Unique situation - need some advice please

slippednfell

I haven't been around in a bit and have just been plodding along.  I am at a point that I need some advice.

Background: I am handicapped (legs).  We live on 55 mostly wooded acres in the middle of nowhere, Arkansas.  My husband has always been a self-serving man and has always been passive aggressive.  He is a vet (retired after 20 years), rated at 80% disabled / paid at 100% disabled.  Don't get me wrong, I have my shortcomings too, patience being one of them.  He has been on the generic of Aricept since the middle of last year.

He has significant tremors now but he was diagnosed with Alzheimer's and the neurologist ruled out Lewey Body and Parkinsons.

He is obsessed with our chickens and taking the garbage out.  Basically harmless so I let it go.  (Tip: Buy stock in Hefty!) 

His deterioration has been steady, and he not only continues with obsessions, but he is hallucinating several times each day now.  At first, he knew the people he was seeing weren't real.  He called them "spirits".  I told him that I will call them "daydreams".  Today he was less accepting of all that.  He told me that someone was drilling holes in our walls.  I tried what had worked before, saying he was daydreaming.  He wouldn't buy that this time.  He wanted me to get them to stop.  I played along and told them to stop, pack up their stuff and leave.  That didn't work.  Then he told me that someone came and carried off our chimney and now our fireplace won't work.  I told him that someone came and cleaned it (like 9 months ago) and that we can use our fireplace.  He also wouldn't believe that.  Then he asked me what I was hiding from him.  I told him nothing.  I tried distraction, but that didn't work this time either.

He has trouble hearing and even before didn't want to put his hearing aids in.  He is talking very "soft" so I have to ask him to repeat himself and when he does, he doesn't increase the volume, so I have to ask again.  He then gets mad at me and refuses to communicate.  He wants to help but he has trouble following any directions, of course, then gets mad and acts passive aggressively toward me.

He did wander off a couple months ago, after one of his hallucinations, got off the path, got lost in the woods, fell numerous times and hit his head on rocks/boulders several times.  I got a neighbor to go look for him as it got dark and he had been gone far too long.  (Went to ER but released after getting bandaged up.)  

I have ADT so I can alarm my doors if it comes down to it, but so far that seems to have been an isolated incident.

Even though I used to rely on him to help me to keep house, the VA isn't approving in home care since he has me to rely on for dressing, showering, meds and other things.  

I would greatly appreciate any advice / suggestions you have for me, especially if any of you have had to deal with a spouse that "never emotionally grew up" before dementia aflicted them.

GA-Mom

I am sorry to hear your husband is having delusions. Bless you for taking care of him.

When my husband started doing that, and talking to people who weren't there, and then wandering around the house at night sometimes naked, I knew it wasn't safe anymore to have him at home. I didn't fear him exactly, but I worried he would wander out of the house or lash out at something that wasn't there.

If possible, please consider that this might be the time to place him in a memory care home. I had to do this with my husband, and it was none too soon. He quickly became psychotic when I finally got him to the hospital for evaluation before going to the memory home. It took several days to get him on the proper medications. At the very least, please have your husband see a psychiatrist for evaluation, or a neurologist. 

Once my husband was not at home anymore, a wonderful peace descended over my home. Then I knew it was the right thing to do. He did well there until having an AFIB episode and he passed away shortly after. It seemed to all go downhill so quickly. 

M1

Slippednfell, I would call his docs right away tomorrow morning. Medications may help, these hallucinations are not pleasant for him either. I worry that he is expressing paranoia towards you, that could escalate quickly and you should keep your phone with you, remove any weapons, and identify a room you can lock. Call 911 if you need to, there are plenty of stories here of folks who need hospitalization for stabilization before placement. I’m glad he has VA benefits.

JJAz

Lewy Body Dementia is not a diagnosis that can be ruled out permanently.  It is something that can be diagnosed as the symptoms add up and accumulated over time.  You have described significant indicators of LBD

1. tremors
2. hallucinations before late stage dementia
3. quiet talking

It may be worth discussing with the neurologist if any of these symptoms occurred since ruling out LBD.

slippednfell

Thank you all for your input, suggestions and information!  I appreciate y'all!

I will be contacting his doctor ASAP.  I wasn't aware that Lewey Body Dementia could develop.  His neuro-psych test results stated to "rule LBD out" and the neurologist said he didn't have it so I was under the false impression that we were in the clear from it.  I will point out those symptoms as well as address his meds when I call this morning.

What a crazy journey for him and what a learning experience this has been for me.

Dementia is a sad, sad thing but I am thankful that we can all learn and grow from each other's experiences.

GA-Mom

My husband didn't have Lewy-Bodies and he still became delusional and paranoid. He was sure the neighbors were stealing from us.

JulieB46

My husband has hallucinations all day now and they are trying to get his meds right. He talks quietly because, “he doesn’t want those people to hear us”. He also gets angry with me if I talk too loud. Fun times.

slippednfell

Update:  I spoke with the neurologist and he doubled the donepezil and added memantine, twice/day.  Before we got the memantine, I doubled the donepezil.  DH had one of his childish tantrums and refused to take his meds... He hasn't taken them since Sunday.  

What I noticed:  He hasn't had hallucinations in days.  He also doesn't have the delusions he was having and he hasn't obsessed in a while.  I think the tremors have relented a bit but I have to pay closer attention to them as all this only just occurred to me last night.

I am not going to give him donepezil anymore and I am not going to start him on the new drug either.  

What was supposed to slow the rate of deterioration had only succeeded in speeding it up.

*** I am NOT AT ALL recommending anyone else stop meds.  There may be a reason these meds are affecting DH badly and may not be the case for your loved ones.  Consult your doctor if you think you need or want to. ***

Rick4407

Hello Slipped,  Arkansas has 2 VA nursing homes, the one in N. Little Rock has good reviews.  It is a "small home" variety with several individual homes each housing about a dozen residents.  Below is a link.  You may want to talk to the VA about getting him on the waiting list for placement.  In KY there is a waiting list.

My DW had lots of delusions, a light dose seroquel did wonders at reducing them.  

http://www.veterans.arkansas.gov/homes/ASVH-NLR  

Rick

DrinaJGB

My DH recently was taken off Aricept for excessive salivation (which he already had) to the point I was worried he was going to aspirate and get pneumonia again. He also peed like a racehorse. I have noticed no decline in his cognition since he was taken off.

BTW--Hearing loss greatly increases dementia symptoms, so it might help if he put the hearing aid back on.

Memphisdee

My DH IS obsessed with trash and the dishes. I’m gonna start doing the dishwasher. We had his bro and wife this weekend and he couldn’t move his stufff from our 2nd bathroom before they came so I had them share his bathroom with him. Then last night he had an accident and was afraid they knew and was worried about their sleeping arrangements. Anyway for the first time he stayed up til 12 as he was worried about not have anymore jeans which he did. Never had him stay up later than his bedtime. Guess company is too stressful for him.  I’m calling his neurologist and psychiatrist Monday.  We are getting some delusions but not hallucinations. His bro and wife were shocked at his deterioration. It’s just all so sad!  Our SIL put on nest which tells me every time a door is opened on my phone but he mostly shadows and criticizes me. It’s not very expensive and no contract.

Memphisdee

Today won’t take meds or eat. Call into dr

Tallulah Blue

I hope you found the help you needed. Your story is so similar to ours. My DH was put on Risperadol and that stopped the hallucinations. It’s so difficult but you are doing the right thing to keep trying. I was told last week that I will know when it’s time for memory care. I hope you will too. Take care of yourself.

KevinMc

Hi slippednfell.  I too have experimented with the donepezil my DW was taking  What I found is that I could not find a direct relationship with behavior and whether or not she was taking it.  I think part of that is there is a lag in cause and effect.  Consequently, I would attribute random changes in behavior to changes I made.  Ultimately, I quit fiddling with it.  I did read a study where removing a patient from donepezil increased agitation.  That was enough for me.  

Now, one thing I did find that helped with agitation and (I think) delusions, is melatonin at bed time (10 mg).  This, I think is really just the result of better sleep.  I did find a study that was done that had that same result.  I mentioned that to my DW's neurologist and he said that melatonin indeed can help sun-downing and delusions - although it can be hit and miss.  

Caring4two

Aricept (Donepizil) and Namenda (memantine) are meds given for Alzheimer’s. All too frequently, the diagnosis originally given is incorrect. There are multiple types of dementia, Lewy body and FTD (frontal temporal dementia) for example that do not respond well to these drugs. Without a complete neuro work up, (spinal tap included and MRI and tests for TDP 43 pathology, it’s very difficult to diagnose accurately. So the doctors try these meds to see if they do anything and are tolerated. 

My husband was part of a research program at Northwestern University Medical school and had all these tests plus a brain autopsy at death. There was SO much disease going on in his brain that we didn’t know about.

When he started having tremors, the Dr added Depakote sprinkles and that seemed to help. Just a thought. Treating this disease is not an exact science. The pathologist told me that over 60% of the autopsied brains they get are usually a mix of different types of dementia causes. Very few are pure Alzheimer’s. You just have to try and treat the presenting symptoms at the time. They will change over the course of this disease. My husband was on the Exelon patch and Namenda for three years. Then we added the depakote. Toward the end we also added some of the psychiatric meds to control behavior. 

Caring4two

 Aricept (Donepizil) and Namenda (memantine) are meds given for Alzheimer’s. All too frequently, the diagnosis originally given is incorrect. There are multiple types of dementia, Lewy body and FTD (frontal temporal dementia) for example that do not respond well to these drugs. Without a complete neuro work up, (spinal tap included and MRI and tests for TDP 43 pathology, it’s very difficult to diagnose accurately. So the doctors try these meds to see if they do anything and are tolerated. 

My husband was part of a research program at Northwestern University Medical school and had all these tests plus a brain autopsy at death. There was SO much disease going on in his brain that we didn’t know about.

When he started having tremors, the Dr added Depakote sprinkles and that seemed to help. Just a thought. Treating this disease is not an exact science. The pathologist told me that over 60% of the autopsied brains they get are usually a mix of different types of dementia causes. Very few are pure Alzheimer’s. You just have to try and treat the presenting symptoms at the time. They will change over the course of this disease. My husband was on the Exelon patch and Namenda for three years. Then we added the depakote. Toward the end we also added some of the psychiatric meds to control behavior. He died in June of 2017.

Memphisdee

Thank you tallulah blu. Did I spell that right?  It’s an ongoing challenge.

Memphisdee

What stage do u think he is?

slippednfell

Sorry for my absence.

The four days he didn't take his meds, he was doing pretty well.  Then he started taking his meds without the Aricept and everything came back.  Tremors, hallucinations, etc.  I put him back on the Aricept and started the new med Namedma, I believe.  I've come to the conclusion that it is a matter of playing russian roulette with drugs to figure it out and, much like KevinMC, I don't think I would be doing him any favors messing with his meds.  

DrinaJGB:  I didn't know that about the hearing... he really wasn't good at wearing them before his diagnosis... I will see what I can do about convincing him to wear them.

Rick4407:  Thank you for the info.  I had called the home in LR to see what kind of waiting list we would be facing.  They had 8 beds open.  I have called both homes recently and left voicemail messages and neither were returned.  It is on my to do list to follow up with them.  I appreciate the info and the link.  There is a book called the 36 hour day... I haven't picked it up yet but I totally can relate to the title...

MemphisD:  It seems that any little change in their environment can throw them completely of balance.  I'm sorry that you're dealing with all that.  At this point, I just don't know what stage he might be in as he has spanned two different ones at one time.  I will have to look at the stages again and see where I would put him now.

Tallulah Blue:  Thank you and you as well.  His neurologist said since the hallucinations aren't upsetting for scary for him they would avoid adding another med.  I was told if they become more of a bad experience for him to let them know and they would put him on something.  

KevinMC:  I've had DH on Melatonin at bedtime for quite a while so perhaps this agitation never got a bad as it could get without it.  Still doesn't help him to not act out in his sleep (movements and talking), but picking my battles, that is on the bottom of the list.

bull dog:  Interesting... I didn't know that.  I keep thinking of the "soft talker" episode of Sinfield... I even found the episode on YouTube and played it for him so he could maybe understand how difficult it is for anyone to hear him.

Caring4two:  I am sorry for your loss.  I can understand that dementia is like a cocktail mixed a little different every time.  It is a darn shame though.  So difficult to treat (let alone find a cure for) when so inconsistent. 

You all have given some great insight and info for me to look into / think about / research.  I appreciate all of your input and wish you all well in your struggles with this disease.  ((hugs))