Dementia / Alz - Finding the Right Medication Cocktail
Hello, Everyone.
I know none of you are doctors, and therefore, cannot legally give medical advice. I also know that all patients are different, and that what works for one could be disastrous for another! Keeping all of that in mind:
My 86-year old mom had dementia / beginning stage Alzheimer's, and I'm finding it REALLY difficult to find the right "medication cocktail" for her. I'm working with her doctor (an elder care specialist) to give her as high a quality of life as possible, while also trying to lessen the panic attacks/aggression/screaming that seems to be almost constant now. I would just LOVE for her to be able to sit in the living room with us all, peacefully.
We've changed her medications quite a lot lately (at my insistence) as, previously, she was sleeping, 24x7. I could barely feed her / give her water, so, that had to change quickly! Now, she's taking a combination of Ativan (on a schedule), Depakote Sprinkles (at bed time, for sleep) and Seroquel (as needed, for severe panic attacks). So far, we're not having very much luck!
As I type this, she's been yelling -- every 5 seconds, for almost 3 hours! -- for her mom, all 8 of her sisters, and for "Help!", over and over again, ad-infinitum. Of course, when I go in to try to calm her, she quiets down ... as long as I stay there and hold her hand. I did that for 2 hours this morning! But, as soon as I leave the room, even to go to the bathroom, the screaming continues, non-stop.
She's not in any pain or discomfort, she's completely bed-bound, and safely in a hospital bed, with padded rails (she often strikes out at people who aren't there, and kicks her legs around, etc). Just now, I closed her bedroom door, so that her screaming is muffled and I can make some phone calls. {sigh}
Obviously, this situation is not sustainable! Today, I've got a lot of work-related phone calls to make and the usual assortment of "stuff" to do around the house. If I want to get anything done, I have to find a way to ignore the screaming and just get. on. with. it. That's SO hard to do!
Is this type of behavior "normal" for someone with dementia / Alz?
If so, how do you all deal with the constant screaming?
Is medicating her MORE to keep her quiet "acceptable"? A failure? Giving up?
I love my mom, and I want her to be as happy as possible, even with this horrible disease. That said, I also know that other people share this home, and that OUR quality of life is suffering.
At this point, my care-giving options are:
1) TRULY constant hand-holding or
2) TRULY constant screaming
{sigh}
Experience? Advice? Medication Suggestions? Etc?
I don't know how often the resident experts visit the Community forums - have you tried entering that question on Q&A?
http://www.caring.com/ask
These questions seem to get an expert response. I do wish the Ask and Answer section could be more adequately searched.
Hugs to you!
I don't know how often the resident experts visit the Community forums - have you tried entering that question on Q&A?
http://www.caring.com/ask
These questions seem to get an expert response. I do wish the Ask and Answer section could be more adequately searched.
Hugs to you!
Hello, Frazzled. Thank you for your response, and your re-posting suggestion. You're the GREATEST! {grin} I just visited the 'ask' section, and hope that someone there has time to read and respond.
That said, I also would welcome any suggestions or stories - specifically from my fellow caregivers - concerning this type of behavior, and how do deal with it without ... going ... absolutely ... bonkers!
Sage medical advice is all good and well, but, I've found that MDs are not always as empathetic as they could be, given that they're not living smack-dab in the middle of the madness. =o)
Thanks again for the reply, Frazzled. Love the brand new handle, and the same old sense of humor. You're a gem!
{big hug}
Hello, Frazzled. Thank you for your response, and your re-posting suggestion. You're the GREATEST! {grin} I just visited the 'ask' section, and hope that someone there has time to read and respond.
That said, I also would welcome any suggestions or stories - specifically from my fellow caregivers - concerning this type of behavior, and how do deal with it without ... going ... absolutely ... bonkers!
Sage medical advice is all good and well, but, I've found that MDs are not always as empathetic as they could be, given that they're not living smack-dab in the middle of the madness. =o)
Thanks again for the reply, Frazzled. Love the brand new handle, and the same old sense of humor. You're a gem!
{big hug}
I was being kind of selfish because I would really like to see an expert weigh in...would they recommend a geriantologist, are there expert pharmacological application practicioners (that's a mouthful!) How do you weigh the contraindications of a drug versus the benefit? What is the dividing line between guinea pig and patient?
Thanks, btw, the nic is better suited to me! :)
And...I do believe that experience is sometimes the better expert than the book-learned. ;)
I was being kind of selfish because I would really like to see an expert weigh in...would they recommend a geriantologist, are there expert pharmacological application practicioners (that's a mouthful!) How do you weigh the contraindications of a drug versus the benefit? What is the dividing line between guinea pig and patient?
Thanks, btw, the nic is better suited to me! :)
And...I do believe that experience is sometimes the better expert than the book-learned. ;)
Dearest Frazzled:
The nic is ADORABLY honest ... and, the pic is priceless! =o)
So, I hired a gerontologist who makes house calls (yay!). She was reading my mind this morning, and suggested that I admit my mom to the ER ... I received her voice-mail right AFTER I phoned the ambulance.
Although I've been forcing liquids on my mom virtually non-stop, I still suspect dehydration, and maybe even a GI bleed (very un-healthy poop these past few days!). {sigh} The "interesting" times never end.
That said, I did take the advice of folks who post here regularly: I took her to the ER, got her checked in, gave the doctor a med list, a medical history, and a TON of written information. Then, I LEFT the ER and came HOME to rest! Well, not REALLY rest ... but, admittedly, it IS a bit of a break.
Side Note: I also provide full-time care for my developmentally disabled aunt, but, compared to my mom's recent 24 x 7 screaming sessions, my aunt is a real pleasure to care for!
Thank you for your response. I'm glad you were being selfish, also. That's healthy! =o)
{{big hugs}}
Dearest Frazzled:
The nic is ADORABLY honest ... and, the pic is priceless! =o)
So, I hired a gerontologist who makes house calls (yay!). She was reading my mind this morning, and suggested that I admit my mom to the ER ... I received her voice-mail right AFTER I phoned the ambulance.
Although I've been forcing liquids on my mom virtually non-stop, I still suspect dehydration, and maybe even a GI bleed (very un-healthy poop these past few days!). {sigh} The "interesting" times never end.
That said, I did take the advice of folks who post here regularly: I took her to the ER, got her checked in, gave the doctor a med list, a medical history, and a TON of written information. Then, I LEFT the ER and came HOME to rest! Well, not REALLY rest ... but, admittedly, it IS a bit of a break.
Side Note: I also provide full-time care for my developmentally disabled aunt, but, compared to my mom's recent 24 x 7 screaming sessions, my aunt is a real pleasure to care for!
Thank you for your response. I'm glad you were being selfish, also. That's healthy! =o)
{{big hugs}}
My dad was on hospice and that is what we had to do with him, except we bypassed the er (yeah!!!) and went directly to the hospice section where they gave him intervenous drugs. Sometimes you just ask why. Why is he on all of these meds that obviously are not controlling his problems and are causing more problems which need more meds which cause more problems. It really really gets rediculous sometimes. We had the hospital bed with pads, (pipe insulators are cheap and work good). We had 3 people with him that took turns when he started yelling. Our presence did not help. He would yell at us when we were there and just yell generic when we werent. I am wondering if you could use walki-talkies. She could hear that you are there and that might sooth her. I would look for one with mute for the phone calls. We have a baby monitor that at least lets her call us when she really needs us but we dont have to stay there. make sure it is 2 way though.
I have a weird sense of humor but for some reason a fake hand (halloween) popped into my head, kind of like the Munsters hand. I am also wondering if you could use one of those kitten toys that move like a real kitten or something like that so that there is a presence there but not you. Just putting things down as they pop in my head. maybe you can try them. I am not making light of your problems but most times you really have to think out of the box.
My dad was on hospice and that is what we had to do with him, except we bypassed the er (yeah!!!) and went directly to the hospice section where they gave him intervenous drugs. Sometimes you just ask why. Why is he on all of these meds that obviously are not controlling his problems and are causing more problems which need more meds which cause more problems. It really really gets rediculous sometimes. We had the hospital bed with pads, (pipe insulators are cheap and work good). We had 3 people with him that took turns when he started yelling. Our presence did not help. He would yell at us when we were there and just yell generic when we werent. I am wondering if you could use walki-talkies. She could hear that you are there and that might sooth her. I would look for one with mute for the phone calls. We have a baby monitor that at least lets her call us when she really needs us but we dont have to stay there. make sure it is 2 way though.
I have a weird sense of humor but for some reason a fake hand (halloween) popped into my head, kind of like the Munsters hand. I am also wondering if you could use one of those kitten toys that move like a real kitten or something like that so that there is a presence there but not you. Just putting things down as they pop in my head. maybe you can try them. I am not making light of your problems but most times you really have to think out of the box.
My mom is 57 and has dementia. Sometimes she screams for me, for help, cries about missing her mom (who has been dead for over 10 years), or screams at people who aren't there in our orange trees. Everyday she takes out clothes to "go home." Whenever my mom gets really hostile, my dad gives her a sedative prescribed by our doctor.
One difference between your mom and mine is that my mom doesn't sleep that much. she sleeps late and wakes up early.
Another difference is that she's still able to function normally overall (go for walks, brush her teeth... Although she needs some help showering and dressing. Since she is bed ridden it is harder for you to distract your mom. I can sometimes redirect my mom's frustration on going into our garden, asking her if she wants to go for a walk, asking her if she wants to eat, etc. The way I see a person with dementia is that they are constantly confused, so a lot of their frustration come from that confusion. Your mom must be extremely confused, and I can imagine how that is upsetting for both of you and your family.
I feel the same way about her medications... They make me uneasy because I don't want her to be sedated so that my dad and I could do other things around the house even if she doesn't get much sleep. Other than her sedative, she take Zoloft, Aricept, a blood sugar pill, a blood pressure pill, and other multivitamins that my dad gives her. We're thinking about letting my mom try trial medications that are being developed at my university and see if that has any positive effect on her.
One thing that I read is try to change yourself instead of trying to change the person. It's still a hard thing for me to change my perspective sometimes, but I have adjusted my thoughts and feelings fairly well.
I'm 21, and I go to college. Included in my tuition are a number of therapy sessions. I decided to go last year because my stress from my parents, school, and life was unhealthy. My worry and anxiety were overwhelming. Therapy helped me to think clearly and more logically for myself. I haven't gone to any, but I hear that caregiver group meeting are really helpful.
Anyway, those are my suggestions for you: therapy and caregiver support groups.
How is your mom around other people in public? I noticed that my mom seems happier around other people. Maybe you can take her to the park or something in a wheelchair?
My mom is 57 and has dementia. Sometimes she screams for me, for help, cries about missing her mom (who has been dead for over 10 years), or screams at people who aren't there in our orange trees. Everyday she takes out clothes to "go home." Whenever my mom gets really hostile, my dad gives her a sedative prescribed by our doctor.
One difference between your mom and mine is that my mom doesn't sleep that much. she sleeps late and wakes up early.
Another difference is that she's still able to function normally overall (go for walks, brush her teeth... Although she needs some help showering and dressing. Since she is bed ridden it is harder for you to distract your mom. I can sometimes redirect my mom's frustration on going into our garden, asking her if she wants to go for a walk, asking her if she wants to eat, etc. The way I see a person with dementia is that they are constantly confused, so a lot of their frustration come from that confusion. Your mom must be extremely confused, and I can imagine how that is upsetting for both of you and your family.
I feel the same way about her medications... They make me uneasy because I don't want her to be sedated so that my dad and I could do other things around the house even if she doesn't get much sleep. Other than her sedative, she take Zoloft, Aricept, a blood sugar pill, a blood pressure pill, and other multivitamins that my dad gives her. We're thinking about letting my mom try trial medications that are being developed at my university and see if that has any positive effect on her.
One thing that I read is try to change yourself instead of trying to change the person. It's still a hard thing for me to change my perspective sometimes, but I have adjusted my thoughts and feelings fairly well.
I'm 21, and I go to college. Included in my tuition are a number of therapy sessions. I decided to go last year because my stress from my parents, school, and life was unhealthy. My worry and anxiety were overwhelming. Therapy helped me to think clearly and more logically for myself. I haven't gone to any, but I hear that caregiver group meeting are really helpful.
Anyway, those are my suggestions for you: therapy and caregiver support groups.
How is your mom around other people in public? I noticed that my mom seems happier around other people. Maybe you can take her to the park or something in a wheelchair?
You said that your mother takes "Seroquel (as needed, for severe panic attacks).". My father takes seroquel on a daily basis! And I have got to say, that has been a godsend! He is now nice as can be, okay sometimes too nice but it is better than how he acted before!
You said that your mother takes "Seroquel (as needed, for severe panic attacks).". My father takes seroquel on a daily basis! And I have got to say, that has been a godsend! He is now nice as can be, okay sometimes too nice but it is better than how he acted before!
Is there anyway possible you could have her admitted for a Respite stay in a dementia unit? While she is there have her evaluated by the house Psychiatrist or Psychologist? Some of the other medications they might consider are Klonopin, Zyprexa, Remeron, and Valium. Its sounds like she is having periods of delirium. An expert might help you find the right answer. Is she taking Namenda? Best of luck.
Is there anyway possible you could have her admitted for a Respite stay in a dementia unit? While she is there have her evaluated by the house Psychiatrist or Psychologist? Some of the other medications they might consider are Klonopin, Zyprexa, Remeron, and Valium. Its sounds like she is having periods of delirium. An expert might help you find the right answer. Is she taking Namenda? Best of luck.
It helps to have second opinion, plus being observed by inpatient Psych. unit can be very helpful. With nursing personal observing twenty four hours a day along with Psychiatrists. Frequently rounds are held to gather info from all persons involved in patients' care. Good Luck
It helps to have second opinion, plus being observed by inpatient Psych. unit can be very helpful. With nursing personal observing twenty four hours a day along with Psychiatrists. Frequently rounds are held to gather info from all persons involved in patients' care. Good Luck
Sometimes the medicine has to be adjusted many many times to find the right mix and it takes time for some of the medicine to kick in. Doctors perscribe stuff, send you home with them and all of a sudden you have a violent confused person on your hands as a reaction to the medicine. and you think Great what the heck do I do now. Sometimes i think if you know a little bit about what they are talking about that doctors think you know everything and they dont give you enough information or there are just soooooo many side effects or reactions that it is impossible for them to cover them all in the 15 minutes (or less) that you have with them. Being inhouse can allow them to monitor and see what happens.
Sometimes the medicine has to be adjusted many many times to find the right mix and it takes time for some of the medicine to kick in. Doctors perscribe stuff, send you home with them and all of a sudden you have a violent confused person on your hands as a reaction to the medicine. and you think Great what the heck do I do now. Sometimes i think if you know a little bit about what they are talking about that doctors think you know everything and they dont give you enough information or there are just soooooo many side effects or reactions that it is impossible for them to cover them all in the 15 minutes (or less) that you have with them. Being inhouse can allow them to monitor and see what happens.
I have been reading this post and replies. From my side, the suffer of AD & FTD, most of the meds are of no value. Some do work for awhile, mood changers are the best though. I took aricept & namenda, no work, no help kept on sliding and still am. Sometimes you who are caregivers, give us more stress than help. You hoover, ask stupid (in our minds) questions, tell us it will be ok. We know we will die from this, no cure, no magic pill, no comming back, just loss of ourselves. If you really want to know what it is like, try and imagine if you can, you have been told you are going to die, but first you must loose all your memories, who you are, forget all your friends and loved ones and then maybe in 1-3 years after that, as your face is lying in a plate of food, your brain finally forgets to function and then you are set free. I LIVE IT DAILY. http://living-with-alhziemers.blogspot.com/
I have been reading this post and replies. From my side, the suffer of AD & FTD, most of the meds are of no value. Some do work for awhile, mood changers are the best though. I took aricept & namenda, no work, no help kept on sliding and still am. Sometimes you who are caregivers, give us more stress than help. You hoover, ask stupid (in our minds) questions, tell us it will be ok. We know we will die from this, no cure, no magic pill, no comming back, just loss of ourselves. If you really want to know what it is like, try and imagine if you can, you have been told you are going to die, but first you must loose all your memories, who you are, forget all your friends and loved ones and then maybe in 1-3 years after that, as your face is lying in a plate of food, your brain finally forgets to function and then you are set free. I LIVE IT DAILY. http://living-with-alhziemers.blogspot.com/
I dont think I have ever hoovered over anyone or told anyone that it would be ok. I am more the get mad and take action kind of person. I have never been someone who just listens and sympathizes. I am the kind of person who wants to fix things and gets very frustrated because this is a desease that cannot be fixed. I also get frustrated because some people dont want your help really they just want someone to listen and that is hard for me to do.
I dont think I have ever hoovered over anyone or told anyone that it would be ok. I am more the get mad and take action kind of person. I have never been someone who just listens and sympathizes. I am the kind of person who wants to fix things and gets very frustrated because this is a desease that cannot be fixed. I also get frustrated because some people dont want your help really they just want someone to listen and that is hard for me to do.
Hi!
My mother tried to kill me almost DAILY when I first took over her care following my father's accidental death 5 1/2 years ago... I tried to keep her out of the geri-psych ward, which may actually have been a mistake on my part at that time. (20/20 hindsight...)
So during the four months I lived with her in her home I turned to her neurologist - a GREAT doctor and human being- who helped me tremendously. When I inquired about an anti-depressant and suggested one, he IMMEDIATELY said NO YOU DO NOT WANT THAT DRUG - IT IS TOO "ACTIVATING" AND - it has TOO LONG A HALF-LIFE!!! Instead - he offered another... (which was a problem also, but fortunately had a very SHORT half-life!)
In other words, you need a REAL EXPERT - a NEUROLOGIST, or a PSYCHIATRIST with EXPERT PHARMACOLOGICAL training and instincts. A neurologist specializing in Alzheimer's...
You also need PATIENCE. Meds vary in how long they need before taking effect, how they interact with other drugs, how long they need to be cleared from your system, and of course, how they work with each individual's body chemistry. Consequently, getting the right MIX is an ARTFUL combination of science AND some trial and error.
My mother now lives with my family in our house. But before that could happen, she needed to reach what I call COMPLIANCE, or, the ability and willingness to COOPERATE by accepting my authority, complying with doctor's orders and house rules, etc. The trial and error process took several months, during which time she stayed in a memory care facility near her home while I took care of business briefly and then went to MY home. She didn't like it, but at the time she didn't like ANYTHING.
MEDICATION in the right combination MADE her COMPLIANT. Medication - along with HIGHLY NUTRITIOUS, FRESH FOOD, my iron hand in a silk glove, an active social life, DAILY showering, grooming, and dressing, exercise, reading and CHORES - gave her so much better a QUALITY of life, that it's as though her life was extended. As a result of achieving compliance, she improved so much that her MMSE test scores IMPROVED, she became social again, she could talk on the phone, microwave a cup of tea, carry on a conversation. AND, she passed a COMPETENCY TEST, which enabled her to put her affairs in order on HER terms.
ULTIMATELY, my mother's neurologist prescribed 50mg SEROQUEL, 10mg ARICEPT, 75mg ZOLOFT, an 81mg aspirin to aid vascular flow to the brain, exercise, and socialization through adult daycare. She was also prescribed .5mg KLONOPIN for me to use as an as-needed tool against outbursts and the "oozing dark." She took the SEROQUEL and ARICEPT at bedtime (sleep through!) and the other meds in the morning. That was 5 1/2 years ago.
Since then, she has, of course, declined. However, the only MED changes are the addition of NAMENDA (AM and PM,) and an increase in SEROQUEL over time - 50 to 100, and now to 150mg.
I hope some of this helps someone. When I was at the beginning of the road - I had nowhere to turn.
Always,
Galowa
©suzannemcable.9.4.2010.
Hi!
My mother tried to kill me almost DAILY when I first took over her care following my father's accidental death 5 1/2 years ago... I tried to keep her out of the geri-psych ward, which may actually have been a mistake on my part at that time. (20/20 hindsight...)
So during the four months I lived with her in her home I turned to her neurologist - a GREAT doctor and human being- who helped me tremendously. When I inquired about an anti-depressant and suggested one, he IMMEDIATELY said NO YOU DO NOT WANT THAT DRUG - IT IS TOO "ACTIVATING" AND - it has TOO LONG A HALF-LIFE!!! Instead - he offered another... (which was a problem also, but fortunately had a very SHORT half-life!)
In other words, you need a REAL EXPERT - a NEUROLOGIST, or a PSYCHIATRIST with EXPERT PHARMACOLOGICAL training and instincts. A neurologist specializing in Alzheimer's...
You also need PATIENCE. Meds vary in how long they need before taking effect, how they interact with other drugs, how long they need to be cleared from your system, and of course, how they work with each individual's body chemistry. Consequently, getting the right MIX is an ARTFUL combination of science AND some trial and error.
My mother now lives with my family in our house. But before that could happen, she needed to reach what I call COMPLIANCE, or, the ability and willingness to COOPERATE by accepting my authority, complying with doctor's orders and house rules, etc. The trial and error process took several months, during which time she stayed in a memory care facility near her home while I took care of business briefly and then went to MY home. She didn't like it, but at the time she didn't like ANYTHING.
MEDICATION in the right combination MADE her COMPLIANT. Medication - along with HIGHLY NUTRITIOUS, FRESH FOOD, my iron hand in a silk glove, an active social life, DAILY showering, grooming, and dressing, exercise, reading and CHORES - gave her so much better a QUALITY of life, that it's as though her life was extended. As a result of achieving compliance, she improved so much that her MMSE test scores IMPROVED, she became social again, she could talk on the phone, microwave a cup of tea, carry on a conversation. AND, she passed a COMPETENCY TEST, which enabled her to put her affairs in order on HER terms.
ULTIMATELY, my mother's neurologist prescribed 50mg SEROQUEL, 10mg ARICEPT, 75mg ZOLOFT, an 81mg aspirin to aid vascular flow to the brain, exercise, and socialization through adult daycare. She was also prescribed .5mg KLONOPIN for me to use as an as-needed tool against outbursts and the "oozing dark." She took the SEROQUEL and ARICEPT at bedtime (sleep through!) and the other meds in the morning. That was 5 1/2 years ago.
Since then, she has, of course, declined. However, the only MED changes are the addition of NAMENDA (AM and PM,) and an increase in SEROQUEL over time - 50 to 100, and now to 150mg.
I hope some of this helps someone. When I was at the beginning of the road - I had nowhere to turn.
Always,
Galowa
©suzannemcable.9.4.2010.