I feel so lost(1)

JoseyWales

I've become hesitant to share our journey here, because it seems so personal. But it always helps to share, and it can clarify my thoughts.

SO - here goes. 3 weeks ago I finally got DH in to a psychiatrist for medication. His PCP and neurologist refused to help with medication, and I've been trying to get help since early August. Really since May, but his PCP was helping a little back then. Let's just say, life around here is walking on eggshells and making sure I spend 100% of my attention on DH because if I don't, he gets really upset. It's exhausting, trying to avoid meltdowns.

The new psychiatrist suggested maybe we're dealing with pseudodementia. I was blindsided by that. DH is stage 6, with atrophy in his brain scans. A diagnosis of dementia, probably AZ was made 6 years ago. The psychiatrist put him on a new medication that he told me would definitely help DH sleep (because he really isn't) and would help with the delusions and anger. Call in 2 weeks if things aren't better.  He spent about 7 minutes with us. Then the medication wasn't called in to the pharmacy. I spent 2 days trying to straighten that mess out. For someone who just wants peace and sleep, it seemed like an eternity.

Things got better the first week, somewhat. A little less anxious during the day maybe, and he put up with DS in the house the one day that DS was here. 

But sleep never really got better. In fact there was a night he didn't fall asleep until 3:30 and several others when he slept 4-5 hours total in 1.5-2 hour bursts. And the crying has increased. The searching for his mom in the morning and wanting to go home has remained a constant.

Fast forward to Christmas day. DH went into a rage, kicked me out of the house, hit the door and gently pushed me. He was super angry when he pushed, but it wasn't a hard push. So there's that. 

I called yesterday morning to say the medication isn't working. They told me to stop all medication and we'd have to come in to see the psychiatrist again. First appointment available is Jan. 4. 

I explained it's going to be hell until then if I stop all medication. She said she was sorry. I was speaking with a phone nurse, who was just relaying a message from a doctor. She even took the time to ask the doctor if that's what they wanted to do, because the nurse thought maybe they'd have us continue the medication or give him a new one to help get through the next 8 days. Nope.

I go back to work Monday the 3rd. And now I have to take off the very next day. The person who's with DH on Monday's isn't the most patient, and she's the one that's had some trouble with DH's behavior. I won't be surprised if she calls me and I have to leave work again. AGAIN.

Placement is supposed to take place late January. Probably. I can't finish the paperwork for Medicaid because DH won't leave me alone to focus. 

I feel guilty about placing DH and looking forward to it so much. But if I can't get this medication figured out I just know they're going to kick him out.

Crushed

JoseyWales wrote:

Placement is supposed to take place late January. Probably. I can't finish the paperwork for Medicaid because DH won't leave me alone to focus. I feel guilty about placing DH and looking forward to it so much. But if I can't get this medication figured out I just know they're going to kick him out.

Don't feel guilty !!!!

Don't feel Guilty!!!!
 
Do I have your attention NOW 

Do you dig me Jackson!!!

And no if its a medicaid nursing home  they can't "kick him out" 

You need an eldercare lawyer yesterday  
 
All I can think of is "hell is coming to Breakfast"  Get help Stay strong

https://www.youtube.com/watch?v=e63Tk-5UKPc&ab_channel=catlord18

 

Ed1937

Josey, I'm so sorry. You have had a lot going on for a long time. Maybe you should make plans now in case something gets out of hand before you can actually get help. Are you still doing pretty well with Covid?

abc123

Dear Josey, I am so sorry the meds are not working. This is a terrible situation for you and him. Have you taken a couple of short video clips of him during a meltdown to share with the psychiatrist? Is there a geri psyc unit near you? Please stay safe! Cell phone charged, a safe room with a good lock, phone charger in the safe room. A plan to get to the car if you have to leave quickly. A change of clothes in the car. 

I have spent the last two weeks walking around in a slush of guilt. It hasn't done one single thing to help my parents or me. Guilt is a useless beast. 

jfkoc

Neither the PCP nor the neurologist handled behavioral drugs for my husband. He was sent to a psyciatrist and he spent little time with my husband. They are the experts is this kind of drug management and I imagine that after reading your husbands records she/he knew what drug to try. Curious, what did they give him?

Please go to a site like drug.com and check for side effects and interactions for all meds including OTC. 

In the meantime follow all safety rules and do your best to keep things calm. No discussions and a lot of agreeing will help.

Please keep  us in the loop and let us know how you and he are doing. Your journey is personal but it is unlikely that you are going to have something to share that has not been discussed here...more than once. It helps to get it "out" too.

June45

Oh Josey, this is awful what you are up against.  I know it is easier said than done, but try to get that Medicaid paperwork done and get him out the door. No guilt...you are in an unsustainable situation. Take your life back; you are too young for this.

Mint

Josey have been wondering about you.  Sorry you both are having to go thru this.  Assuming you are getting thru Covid by your post.  Hope I am right. 

Take care

French

 Josey, I hope you stay safe until the placement. I worry about you.

 You've already done a lot, there's no need to feel guilty. Compared to me, you've already come a long way. Your safety and also health first now.

M1

Josey, holiday stuff like this is always difficult; they are hoping you'll take no for an answer.  Don't; you are risking your life and health as well as his.  If things deteriorate, call 911 and have him taken to the Emergency Room.  Refuse to take him home.  He may need psych admission anyway to get his medications straight before placement is feasible anyway; then after psych stay he could be placed directly.  In all honesty that's probably what needs to happen.  I would ask the psychiatrist what facility he/she admits to, and if he/she only does outpatient work, where they would recommend admission, and have him taken there.  Enough is enough.  Do it now, and then you can go back to school next week knowing that he is cared for.  Truly, that's they way this needs to go.

Marie58

Josey, I'm sorry this is all happening. You got some good advice from others. Stay safe. You're in my prayers.

JoseyWales

Thanks everyone. I appreciate this forum for sharing - I don't share most of this with people in real life because they just don't understand. I'm also sick of trying to play it all off as ok in real life, but complaining to people I know isn't very helpful. 

Crushed - it's good to know they can't kick him out. He does well around others and I'm not that worried about these behaviors at placement at first. I think he'll like having people around. Once he settles in is when I'm worried.

To answer a few questions - I have a elder care lawyer, one of the best in this part of the state. Not the cheapest, but the cheaper one I started with gave me bad advice. Luckily I wasn't out any money with her, and this new one really knows what he's doing. Financially, I'm prepared. Legally, I'm prepared.

Covid - if I hadn't lost my sense of smell, I'd never have known that's what I had. It was like a mild cold. DH tested positive, but never had a fever and only had a runny nose 2 days. It was easier to get over than all the other colds I've had this school year.

Safety - I always have my phone on me, and I keep my purse in the car. 

There are no geripsychs in my area. There's 1 behavior hospital that I know of, but I already tried getting him there through the ER a few months ago. I'm willing to call 911 if it comes to that. I just keep thinking it's only 1 more month.

Quilting brings calm

Josey 

Please don’t feel awkward or guilty discussing your situation here.  That’s why we are all here.  The anonymity we get here with a screen name and a photo/no photo means you could stand next to me in a grocery store and I wouldn’t know you unless we agreed to meet there. So we do our best to be honest and complete here and in return we get support and advice.

I remember my introduction to my moms journey.  First the doctors brushing it off. Then using a recent move as the problem, ignoring our input.  Then just shrugging their  shoulders and acting as if we should just go home and deal.  When mom seemed to have gone from forgetful to stage 6 in a few weeks.  Wandered out of their new apartment to a strangers door. Home health said she needed to go to a nursing home but no one would help with that. 

As you may know- I only got actual help by moving her to our home state and taking her directly to the hospital and REFUSING to take her home.  I told them in detail and emotionally how she was a danger to herself. ( opened the car door at highway speed because she wanted to take the dog for a walk).  I kept telling them everyday that I could not care for her and that she could not come home  with me. They put her in rehab. Again I said she could  not go home to me. Rehab only released   her when a room at  a facility was ready.  I don’t know if that  approach will work with a spouse as opposed to a mom - but it’s what you need to do

We are here for you. 

Iris L.

After all these years it is so very disappointing that there is no help for this couple!  They shouldn't have to wait until Jan 4th, they need help now!  I am very upset!  But I know primary doctors don't know how to approach these patients or what medications they might prescribe.  And geriatric specialists are few and far between, and many are quitting or retiring, not many new ones are entering the specialty.  When I entered medical school in the 1970s, there was a push to attract family doctors.  We need a national push to attract geriatric doctors!  There is a huge need but little will to supply the personnel.  That's my two cents.

Iris

Crushed

JoseyWales wrote:

Crushed - it's good to know they can't kick him out. He does well around others and I'm not that worried about these behaviors at placement at first. I think he'll like having people a

I'm not saying they don't try.  Nursing home operators have the morals of child molesters

Anything they can get away with MUST be legal.    

https://www.nytimes.com/2020/09/19/business/coronavirus-nursing-homes.html

LadyTexan

Dear Josey. 

I am so sorry that you are going through this. 

As you know, my husband has had highly problematic, agitated behavior in the past. Unfortunately, we only received help when the situation was very dire. Specifically, when DH was a danger to himself or someone else. The 1st time he ended up in the psych hospital is when he tried to punch a police officer. The 2nd time he ended up in the psych hospital was when he tried to set himself on fire. I hate that it takes something so extreme to get help. It seems the key phrase is that he is a danger to himself or someone else.

The first time DH threw me out of the house, when there were still weapons inside, I needed to retrieve my medication and requested a "mental health officer" to assist. Two patrol officers arrived. I waited for hours for the mental health officer that never showed. A social worker finally arrived. The patrol officers and the social worker saw that DH had a severely dislocated finger and knew there were weapons in the house and knew DH was fiercely angry with me but determined DH was not a danger to himself or others. I was dumbfounded and spent the next days staying in hotels. It was horrible. Adult protective services got involved but only aggravated an already bad situation. I felt so very alone and abandoned. And for whatever reason, I felt ashamed. I went to counselling to help me process what happened. The counselling helped a lot. 

People who are not on this path rarely (if ever) understand. 

I applaud you for your courage, your ability to remain level headed, your tenacity and the steps you have taken to stay safe. I am with you in spirit dear one. You are not alone.

dayn2nite2

Iris L. wrote:

After all these years it is so very disappointing that there is no help for this couple!  They shouldn't have to wait until Jan 4th, they need help now!  I am very upset!  But I know primary doctors don't know how to approach these patients or what medications they might prescribe.  And geriatric specialists are few and far between, and many are quitting or retiring, not many new ones are entering the specialty.  When I entered medical school in the 1970s, there was a push to attract family doctors.  We need a national push to attract geriatric doctors!  There is a huge need but little will to supply the personnel.  That's my two cents.

Iris

Iris, nobody wants to be a doctor anymore - for the most part medicine is run by insurance companies and giant healthcare/hospital systems.  My 45-year-old internal medicine physician walked away from medicine 6 months ago and I called in July or August to get in to another provider at the practice (so essentially I am an established patient) and the first appointment with anybody on any day was mid-October.

The pandemic changed people's priorities, the $ isn't worth all the aggravation anymore, doctors spend lots of time doing clerical work and covering their butts, the hospital system is on them constantly, the pay is mediocre.  You never hear a kid say they want to be a doctor when they grow up anymore.  Most older doctors are retiring now and even the younger ones like mine are "retiring" from medicine.

Paris20

Josey, I just want to repeat something I learned right here. If your husband becomes uncontrollable and threatens with violence, call 911. I understand your description because I’ve lived through much of it too. My husband also has meltdowns. His neurologist put him on Seroquel and it helps, but last week he had another explosion. He goes after me but mostly his aide. Her offer of help drives him to uncharted maniacal territory. He once pushed her out of the way while she was helping his unstable body up our staircase. While pushing her, he fell down the steps and took her with him. They were both OK but his verbal attacks are frightening because I fear physical follow-up one of these days. If that ever happens, 911 it will be.

Twin Mom

Just a note about nursing homes not being able to kick someone out.  They can and do kick people out in Texas.  If they are a danger to others in the nursing home they can kick them out.  They may send them to the ER to get rid of them immediately...and then refuse to take them back.  I would be very careful in finding out under what conditions that can happen in your state, and what your options are.  I was dumbfounded to find out that it can and does happen in our state.  About the only place that cannot kick them out is the state hospital in Texas from my understanding.  Which leads me to the point, if behavior is the reason for placement....why would it be in my best interest to place my DH other than to get a few days of respite.

Marta

Hi, Josey. I believe that you use the same healthcare system as I do. 

I took my husband to the ER and was able to admit him from there to the in-patient facility at Parkview on Randallia, where he had a two week stay, after which he was admitted to MC. 

Let me know if I can help. 

Jo C.

Dear Josey, I am truly sorry for what is happening and can understand how deeply stressful this situation must be. 

It will be difficult to find an accepting facility for the "new" patient until such time your husband's agitation and other behaviors have been addressed.   There is always a concern for staff and other patient safety.   While some facilities have had a practice not taking patients back from an ER when there are issues or Medicaid as payment; not all of them do that, even if Medicaid patients.  What can happen, is if the already admitted patient becomes a severe behavior problem; especially if a danger to staff and others, the patient is usually sent to the ER and taken back to the NH only after the cause of the behaviors have been addressed.   Sometimes, this means treating an infection; other times it may require a short term admission to a GeroPsych Unit. I have seen this happen many times over the years in my profession as Administrator of Patient Care Management in acute med centers.

Marta has written a kindly response.   She is a very experienced and respected Nurse Practitioner; her expertise in her chosen field is in Internal Medicine.   I think you can depend upon her to be of good assistance.

Please do let us know how you are; we will be thinking of you.

J.