Anger

Iris L.

Iris L. wrote:

   Even in my area, a big metropolis, the police are now admitting that they do not have sufficient training to address the psychiatric patients.  

My city has decided to assemble a team of mental health workers to respond to calls for mental health issues, in people who are nonviolent and unarmed.  The team will consist of a supervisor, a crisis intervention specialist, a nurse, and a peer navigator. They will replace the police or other emergency responders.  This is a pilot program, they will see how it goes.

There was no mention of addressing the unique issues of PWDs.

Iris

Another Day

M1 and others - I miss him, the real him, not the broken one, the one whom I was totally comfortable laughing with, crying with. Oh God, I miss him so much. I've taken the necessary steps that I know are the correct ones, but inside of me I'm screaming NOOOOOOO. I've taken the right actions, but I feel so lost.

M1

Oh AD i truly understand your pain, it is a grievous wound and yet so necessary, it's the Hardest part of life. I wish i could tell you it gets easier but for me it has not, it's been an awful year since i was where you are now. I tell myself every day to have courage.

It does help to remember her in her heyday as the wonderful person she was. She did not shy away from difficulty and that helps me do the same. I try to do as i know she would want me to. I hope similar thinking will sustain you too.

Another Day

When I hand delivered the letter to the doctor's office day before yesterday, there was a new woman at the front desk and she did NOT want to take the envelope addressed to our doctor. She kept insisting that he will not fill out forms for patients. I thought fast, asked her when was it that is his birthday. She finally took the envelope, I smiled and thanked her. Whew, being she is new, she admitted that she didn't know when his birthday was. I hope "mission accomplished."

M1

Hmm, that doesn't bode well.  I would take another copy with you when you actually go for the appointment.  And hope to goodness he doesn't balk at going--be prepared that that my happen.  there's a lot of agreement to things that then changes when the rubber meets the road.  Have an excuse ready if he balks-such as, "they said you have to come or your insurance will default" or, 'it's now required by Medicare or they will drop your coverage."  or some such.

Another Day

M1 - That's good advice, thank you, will do. DH is in good boy mode at the moment, we've had "company" so to speak. I think I've mentioned a time or two that I talk to God a lot, He answered and we've had someone here and people in and out for just over a week now. Funny how that happens.

Another Day

Update - I have bloodwork and physical scheduled for DH. He's already back peddling on me, doesn't like the days scheduled, etc.  I'm at least making progress, I think.

Ed1937

I'm glad you seem to be making headway. Since he seems to be in "Good Boy Mode" when others are around, could you get someone to go to the doctor's office with you? Just a thought.

Phoenix1966

It sounds like he agreed to the visit to appease you in the moment, never really planning on following through. 

If you think he would fall for it, casually mention that the doctor said it was great timing coming in because of changes to your current insurance require a full physical to keep coverage. Tell him the doctor told you with the Covid-19 Public Health Emergency ending on May 11th, most telehealth options will end(which is true and your LO can verify by looking up online) and he’s been flooded with appointment requests, too. You wouldn’t be able to reschedule in time to meet your insurance “deadline”. 

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Another Day

Thanks for the good advice everyone. He's already back peddling. I expected that. I'm fairly certain that the doctor did get the note, thank God.....the give away is my DH is scheduled when this doctor doesn't usually have hours. He hasn't caught on to that yet. I'm ready though. I was thinking of telling him that the doctor is going on vacation and is trying to get all of his patients taken care of before. I'm on the fence as to whether or not I should go in with him for his physical. That's out of our norm. I will be seeing the doctor myself for a physical several days after, so I can still get whatever information. My thinking is to allow the one on one experience and allow the doctor to fully assess the situation as best he can. If I'm there in the room, DH may not open up about everything. I didn't make it this far without your input, I prayed, God gave me you.

M1

AD, do you have healthcare power of attorney for your husband?  Or signed HIPPA privileges?  Most offices are sticklers about this now and you will at least need HIPPA privileges for the doctor to be able to share information about your spouse with you.  Just checking, don't want you to run into more unanticiapted obstacles.  Don't assume you can get the information at your subsequent visit.  

You may need to follow the doctor's lead about how the visit goes.  You may not need to be in the exam room for the actual physical, but if at all possible you should like be there for the history and the assessment.  Your husband is not going to be a reliable historian--either to the doctor, or in reporting any parts of the visit to you.  

This is not easy, but you need to be assertive here or else it's not going to go like you want it to.  I still have doubts about whether any of this can be handled as an outpatient.  Doesn't sound like you have a strong previous relationship with this doc, which may also make it more difficult,.    

harshedbuzz

Another Day wrote:

My thinking is to allow the one on one experience and allow the doctor to fully assess the situation as best he can. If I'm there in the room, DH may not open up about everything. 

IME, you need to be strategic about this. You've done great delivering your note ahead of time, but you can't rely on your DH at this point to be an accurate reporter with the doctor or you. It's possible he has anosognosia and can't appreciate that he's had a cognitive decline and will tell the doc everything is hunky-dory. My dad always did. It's also possible that he will "showtime". This is when a PWD can hold it together and appear more with-it than they normally are for a doctor or non-caregiving relative. 

What I always did was sit in the seat behind dad (and mom) but in the sightline of the doctor. This allowed the doctor to have dad reply to his questions while glancing my way so I could verbally communicate whether what dad was saying was true or not. Dad told some crazy tale- dad claimed to golf daily; hadn't golfed in a decade. He always "lived rural"-- miles away from his neighbors; he grew up in Philadelphia and was living in a busy resort community when he came up with this one. 

My dad could be aggressive bordering on violent. Since he showtimed in the office so much for his geripsych to the degree the man was suspicious of my requests for an increase in his Seroquel, I made a video of recording of him threatening me and emailed it to the doctor. This enabled him to see what mom was really living with. 

Good luck-

HB

Another Day

I've thought about video/audio recording in the past, I think that may be the way I'll go. I also thought about a more lengthy note to the doctor, more details, more instances, something like a journal? Yes/ No? 

DH has been hedging with me and the doctor for some time now about a variety of things. The most worrisome one in my opinion is his daily headaches. DH is claiming that he's not having them every day, but I'm the one who does purchasing so I know the frequency of purchases and yes, he is too taking something for headaches daily. As I've said before, this disease is frustration, finely tuned. 

IF I actually get him to go through with this upcoming bloodwork then the visit to follow that a few days later, I believe we'll have some answers. This is the first time in a long time he's been willing to even discuss going to the doctor. 

M1 - I do have signed HIPPA privileges, yes to dual Power of Attorney, just checked. Unless they expire? We last updated in 2009. We've been with this doctor for over two decades. I still think I should write everything out for a variety of reasons. I also have a copy of the note you suggested I take "just in case." Anything else? 

M1

AD, I think my only other suggestion is to try to think ahead about what the possible outcomes are and what you want to have happen.   Assuming that you can get him there and that he consents to blood work---then what?  Are you hoping that he'll be--a) prescribed medication?  Do you think you could get him to take it?  b) referred to a specialist?  Do you think you could get him to go or to consent to further testing and cooperate with that as an outpatient?  c) hospitalized?  

You may want to think through these things.  The last thing you want to have happen is to take him, have him be angered by the experience and then take it out on you when you get home.  I would worry about that a good bit from what you've said.  Don't expect that the doc will be able to convince him or tell him his diagnosis. and there will be some "aha" moment after which he's cooperative.  I assumed that early in our journey and as I've related here many times, our doc just laughed at me.  

Twin Mom

I would also be afraid of the "fallout" on the way home or after reaching home. I would venture to say we have "fallout" from every single medical intervention or interaction...even when I think things have gone swimmingly well.  Our last appointment I asked the Dr. to call me after the appointment which he did and fortunately (or unfortunately from a different perspective) my DH did not catch that there was a followup call to be happening.  The flip side of it.  The followup conversation was documented in the written medical record, so if my DH wants me to show him the medical record available online...I will have to do some fancy footwork.

Another Day

M1 - My goal is to find out WHAT I'm dealing with. I can do so much more if I know the answer to that question. I guess my next step would be guided by the answer. Once I know what I'm dealing with, I can then begin some research into what can be done, can anything be done to reverse, slow down, ease the symptoms/lessen the severity or understand the progression and be ready for the following stage. I'm of the nature that if I understand something really well, I can probably deal with it. So far I just feel like I'm being blown around by an unknown force and I don't know what to do next. Information can be a good, I guess I'm looking for guidance, which way to turn. 

M1 & Twin Mom - I honestly had not thought about there being the potential for "fallout" afterwards. I'm going to have to think on this one. There shouldn't be anything just going to have blood drawn, right? I don't know, it's been awhile since he's been willing to go see a doctor for bloodwork and physical. So far he's willing with 'some' apprehensions. Thank you both, I do appreciate the heads up. 

I need time to think on this and perhaps plan. 

Ed1937

Another Day wrote:

I also thought about a more lengthy note to the doctor, more details, more instances, something like a journal? Yes/ No? 

AD, I think you should make sure you give him all the information you can without putting things that are not significant in there. The doctor needs the information, and he/she will appreciate it, but extra stuff will not be appreciated or needed. For example, he/she does not need to know that he slept well last night, and things were fine when you both sat down for a cup of coffee. But he/she does need to know that he threw that cup of coffee at you. I hope I'm getting my point across. Keep it short, while giving him all the info.

Twin Mom

The only "fallout" I've seen from blood draws is complaining about how inept the drawing place/person was etc.  I've also only ever discussed the blood draws in very broad strokes.  I do everything in as broad of strokes as possible.  However, I guess I have seen some "fallout" from the way he thought I "treated" him if I had to step in and intercede to explain something or correct information he may have given.  Honestly, most interactions we have with anyone I can get unexpected repercussions.  Fortunately, medication now controls the real ugliness...and I have learned to just cut things off and say I can't discuss (won't discuss), or oh I need to run to the bathroom and then we can talk about it.  That usually has him off to other thoughts.  I can also count on one hand the times he has been out publicly in the last 2 years.  I absolutely won't challenge him, and I do as much out of earshot as I can.

Right now I am secretly videotaping some of his behaviors and hiding the videos in a hidden storage file so that I can have documentation of the behaviors.  I have found pictures are the only way to go because he looks and acts stunningly well for very brief times when necessary.  I do believe now he couldn't have an interaction where he had to speak for more than 5 minutes that someone wouldn't totally get that he is seriously impaired.   I believe we only got a real diagnosis originally because I literally demanded that the Drs watch each and every video in my log (which they didn't want to).

Another Day

Ed1937 - I get what you're saying. I can do that, give the pertinent information and leave out the fluff. I edited the previous note to the doctor for that very reason and is why it was not lengthy. Thank you for the reminder though, it helps me to stay focused. 

Twin Mom - I think the fallout will come "if" we get a diagnosis. He's a pretty good showtimer. This coming Wednesday is his bloodwork, and the following Wednesday is his physical. I staggered our appointments on purpose so that I can hand off any additional information to the doctor. In case you're wondering about the "our appointments,"  I used the fact that "we" hadn't had physicals in some time. 

M1 - you mentioned history, Bingo, I need to remind the doctor about his accident 40 some years ago in which he suffered a very severe head injury....among other injuries, he died twice while the doctors were working on him. The possibilities of him having issues later in life is something we had some serious discussions about before we were married. I knew the risks. 

I'm going back through the comments, taking notes and compiling what all I need to share with the doctor. Video/audio taping is going to happen, for my well being as well as his. As I said previously, he's a good showtimer.