Questions about Alzheimer's Meds

[Patsy]

I'd like to tap some of the medical knowledge of the forum, especially if anyone is familiar as a medical professional with Alzheimer's medications.

My mother has moved into Reisburg Scale Stage 6. She has been on Alzheimer's specific medications for a number of years. My understanding is that as a patient has taken these for some years, and as they move into the late stages of Alzheimer's their effectiveness diminishes to zero or near zero. Am I understanding correctly? I'm beginning to question whether they are still appropriate or useful to her. In my admittedly non expert opinion, they no longer have any effect.

Aside from being opposed in general to overmedicating Mom, giving her pills upsets her a lot, really a lot, and makes her cry, so I only wish to see her take what is absolutely useful to her.

Anyone have any guidance on these issues? Most of the information I've found so far seems agenda driven, and I'd like some more skeptical points of view.

 

[casebro]

My take is that the drugs don't fix anything, but that they do delay the advancement of the disease. So they may still be slowing it's final advancement?

Or maybe the drug does make her easier for the staff at the home to handle here? If so, I'd say anything to make it easier on the staff, those folks need all the help they can get.

Talk to here doctor.

 

[Katana]

I was thinking about this thread this morning. I'm glad it popped back up.

Patsy, I didn't want you to think that the lack of posts reflected a lack of concern about your issues with your mother and her treatment. There may not be someone here who feels that they can answer your questions well. I'm a physician but in a completely unrelated field (unless someone can link ob/gyn to neurology ). I did a literature search to see what I could find out, and, predictably, your questions proved less than straightforward to answer.

The best idea is casebro's, which is to talk to her doc about your concerns, but I would add that you might consider getting another opinion if you leave less than satisfied.

I just didn't want you to think that no one cared.

 

[Patsy]

Mom is not being cared for in a nursing home. She and my father live with me in the winter and my sister in the summer, so it is not an issue of making it easier for staff. It is an issue of what is best and useful to Mother.

I haven't been satisfied with the answers I am getting from her physician. Her own doctor has a parent with Alzheimer's and I think her own issues and the emotions that attend them may be affecting her judgement in Mom's case. I'm not trying to diss her, I'm saying she is human like the rest of us when it comes to these things.

I think as you both suggested, I need to have a second opinion. I have hesitated, as Mom does not always react well to new people, and can have bad effects for days from things that upset her. I think it has to be done, though.

It is just so ◊◊◊◊◊◊◊ hard to figure out what is the right thing and the best thing to do some times

 

[Katana]

Mom is not being cared for in a nursing home. She and my father live with me in the winter and my sister in the summer, so it is not an issue of making it easier for staff. It is an issue of what is best and useful to Mother.

I haven't been satisfied with the answers I am getting from her physician. Her own doctor has a parent with Alzheimer's and I think her own issues and the emotions that attend them may be affecting her judgement in Mom's case. I'm not trying to diss her, I'm saying she is human like the rest of us when it comes to these things.

I think as you both suggested, I need to have a second opinion. I have hesitated, as Mom does not always react well to new people, and can have bad effects for days from things that upset her. I think it has to be done, though.

It is just so ◊◊◊◊◊◊◊ hard to figure out what is the right thing and the best thing to do some times

It certainly is. I don't envy you in this, Patsy. No matter what you do, you will probably second guess it, but try not to. Your mother has a tough illness, and you're grappling with very difficult issues without easy answers. But know that you're doing the best you can, and you're obviously acting with her best interests at heart.

If you do go to another doc, be sure to take copies of everything she has had done with you (office notes, imaging studies, lab work, etc). Her current doc's office would ideally do this for you, and you should ask them to so the new doc can review them before the appointment. However, they can make copies for you, too. No better way to be sure they get there than to carry them yourself.

Caring for an ill loved one can be psychologically and physically demanding, so make sure that you take care of yourself, too. It's easy to neglect one's own health in the process of tending to someone else's.

I wish you the best of luck.

 

[Groovydoc]

Patsy,

It might be helpful if you could name the specific meds. I suspect you are referring to meds such as donepezil (Aricept) or others in that general category, rather than some behavior modifying meds such as Zyprexa or such that often get used if folks have trouble with agitation or anxiety. In any case, as a practicing Internist/hospitalist (and just post-call I might add), I often discuss with patients and families what their goals and expectations for a disease/treatment might be. As Casebero pointed out, meds in the first class I mentioned primarily are used to slow disease progression, not reverse it. This makes it very hard to gauge in effectiveness, as this disease progresses at a different rate in each person, and who is to say for any given individual what level of delay it may be responsible for.

In my personal experience, once a certain threshold is passed, it basically becomes impossible to know if there is any further benefit. One thing you can answer though is, what is the harm? Not just physical harm applies, but other factors. You mentioned distress at taking pills. Economic considerations may also pertain. Has your mother reached a point at which you think her goal would be still to fight for more time, or at what point, if ever, would she have told you to let things happen as swiftly as nature will allow? I can't answer those questions, but sometimes it helps to ask not what we want, but what would she have wanted if 20 years ago she could see how she's doing now?

You have my sympathies, and if I can clarify or help again, let me know.

 

[Patsy]

Groovydoc,

As you suspect she takes Aricept, amongst a host of other medications for physical ailments, sleeping problems, etc. She is changing so rapidly now, you can see differences in her from week to week. That is what led me to wonder if the medication is no longer having an effect. Of course, I can't know how much faster she would be changing without them.

Mom takes so many pills and it does distress her to take them. Her medications are very expensive, but fortunately my sister and I both are in a position to be able to provide for them in our homes and assist them financially, so reducing the cost of her care is not an issue. I want to make sure we aren't going to desperate lengths to make ourselves feel better and like we are doing something, and in reality be going against Mom's best interests.

It is hard to know what Mom would want. How much, really, can we know about how another person feels about these things? Mom was never comfortable talking about illness, death, and those kinds of subjects, so it is really hard to know. Since this happened to Mom, I've made sure that all of my family members know EXACTLY what my feelings and wishes regarding medical and end of life issues are!

Talking it out a little bit "out loud" has clarified for me that I need to get a second, and maybe even a third opinion on her overall medication picture, know what her options are, and make a better informed decision with my family regarding how her treatment should continue.

 

[Groovydoc]

Patsy,

It sounds like your mother is in good hands. You are doing all the right things as far as I can tell, so keep up the good work. One of the most common things families experience in similar situations is guilt, either with the caregiver or those less directly involved. Let me assure you, at this point, most people feel the what ifs (what if I had done this, or should we be doing that), which is only natural, and sometimes this leads to family strife due to feelings of helplessness. Keeping everyone up to date on the realities of the situation can go a long way to avoiding such misunderstandings. Good luck, and most importantly, remember to look out for yourself during all this.

Stay Groovy