So now all this...

60 falcon

Recent times have not been good to us. For several months I've been trying to deal with my wife's delusions, hallucinations, anger, and agitation.  We've worked our way through some of the meds and different dosing levels with limited success and overall unacceptable results.

My goal had been to better manage her behavioral problems/symptoms prior to placing her in LTC. I was close to placement at the beginning of the year but that feel through when the facility denied her for "being too needy"... That's a whole different story.

A week ago she began new meds (Respiridone, Trazodone, and the Excelon patch) and the first three or so days where promising and pretty good. Then things began to turn for the bad. Friday was a rough day for her at daycare. She was mad all day, stuck one of the aides, and of course things at home were rough too.

Yesterday was downright ugly.  Mornings are usually a challenge for me to get her out of bed. Unless I physically slide her half out of bed, she'll stay in bed for hours. It's always a bit of a battle and I'll frequently allow her to stay in bed until mid or late morning.  With the idea of 'you have to pick your battles', I tolerate that. During this time she's usually talking to, arguing with and yelling at people who don't exist. And if course she does this while marinating in her urine that has overfilled her diaper and extra diaper pad. She's usually soaked from mid chest to her legs and smelling like a filthy truck stop urinal.

So yesterday I knew she had a BM as well. I get her up and out of bed to begin the clean up.  She was more verbally abusive and resistant to any of my efforts, more than usual.  I noticed she was very unsteady on her feet (like falling down unsteady of I wasn't hanging on the her), with some slurring of words.  By the time I had removed her soiled clothes, the verbal assault was legendary.  Much of her speech is senseless garbled words anyway but she can sure get her point across and cuss like a drunken sailor.  I got her showered and when I attempted to get her out of the tub I wanted her to sit on the toilet but she instead day on the edge of the tub. I figured ok, I've dressed her there many times before.  I was able to dress her but she absolutely refused to stand up and I wasn't ready to force her to stand.  I left her there with her pants and diaper around her knees while I went outside to smoke. Mistake.  I needed to take a moment to destress. While I was out side I heard a thump front inside and you can guess what had happened.  I found her in the bathtub after she had slid off or fallen backwards of the edge.  Somehow I was able to get her up and out of the tub without killing either of us.  She's no lightweight and I'm still amazed I succeeded.  She wasn't injured that I could tell.

Fast forward an hour or so and she's now laying on the living room floor after a slow sit and miss while I tried to get her into a chair. She's still cussing me out and arguing and yelling at people who aren't there. She actively resisted any and all of my efforts to help her get up. I couldn't lift her without hurting her out myself.

After an hour and a half I made the call for and ambulance ride to the ER to have her checked out and ultimately to have her admitted to a geriatric psych ward to deal with all this stuff.  I'm done. I'm at the end of my rope and the knot that I was hanging on to has broken.  

She was actively resisting the ambulance folks, people we both know, she was mildly physically aggressive with them and cussed them the whole time.  That continued at the ER.  She's physically ok.  They sedated her with halidol. I come to find out that no psych ward will accept her. Get this... Specifically because of the Alzheimer's and the fact that she didn't physically assault someone, at least not to the point of injuring someone.  I'm dumbfounded, pissed off and frustrated. What a broken f*cking system!*!!!  

I know this is going to lead to LTC, and that's what the ER doc says also. But he seemed to think that LTC is the next step....I disagreed and kept pushing for her to be admitted to a geriatric psych ward first to get her behaviors better manage.  I think he was on the same page as me when I left last night.

She was sedated and sleeping.  Their immediate plan is to keep her in the ER until Monday or later when people will begin to begin "helping" to figure out what to do next. She'll likely be sedated most of the time while she's in the ER.  Just absolutely dumfounded.

She's only 63, late stage 6.  We live in a rural area with limited nearby resources. None of my plans have worked out. I feel like a failure. I feel like I failed her. I view myself as a pretty strong person, but at this point I'm just broken.

Not enough sleep, need to get cleaned up, go back to the ER.  I wrote this just cuz. Not sure what else to say or ask for.

MaryG123

Oh what a terrible time you’ve had 60 falcon!  I’m so sorry you both have to go through this.  Please don’t blame yourself, as it’s the disease that’s to blame.  You are a rockstar!

terei

I hesitated to respond, but here goes.  My mom was admitted(without my agreement) to geri psych because the AL she was in said she was threatening to kill herself.  (Is there a hint in here for you?)

She was there for two weeks + I think they were able to help her behaviors with the right mix of drugs.

I feel so bad for you having to deal with your situation with little help from the medical community.   I think at this point you are probably a trigger for your wife’s behavior + she might do much better with other aides.    Not every behavior can be managed with fiblets + positive body language, as you have learned + hopefully her behavior will change over time or be modified with meds.

Hopefully she will be admitted to geri psych + on to a LT facility + you will both be much happier.  Best of luck

Joe C.

Falcon, You are not a failure! You have continued to care for your wife under circumstances that would crush many others, therefore you are a success. I know it may not feel this way but you have done your best by her. I am sorry you are dealing this and I hope you find the best way forward for both of you.

White Crane

Dear Falcon,  I'm so sorry this is happening to you and your DW and hope you can get her admitted to a geri psych ward for medication management.  You have tried so hard to keep her home and have been an awesome caregiver.  Please don't beat yourself up over this.  She needs help and you need a break and rest.  Praying for you and sending hugs.

Brenda

Just Bill

Hey Falcon this is a fight we cannot win. All we can do is fight right to the end. You have done that and you are not a failure. You are doing the best you can do with what you have to work with. Keep on fighting the good fight, tomorrow is a new day. A good meal and a nights sleep will get you ready for what the next day brings. I know these are just words and there is no cheering up in this situation, just stay in the fight you are doing great.

Sligo177

Dear Falcon,

You are extremely brave and strong, and your love for your DW is incredible!  You have not failed at a single thing, you have hung in there, in spite of nearly impossible hurdles.  I couldn't have done what you have done.  I echo what others have said.  Whatever you decide to do we support you.  Please, please take care of yourself. 

M1

Falcon, I am so sorry.  Like for TBE;  your mantra needs to just be that you cannot take care of her at home, period.  You feel threatened, she is combative, you cannot take care of her at home.  Don't stray from that.

dayn2nite2

Yes falcon, all the commotion yesterday and you forgot her threat to kill herself…

Hoot619

You have been doing the right things, but it just isn't working out like it should.  We have to remember we can't control people places and things 

   We try like hell to make things work and most of the time it doesn't happen. We have to remember she or he is not the person they use to be.  They are going back in time sometimes slowly most of the time quickly. 

  Your feelings are like I think what we are all going thru.Your not alone.  Sometimes it takes me darn near all day just to get DW's shirt on.  It's a darn* good thing that nobody has said a Caregiver's job is easy.  It is mostly unrewarding but ever so often a nice smile or I love you makes it worth it.  Hoot

June45

Oh my goodness Falcon. I have been wondering how you were doing, and now I know and it sounds beyond sustainable.  First of all, you are not a failure; you have not failed her; not even close.  You have been on what I would consider is an extremely tough journey without much help, with doors closing on you left and right.  I personally don't know how you have done it.  Please keep us posted on how it unfolds.

storycrafter

What you're dealing with is so incredibly difficult. Your wife's behavior reminds me that, for my husband and I, we're very fortunate a therapeutic level of meds works. (My dh takes 300 mg of Seroquel each day and without it we wouldn't be able to manage.) A geripsych eval sounds completely neccessary in your wife's case. I hope that will happen for you right away. May the medical staff make that happen!

jmlarue

Dementia with a side order of schizophrenia. There is no way any of us is prepared for or capable of dealing with this utter insanity. And, yet, here we are. I am in awe of both your abilities and your endurance dealing with this horrific behavior long-term. You have no reason to see yourself as a failure, unless you wish to blame yourself for not acting sooner to seek inpatient psychiatric treatment for your DW. You are absolutely right - this whole system of dementia caregiving is irretrievably broken when no one feels compelled too respond unless we utter the magic words, "he/she has threatened suicide." It is absolutely unconscionable to put the caregiver through this madness of experimentation with the administration and dosing of antipsychotic drugs when we are untrained and incapable of managing the often horrific effects.

I, too, have been through a hell week with DH's schizophrenic behavior worsening daily to the point of danger for myself and others. THAT is my failure. I chose to bring him home from the Psych Unit after only two weeks. Please don't make this hard to fix mistake with your DW. Go forward insisting that the only discharge you will accept is one that transports her directly to an appropriate long-term care facility. Your survival absolutely depends on it. I write this as I have been watching my DH on security camera rant and rage for an hour over his breakfast cereal and culminating in violently blowing his nose into the bowl. He is now sleeping sitting up with his head on the table. I finally feel safe to go back into the room.

I hope you'll accept the advice to get while the gettin' is good. I wish I had.

Jeff86

60 falcon, I literally shed tears reading your post.  I am so sorry for what you are going through.  I have endless admiration for the heroic caregiving you have done.  

Failure?  No.  Perish the thought.   You have been on this cruel unrelenting journey, solo, and it is time and then some that you had help with your travels.  Stay firm in your resolve to get your DW the help she needs and the assistance with caregiving that you need.  I admire your strength and persistence.  

jfkoc

It is sad that we feel as though we have failed when we measure success by something which is impossible. You are the total opposite of a failure!

Ed1937

Falcon, nobody in their right mind would think someone is a failure when they have what you have. You have gone way beyond what many people could hope to do. You have to get out of that kind of thinking. That will only drag you down. You, like many people here, are a hero.

Buggsroo

Falcon,

I think you have the best you possibly can do. You don’t deserve this, none of us caregivers deserve the flak we get dealing with a disease that takes no prisoners. I think you have done everything in your power to help your wife. You are human after all. Please do not accept her coming home, she needs to be cared for by professionals after all. 

JJAz

Falcon,

So sad to hear what you're going through.  If your DW is having hallucinations (not just delusions) it's important that she be evaluated for Lewy Body Dementia.  The fact that she had such dire response to Risperidone could also be an indicator of Lewy.  You can find out more about the diagnostic criteria of Lewy on   https://www.lbda.org/symptoms/ . 

 Why does it matter?  Lewy patients are particularly sensitive to many medications that are prescribed for dementia patients, and they can result in significant behavioral problems.

Good luck.

60 falcon

I'm so tired and physically and emotionally drained right now but need to write this to everyone here. Maybe I'll feel better by writing this out maybe someone can benefit from this.

I first want to say that over the years, when I've read all your posts, they have been like windows into the future for me. Scary, sad, infuriating, educational, etc. They are nearly all heartfelt, supportive, and caring. Sometimes even funny and happy.  Collectively you all feel like family to me. As my wife progresses the windows shed light on what's likely to come, until the days arrives when I experience the events first-hand.  At that point I can relate to all of you who've walked this horrid path before me.  Sadly over time I've come to be able to relate to so many of you. And I just don't know how we continue to fight. For those of you further along this path or who have lost your loved ones, you have my greatest respect and most sincere condolences. I never know what to say when someone passes away.

As I said earlier I left the ER last last with no concrete plans in place for my wife. I was pushing for a geriatric psych. And was told they wouldn't accept her.  The ER doc was attempting to find alternative options.  My wife remained in the ER and was sedated with halidol. Sp?  This morning I arrived at the ER and learned that my wife had been transferred and NOBODY called me or left a voicemail. A nurse handed me a hand written note with the name of the hospital, my wife's room number and a phone number. Talk about being pissed off.  I never gave consent and yes they had all the legal paperwork with me being her medical POA.  The same doc was still there and I point blank asked him how the F*ck can he transfer my wife, with severe dementia and greatly diminished abilities, to another facility 2.5 hrs away, without my consent or at least the common decency of calling to let me know?  He apologized profusely, many times over. 

She was transferred via ambulance and they administered versed (sp?) on the way..  she's at a regular hospital, in a regular room, with a regular hospitalist assigned as her doctor.  I spoke with the doc on the phone and questioned everything. I again pushed for geriatric psych.  Was told by her that in her 15 plus years working that she's never seen or heard of a dementia patient being admitted to geti psych.  I'm just dumbfounded.  They plan to involve neurology and or psychiatry. The only possible good thing is my wife's neurology doc is in the same healthcare system and right nextdoor.  The hospitalist said the plan is to find the meds or dosing to deal with her problems.  In who knows how long...I don't know..  I told this doc that if finding the right meds was so easily accomplished, my wife's problems would have been resolved months ago.  Their expectation that they can accomplish this in a few days is simply dreaming on their part.

So pissed off right now.  My wife was still more or less still knocked out from the versed when I left this afternoon.  Because she's been drugged and more or less sleeping, she's had no food or fluids since yesterday around 3p.m..  I was able to get her to eat most of a pb&j sandwich that I brought for her and she took a few sips of diet coke.  So pissed off.  The ER for some reason removed her DNR bracelet and I brought it with me to the hospital. I mentioned it to the nurse and told her I was putting it back on my wife's wrist.  They didn't even have a record of her being DNR even though this is the very same healthcare system that signed off on the DNR order. So pissed off.

I have more questions and concerns but have a hard time organizing my thoughts.

I know my wife is ultimately not coming home.  My house feels so empty. I'm an emotional wreck. Like I said before, I'm broken.  This all happen too unexpectedly and in a way I couldn't predict.  I never expected these emotions and how intense they are.  They come in waves and I can't stop them.  Almost debilitating sadness and this illogical and overwhelming feeling of being a complete failure.  I can't get past this feeling that I've let my wife down. I feel so incredibly lost and at the mercy of a healthcare system that for all practical purposes seems so inept and unprepared for what what kind of hell they are likely in for when the drugs clear my wife's body.  I may not be at fault for any of this, but I started this chain of events when I made the call for help. I did that. I started this and that's where I failed. 

And all the while my wife and I and our two sons will suffer.  

Sorry for rambling. There's more but this is already way too long.

Ed1937

Falcon, there's one thing we have to get right. YOU ARE NOT A FAILURE! When my wife passed away a little over a month ago, I had thoughts of "What if I'd just......" several times. But I know there is no positive at all with that kind of thinking. It can't change anything, and I loved her more than anything. How can I feel guilty? Sad, yes. Very sad. I'm typing this through tears, but no guilt.

June45

Falcon,
After your ordeal yesterday, I am surprised you survived to tell us about it.  I think my head would have exploded.  And I agree with Ed about second guessing our decisions, questioning whether we made the right or wrong decision. I went down that road with my husband (and I still do)...if only I hadn't placed him, then he wouldn't have broken his hip, then he wouldn't have been in pain and fear for the last 2 months of his life. But I know I had to place him. I was only getting 2 -3 hours of sleep every night and it was an unsustainable situation. You have been trying everything and having to fight to get help from medical professionals; you couldn't keep going on the way things were.  Yes, debilitating sadness says it all.  I have no cure for that.

dayn2nite2

Okay I know you have said you’ve pushed for geri-psych but there are magic words you must say - that she has stated she will kill herself, which due to her being drugged they have not heard.

DrinaJGB

You are so right. The medical system in this country is completely broken. After 12 years of dealing with this I can say that sentence with absolute certainty. So sorry you are having to deal with this completely horrific situation.

dj

Gig Harbor

You have not let your wife down. You have been holding her up but now you simply can’t do it alone. I agree that the health system is a mess but this is what I can say. I worked as an Ed charge nurse for over 30 years in busy EDs and I maybe had to find psych placement for dementia patients only a few times each year. We really didn’t get many patients with dementia coming in and then it was usually for a virus or UTI. Most of our psych admissions were for non-dementia psychotic episodes. The ED doctors don’t see dementia psychosis that often. Since you know you can’t care for her at home and that she will likely be stabilized can you spend the next couple of days finding a place for her of your choosing? That way you will be able to direct her placement. I hope you find her improved today.

M1

Falcon:  call the neurologist ASAP.  Surely they will be able to help connect her with geri psych.  And try to get in touch with the social worker/discharge planner asap.

I am so, so sorry, I know just what this feels like.