Medication question

JoseyWales

DH's anxiety is increasing again. He cries at least twice a day for 30 minutes at a time for no apparent reason. He gets very agitated about 3 hours after he wakes, and again before dinner. He paces at night and I can't settle him into bed. Once asleep, he sleeps 4-5 hours before getting up and wandering the house for 1-2 hours. Wednesday night I think he was up for 3 hours. Then he'll eventually go back to bed and sleep another 3-4 hours.

I'm now back at work (teaching). During the summer I handled the up at night somewhat, but I could also sleep later. That can't happen now. And I feel so bad for him when he's crying and when he's super agitated.

We have an appointment with the PCP this week, who handles medication. I feel so bad asking for more medication for him, because I don't want to feel like I'm drugging him to make him easier to handle. But I can't take care of him if I can't sleep, and he seems so anxious most of the time. I'm pretty sure the doses of meds he's on now are low, except for the anti-depressant. 

I guess I'm just looking for someone to tell me that looking for medication isn't a bad option, and anyone who had similar experiences and was able to find a balance of medication that stopped the agitation, helped with sleeping but didn't seem to "drug" their LO. I don't want him sleeping all the time, either.

Gardeningartist

My HWP takes Zoloft & it is working very well for him.  He takes 150 mg.  Maybe your DH needs an increase.  I believe that the maximum dose for Zoloft is 300 mg.  You should talk to his Dr. & see if an increase in the dose is possibly.

June45

Josey, I sympathize with you; I am also sleep deprived.  My husband doesn't get up and wander for a couple of hours like your husband. Recently he gets out of bed about 3 times a night.  It always jars me out of a sound sleep. When I ask him what he needs, he says he was "wondering what's going on". When I finally get back to sleep, he gets up again...and repeat.  A nurse told me to try 5 - 10 mg of melatonin. 5 mg hasn't done the trick; I am going to try a larger dose tonight.  I can tell you, I would do just about anything to get some sleep.  Continuous lack of sleep will lead to all sorts of health problems for the caregiver.  Look at it this way, talk to your PCP and do what you need to do so that he will sleep and you can sleep.  What's good for you the caregiver will be good for him.

60 falcon

In my opinion asking for meds for your LO is totally ok and appropriate.  My DW had been on meds for depression for years and has been on meds for anxiety and what seemed like panic attacks for the last year or two.  She's not all drugged out, just a lot more calm.  I doubt I would have been able to manage and care for her without the meds. 

Talk openly and honestly with his doc and if meds are appropriate and likely to help, the doc will likely help you two out.

Stuck in the middle

Most psychoactive meds are not "drugs."  They make it possible for millions to live happy, productive lives that would not be possible without the meds.  My antidepressants mean I don't have to talk myself out of suicide several times a day, and my son's antipsychotics mean he doesn't have to listen to voices all day.  They don't limit our ability to function, they greatly increase it by removing obstacles to function.  And they make it possible to be happy, part of the time.

You are not asking for meds solely to make your LO easier to handle, you are doing it because he is miserable.  There are meds that will help him, that are not sedatives.  Medication has come a long, long way since 1952, when I underwent surgery with ether as the anesthetic and the available meds truly were drugs.  You may have to try more than one before you get a good result, but you will find it.  And you will both get some sleep.

Go for it.  Best wishes to both of you.

Ed1937

Josey, I'm sorry. This is not sustainable, and you know it. Get medication to treat the problem. You have to be able to function if you are going to take care of him. If the doctor won't help, find another one. Let us know how it's going.

John1965

My DW was prescribed a low dose of Lexapro for anxiety and it has made both of our lives better.

JoseyWales

Thanks everyone, I appreciate the other ways of looking at this. Sometimes I get stuck in my own thinking "Don't medicate him because it's your problem."  

He's been on Lexapro, and then it was increased. It worked until it didn't. Then we switched to a different one which was a disaster. Switched again, increased it, added a second. That made things better for about a year. An anti-anxiety med was added before bed about 8 months ago, then added to the morning about 4 months ago. It's the lowest dose prescribed. That's the one I think needs to be increased. Hadol for the delusions and anger at me was added less than a month ago. That made a dramatic improvement - I've only been kicked out of the house once since then and I was able to talk him out of it.

BUT, there are still issues, obviously. I just want him to be content, which I'm not sure is possible with this disease.

Jeff86

I read this as your DH has an increased level of anxiety and agitation.  You are responding to his distress…which also has an impact on your sleep.  We can’t treat this disease directly….but we can treat its symptoms.  In your shoes, I’d be talking with a neurologist about how to address your DH’s current condition.

Doityourselfer

Medications do help!  

My husband's doctor came to our house early this afternoon for his check up.  My husband was highly agitated before the doctor arrived and continued to be agitated while Dr. D was here.  My husband was cursing, talking gibberish, clapping his hands, wouldn't sit down and told me to shut up.   This behavior happens very often and I was glad Dr. witnessed it.  His meds are being slightly  increased in dosage - seroquel, trazodone and Zoloft.  

I can't imagine this nightmare life without these meds.  A couple times this week I found the meds on the floor.  My husband spit them out and I didn't see him do it. My husband is very difficult to take care of without medication.

JoseyWales

Thanks again everyone. I wish DH's doctor could actually see what's going on. We've used the same doctor for 20 years, and I know he sees most of the losses, but no one could see what goes on like I do.

I'm a special education teacher, who spent many years teaching children with emotional disabilities. I'm used to tracking data on behaviors and looking for patterns. But I still feel like the doctor is going to look at me like I'm looking for an easy way out of these behaviors. The neurologist just told me, "Make sure you have a routine for the days and make sure he gets exercise." Duh. 

Today DH got out of bed about 15 minutes before I did. I heard him moving around the house. When I got up, I could tell he was extremely anxious and he told me for the first time, "I want to go home." Thanks to all of you here, I was able to remain calm, and just told him that I'd have to get dressed first. And I immediately gave him his morning meds. I took my time getting ready to go. About 30 minutes later, he said, "Why is all my stuff here? Wait, this is my home." and all was good. Well, not good. But at least we didn't have to go looking for his home.

Jeff86

My DW has been wanting to ‘go home’ for a couple of years now.

I can usually successfully redirect her in the morning, but by late afternoon sundowning the anxiety increases and some days the only solution is to take her out for a drive for some time before returning to our home of 24 years.

I hoped this would be a phase…if it is, it’s a mighty long and durable one!

Crushed

Stuck in the middle wrote:

Most psychoactive meds are not "drugs."  They make it possible for millions to live happy, productive lives that would not be possible without the meds.  My antidepressants mean I don't have to talk myself out of suicide several times a day, and my son's antipsychotics mean he doesn't have to listen to voices all day.  They don't limit our ability to function, they greatly increase it by removing obstacles to function.  And they make it possible to be happy, part of the time.

 Of course they are Drugs   , regulated by the Food and DRUG  administration .

Depression is a serious illness that can and should be treated with appropriate drugs. I am glad they work for you 

All words are "contextual" They mean nothing without context Drugs used and approved for medical purposes are also called pharmaceuticals and medications.  confusion is common Nitroglycerine is a medication an also the active ingredient in dynamite.Nonoxyl-9  is used as a contraceptive and as a scuba diving suit detergent.    Drugs have both a chemical form and a biological function.   Sedation , pain relief etc are functions.   Contraception is a function .  Use a a drug for some functions  is often authorized and approved use for other functions is not 

The unapproved use of anti psychotics for sedation is the normal issue.

however drugs used and approved for anxiety are no big deal https://www.webmd.com/alzheimers/guide/treating-agitation

Newbernian

Josey, I feel so bad for you and your DH and what you are going through.  My DH is in mild/moderate stages of the disease, so listening to your heartache, I hear my own future story.  Maybe different, maybe not.  My father suffered from the disease and died in 1990, so I've already been through one experience.  There was no outside help at the time and my Mother was very distressed through it all.  I have no family and moved out of state, 7 years ago.  So I am looking to find a local caretaker support group.  It's a small town and anything available closed up after Covid and nothing has restarted with the new surge of Covid.

The comments made about drugs and the varying purposes and uses was spot on.  They are a tool.  They are not a moral judgement.  When used within the prescribed dosage and not overdosed, how can this be wrong.  I, personally, have been on psychiatric medication for the past 20 years and I function quite well.  Previously, I would be metaphorically in a heap on the floor crying my way through the day.  That being said, I still have those days but am able to cope better.  From personal experience some of the SSRI's can cause anxiety.  I was aware of these side effects and have argued with many DR about this.  At first, I was frustrated and helpless.  As I became older I became more confident in my judgement and I became my advocate for my treatment.  I have had to do this to get my DH on generic Arricept.

   His PCP didn't believe in the drugs, said they didn't work.  After 1 1/2yrs. watching him go downhill, I tried to get him into a neurologist but I needed a referral, from guess who?  His PCP.  He brought him into the office to get a referral but begrudgingly prescribed Donezapil.  Pronouncing again "his" feelings about these drugs.  Well the drug worked.  I saw improvement in less than a week.  Was amazed but doubtful, but it was real.  These drugs will stop being effective at any time.  They only help control some of the symptoms of the disease.  Three months later, I went to the DR for my own check-up.  I challenged him about his attitude in not prescribing these drugs.  He said, I do when patients request them. Then he again defended his position and said that drug trials are so inadequate and the families have so much hope. I agreed that all I have is hope because I know the end of the story.  Even if the drug isn't as effective as he feels it should be or as I wish it were, I said I would be happy with one more day of one memory and he had no right to take that away from me.  He said, "You're right, I looked at this wrong"!!! I said his attitude was like denying pain relief to a stage 4 cancer patient.  It's not going to cure the cancer but may give a little relief from the pain.  Maybe I changed his mind but he's retiring in January  I did get the referral to a neurologist, finally.

My point to all of this is do your research. Be observant. Don't be afraid to speak out for your loved one.  One DR told me years ago, "That is why they call it the Practice of Medicine".  There is no right answer for all.

JulieB46

My husband sounds similar to yours. He never had anxiety or OCD and now he checks his cigar box with his “valuables “ every night 3 or 4 times and hides it until he can’t find it. He also checks the locks and doesn’t believe me when I tell him everything is fine.  Your husband cries and mine drinks his fears and sorrows away.  I get to deal with his fears, paranoia, and mean drunk attitude. I also work in education, so I can handle not sleeping well now, but in 2 weeks, not so much.   Last fall, I called his pcp and told him of DH’s delusions and paranoia. He prescribed seroquel at night.  That helped a lot with both of our sleep schedules.  It has been almost a year, and I’m starting to think his dosage might need adjusting.  He is starting to wake up and ask for the light or tv to be on, because of anxiety.  Also, I don’t want to hear people say, not to use seroquel—he has been able to relax and sleep.  ALZ is terminal and I want him to be comfortable until he is no longer here.

CS 63

Medication for troubling symptoms?  Absolutely!  

My DH with EOAD mixed dementia has been semi reclusive for a few years now, he was not comfortable in crowds, with family dinners or get togethers or especially with the grandchildren.  Unless it was for a medical appointment he wouldn't go anywhere with me, which made it very hard for me.  He has had bouts of anger and depression along with suicidal thoughts.  Cipralex helped with the suicidal thoughts but not much with the anger or anxiety.  Two weeks ago his anger turned from ripping clothing to trying to tear apart our house.   After a 911 call and trip to ER, in consultation with a psychiatrist my HWD was started on Risperidone.  What a difference, right away!  He has now accompanied me to visit my Mom a couple of times, gone to the grocery store with me, and yesterday we went to my daughter's to watch our granddaughters swim.  A month ago he was upset when they came to our house and said to me why did you have them here, you know I hate those kids. He was smiling and splashing water at them!  The icing on  the cake was this past weekend when our oldest daughter got married here at our house.  The wedding was planned for last summer when he was somewhat better but postponed due to covid. I have been nervous and worried about how he would take it all summer but it was amazing.  He helped, as much as he could, with the set up, he walked her down the aisle, smiled for pictures..... it made all of us so so happy!  Without the risperidone I doubt he would have made it out of the house, let alone be an active happy participant! The only effect I've noticed so far is that he is slower with his response time, but I will take that any day!

JoseyWales

Wow, CS63- I'm so glad you shared your story! How nice it must have been to have your husband "present" at the wedding! 

I'm amazed that you were brave enough to plan the wedding for your home in the first place.

Ernie123

My DW was diagnosed with Alzheimer’s in 2012. She now lives in a MC facility because her care became too demanding for me alone a year and a half ago. About six years ago she was prescribed an anti anxiety medication which gave her relief from irrational fears. About three years ago, she became more paranoid and delusional at times leading to occasional outbursts of violence. Her family doctor referred her case to a Geriatric Psychiatrist. After her assessment a prescription of Risperidone helped her a great deal in calming those intense feelings. She still had bouts of paranoia, but without the intense emotional response. More recently as these issues again worsened for her, her geriatric Psychiatrist switched her to Olanzapine. Huge improvement in mood followed immediately. Calm, relaxed, no more paranoid upsets. Based on my experience my advice would be to get an assessment by a geriatric specialist. Everyone is different and meds must be tried and adjusted. It is best to have this done by someone experienced with dementia patients. Do not hesitate to employ the medications. My wife today is able to enjoy her best quality of life because she is not overwhelmed with irrational intense fears and delusions. She has no side effects. I can’t imagine what her life would be without these medications. Good luck and share updates if you wish.

Iris L.

Newbernian wrote:

The comments made about drugs and the varying purposes and uses was spot on.  They are a tool.  They are not a moral judgement.  

   His PCP didn't believe in the drugs, said they didn't work.  

  I saw improvement in less than a week.  Was amazed but doubtful, but it was real.  These drugs will stop being effective at any time.  They only help control some of the symptoms of the disease.  Three months later, I went to the DR for my own check-up.  I challenged him about his attitude in not prescribing these drugs.  He said, I do when patients request them. Then he again defended his position and said that drug trials are so inadequate and the families have so much hope. I agreed that all I have is hope because I know the end of the story.  Even if the drug isn't as effective as he feels it should be or as I wish it were, I said I would be happy with one more day of one memory and he had no right to take that away from me.  He said, "You're right, I looked at this wrong"!!! 

Unfortunately, this doctor's opinion is all too common.  Everyone knows that none of the medications used are cures for dementia.  But the main point is that they may ENABLE the PWD to remain at home in the community for a longer period of time.  How could this not be a benefit?

Iris

Selena627

I also care for my DH who has been diagnosed early in life, so I also work a full-time job, at home, and in this 24/7. You should not feel bad about asking for medication to help your husband. My DH was in a clinical trial for Lexapro - which is an old drug that has been on the market for years. Very cheap. The trial was to confirm if it helps with AZ agitation and anger. He's now on that med daily. He's also on Trazadone at night to help with sleep. Melatonin doesn't do much and our neurologist ok'd to take it but lesser mg because the body doesn't really gain anything at 10mg vs. say a 3 or 5mg. I can so relate to your struggle of feeling guilty but without sleep you aren't as good of a caregiver.