Anyone have a parent on Namenda?

[Rushie]

Did they have any negative side effects?

My mom's on a low dose and one of her doctors wants to increase it, and another of her doctors wants to keep it the same or even get her off of it. Usually her doctors are in agreement with each other but this time, I don't know which one to go with, so I'm just trying to learn more about it and see what others might have experienced.

 

[Rushie]

Mystery solved! Her symptoms (lethargy, weakness and fatigue) were side effects of losartan potassium, not namenda. Her BP was getting too low.

I'm sure lots of you like me must be dealing with aging parents (mom is 90). It can be difficult sorting their symptoms. They don't always present like younger folks.

Trying to keep the old lady happy, that's what's important.

 

[airdale]

This is a symptom of the modern medical system. No one is in charge. Lots of docs in charge of pieces but no one who can say: "Thank you all for your inputs. Here is what we are going to do." Project Management, IOW. The establishment's concept of case management is inadequate; this usually involves a lower-level person who "coordinates." Coordination is not management.

We have partially solved this by signing up for a concierge type program that operates within our usual health care system. Our chosen doc, Steve, is available to us within one day for appointments. And one of the docs in the program is always carrying a cell phone 24x7 so patients can call with issues, questions, etc. We are on a first-name basis with all the docs and staff.

Since we have our finger on one guy and good access I have been coaching him and his manager on what project management is all about. In November my wife had a back operation and Steve monitored the whole thing on the medical records system, watching who was doing what and talking to her every couple of days. He would have come to the hospital if necessary, but it was not. The nurses were flabbergasted that her primary was involved at all. Everything went fine, but if there were issues or questions Steve was ready and able to arbitrate or make decisions. @Rushie, I don't know if you have access to anything like that, but I'd encourage you to do some spade work to select and communicate with one doc who will provide leadership.

 

[Rushie]

This is a symptom of the modern medical system. No one is in charge. Lots of docs in charge of pieces but no one who can say: "Thank you all for your inputs. Here is what we are going to do." Project Management, IOW. The establishment's concept of case management is inadequate; this usually involves a lower-level person who "coordinates." Coordination is not management.

We have partially solved this by signing up for a concierge type program that operates within our usual health care system. Our chosen doc, Steve, is available to us within one day for appointments. And one of the docs in the program is always carrying a cell phone 24x7 so patients can call with issues, questions, etc. We are on a first-name basis with all the docs and staff.

Since we have our finger on one guy and good access I have been coaching him and his manager on what project management is all about. In November my wife had a back operation and Steve monitored the whole thing on the medical records system, watching who was doing what and talking to her every couple of days. He would have come to the hospital if necessary, but it was not. The nurses were flabbergasted that her primary was involved at all. Everything went fine, but if there were issues or questions Steve was ready and able to arbitrate or make decisions. @Rushie, I don't know if you have access to anything like that, but I'd encourage you to do some spade work to select and communicate with one doc who will provide leadership.

Yes I am completely with you. I am actually looking into a concierge practice near mom's house. The problem is Mom has been going to this primary for several years now and my sister is very emotionally invested in this one doctor. He's a good doctor, but he is a single doctor practice that accepts Medicare patients and he is spread WAY too thin. My other sister and I want to move mom to the concierge but the one sister doesn't want to. It's a delicate situation because that sister is the one who has been physically taking mom to all the appointments all these years, plus changing doctors would be traumatic for Mom herself, and she doesn't make things easier because she won't give an opinion about her own preference. She is all "whatever you think is best" to whichever sister or brother is talking to her at the moment.

The good news is mom has many children all wanting to take care of her. The bad news is we are in conflict sometimes about exactly how to do that. I guess it's a good problem to have. Mom repeatedly says "I thank God for each and every one of you."

 

[airdale]

... I am actually looking into a concierge practice near mom's house. ...

Well, that's promising anyway. Maybe arrange for you and your sisters to sit down with one or more of the docs in the practice to see if there is a good emotional fit, then take your mom in for a similar visit? I interviewed all three docs in the group before I committed.

Too bad about the current primary doc being spread thin. One other benefit of our concierge relationship is that the appointments are automatically one hour. If the practice you are checking out also has long appointments that might be attractive to both your mom and the reluctant sister. Also you'll probably have much less waiting to get an appointment (1 day max for us) and much less waiting at the office (usually none for us). When I signed up one of the things that impressed me is that the practice waiting area had only two chairs. There is also a coat closet and a sort of snack bar with munchies, coffee, tea, and a fridge with cold water. All very welcoming and comfortable.

 

[Zeldman]

Glad to hear the problem was found and dealt with. My mom is 85 and just moved in with us. We went from me and my wife, 1 cat and 1 dog to me and my wife, my mom, 2 cats and 2 dogs.

That is why I bought a bigger house with a bigger yard and 3 full bathrooms..!!! Plus a loft in the barn that I might make into my office get-a-way...

Right now she is in great health and pretty active.

 

[Rushie]

Well, that's promising anyway. Maybe arrange for you and your sisters to sit down with one or more of the docs in the practice to see if there is a good emotional fit, then take your mom in for a similar visit? I interviewed all three docs in the group before I committed.

Too bad about the current primary doc being spread thin. One other benefit of our concierge relationship is that the appointments are automatically one hour. If the practice you are checking out also has long appointments that might be attractive to both your mom and the reluctant sister. Also you'll probably have much less waiting to get an appointment (1 day max for us) and much less waiting at the office (usually none for us). When I signed up one of the things that impressed me is that the practice waiting area had only two chairs. There is also a coat closet and a sort of snack bar with munchies, coffee, tea, and a fridge with cold water. All very welcoming and comfortable.

I have a specialist in Charlotte like that. Never more than one other person in the waiting room. Spends two or more hours with me each visit. The guy is 70 and says he's nowhere near retiring because he loves doing what he does (good old fashioned doctoring, as in, focuses on and listens to the patient.)

 

[Rushie]

Glad to hear the problem was found and dealt with. My mom is 85 and just moved in with us. We went from me and my wife, 1 cat and 1 dog to me and my wife, my mom, 2 cats and 2 dogs.

That is why I bought a bigger house with a bigger yard and 3 full bathrooms..!!! Plus a loft in the barn that I might make into my office get-a-way...

Right now she is in great health and pretty active.

Wow. Our daughter has 2 cats and 2 dogs. Then had this baby in my picture. They live in a small house and have no guest room so when I visit I have to sleep in the living room with the two cats playing around all night. Playing with my hair, jumping all over the place. They need to upgrade...

 

[wsuffa]

My dad was on Namenda and Aricept, the doc started him on an antidpressant due to the side effects of the other two. The two anti-dementia drugs did a little good, but a limited amount. Doc stopped him from one cold turkey (even though the drug info specified not to) and made it pretty clear that he was trying to make sure that dad was "put away" in a dementia ward. The result was that my dad ended up in the hospital within a week or so after he became nearly violent as a result of the rapid med change, and we lost him a couple of days later. The regular doc didn't provide records to the hospital and the attending physician at the hospital was almost incredulous at what had transpired.

Rant on: part of this was the result of Medicare single-payer and the reimbursement rate. The doc would book no less than 48 patients a day, sometimes as many as 60, and basically spent only a couple of minutes on each office visit. Even though my dad had TriCare and access to VA, they didn't want/couldn't change docs due to the limited number that would take MediCare and the VA was across town and poor service. I have no kind words for the doc and way things work with Medicare make me very, very leery of government single payer. Rant off.

If they do make a change in your situation, make sure you stay on them and follow the label procedures and contraindications. If they want to deviate, make sure you understand what/where/why they plan to do. Changing mental/mind drugs carries risk.

 

[Rushie]

My dad was on Namenda and Aricept, the doc started him on an antidpressant due to the side effects of the other two. The two anti-dementia drugs did a little good, but a limited amount. Doc stopped him from one cold turkey (even though the drug info specified not to) and made it pretty clear that he was trying to make sure that dad was "put away" in a dementia ward. The result was that my dad ended up in the hospital within a week or so after he became nearly violent as a result of the rapid med change, and we lost him a couple of days later. The regular doc didn't provide records to the hospital and the attending physician at the hospital was almost incredulous at what had transpired.

Rant on: part of this was the result of Medicare single-payer and the reimbursement rate. The doc would book no less than 48 patients a day, sometimes as many as 60, and basically spent only a couple of minutes on each office visit. Even though my dad had TriCare and access to VA, they didn't want/couldn't change docs due to the limited number that would take MediCare and the VA was across town and poor service. I have no kind words for the doc and way things work with Medicare make me very, very leery of government single payer. Rant off.

If they do make a change in your situation, make sure you stay on them and follow the label procedures and contraindications. If they want to deviate, make sure you understand what/where/why they plan to do. Changing mental/mind drugs carries risk.

Wow, thanks for sharing your story. I'm already very aware of "withdrawal" from any drug that affects any of the brain's neurotransmitters. My mom is on Namenda and the Exelon patch and I was very hesitant to allow her to start them for the very reason you describe (losing control of the situation and them being forced into withdrawal) but mom was so confused we weighed the pros and cons. We have already had a problem when they switched her exelon patch to generic. The glue was no good and it would not stay on and I think she was not getting the dose and had bad symptoms. So we got the doctor to mandate the brand, and she got back to normal. She has to pay $90 a month out of pocket for the brand but it's worth it.

I heard another story similar to yours where a man was not given his memory drug when he was admitted to a hospital resulting in severe withdrawal symptoms. I've made sure my siblings in town know about this and stay on top of mom's meds if she is hospitalized for any reason, but gosh, in your situation what do you do if the doctor won't renew the prescription?

I hear you about your rant and agree completely.