized attention a patient would then get. Probably not much individualized attention would be available (i.e. arranging appts and hand-delivering scripts) but that would be more due to overloaded case managers than anything else I would assume. I was a case manager years ago in a field not directly related to elder care and I carried over 400 cases at one point and some of those were married couples, so that's well over 400 individuals that depended on me. I cared deeply, but there was only so much I could do as an outsider and with that many people.
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I truly understand your feelings. My dad was in and out of rehab in a snf for 4 months before the last time he went to rehab and then went to there ltc September 2021. I sware I should have just lived there 24/7 especially when he was in rehab. He had a pcp but used the va for some of his care. The second time he went to rehab when I got there they told me they were checking him for a dvt in his leg I told him he has 2 he is supposed to be on blood thinners. They said that information didn’t come over with his records and they didn’t have his records when he left the hospital with them. Then they wouldn’t give him his medicine the way va had said he should have it (he was in a private pay snf) I left a voicemail once with his social worker and told her if they couldn’t give him his medicine I would be more than happy to come give it to him whenever he was supposed to have it. Then once I kept trying to have them cut this one pill in half because it was to big for him to swallow whole he even told them he just wanted to take half at a time and the cna convinced him to take it whole. I kept getting the run around it has to be ordered by the dr that way and it was scored so it could be cut in half. The one thing I did finally find out when he went there the last time is apparently it’s up to the dr or np to handle all care and medicine they don’t consult with there pcp or any of there other doctors and all medications have to come through there Pharamacy. Then when he went to long term care it was easier because he went there on hospice it was still a battle on some stuff but not as bad as rehab. So unfortunately putting someone in a nh does not mean they are going to get the care they should have you have to stay on top of everything also unfortunately someone needs to go every day and others need to call it is definitely a lot of communication between everyone and frustrating. It’s like being a parent all over again except now you are having to advocate for your parents.
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I hear you. I ask the same thing to myself a lot, "what would happen if..."

As I'm finding out, the amount of involvement depends upon the level of care the person is receiving, the license of the facility, the level of the health of the person, what was signed on the contract with the facility, and federal and state rules.

With the first facility, Assisted Living, I authorized the facility to talk to the doctor and get medication. I was not happy with my decision. As it turns out, I wasn't notified that anything was wrong. They contacted the doctor and picked up the prescription. They did get the prescription from my preferred pharmacy. Then I got the bills. There was the time to communicate with the doctor (not covered by insurance) and the cost of the prescription was $35.97, 97 cents out-of-pocket after insurance, $35 facility service fee. The pharmacy was 22 minutes by car, less than 5 miles away. After you add in all the overhead, $35 was a fair charge, but it was still all out-of-pocket and not covered by insurance.

When I signed the papers for entry of my Mom to Memory Care, there was a signature for "allowing the facility to transport my Mom to the medical center". There was also another signature for "allowing at-center visits for wellness checks." I said NO to allowing my Mom to be transported, and did not sign or mark any option on the wellness checks.

In "allowing the facility to transport my Mom to the hospital", the transportation would NOT be covered by her health insurance. In addition, they could have sent my Mom to the hospital without consulting me first because the health of the patient takes priority over contacting people. So, whenever my Mom fell, they wanted to check her for concussion and wanted xrays (per medical guidelines). So not only could there have been transportation costs, there was the cost of someone accompanying my Mom to and while in the emergency room, until someone else showed up....$50 per hour, none of it covered by insurance (she didn't have a bruise from these falls.)

For the "allowing at-center visits to wellness checks", the wellness checks would be done by a medical group that was upstairs on another floor of the building. I was told it was things like blood pressure, drawing blood, etc. I looked up the name of the group that was referenced and could not find out anything about them. I did not sign the authorization. After repeated interactions for over a month and still no information, someone finally said they could send me information electronically. When I read what they sent, the agreement was to change her PCP (primary care physician) over to that group. At the next call, I declined the service.

Now I could understand doing this if my mother was under the constant care of a doctor, in palliative care or in hospice. However, my Mom is not in any of those conditions that requires constant medical monitoring.

So therein lies the dilemma:

If you gave the facility the ability to contact doctors and pharmacies upon your behalf, you probably will not get timely incident reports and you will incur potentially a sizeable amount of out-of-pocket costs that are not covered by insurance. In addition, the facility might not do things the way you think it ought to be done.

On the other hand, if you sign the papers so that you want to be notified before anything is done, then you also accept the responsibility to respond to the facility no matter what time of the day it is and potentially, need to find someone to do what they ask you to do. Worst of all, one will need to put up with the potential for conflicting processes.

For me, I want to be notified before they do anything. Maybe later, I'll be more "hands off". I told them that....
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babsjvd Apr 2022
Actually, I get very good communication from the medical group that calls at my moms facility. I can ask questions on my moms patient portal and are answered very timely. I have access to my moms chart and after care summaries. My mom is on Medicare and Tri care for life. My mom only occurs co pays.
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