Hello All,

I have posted in several areas on this site, but I think this is where I need to be. I have been taking care of my parents for several years now but for the last year, it has pretty much been a full-time job.

I met with my dad's doctor today and discussed all of the memory problems that dad has been experiencing in intensity for the last 6 months now. (For an updated story on my dad's condition, I have posted one on the "other kinds of dementia" site and some on the "anger wall". My dad is 83 and his M.D. feels that putting him under extensive testing via a Neurologist would be basically a waste of time considering his age and the fact that everything I have described to him points to age-related dementia.

The doctor spoke with me about a variety of anti-psychotic drugs that could help my father's early evening episodes of memory loss, disorientation and aggression. He wants to try him on Abilify at night. My father has narcolepsy and cataplexy and doesn't sleep well to begin with. He only sleeps from about 9:00 p.m. to 3:00 a.m., so mom is tired a lot during the day. The doctor thinks that the abilify will make him sleep through the night and may or may not have a positive effect on him during the day. He said that he may respond well and the episodes during the day might reduce, but the memory loss would not.

Does anyone have any ideas on Abilify? I am afraid to try him on it, but do not know what to do and want to comply with the doctor. the doctor also said that at some point, we would need to consider placing dad in an assisted living center or nursing home. I've done a lot of soul searching over the last month or so, and feel that God is being very delicate in preparing me for when my dad leaves this earth. As you all know, we go through times of crying and anger and wondering why, but there are also times of joy and blessings.

Any help and support is graciously accepted.

Laurie

quote:

I think folks are on far too many meds of all kinds to begin with!

Amen to that, and I really don't like the way some docs want to pile on another to treat something that may well be a side effect of an earlier one.
If there are new problems within a narrow time frame of beginning a drug (especially a new drug) that the doc thought "oh, lets try this and see if it helps",,,it only makes sense to examine the possibility of side effects and change dosage (maybe the 25 would work well) or med before adding another (Abilify) to the stew.

You have to be very cautious about not following the doctor's orders however. There can be some liability issues involved. If you don't trust this doc and aren't satisfied with your meetings, you and your Dad have a real problem and need to either change PCPs or have a rather radical discussion with this doc about how your Dad is not a lab rat to be fed a pharmeceutical soup.

Have you made progress finding a neuro for him to see?

Laurie, I am not gonna argue with you at all about the meds - I think folks are on far too many meds of all kinds to begin with! When we are dealing with behavioral and cognitive issues, I will go out on a limb and say that most of the meds on the market being given to the elderly for these issues are given inappropriately and do NOT benefit the patient. I think too many are downright harmful!

Keep a close eye on him and be sure to wean only one med at a time SLOWLY so that if things start going haywire, you know which med needs adjustment.

Having said all that, you really should let the doc know what you are up to, so it can be entered into his records. Be sure to document all this so that if the doc or anyone has questions, you have records to show them.

UPDATE:

Okay everyone....I am not in denial if my dad truly has some type of dementia or AD, however I am trying something that so far seems to be helping.

I DID NOT start dad on the Abilify...partly because of what you all have said, and because I do not feel good in my heart about it at this time. I pray about things and try to go with my gut feeling.

Here is the news: My mom's pituitary brain tumor is growing again and they have placed her on a new medication to shrink it. So...I wanted to look up the possible side effects of it because she has been unusually tired and her blood pressure was "too good to be true" low a a couple of days in a row. I wanted to make sure that she wasn't trying to go into adrenaline shock, which she has before when under too much stress. So, I looked up the symptoms, and it all made sense....enough of that though....

About dad...I began to go over all of his meds in my mind and although I have researched the antidepressant that he has been taking for 3 months now, it was brand new on the market when he began it and there wasn't much info on it. He takes "Savella", which is actually a medication for fibromyalgia patients to help reduce their pain but because it works as a norepinephrine and serotonin reuptake inhibitor, they are trying it for depression as well. It is the first drug that has more of an effect on norepinephrine levels than serotonin...hence drugs like Prozac, Zoloft, and all other SSRI's work more on serotonin levels than norepinephrine.

Nonetheless, I decided to do a search on it to see what people have experienced thus far. My search pulled up numerous website forums for patients with fibromyalgia. Several of the people discussed their experience with Savella, good and bad. Some of them complained of memory loss, confusion, agitation, aggression, restlessness, etc. One person shared that she couldn't remember what she said `10 or 15 minutes after she said it, and that she has been driving for 46 years but had ran 2 stop signs since she had started Savella.

Of course, there were some that were happy with the drug with no "memory" side effects but there are very few that are able to stay on it due to other side effects.

My father has been on the full dose of 100 mg daily, 50 in the a.m. and 50 in the p.m. My mother felt that it might have been causing him to be too agitated at night because he gets angry with her, argues and yells at her about things that are not real. She cut his night dose about a month ago and I didn't know it.

Nonetheless, I have an extra sample pack like when he started on it in which he starts at 12.5 mg the first day, 2 12.g mg for 3 days, 2 25 mg for 4 days and then 50 mg twice daily from then on. So....I took the pack to them, told them what I had read and that we were going to wean him off of it just like he went on it. Yesterday, he had his first 25 mg dose, and will have his second today. Within the next 7 days, he will be completely off of it.

Some may be thinking that I shouldn't wean him off without the doctor's permission, however if think his PC should have caught that this might be part of his problem whenever I had a conference with him on Monday! I know doctor's are not miracle workers...my husband is the CEO of our small rural hospital and a Vice President for the main corporation, but I do think doctor's should have a patient's chart in front of them when having a conference with the family...Am I being too hard on the PC?

Please know that I am not in denial about my father and the fact that it could be more than the medication...I can accept it if that is the case. Savella's side effects in the most severe form include rashes, hives, memory loss, confusion, agitation, restlessness, aggresiveness, increased blood pressure, rapid heart rate...and more.

If some of you do not agree with what I am doing...please tell me because I welcome constructive criticism from all of you since we are all in similar situations as caregivers.

I will say that he dropped from 50 to 25 mg yesterday and my mom called today to stay that he was significantly less confused last night.

Praying...................

Blessings........

Laurie

Hi Laurie,

Thanks for sharing about your dad and also about your extended family. If you are the one assigned to make decissions about your father, I would not take what the other members of your family say too seriously. You can politely listen, say thank-you and then go with what your gut says. You need to need to find a teaching hospital in your area and get your father in for a neurological evaluation as soon as possible, in fact I need to take my father in also. Especially, do not put your father on abilify until you do so. We really need to know what the diagnosis is.
More later-I know it is hard.

quote:

My dad is 83 and his M.D. feels that putting him under extensive testing via a Neurologist would be basically a waste of time considering his age and the fact that everything I have described to him points to age-related dementia.

The doctor spoke with me about a variety of anti-psychotic drugs that could help my father's early evening episodes of memory loss, disorientation and aggression. He wants to try him on Abilify at night.

... which is pretty much WHY I would take him to a specialist. So MANY physicians don't see any need to differentiate between the conditions that cause dementia because they have NOT kept up with the subject and are not aware of the differences in treatment. Most diseases & conditions that cause dementia are progressive, but they are NOT all treated the same! Antipsychotics were developed for people who are psychotic, not for those suffering from dementia. They are used mostly to calm people down, but many have VERY BAD side effects, especially in elderly folks - some can cause permanent damage (tarditive dyskenesia). To be perfectly frank, in my experience the farther one can stay from pharmatherapy, the better off the patient will be!

quote:

My father has narcolepsy and cataplexy and doesn't sleep well to begin with.

He should already be seeing a neurologist! Conditions like this are not best treated by a PCP in many cases. I would strongly suggest you have him evaluated by a geriatric neurologist before starting him on anything.

I've had uncles and aunts who suffered with dementia before their passing. Mostly there were questions to test their memory -- but I can't guarantee that's always the case. By the time I was aware of their deteriorating condition, they were on maintenance by their doctors and so perhaps there were initial tests which I didn't know about.

Laurie, Mom fainted about a month after Dad's death in 2002 and we took her to the ER. A CT was done and the evidence of the "mini-strokes" of the past was evident. In the ER the on call doc just asked Mom some fairly simple questions, then asked me how long she had been on aricept. I told her 5 years or more. She had to leave the room for a minute and then came back. I got the quick course on dementia, not detailed but enough to let me understand why she questioned the need for aricept. Mom knew her name, where she was, who the president was, the date, had a very reasonable conversation about where the doc was from. She recommended a follow up with a neuro. In the case of Mom, it wasn't extensive, the CT was already done, the blood work was done, so it was pretty much conversational and she was asked to fill out a "Questionaire" for the doc which included a clock to draw the time. She did an excellent job. He even had her look up a number in the phone book and place a call.

It was concluded that she should have some B complex supplements and changed her BP meds, and took her off the aricept. The cause of her short term memory loss had most likely been the strokes (TIAs). Mom started seeing the ER doc after that.

Now, what happened in our case has little to do with yours, but I learned a lot back then and Do think pushing for a diagnosis is worth it, but Mom's exam was not that extensive. She has only been back to the neuro once more when she had a series of fainting spells. She is now 94 and does have age related memory loss.

You can't always get concrete answers. Mostly they rule out this or that, but they can really help. I am alarmed by your sister's experience. I suppose it can be that way, and we all have our own levels of tolerence, but that is truely sad. I hope you will get more input from some of the others. Personally, I still think you should push for this. I don't know any docs in Texas or the neighboring states. I wish I could help.

Bobcat,

Thank you for the advice about pushing for a diagnosis. I am a concrete person...I like concrete answers when possible and I know that this isn't always the case. I have a sister that is 4 year older than I and lives 3 hours away. She had a father-in-law that got his wings several years ago after about 7 years of AD. About 2 years before he passed, his wife (my sister's mother-in-law) began to get lost when she drove to go and see him in the care center he was in. She also had memory lapses, etc. She is now in an AD care unit that has several different "unit areas" that a patient is placed in depending on the severity of their AD...or something like that. I spoke with my sister this morning before I went to visit with the doctor. I expressed to her that I wanted our dad referred to a neurologist for an evaluation and diagnosis. She told me that they had both her father-in-law and mother-in-law assessed by a neurologist and that the tests that they were put through were degrading and humiliating??? I'm not sure what she meant by this, but she told me that she felt they didn't know any more after the testing than they did before.

Bobcat, do you happen to know what type of testing is done present day? I'm so very confused but my sister isn't against this if that is what I feel is best for our father.

You are correct....what if the cause is something that could have been treated differently?

One more thing....I live in Texas and does anyone that is reading this recommend (if you guys are allowed to recommend) a good geriatric neurologist in Texas? I'm willing to take my father to another State if I need to.

I'm so thankful for this site and you!

Laurie

Yes Laurie, this is the right place. Hugs to you sweetheart. (shh,,,whispering,,,I think your Dad needs a new doc.) In my humble opinion he should Definitely see a Neuro for a full evaluation. There are many different causes of dementia and they are treated differently with different expectations. Causes can include B12 deficiency, TIAs, sleep disorders, med side effects, depression, as well as alzheimers, and others.

I don't have experience with Abilify, it might be right for him, I couldn't say, but I would seriously push to get him to a good neurologist to help decide. It is true that our loved ones (and everyone else including ourselves) will leave this earth, but it is important to me and most of us here to make the best of each day we have. Eventually losing them is not failure. Still how the days are lived makes a huge difference.

Someone else here will have experience with that med, but I do know that a lazy doctor said my Mom had Alz when she was in her early 80s and put her on aricept. She was not examined properly so her TIAs went undiagnosed until she was 87. Then they took her off aricept. She never needed it. Should have been following another line of treatment.

Sorry, it is a touchy spot of mine when a doc doesn't want a patient to be properly diagnosed by a specialist. Maybe he has his reasons, I can't think what in the world they might be, expense to the family, availability of neurologists, distance to travel, whatever. Do you have confidence in this dude? It can be very challenging to stand up to the medical professionals. The first doc might be right as rain, but it just isn't good enough if there is a good neuro in your area who will see him. I am looking forward to hearing more from you. And I wish you the best while working this out. Courage, dear. You already know this isn't easy, but you can put your mind more at ease when you have better information.

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