As Lynne, sleeping issues

French

 As Lynne, my partner barely sleep at night. Now agressive behavior begin in the afternoon.

As he is now in the MCF, it doesn’t directly disturb my own sleep. But it annoys me. Yesterday, he has broken the tablet they attributed him. He was very agitated, because he had a new letter from his mother. The caretaker tried to call me but I wasn’t available. He became angry and broke the tablet. He didn’t slept all the night and was agressive.

We decided they won’t give him his mother’s letters.

His treatment was completely revised 15 days ago. Again, it only worked for a few nights.

He now has 50mg quetiapine (seroquel) morning + evening. Deroxat 20 the morning and Amytril 10 the evening. The neuro has been called and proposed to increase quetiapine to 100 the evening. I read that some of your PWD have such doses, even more.

But, I was wondering about Donepezil (or aricept). I read that agitation, aggressiveness are very frequent side effects. Do some of you noticed improvement when stopping it ? We don’t know if this medication is efficient, but if we need (and are not able) to compensate such side effects, I don’t see the point of it.

Ed1937

I have no experience with those meds, but if you want to check for side effects, I use drugs.com. It's easy to use. Sorry he's having the problem.

Jo C.

I am so sorry your partner is having such a dreadful problem.  It must be horrible for him to have such feelings driving him and also very stressful for you.  This of course is affecting his very quality of life.  I am not a physician, so the following is based on my understanding of what I have read.  Multiple different drugs can interact with one another, so that makes the in-depth assessment more important to determine the cause of the onset of such behaviors.

The medication of is always a good place to look when assessing matters.   The Deroxat is an SSRI antidepressant.   It is extremely important prior to prescribing an SSRI to assess the family history to determine whether or not there is a history of Bipolar Disorder anywhere in the family even if the patient has had no such diagnosis.  SSRIs can trigger a Bipolar Disorder episode that had not happened before the SSRI was used, or may cause a continuing issue in a person who has never had such an incident before if they continue the med in such a case.  Even if he has never been diagnosed with Bipolar Disorder, if anyone in his genetic family has that condition it is of higher risk for him if prescribed an SSRI.

Also, I had to look up Deroxat as I am not familiar with a drug by that name; it is different names in the U.S.  What I found in side effects for Deroxat, (not connected to Bipolar Disorder), included the following:

"The following symptoms, anxiety, agitation, panic attacks, insomnia, irritability, hostility, aggressiveness, impulsivity, akathisia (psychomotor restlessness), hypomania, and mania, have been reported in adult and pediatric patients being treated with antidepressants for major depressive disorder as well as for other indications, both psychiatric and nonpsychiatric."

Amytril is a tricyclic antidepressant and when looking at its side effects, agitation, anxiety and other effects are also noted.

Since he is being cared for in Tunisia and you are in France, it makes it a bit more difficult to assess matters yourself. I understand you are going to Tunisia in a couple of weeks, so it is good you will be there to ascertain what is happening as much as you can and to consult with the doctors in person.  Perhaps you may also want to discuss this with your partner's prior dementia specialist he had in France before you leave for Tunisia. This may be helpful in discussing matters with the new doctors who are now managing your partner's care. Perhaps his medical history in his earlier dementia care will be helpful in some way.

If he has been on Aricept for a long time without such effects, it may or may not be the culprit for the behaviors unless having a negative reaction interacting with the other meds; however, the doctor can decide if it is worth tapering the Aricept or any of the other meds to see if that has any effect.  NOTE:  Aricept should not be stopped abruptly; that can cause withdrawal symptoms sometimes up to even intense hallucinations.  It is the same with the other meds, they too need to be tapered rather than being stopped abruptly.

It will probably take awhile to determine what is happening since this has not been the usual behavior for your partner. If his behavior does not improve, I wonder if it is possible he would be better served by being back in France in a care facility there.  Could he be having a problem issue being far away from the familiar people, things and ways in  France now that Tunisia is no longer like a "vacation" to him?  Just a question that came into mind that may or may not have any relevance.  It will take awhile to determine the cause and the treatment. I so hope that he is able to be helped soon.

Let us know how he is doing and how you are doing, we will be thinking of you.

J.

harshedbuzz

French-

Cobbling onto what Jo said, I know several families whose children with autism where prescribed Deroxat (it's called Paxil here in the U.S. I think) who had to be taken off the medication because of activation, aggression and a worsening of behavior. (I used to moderate a forum for parents of children with HFA) For a couple of these kids, this side effect was apparent within weeks of starting the medication but for others the uptick in agitation and aggression started after they'd been on the medication for quite some time after having had it work really well. A number of the kids had a family history of bipolar disorder (not unusual among kids on spectrum) and a few of them later went on to develop it themselves. 

There is a genetic test available in the U.S. (not sure about France) called Genesight which tests for which medication might be best tolerated and most effective for different individuals. 

Seroquel 100mg in the evening is not an unusually high dose of that medication. Seroquel is prescribed at much higher doses for schizophrenia and bipolar mania/depression- up to 800mg/day. 

HB

French

Thank you Jo and HB.

Medication is a strange world for me. I have never been sick, never been to the hospital but to give birth and even that never needed more than 1 or 2 hours. Except for Alzheimer’s, it was the same for my partner. My children are also very healthy and have never had any treatment. Medication is a real jungle.

Before going to Tunisia, my partner was quite agitated but not agressive. He needed to get up once or twice in the night bout when he was sleeping with me he had quite good nights. So it is quite new. Even when he did the respite stays, the nights were the main difficulty.

It began without any change in medication and now they try to find the good one. It is revised every 15 days. I think I wouldn’t do better here because having an appointment is much longer than 15 days. His neuro here told me that the solution will certainly be found by increasing quetiapine… what is currently the ongoing process.

But yes, I think you have hit the nail on the head, Jo, he now knows it’s not only holidays. It's a golden cage, a cage open to the outside, but it's a cage! 

When I call him in the day, everything is fine. But what can run in his head when he is alone at night ? what happens is certainly sundowning and insomnia.

10 days and I will see him. Difficult to proceed to a complete check because I will only spend 2 1/2 days there (large weekend). The medical coordinator call me every week so I am quite confident.

Ed1937

Jo C. wrote:

Multiple different drugs can interact with one another

The site I linked to will also allow you to check for drug interactions. Unfortunately doctors are not always up to date on these things, so we should check new drugs ourselves.

Jo C.

Dear French; this is a difficult matter made even more difficult because you are unable to be close to where your partner is so that you can see him and follow closely with what is happening; it must be very uncomfortable and concerning for you.

Medications are often confusing when one is not familiar with them and all of us have had to do research and learn about our Loved Ones meds.  It would be helpful to use your computer to look up and study each and every drug your partner is being given and look at their possible side effects.  We learn that we cannot let just the physician specialist prescribe the meds without doing this, especially when there are problems.

Our Loved Ones are unable to do this for themselves, they must depend upon us to do it for them; we become their advocate which is very necessary.  We are the most important persons in our Loved One's lives and are not only their advocates, but we are also their protectors.  We would not want any less done for ourselves.

You mention your partners agitation, insomnia, aggressiveness, hostility, etc.  The one antidepressant alone, Deroxat, has the following possible side effects listed along with other effects:

"The following symptoms, anxiety, agitation, panic attacks, insomnia, irritability, hostility, aggressiveness, impulsivity, akathisia (psychomotor restlessness), hypomania, and mania, have been reported in adult and pediatric patients being treated with antidepressants for major depressive disorder as well as for other indications, both psychiatric and nonpsychiatric."

 Such reactions may occur when the drug is first started, however; such reactions can also begin to occur months after the drug had already been taken.  Since it is mixed with other meds with their own possible side effects increases the risk of drug interaction for more negative effects.  I am not saying that this is what is happening, but it is something important to consult with the dementia specialist about.

As for me mentioning that he may be affected by being far away from France with its familiar places, people, etc.; it was not meant that the care facility was like a prison . . .

In dementia, the brain begins to want only the familiar; changes are quite often the enemy of a person with dementia.  Familiar and good routine and structure and a calm environment is part of their security.

Also; it is very important to realize that in dementia, the brain loses the present time first and goes backward farther and farther to earlier times where the person felt more familiar and safe.  That becomes their place of security and comfort.

Your partner may possibly be having a reaction to his meds on top of the dementia changes;  that is a dreadfully frightening place for the patient which can cause that person dreadful upset, fear, anxiety, which can be displayed by severe anger and negative behaviors.  Add to those problems the fact that he is no longer in his home area, not near to familiar people and in a country where he recognizes nothing.  This may all be working together to cause the behaviors he has been experiencing.

He may no longer be able to recognize the "vacation" aspect of the care plan in the present facility.  The fancy living quarters, the ocean nearby - that may no longer even be recognized by him as had been planned priot to and earlier in his placement, BUT because of the dementia changes within the brain, he may internally be able to feel the recognition that he is not "home," not in a familiar area, he is not in France, he is not with people he is comfortable with, he is in a different culture.

 He will no longer be able of learn new things to assist his adapting to where he is.  The beautiful place with all the amenities and going out on day trips and to the ocean, etc.,  really is often about impressing the healthy family member; those are good marketing tools to have families more comfortable about having their Loved One admitted.  Sometimes that works out for the patient; however, sometimes these are not things that many persons with dementia are going to be able to accept, recognize, appreciate, or often even able to feel any sense of comfort with, especially as the disease advances.  He appears to now be beyond that. The amenities may look wonderful to the well person, but this may no longer be where your partner's cognizance and feelings are.

Just something to think about.  Please do read about his meds and also insist that the idea of the meds be taken seriously by the specialist in that they may (or may not) possibly be contributing to the problem issues or perhaps even be the cause of this new behavior.  You are doing your best, all of us when new at caregiving have had to learn as we go along. 

I send best wishes; I know that you will only be in Tunisia for 2 1/2 days, that is not a lot of time, but it will at least give you direct observation and interaction with the care providers.  Also would be good to know just how much real and true detailed training and understanding of dementia and how to best communicate with advanced dementia patients the aides really have had.  Just being nice is great, but is not enough; dementia is complex and that is much more true when problem behaviors arise.  It will be a busy 2 1/2 days.

Please let us know how it all goes on your visit and how you are doing.  We truly do care.

J.

JoseyWales

Hi French - I was just thinking about you and your husband and wondering if things have improved the last few days?  I'm hoping for that. And it sounds like a really good idea that he no longer recieves his mom's letters.

French

 Hello to all 

Actually, I haven't had much time to study the sleep problem further.

On Thursday night, as he was pacing the hallway, as usual, he fainted. They took him to the emergency.

They did a CT scan on him which showed nothing but brain atrophy. They called me to tell me they were keeping him overnight for observation. At 8am they called me back to tell me that he had fainted a second time and that a fibroscopy was scheduled. 

An hour later, I was told that he had a small hiatal hernia and esophagitis due to acid reflux.

In December, just before going to Tunisia, We saw a gastroenterologist (we had to wait 3 months for the appointment) because of the fecal leakage and because he often complained of having a stomach ache. She did an ultrasound but saw nothing but bubbles.

Thinking about it, he was rubbing himself over the stomach whenever the meal was a bit large and long. I would take him to the bathroom and it would pass... maybe just because he was getting up! 

He is on anti-reflux medication and a diet and didn’t fainted last night and when I had a look to the camera at 11pm he was sleeping. 

In any case one of the problems is solved and maybe this will solve also the sleeping problem. With his reflux, he couldn't sleep and he can't tell what's wrong anymore, you have to guess from his gestures.

In any case, I am impressed by the efficiency of the hospital. Here, I think We would have spent the night in the emergency, me in the corridor without being able to stay with him and without any CT scan or fibroscopy. The last time the doctor sent us to the emergency room for a CT scan, we came back empty-handed after 6 hours. Alzheimer's is not an emergency...

About the mother, today I learnt by my partner’s brother that she intends to sent one letter per week to her dear son. Now I think that the agitation is because when he ear that he has a letter, he must be happy and very disappointed when seeing it is from his mother. The coordinator will tell him he received a letter from his mother and ask him if he wants it. I think he will refuse them. We won’t be able to solve the problem at its origine, so we o avoid impact.

Our friends flight to Tunisia tomorrow and me in 6 days. 

JoseyWales

Thanks for the update, French. Obviously, a problem was discovered - I hope that cures the nighttime sleep issues.

Figuring out what's wrong with an Alzheimer's patient is sooo difficult. With DH the doctors all look at me to fill them in. Their guess is as good as mine!

Jo C.

Dear French; I am so very sorry for what has happened.  The good thing is that the hospital care was so good and very accessible.

The doctors will be looking for a cause whether it be the combination of meds, Alzheimer's Disease effect within the brain, or something else. If it recurs, they may want to try to see if it is caused by a cardiac issue. Sometimes the heart will have an arrhythmia that does not occur all the time, just once in awhile which can cause a loss of consciousness, so it takes time to monitor and test to see if that may be the issue so it can be corrected.

 I wish you a good trip and that all will soon be better than it has recently been.

Let us know how you are, we certainly will be thinking of you

J.