Update
I have been wanting to post and let you all know how things were going but kept waiting for a meeting with the doctor. Well, that has not happened. The new administrator at DH MC asked the social worker to set up a meeting for me. That woman called almost two weeks ago and said she was going to do that. She never called back. I was hoping to meet with the doctor last week when one of our sons was in town and am feeling disappointed and annoyed that it didn't happen. One of the nurses looked at his meds for me about a week and a half ago and said she didn't see Seroquel on the list. The geri-psych had put him on Seroquel. She did tell me he is back on Trazadone which the geri-psych had taken him off of. The doctor has also discontinued DH daily aspirin which he has taken since his quadruple bypass surgery nine years ago. He put him on Lexapro and Resperdon after DH acted innapropriately with one of the volunteers. Now he has doubled the Lexapro and halved the resperdol. All of this with no explanation. Meanwhile, DH is sleepy and tired and having trouble stringing his words together to form a sentence. He can no longer play rummy which was the only game he could still play. He could still play when he came back from the geri-psych unit over three weeks ago but that is now gone. Most days when I get to MC, he is in bed even if it is afternoon. I think he is overmedicated. It breaks my heart to see him like this. At the same time, a couple of the other residents have told me that when he is at the table with them he talks to them so that is encouraging. I don't know what to think. I know his Alzheimer's is progressing but how much is progression and how much is the medication. I would like to fire this doctor but I don't know what other doctor to call. His former PCP is not well versed in dementia care.
Comments
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@White Crane , I am so sorry to hear how this is going for your DH. I found at the hospital I had to really sit on them about the drugs. There were some days my DH was so overmedicated he was practically catatonic. Since they were experimenting and that’s why he was there, I tried to be patient. But when I really needed to speak up — by the end they were giving him seroquel .25 mg at night to keep him asleep — and he was really out of it the next day, I got them to halve that dose to 12.5 mg and it worked just as well. Can you get the doctor’s phone number from the facility and call or text him/her? Where my DH is, everything seems to happen that way,even when I am in the building. The hospital released DH on NINE medications, four of which were over the counter meds. I have asked the facility to hold three of those until I can speak to the doctor tomorrow. Pushing drugs is what hospitals do, and in DH’s case, giving him too many seems to make him stop taking the ones he really needs.he was totally compliant at home, but he was only on three meds. Don’t give up. Please keep being the squeaky wheel, as @M1 would say. It is the only way to get things done in a healthcare setting. Hugs to you.
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@White Crane , you might also ask your DH’s geripsych to talk to the facility doctor. Tell them that’s why you need the number, and that you would like everyone to be on the same page with his meds. Sometimes it is easier to getthe doctors to iron this out, and the facility should accept their decision.
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@White Crane
I am sorry this continues to be so frustrating and disappointing for you.
Two thoughts. Firstly, did the doctor change the Seroquel for Risperdal (generic risperidone)? They're very similar medications and would typically offer the same results in terms of agitation and sexual behaviors. Both medications have a reputation for sleepiness, so that could explain the doctor attempting to lower that dose and adding the Lexapro (an SSRI) that is generally thought of as a "safer" medication with a similar calming and sexual-urge dampening results. My dad was on a Seroquel/Prozac cocktail for similar behaviors; combining them meant he could take lower doses of each which helps keep dosage-related side effects to a minimum.
My second thought is the Lexapro. It's generally thought of as one of the better SSRIs in terms of efficacy vs side effects. I took it for a little over a year not long after it was first released primarily for a recurrence of PTSD and anxiety— MIL was dying, my home was destroyed in a flood, my DH was being bullied by a manager at work/traveling constantly and my son was struggling in school/being diagnosed with autism, ADHD, GAD and dyslexia. I was a hot mess, and it initially allowed me to be OK— I was able to function and power through all that I needed to do. About a year later when things settled down, I found that the Lexapro started to cause side effects— while tiredness is not uncommon with it, I found myself sleeping 10-12 hours at night and craving naps. More terrifying was that I had trouble remembering things which is why I weaned myself off of it. I'm told this degree of sleepiness and confusion is "very rare" (less than 1% of users report it) I would absolutely consider it for PTSD, but for my current situational anxiety my PCP and I opted to go with Wellbutrin.
HB1 -
tigersmom, thank you for the suggestion and the encouragement. And I will continue to be a squeaky wheel!
harshedbuzz, thank you for your insights. DH is sleeping so much now and has a rather flat affect. He seems disinterested in doing anything. I will look into Wellbutrin.
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Brenda it is beyond frustrating that the doctor won't talk to you when you hold his medical power of attorney. You may want to mention that when you "squeak," as you should definitely do.
If he's not acting out, the risperidone is probably working. The question of whether it's too much is hard to answer—I do think in general it causes more somnolence than Seroquel. But a lot of folks sleep more with progression anyway. This is happening to my partner too, and things we used to do to stay occupied—art projects, puttering with plants—have gone completely by the by. We occasionally sit outside when weather allows, otherwise she's pretty much in bed.
I would find out when the doc or any associated nurse practitioner makes rounds and park yourself by the bedside, with communication with the director of nursing that you MUST speak with them.
I wouldn't worry so much about the aspirin at this point. Hard to give these things up though, I know.
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Thank you, M1. It looks like I may have to do like you said and park myself bedside and make sure the director of nursing knows I want to talk to either the doctor or the nurse practitioner. Besides the drugs I mentioned, he is on several others and I don’t know what most of them are.
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I would be cautious about Wellbutrin. It can decrease appetite and can activating. It has a reputation for being the least likely medication of its kind to decrease sexual desire; specifically it can sexually activating. DS's psychiatrist (he specializes in high functioning ASD, ADHD and Bipolar) will not routinely prescribe it for male teens and young adults in his practice for that reason.
There are other SSRIs that could replace the Lexapro. You could also ask why he felt Risperdal is a better fit than Seroquel and whether the dosage is similar.0 -
I really question what seems to be abrupt drug changes and would be persistent about talking with the Dr.
I would not continue with phone calls. Switch to emails. That way you have documented correspondence.
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The way you are being treated, lack of communication and answers is infuriating. Forget squeaky wheel and opt for pain in the a#$! When my DH was in the hospital for agitation, I ran into the same thing. I phoned, emailed and asked questions on a patient portal when one was available, often several times per day. I had calls in for everyone who was connected with his case. I finally got answers after a few days and his meds were straightened out. The hospital psychiatrist spent about 45 minutes talking to me and explaining medications and how to administer them at home. I haven’t had problems with communications with any of his doctors since.
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I got a copy of DH medication list from the DON today but need help knowing if anything sounds excessive. The Trazadone does concern me and the doctor has taken him off Seraquel.
Amlodipine Besylate, 10 MG in the morning.
Divalproex Sodium Tablet Delayed Release 250 MG in the morning (Depakote), 500 MG in the afternoon and at bedtime.
Escitalopram Oxalate 10 MG one time daily (Lexapro)
Losartan Potassium 50 MG in the morning.
Namenda XR Capsule Extended Release 28 MG one time a day.
Risperidone 1 MG, one tablet in the morning.
Rivastigmine Tartrate oral capsule 6 MG (Exelon) two times a day. The website said this should be given with meals in the morning and evening but on Sunday they gave it to him at 10: 00 AM.
Trazodone HCI 25 MG three times a day.
When I got there today at 2:00 he was asleep and had not eaten much. He never did really wake up, just kind of mumbled uhhuh when I talked to him. I got him to eat half a sandwich but he ate it with his eyes closed.
The social worker called this morning and said the doctor would call me but didn't know when. The DON said he was in the National Guard and was on duty all week. I need to know how much DH is progressing and how much of this is medication related. He is almost always asleep when I visit him these days and it takes a while to get him out of bed. Today I couldn't even get him awake enough to talk to me.
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Brenda the things I would question: why give risperidone in the morning and not at night? Why dose trazodone three times a day ( typically dosed only one a day and also at night)?
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Agree with everything above. There should be a physician covering for the regular one, right? I know that person might not know your husband as well. But how can the physician be doing National Guard service and not have delegated care to another physician during that time? (FYI, I’m an MD)
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Thank you, M1 and housefinch for your input about the medications. I may be wrong but it seems to me that every time he starts waking up they give him another dose of Trazadone. I am definitely thinking he needs a different doctor but am not sure who to call. If I can find out when the Nurse Practitioner will be there, I will make sure to be there and talk to her. This is beyond frustrating and disheartening. I understand that DH behaviors need to be controlled but surely this can be handled in a way that he can still function.
I would like to send emails to the doctor but can't find an email address for him. Maybe the facility has it. I can ask.
Victoria, the facility is part of a chain. I will keep your advice in mind.
Thank you all again. This forum is a lifesaver.
Brenda
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They may be using it for depression (trazodone) because the off-label use is for sleep. It's still odd anyway, because there are far more effective antidepressants out there like Lexapro, Zoloft, Effexor.
If they respond saying it's for depression tell them you no longer want him treated for that with trazodone, which is a SARI, and you want a SSRI used instead so he will not be chemically restrained. Please use that term and it will subtly alert them to the fact that they are purposefully sedating him all day.3 -
I ran these through Drugs.com and found two major interactions and the rest had moderate drug interactions. I would go there and print out the information. I would copy and send to the facility.
Make a copy and have with you when you look at the record which will show who had ordered what.
Please look over your contract to see who is allowed to prescribe and exactly when you are to be informed.
Get a copy of all drugs your husband was on when he arrived. Find out when they were stopped and why.
I am really uncomfortable with what is going on.
Additionally carry with you a copy of the DPOA document.
Tell the facility when you will be there to meet with the NP and social worker.
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I finally got to meet with the doctor yesterday. He said his guard duty doesn't start until Friday. M1, I did as you suggested and parked beside DH bed until he got there. I had his list of medications with me. It started out a bit tense but I told him I thought DH was being over-medicated and was sleeping every time I came to visit him and I had a hard time waking him up. I further questioned the need for so much Trazadone. The doctor listened and told me he was quite upset about DH going to the geri-psych unit last month. His jaw was clenched when he told me that. He said he could handle things and there was no need for that. I don't agree but I let him talk. After much back and forth, he said he was going to gradually taper DH medications down and get him off of as much medication as he could. He said that was his goal. He first said he was stopping the resperidone immediately and after a week would start on the Trazadone. Then he changed his mind and ended up stopping both drugs yesterday and ordering the Trazadone as needed. The DON was standing there and didn't agree with doing that for fear of a recurrence of behaviors but the doctor was adamant. I, too, am concerned about a recurrence of the aggressive behaviors and am praying this works out. Yesterday, DH was again like a zombie. Lord willing, when I visit tomorrow there will be some improvement. I am worn out trying to deal with this but DH can't do this for himself.
Brenda
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such an excellent report, Brenda! Good for you, you were calm but determined, and stayed on topic. Be proud of yourself, and try to take a refreshing nap, too!
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This doctor's ego is interfering with your husband's care and I would discuss that privately with the director. Awful. Like a dog marking his territory.
As hard as it is, I would request referral back to the geri psych unit that first treated him, and I would ask the director if they have any alternative for who could treat your husband. I think it sounds like you have an ally in the director and I would use that.
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Whoa, M1 called it . This Doctor seems more interested in wielding power than "first do no harm."
I hope his orders don't cause behaviors to flare that cause the home to give notice and that the Director can advise if you can have another Doctor be primary. .
As others have suggested , it's time to start papering your contacts with this place. They document what they chose to in his file, sounds like you need to also.
Post visit/convo notes about what they've told you , things they were to get back to you on etc.
"As we discussed.. " " I'd like a clarification about …"
Don't want to end up in a "recollections may vary" situation and they have their version in writing.
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I'm so sorry.
I fear "trazadone as needed" with the DON making the call won't change a damned thing. I hurt for you both.
HB1 -
Wow! I cringed reading the long list of meds and dosages for your DH. Did the doctor explain what each medication is treating/addressing? I see your DH is taking a very high dosage of Divalproex Sodium (which seems to be the miracle drug for my DH at 125mg 3x/day), but why was it prescribed for your DH? I sincerely hope this gets all sorted out for you and your DH.
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Good for you, Brenda. That seems like an awfully long list of medications to be used at the same time. I think M1 gave you good advice.
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For what it's worth, that's not a long med list really. Amlodipine and losartan are for blood pressure. Namenda and rivastigmine are for Alzheimer's. One could argue whether they are doing anything atbthis point but it's hard to discontinue them, if he's not having side effects. The Depakote, citalopram, risperidone, and trazodone are for anxiety and aggression. All reasonable. I guess the plan is to see if the Depakote and citalopram alone are sufficient to prevent recurrence of aggression.
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When I visited DH this afternoon, I was pleasantly surprised to see him up and out of his room and playing Bingo! This was the first time to see him out of his room on his own in a while. The nurse told me he had been up almost all day and had eaten his meals. When I joined him at the table he seemed glad to see me. His eyes were so much more aware than they have been. When I was there on Wednesday, I couldn't wake him up and he only mumbled a response when I tried to talk to him. The nurse called me yesterday and told me the doctor had cut his Depakote dosage. I am holding my breath though fearing the return of the aggressive behaviors. Even so, it felt so good to be able to be with him and have him alert and aware. He did get tired after a while and wanted to lie down but even then he was more coherent than he had been. As I was leaving, one of the physical therapists stopped me and said they were going to do some therapy with him to try and strengthen his legs. I was happy to hear that.
The doctor does indeed have an ego and it worries me. When I was talking to him on Wednesday, he said none of the residents need to leave the unit and go to a geri-psych facility because he could take care of them. He also said that when they do go that he has a hard time getting them off all the medications they put them on. He was adamant and looked angry as he said it. He also said he loves his dementia patients and would rather be on the dementia unit than seeing patients in the other part of the facility. I just listened.
Judith, I did go to drugs.com and is was like you said about the drug interactions. Thank you.
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That's good news overall Brenda. But…I'd still talk to the director. That's not acceptable professional behavior. Your feedback is very important.
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thank you, M1. I think you’re right.
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We can't catch a break, can we?!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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