Another update from Josie

JoseyWales

My saga continues. Just thought I'd update.

Recap: in June DH's anxiety, delusions and paranoia creeped up. PCP gave him new medicine. It kind-of worked, meds were increased in July. DH became a walking zombie. PCP said take him off those meds, but I'm not going to help with medicine any more. And since you're considering placement we're not going to give you a referral to anyone. Doctor in MC will help.

So I called the neurologist. Got an appointment 2 weeks out with the PA. She wouldn't help with meds, but gave us a referral to a "crisis clinic".  And put in his electronic notes to go to the ER if there was a bigger problem and they could do in-patient and we could get help sooner.

"crisis clinic" appointment was 3 MONTHS out. Behaviors have continued, wakes up several times a night in a panic, panics during the day, behaviors getting worse at times. Last weekend I couldn't calm him down (3 weeks since seeing neurologist's PA). He wanted to go to the emergency room and was sure he was going to die. So I take him. Tell ER doctor what's going on, and this is what I was told to do.

ER doctor won't admit him in patient. He's not threatening suicide and not harming me. But tells me of another place we can get a sooner appointment for meds. ER doctor was very understanding, especially after I broke down crying He told me to call him back if I couldn't get an appointment. I called new place Monday morning - they're booked 10 weeks out. I called ER doctor. He called new place. They can't help. But they will get DH in for a counseling appointment in 10 days. So I have that appointment where I'm going to take all my documentation on his behaviors and tell her that life is miserable for both of us and we're wasting her time, but if she can get us into an appointment for meds it will be worth it. I don't expect much, except 2 more months of DH's anxiety, paranoia and anger.

M1

So sorry Josie.  I don't see how a counselling appointment is going to help.  Does the hospital you took him to have an inpatient psych unit?  If not, you may need to find one that does, and just refuse to take him home.  I know that sounds drastic, but it's probably called for.  It's ridiculous to have to escalate things to that level, but more times than not that's what it takes to get heard.  Again, so, so sorry.

DrinaJGB

Wow. Another sad example of the epic failure of our medical care system. So sorry you have to deal with this.

Ed1937

Josey, I'm so sorry. I think M1 is right on the money when he said "Does the hospital you took him to have an inpatient psych unit?  If not, you may need to find one that does, and just refuse to take him home.". You have to do whatever you have to do to protect your own mental and physical health, even if it means you'll have to drive several miles to get there. Please don't wait too long.

JoseyWales

Army_Vet - He's on an antidepressant. That's it.

No geriatricpsychs in my area.

There is a behavioral hospital within an hour's drive, which is what we consider local here.   The only way to be admitted that I know of is through the ER. Next time we go to the ER I know to say he's said he will kill himself. If it gets to that point, I will bend the truth enough so they think that.

Otherwise we wait 9 more weeks for his appointment. I keep telling myself, just a day at a time. The good news is that he's sleeping better, and my fitbit tells me I'm getting at least 7 hours of sleep a night. That's usually over a 9 hour period - I get up with him several times a night. He is almost always back to bed within 10 or 15 minutes. It takes me a bit to fall back asleep. But I think if I was to get a night's sleep alone I'd sleep 12 hours straight.

I had hoped placement would happen soon. But then I found out I had really bad advice from my elder care lawyer, and I've had to hire a new one. Bad news - it will take at least 2 months, probably 3, to financially be ready to place him. If it gets really bad I'll private pay. 

BUT I recently talked to a staff member from the facility I was going to place him in. Management changed last month. This staff member had recently quit, because of the new management. I let her talk a while, and she had no idea that I was considering placing my husband there. She said within the last few months the facility has really gone downhill, with many staff members quitting. The kitchen staff has completely changed over and she said the food is terrible. And they have a vaccine mandate that all staff members be vaccinated by November 1. My county has a 42% fully vaccinated rate. She said that tons of employees there weren't going to get vaccinated, and would be gone by Nov. 1. I already knew from my tour a few weeks ago that staffing was a problem, but that's going on at all facilities. So now I'm searching for a new placement. 

LadyTexan

Hi Josey. I am so sorry. This reminds me of the difficult time I had with DH in May. It was horrible. DH was agitated, angry, depressed, miserable and anxious. I could not fix it. I felt helpless AND I was miserable too. 

DH was off his meds for 10 days. He attempted suicide by pouring gasoline all over himself with the intent to set himself on fire.  It was horrible and scary and dangerous. Sadly, if it weren't for the suicide attempt, DH would not have ended up in the psych hospital. That's what is so crazy.

You have been proactive and tenacious trying to get your DH help. The behavioral healthcare system is inundating you with obstacles. The system is so backwards and so wrong. Its as if the system won't step in until a life threatening crisis occurs. 

My blood boils when I think about how the system is failing you and your husband. I am so very sorry that you are experiencing this unnecessary and unfortunately common nightmare.

May God be with you and comfort both you and your dear husband.

Joydean

Josey, did you try the VA er? I ask because my husband is Vet also. Last year his panic attacks got so bad he was saying he was going to kill his self. I had to call 911, finally got him in car and drove like a crazy person to Dallas Va ER. Because of Covid they would not let me in. They kept him for a week in psych ward. That’s the only way I was able to get help for him!  I’m so sorry you are having to go through this added hell! God bless you and your husband.

White Crane

Josey, I am so sorry you’re having to go through this. Sending hugs and holding you in prayer.

Newbernian

Dear Josey, Your story is all our worst nightmares.  We have an impossible task on our hands.  A job, we didn't sign up for. A job, we are not trained for. A job, we are not paid for (like getting paid for this would make a difference to any of us). A job, we can't get help with.

When I have times, when my usually dependable cognitive and memory skill,s fail me, I tell DH, you and I are in a race over whose mind is going to quit first. I hope it's mine because then you will have to care for me.  He still gets my warped sense of humor.

What I did want to tell you, Josey, is that anti-depressants aren't always benign.  I have been on every SSRI and SNRI that is out there.  I have suffered with depression since my early childhood.  I tell you this so you understand, I speak from first hand experience.  I started on Prozac 20mg. around 1990.  I had issues with insomnia worse than before I started. I had issues with a burning urethra which I never had prior to Prozac.  I figured out that the Prozac was increasing my anxiety, which was causing overactive bladder spasms, which then caused the burning in my urethra.  I told PCP at the time but he said that is not a listed side effect.  I make up my own list of side effects, since then. 

 My father was 7 years into a ALZ diagnosis.  There was no help then.  I told my Mother to ask my Dad's PCP to RX Prozac for Dad.  This was the first SSRI and only one out at that time.  I didn't grasp the significance of my discomfort was coming from the SSRI.  It was giving me emotional regulation.  Dad's PCP prescribed 20mg starting dose. Within 3 days I get a call from my Mom in the middle of the night, that Dad was having problems.  I get to their home to find my Dad climbing around the floor trying to pull up the carpet.  My husband and I take him to ER. We dropped him off and parked. Come back to hospital, have to wait over an hour before we next see Dad. He is in a patient room in a strait jacket. He is catatonic, I presume from extra meds administered at hosp.  He died 2 weeks later after being removed from life support.  He was, I'm guessing, maybe Stage 3. Death was a blessing for my Mom, who couldn't cope with Dad's disease.  Later read that starting dose for elderly should be 10mg.

I have found over the years that most of these drugs have caused some level of anxiety, more than I usually have, and may cause more problems going to sleep.  I am now taking generic Lexapro.  Typical starting dose is 20mg. I have taken myself down to 10mg.  20mg. kept me up at night.

I am not suggesting anyone should adjust dosage of spouse's meds.  I have never taken more than amount prescribed.  I will let Dr know if I have reduced dose and results are beneficial.  Maybe anti-depressant is helping your spouse and is at the right dose.  You were there to observe the positivity of drug when RX.  Sometimes these drugs may need an adj. over time.  Try talking to PCP and don't be afraid to challenge him/her in a non-belligerent manner. They are doing their best with an imperfect health system.  If we work together, we may be able to give our spouses a better quality of life.

Jo C.

I am so very sorry for what is happening and can certainly imagine the dreadful impact this is having on the quality of life for the both of you.

Sadly; as I learned early on, in order to advocate for a LO, sometimes one has to couch things in more dramatic terms.   Your deciding to inform the medical staff that your husband has expressed suicidal thoughts is understandable as that seems the only way to obtain assistance for him.  If using this, be sure to state that you had to hide all dangerous items such as knives, scissors, matches, medications, etc. 

Sometimes when we cannot obtain a Neurology or other specialist appointment, IF our primary care MD contacts the specialist and states that it is a severe case of this and that and an asap appointment is needed, then the specialist will accommodate that very quickly - I have had that happen several times.

Counseling will do nothing in such a situation; I am deeply sorry you have had to run hither and thither jumping through hoops trying to obtain appropriate help.   I guess I would be starting to contact my local congressman and other political offices trying to get their help; that too has worked for some people in order to obtain assistance.  They have staff who advocate for people in their district.   Just another idea option.

Let us know how you are and how things are going; I will be thinking of you.

J.

Lills

Hi Josie,

First, I would write to DH's PCP.  Maybe the idiot doesn't 'understand' the whole picture.  I would request in writing a review or increase in your DH's meds.  Then...I would CC an elder attorney at the end of the letter AND your congressman as per Jo's suggestion.  

This is all so very wrong--and I'm so sorry.