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Meds and agitation rant - I CAN'T FIGURE THIS OUT!
luvsjsite
Posted: Tuesday, January 3, 2012 12:38 AM
Joined: 12/2/2011
Posts: 4


I feel like I'm going over the edge.  My husband has AD and his myoclonus is bad.  He can't take keppra or depakote because they cause him to have agression and/or hallucinations and bad dreams.  The doc has now prescribed 0.125mg clonazopan which is a muscle relaxant.  The downside is he is more sedated, and less stable with balance.  I try to only give him the clonazopan at night so he's not so sedated during the day.  He's super sensitive to meds.  He is taking Namenda, the exelon patch, Cymbalta for paresthesia, and a low dose of Seroquel.  He started the seroquel at night because he kept getting agitated (up and out of bed, moving his legs very quickly, shaking his hands quickly, and this would escalate to anger.  It only happened at night, but now it's happening all of the time.  He takes a very low dose - 1/2 pill at night (12.5mg) and now I give him 1/4 pill (6mg) every 4 hrs, and it helps.  I can always tell when it starts to wear off because of the agitation. 

The poor man is miserable.  He is well aware of what's going on physically - I assume it's the meds that's affected his balance and gait so profoundly.  But, what else can I do?  He is now having a swallowing issue, more so with pills and water.  He takes the clonazopan that dissolves, and I can eventually get him to take the pills with yogurt or with water, but sometimes he forgets how to swallow.  I promised him quality of life during this horrible journey, and I feel like I'm letting him down.  He can't feed himself anymore, dependent completely on me for personal care/toilet/showers, he can't even get in and out of bed anymore on his won without falling.  The bedrails won't help, because he scoots to the foot of the bed when he wants to get up.  I'm losing patience because of lack of sleep - the meds wear off in the middle of the night and the agitation kicks in until the next dose takes effect.  I don't want to overmedicate him.  What else can I do???


eloquentsolution1
Posted: Tuesday, January 3, 2012 1:18 AM
Joined: 12/16/2011
Posts: 108


you sound like me three years ago. 

 

first, do get him checked for a uti.  be sure they grow a culture.  it was my moms first and underlying condition which made it impossible to balance meds.

 

second, it may be time to increase the medication a little.  it may be all that is required.  (but get him checked for the uti first.)

 

lastly, the solution could be quite simple if you live in a compassionate state.  my mom does so well on medical cannabis, we took her off seroquil.  her doctor says she wishes all her AD patients were on medical cannabis.  her quality of life is great, though she is completely dependent upon me, she is happy and interactive (in gibberish).

 

i wish you the best.


Iris L.
Posted: Tuesday, January 3, 2012 1:55 AM
Joined: 12/15/2011
Posts: 16156


luvsjsite wrote:

 ... moving his legs very quickly, shaking his hands quickly, and this would escalate to anger.  

- I assume it's the meds that's affected his balance and gait so profoundly.  But, what else can I do?  

 

 

The moving of the legs and the shaking of the hands sound like "extrapyramidal side effects".  These are side effects of certain anti-psychotic or anti-depressant medications.  The treatment is to lower the dosage or stop the medication,  This decision should be made under medical supervision. 

Please google "extrapyramidal side effects" and discuss this with his doctor.

Iris L



Stephanie Z
Posted: Tuesday, January 3, 2012 2:44 PM
Joined: 12/15/2011
Posts: 4219


Please check the new topic I started on Resource for medication problems.

Hope it helps

Stephanie


AlphaLeah
Posted: Tuesday, January 3, 2012 3:31 PM
Clonazepam has muscle relaxant properties, but it is primarily an anxiolytic, used to treat anxiety. As such, it also reduces inhibition and can be sedating.

I'm not sure why the doctor would choose clonazepam over a primary muscle-relaxant such as flexeril, which generally don't have the sedating effects of anxiolytic medications. I'm sure he/she had his/her reasons, but I would ask the doctor about considering something like flexeril instead, given the sedation your husband is experiencing with the clonazepam. 

Also, has the Cymbalta been effective for his pain? Cymbalta can be a wonderful medication for some people (I take it for pain related to fibromyalgia). However, the class of medications Cymbalta is in - the SSNRIs (and the SSRIs) - can have very unpredictable effects on people living with dementia. Have any of his symptoms or distressed increased since he's been on the Cymbalta?

If so, perhaps discuss weaning him off of it and trying an opiate or some other form of pain relief medication.

Just some thoughts. I'm so sorry that you and he are suffering this way. It really sounds to me like you need to get someone to take a second look at the various medications he is on.

Also, I would strongly encourage you to consider calling hospice for a consultation.  You deserve the support they can provide in the home - and he deserves the focus on relief of pain and discomfort and on increasing quality of life (versus trying to increase functioning) that they also provide.
VKB
Posted: Tuesday, January 3, 2012 6:01 PM
Joined: 12/4/2011
Posts: 3470


Luvsjsite  

 

Maybe it's time to get the advice of another doctor in a hurry.  Fresh eyes might be needed, and a another brain wouldn't hurt.

 

Hope you will see a specialist for those with Alz.

 

God's Peace Veronica


cathyjm
Posted: Tuesday, January 3, 2012 11:51 PM
Joined: 12/2/2011
Posts: 160


AlphaLeah wrote:
Clonazepam has muscle relaxant properties, but it is primarily an anxiolytic, used to treat anxiety. As such, it also reduces inhibition and can be sedating.

I'm not sure why the doctor would choose clonazepam over a primary muscle-relaxant such as flexeril, which generally don't have the sedating effects of anxiolytic medications. 
As I understand it, flexeril isn't recommended for people over 65, who are often more sensitive to it and more apt to have hallucinations and cognitive issues as side effects. Of course clonazepam as a benzo drug can also cause gradual cognitive loss. It has a longer half-life than Ativan and if taken twice a day, should keep a pretty steady level of anti-anxiety medication in the system. BUT -- like most medications it can also cause the opposite reaction in some people.
At any rate, I agree wholeheartedly that the medications need careful rethinking by the doctor(s) to see if one or more of them needs increasing -- or tapering off. 
I'd think that a priority is something at bedtime that helps him sleep all night -- or use a bedtime commode (placed so he can hold onto it as he rises from bed) and then go right back to sleep. It's possible that the bed rails are triggering some anger, too. 
Any chance of a hospice evaluation? Night nurse? 

luvsjsite
Posted: Wednesday, January 4, 2012 12:35 AM
Joined: 12/2/2011
Posts: 4


Thanks to everyone for the input.  For the first time ever, my husband swung and kicked at my daughter today.  He woke up from his nap, and was furious - he didn't recognize her, and started yelling.  She has 2 boys under 2 1/2 - you can imagine what that was like.  Luckily, our caregiver was there, and had to restrain him until I arrived.  Again, the seroquel wore off and they didn't give him the next dose fast enough.

 

I called the dr this evening  because he started up again with me and it wasn't time for his next pill yet.  I will take him in tomorrow for a culture in case it is a UTI.  I will mention the questions posed here on the meds, and also the medical cannibis - I don't know if CA still allows this or not.  Also will ask about whether he is experiencing extrapyramidal side effects - it sure looks like the videos I googled - thanks Iris.

 

I'll ask the doctor about hospice as well.  I never even considered this because aside from this, he's as healthy as a horse.  He has many moments when he is completely aware of what's happening - can the end really be so close? 

 

I feel good about the doctor.  He is part of the haps program at UCI, and I have been very impressed.  We were going to UCLA to the neurologist and movement specialists there, but the drive was too much for my husband. 

 

Thanks to everyone for your help - I'll let you know the outcome.  Oh - regarding the cymbalta - it helped the paresthesia - he doesn't have the pins and needles pain anymore.

 

 

 

 

 

 


luvsjsite
Posted: Wednesday, January 4, 2012 12:54 AM
Joined: 12/2/2011
Posts: 4


Hi Stepanie - I'm being dense - where is the resource section you posted to?
Stephanie Z
Posted: Wednesday, January 4, 2012 11:43 AM
Joined: 12/15/2011
Posts: 4219


Here's the post on the Senior Care (Geriatric) Pharmacist consultants.

I'm really uncomfortable with all of the advice that is going around about medications. Everyone is different, takes different meds, have different levels of physical illnesses so what works for one person may, in fact, be dangerous for another. While warnings and concerns about drugs are OK, I don't feel anyone should be recommending drugs for someone else to try.

Here is information

 


Don't know if senior care pharmacists have been discussed on this forum or not, but they are a wonderful resource you might find useful.

Here is a video of one visiting a patient with parkinson's so you can get an idea of what they do: http://www.youtube.com/watch?v=Z-7ic197sUc

 

Here is the link for the American Society of Consultant Pharmacists. You can find more info on geriatric pharmacists at the bottom of the page.

https://www.ascp.com/

 

I have worked with this group in the past and they are wonderful. I have read so many posts about medication problems. I hope this resource is useful to you.

Stephanie


AlphaLeah
Posted: Wednesday, January 4, 2012 3:30 PM
luvsjsite wrote:

I'll ask the doctor about hospice as well.  I never even considered this because aside from this, he's as healthy as a horse.  He has many moments when he is completely aware of what's happening - can the end really be so close? 

 

When a person has dementia, you don't need to worry about the "6 months to live" guideline. No one ever knows how long anyone has to live, especially those with dementia. 

Since your husband is doubly incontinent, very close to being bed-ridden and incapable of walking on his own and (importantly) losing the ability to swallow, he very well might qualify for hospice. It doesn't hurt to call them for a consultation and get a sense from their perspective if he qualifies or not.

What most of us end up regretting is not calling hospice too soon, but waiting too late and not availing ourselves of their services when we really could have used them and our loved ones could have been made more comfortable.
As you said, you promised him quality of life - hospice is a wonderful resource for ensuring that he has quality of life no matter how many or how few months are in question.

Doctors who are not trained in palliative care tend to focus on trying to increase functioning. You might have a wonderful doctor and that might be his focus. But at a certain point, it can be time to focus on increasing comfort. Right now your dear husband is on Namenda, Exelon and Cymbalta - all of which are, in their own ways, stimulating to his brain. In the early stages of dementia, that can be a great thing because it helps people optimize their brain functioning. But at later stages, it might be these medications are *contributing* to his aggression and lack of ease by stimulating a brain that is no longer capable of being optimized.

I don't know. These are just thoughts, and I do hope you'll keep us informed so we'll know how you and he are doing and what you find out and decide.

Wishing you all the best of support - Leah




cathyjm
Posted: Wednesday, January 4, 2012 4:03 PM
Joined: 12/2/2011
Posts: 160


luvsjsite wrote:

 

I'll ask the doctor about hospice as well.  I never even considered this because aside from this, he's as healthy as a horse.  He has many moments when he is completely aware of what's happening - can the end really be so close? 

 

 

 

 

 

 

 

When your husband sometimes has trouble swallowing, that could be a clue that he's pretty far along.

I didn't realize some of the options available till my partner qualified for hospice. In addition to home hospice -- and it can be a huge relief to be able to call someone 24/7 who in turn can call a doctor if need be, or come right out to the house -- there are often two more options. Your husband can stay in a hospice room, where he gets 24/7 care but without the beeps and noise and interruptions of a regular hospital. And it may even be possible for hospice to send a 24/7 nurse to YOU at least for a few days, so you can recover from exhaustion while your DH still gets expert care at home.

Of course yet another option is inpatient care, temporary, at a geriatric psychiatry unit. I've know family members who managed to stay there all night with their spouses, though this is less common than at hospice. (More important is for you to get a good night's sleep.)

I do hope you get the extra help you need, and right away! The doctor you like should be able to arrange any of these helps -- just let him know the situation is now extremely urgent!

cathyjm
Posted: Wednesday, January 4, 2012 4:10 PM
Joined: 12/2/2011
Posts: 160


Stephanie Z wrote:

I'm really uncomfortable with all of the advice that is going around about medications. Everyone is different, takes different meds, have different levels of physical illnesses so what works for one person may, in fact, be dangerous for another. While warnings and concerns about drugs are OK, I don't feel anyone should be recommending drugs for someone else to try.

Stephanie


Stephanie, I agree that it's a good idea to reply to each post about medication issues by reminding the poster to keep the brain specialist informed of what's happening -- and that only a good doctor can provide all the pros and cons of medications (and dosages) for a specific patient. 


That said -- I don't think it's realistic to try to persuade forum members not to ask for others' experiences with a certain medication, or to refrain from making suggestions -- foolish as this may be at times. It's just what happens on this forum. It's been that way the whole time I've been here, and I'd be surprised if one person could change the forum culture that much.

Medication issues are not the only issues that get tossed around here with varied degrees of expertise and experience. But -- that's what a forum is like. There's some danger that a newcomer will take someone's comments as the gospel truth (including yours or mine) and it won't be for the better. When something gets dire (suicide or murder or abandonment threats, for example) -- contact the forum administrators because they have ways to intervene.

Thanks for all your efforts on behalf of the forum.


JAB
Posted: Wednesday, January 4, 2012 4:29 PM
Joined: 11/30/2011
Posts: 740


The getting up and out of bed, moving his legs and hands quickly ... that sounds a lot like Restless Leg Syndrome.  And if that's what he has and it's not being treated properly, no wonder he's going bananas.

RLS, paresthesia, difficulty swallowing ... has he seen a neuro who specializes in movement disorders?  Some of this sounds like Parkinson's (or parkinsonism, which can develop in AD patients for all sorts of different reasons).  There are a number of newer meds approved for treating RLS.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748127/

If he has parkinsonism, the Seroquel is likely to make things worse.

The Cymbalta makes me very nervous.  It can cause myoclonus, paresthesia, RLS, tremor, muscle spasms, extrapyramidal syndrome, aggression, anger, agitation, anxiety, insomnia, blurred vision, dizziness, musculoskeletal pain, and so on and so forth. 

And clonazepam, Seroquel, and Cymbalta do not mix well.
http://www.drugs.com/interactions-check.php?drug_list=703-0,949-2273,2023-1308,1551-936,1979-1274

It looks like Irvine has neurologists specializing in Parkinson's and seizure disorders ... are any of these experts working with HAPS?
http://www.healthcare.uci.edu/ns.asp

Or what about the Institute for Memory Impairments and Neurological Disorders?
http://www.alz.uci.edu/

I know a number of caregivers have reported success at treating myoclonus with gabapentin (Neurontin) when many other drugs failed, if the clonazepam doesn't work out.  Something to talk to the doctor(s) about, perhaps.


Stephanie Z
Posted: Wednesday, January 4, 2012 11:47 PM
Joined: 12/15/2011
Posts: 4219


Cathyjm You said:

 

"That said -- I don't think it's realistic to try to persuade forum members not to ask for others' experiences with a certain medication, or to refrain from making suggestions -- foolish as this may be at times. It's just what happens on this forum. It's been that way the whole time I've been here, and I'd be surprised if one person could change the forum culture that much." 

  

 Unfortunately you are probably right. I was on the Alzheimer's list, another forum, on and off for years. The emphasis was more on changing behaviors by developing the caregiver skills to do this. While some of that goes on here (and some people do it wonderfully), I think some of the newer folks get the impression that when behaviors get troublesome the best answer is medications. During the 90s we fought for several years to get people off "chemical restraints" and found there were other ways to handle most behavioral problems. For example, wandering is a very normal part of dementia for most people. Wandering and rummaging is sometimes the only activity or exercise some people get. So we support safe wandering and give them a place to rummage and they do well without meds. But I've seen several posts suggest meds for wandering which can also be handled at home with a modified environment.

I have unfortunately watched too many people suffer from side effects of medication and because of it their quality of life was reduced significantly. It saddens me to see the incredible emphasis there is on medications. Just an observation.

Stephanie
 


AlphaLeah
Posted: Thursday, January 5, 2012 4:09 PM
Stephanie Z wrote:

 I was on the Alzheimer's list, another forum, on and off for years. The emphasis was more on changing behaviors by developing the caregiver skills to do this. 

 


I too am uncomfortable with the possible over-reliance on medications for behavior management for all the reasons you state. I think what many of us do on here in terms of recommendations and medication commentary is more reactive to the medicalization of care by physicians than necessarily because we support or believe in medications as a primary route. 

I would *love* it if you would start a thread about how to change behaviors via caregiver skills and give us some of your experience and wisdom in that regard - and others could share theirs as well. The ideas about "safe wandering" and giving our loved ones a way to "rummage" safely are both great. 

I did this with my grandmother's purse. I took it, went through it to remove things like IDs that we needed on her behalf, and put back in some things, especially shiny things like some of her costume jewelry, a compact mirror, tissues, emery boards and the other things she liked to rummage through. Same with her jewelry box. I removed the things that were valuable that she had begun stashing in unknowable places and left and moved to the front the things that were lovely but could be lost without any great consequence.

 


JAB
Posted: Thursday, January 5, 2012 4:44 PM
Joined: 11/30/2011
Posts: 740


Stephanie Z wrote:
I was on the Alzheimer's list, another forum, on and off for years. The emphasis was more on changing behaviors by developing the caregiver skills to do this. While some of that goes on here (and some people do it wonderfully), I think some of the newer folks get the impression that when behaviors get troublesome the best answer is medications. During the 90s we fought for several years to get people off "chemical restraints" and found there were other ways to handle most behavioral problems.

 

Stephanie, what I've seen on these boards (including the old one) are posts giving the impression that it's much easier and quicker to use meds to modify undesirable behaviors than it is to develop caregiver skills to prevent and modify them.  This, despite all of the studies that have shown that the caregiver has far less stress, as well as the loved one having a much better quality of life, if those skills are developed.

 

Many of us recommend, e.g., resources such as Jolene Brackey's book, "Creating Moments of Joy": 
http://www.enhancedmoments.com/

Naomi Feil's "validation therapy":
http://www.ec-online.net/community/Activists/difficultbehaviors.htm
http://www.vfvalidation.org

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience".

 

 and The Savvy Caregiver training program from:
http://www.caresprogram.com
I think you can get a 20% discount with code AADVD20.

Even when it appears that behavior-modification drugs truly are needed, it is still very important (IMO) that we point out the considerable risks associated with them, so members who are unfamiliar with the risks can make informed decisions.  I think it grossly unfair to caregiver and loved one alike to give the impression that these drugs are safe.

 

I second Leah's motion ... I'd love to see you start a thread on this subject, and include not only your own, considerable experience, but also links to any resources our members can use to learn about these skills and/or the results that can be achieved if we are successful.


This post has been edited by the ALZConnected Moderator on February 9th, 2012. 


Iris L.
Posted: Thursday, January 5, 2012 8:28 PM
Joined: 12/15/2011
Posts: 16156


JAB wrote:
The getting up and out of bed, moving his legs and hands quickly ... that sounds a lot like Restless Leg Syndrome.  And if that's what he has and it's not being treated properly, no wonder he's going bananas.

I've had something like Restless Legs Syndrome.  It can be related to iron deficiency.  Although my iron levels were within normal limits, I treated myself with iron supplementation.  I did this without doctor input because no doctors seemed interested in my pain.  I AM NOT RECOMMENDING SELF-TREATMENT FOR ANYONE ELSE. 
Iris L..

 


Iris L.
Posted: Thursday, January 5, 2012 8:59 PM
Joined: 12/15/2011
Posts: 16156


Stephanie Z wrote:

 While warnings and concerns about drugs are OK, I don't feel anyone should be recommending drugs for someone else to try.

 

 

Stephanie

 

 

 

Stephanie, I must respectfully disagree.  When members recommend a drug, they are not saying "Your LO should take this drug."  No, they are saying, "This has worked for my LO and you can investigate this for your LO."  This means, look it up on the internet, and discuss with your LO's own doctor and pharmacist and any other medical provider. 

 

I was a pediatrician years ago and I readily admit that my knowledge of Alzheimers, other dementias, and their pharmacologic treatments was limited.  I'm continually surprised at how scattered the treatment of the dementias seems to be from licensed physicians.  I see nothing wrong with members suggesting a medication or course of treatment  to discuss with a LO's attending doctor.  Very frequently members will suggest that a UTI be searched for when confronted with new behavioral problems.  Many doctors don't know this.  Often members suggest that a more experienced doctor be consulted.   

 

 

 

 

 

IMO, these boards have worked very well to bring needed information to caregivers and patients. 

 

 

 

Iris L. 



Stephanie Z
Posted: Thursday, January 5, 2012 9:10 PM
Joined: 12/15/2011
Posts: 4219


Leah and Jab, I joined this list because I am retired and I miss working with people who have dementia and their families. When I started doing this in 1989 none of the dementias were specified. Confused elderly simply had a diagnosis of dementia and were all treated the same way. These people were kept on regular medical units where they were abused by the other residents (and sometimes the staff), restrained and over medicated. We had many battles to fight before we were allowed to develop secure units and put restrictors on the windows so our patient's couldn't get out. Then suddenly there was a move to reduce chemical restraiints and eliminate physical restraints before we could figure out what to do without them. It was a rough time, but we did develop some very good ways of handling behavioral problems. For quite a few years dementia units were getting better and better. Now, however, with cutbacks in funds, I worry that there is not enough training being done and staffing levels are declining.

      It is extremely important for families to be vigilant and active advocates for their LO. However, if families are used to medicating for annoying behaviors and don't realize there is a better way, I fear that the old problems will come back again.

  Over the last year I have been finishing a book on common sense dementia care, which is basically a review of many of the things I've learned over the past 20 years.I developed some guidelines for common sense care.  I would love to share some of them and there are, of course, many resources on the internet.

Let me think about how to do this and I'll start a thread over the next few days.

Thanks for your comments

Stephanie


Beth in Indiana
Posted: Thursday, January 5, 2012 9:25 PM
Joined: 12/21/2011
Posts: 95


I'd like to just add it's 2012.  I appreciate hard battles won in reducing unnecessary drugs and using behavioral therapy whenever possible.  However, if someone is swinging at you and eyeing kitchen knifes, medication is not out of the question.  I think there is still much to learn on how to balance all the med's as it's often felt like someone was throwing darts early on to find what worked.  But eventually, as a partner with the caregiving team, we did.  And we continue to.

 

I'm just saying don't rule out anything that works to protect safety, and quality of life for both the LO and caregiver. 

 


Iris L.
Posted: Friday, January 6, 2012 2:05 AM
Joined: 12/15/2011
Posts: 16156


Stephanie Z wrote:

 

    However, if families are used to medicating for annoying behaviors and don't realize there is a better way, I fear that the old problems will come back again.

  Stephanie

 

 

 

Stephanie, nurses like you who were in the trenches when dementia was "senility", nurses who changed the nature of dementia care entirely, are to be applauded.  Believe me, members are already talking about non-drug ways of managing behaviors.  We recommend books such as "Creating Moments of Joy" by Jolene Brackey and articles such as "Understanding the Dementia Experience" by Jennifer Ghent-Fuller.  We recommend the main webpage's sections on Behaviors.  JAB found a commercial online caregiving training module for professional caregivers that members had an opportunity to access for free. 

 

 

 

No one wants to go back to the days of physical restraints and making patients virtually comatose in order to manage behaviors.  That is never brought up as options from the members here.  In fact, often members complain that their LOs are too sedated in their SNFs, and they need to understand what is happening and which steps to take to remedy the situation.

I welcome your input as a professional voice with recent and  high level experience in the dementia world.  Your thread about the geriatric pharmacists was most helpful.  I await further threads from you.

 

 

 

Iris L. 

   



Iris L.
Posted: Friday, January 6, 2012 2:28 AM
Joined: 12/15/2011
Posts: 16156


Stephanie, I read more of your bio on another thread.  I see that you are used to working with experienced dememtia neurologists.  Many of our members are not.  They need as much help and suggestions as they can get. 

 

Iris L. 


jfkoc
Posted: Friday, January 6, 2012 3:30 PM
Joined: 12/4/2011
Posts: 17447


Stephanie....your perspective has been very helpful.

 

I know we discuss meds a lot here but have never felt the posts were anything more than forwarding experiances and information. The fact is that a lot of Drs are treating our loved ones that are not experianced with older patients or dementias of any kind.

 

Hopefully what is discussed here is used as a stepping stone to improve another's quality of life. Ours too.

 

Please continue to share your experiances. We need all the tools we can get. 

 

BTW...are you taking care of a loved one now? With the switch to the new and improved foremat (LOL) I can go back and look that up.


Stephanie Z
Posted: Friday, January 6, 2012 4:35 PM
Joined: 12/15/2011
Posts: 4219


jfkoc, I'm not currently taking care of a LO with dementia. The last time was when my FIL had lung cancer with complications. He was extremely confused for the last 3 months of his life and I cared for him in my home with hospice care. However, the

10 years prior to that were filled with taking care of my own parents both of whom died of liver cancer and my FILs various problems which included strokes, prostate and lung cancer, depression, a fractured hip and prostate cancer. Much of the time I was running back and fourth from Virginia to NJ to care for him.  I'm well aware of caregiver issues, especially fatigue. I thought it would never end and when it did, I was diagnosed with atrial flutter which was so bad I almost died in the ER. Had a cardiac ablation a month later which cured the flutter and 5 days later I was diagnosed with ovarian cancer. I am a 9 year survivor.

     Because of all of this, I think I have a fairly good handle on how most of the caregivers on this list feel. My heart goes out to all of them. But I firmly believe that helping them to learn how to deal with behavioral problems is the best way to improve the quality of life for both the dementia patient and the caregiver. On the units I ran and worked on, we were proud that only 7 or 8 percent of our patients needed psychotropics. I'm not sure if the surveyors still post these statistics, but we were mandated to keep track of this and had pharmacology consultants visit monthly to review patient charts looking at these issues. Our patients were comfortable and I would describe many of them as happy despite their dementia.

Most, but not all of the combative or violent behaviors described here start out as defensive behaviors because care givers don't realize that their own behaviors often frighten or upset the person with dementia. Once a caregiver learns that, there are steps they can take to modify the negative behaviors.

I'm retired, have done a lot of teaching and presentations for my local AD chapter and I still miss patient care, but at 70 I can't do it anymore. That's why I'm here. Hoping I can still help.

Stephanie


Debbie 1951
Posted: Friday, January 6, 2012 6:40 PM
Joined: 1/1/2012
Posts: 138


I am glad you are here too. I found your opinions  and suggestions right on where my mother is concerned. I am really trying to change how I approach her and her moods, trying to change the tone when I speak.

Thank you

 

 

 


Debbie 1951
Posted: Friday, January 6, 2012 6:47 PM
Joined: 1/1/2012
Posts: 138


I guess I am a bit dumb, but what is medical cannabis going to do for a person with AD? I was a very sheltered kid of the 60's
Iris L.
Posted: Sunday, January 8, 2012 1:30 PM
Joined: 12/15/2011
Posts: 16156


Stephanie Z wrote:

  Most, but not all of the combative or violent behaviors described here start out as defensive behaviors because care givers don't realize that their own behaviors often frighten or upset the person with dementia. Once a caregiver learns that, there are steps they can take to modify the negative behaviors.

Stephanie

 

 

 

This is SO IMPORTANT for members to know, Stephanie.  Most of our members and patients are super stressed out.  I know I am.  Even the doctors aren't aware of how much the stress and anxiety around a dementia patient complicates the patient's life.  But they have a prescription ready.

 

 

 

Iris L.