Sister has lost will to live, resisting food & drink - Part 2

I'm so very happy to know that we have been of help!! But, please do remember that your sister needs you, so take good care of yourself too!!

I think the health of the caregiver is so often overlooked, and yet, those that depend on that caregiver are sure depending on the health of the caregiver holding out!!

We will continue to be here as a part of your support group as well!

How wonderful that you were able to have a nicer day yesterday with your sister!! Congratulations!!

I do hope that the LLMD will be of some help for your sister - and for your Dad!

And please, do not let the feeling of needing to respond to each of us here add more stress to your day!! We all understand that you are overwhelmed and need support and ideas right now, and may not have the time to respond. Just posting a few words, and letting us know how things are going for your Dad and your sister is good for now!!

Best of luck today!

Trav- Thanks again for all of your support. I 'm so grateful you emailed me to check in--honestly I was so overwhelmed at that point, that I didn't have the strength to get on her and tell everyone about our deeper descent into misery. You really helped me get back on here, and I'm grateful I did so.

Girlie- Thanks again for sharing your personal experience with your father going through getting off of Ativan. It really helped to get your thoughts on this.


We still have a long way out of hell, but feel a little more hopeful that we might get there.

Right now, our biggest concern is in finding someone to help us get my sister out of this drug induced, withdrawal induced emotional nightmare. We'd like to find a few psychiatrists to consult with my parents and not require meeting with my sister (I'm not sure she would ever willingly leave the house right now--it would end up being another traumatic event at this point, b/c she's so miserable; plus, she doesn't really understand what's going on, in terms of doing off drugs/and the Ativan being part of the problem). But looking for a psychiatrist who can do this, plus has expertise in this area, might prove difficult.

We are going to do our best to keep my sister at home and out of the hospital. Though each day starts out miserably, with my sister usually refusing food and drink, so far, since the end of May we have been able to get enough in her to keep her alive.

As far as the tapering goes, we've noticed that the morning depression seems deeper (but maybe less agitation/anxiety). It's hard to make sense of what we are seeing. I'm starting to wonder whether that might be due to the nighttime dose drop of 1 pill to 3/4 (last week was the first week of that). Even though we are adding some in the am and afternoon, to deal w/possible withdrawal from the night before, I suppose her brain could still be adjusting each am to going down by 1/4.

I think, we are going to stick to the slowest tapering possible, which probably would be 1/8 every two weeks. Since we already dropped 1/4 last week (this is the start of our second week into it), we should probably stay at 3/4 at night for another couple of weeks and see if we get a settling of the am depression (even though we are adding daytime doses).

Honestly, we're not even worried about Lyme anymore--we feel we know what we need to do to get her out of it. Our greatest desire is to simply get her back and alleviate her emotional suffering.

Ugh--here's the latest: Parents just called from the LLMD, and father has no Lyme (guess that's a good thing, but we are left w/trying to figure out what's going on with his cognitive decline)

Okay, here's the big problem now. The LLMD said she cannot renew the prescription for my sister without seeing her. Please bear in mind that she gave my parents the prescription at an appointment my sister did not go to (at that point it was b/c of the watery diarrhea, plus the added issue of non-compliance/cooperation).

So, I'm a bit frustrated b/c she gave my parents this prescription for an addictive substance without my sister present, and never gave them the warning that it was extremely addictive and that she would not be able to renew it without seeing her--that would have made us think more than twice (we probably wouldn't have used it).

Anyway, that's it. Nothing we can do about it, other then try like hell to get my sisters there. I'm sure we will need more than we already have b/c we are planning a very slow taper. Now, I'm pretty sure that we have a couple of months worth (from the original) and the original was for .5, 4x/day, yet we have only been doing .5 once a day. Only problem is I'm pretty certain that my mother said that for some reason, the pharmacy only filled it at 1/2 the dose (so instead of giving us 30 days worth of 4x/day, she only got 30 days worth for 2x/day)

So, I guess we'll just have to plot this out. And before my mother was able to ask her for a referral for a psychiatrist who works with this, the LLMD switched focus back to my father. So, looks like we will have to find someone on our own.

God, what a hellish nightmare we created for ourselves and my sister by getting involved with psychotropic drugs. I will regret that decision for the rest of my life--it would have been worth it to simply endure that sleep deprivation.

Thanks. I'll keep my fingers crossed.

I'm absolutely scared and panicked again. But there's nothing we can do. We just have to find out way out of this. I looked in the phonebook, but psychiatrists names are listed without much else. I don't know how to find one that specializes in this. I guess we are going to have to make cold calls and see what we get.

Post Edited (LauraJK) : 9/26/2016 1:00:50 PM (GMT-6)

"I think, we are going to stick to the slowest tapering possible, which probably would be 1/8 every two weeks. Since we already dropped 1/4 last week (this is the start of our second week into it), we should probably stay at 3/4 at night for another couple of weeks and see if we get a settling of the am depression (even though we are adding daytime doses). "

Yes, I agree...stay at that dose for a couple more weeks.

You may need to stay at each 'drop' in dose for 4 weeks instead of 2. it will take longer, but it will be easier on her.

This thread is very very sad and I am reading it everyday and I restrained my self from commenting.
My younger sister, who suffered from bi-polar and personality disorder, years ago...many years ago....after her (failed) attempted suicide...told me on the phone, while laying on hospital bed half crippled..."I am so much better under the ground". I so wanted to tell her, "yes you are, I agree with you".....instead I played along like everyone and told her lies....no you are never better under the ground. Don't say these things!! I tried to comfort her. I just could not.
My sister is still alive....I have no clue what she is doing or where she is. It is best this way. I think.

For myself, many times with lyme (and with other minor trivial life stuff) I felt like I wanted not to be around....and find peace in darkness. But then I have few good days from lyme and I think I should stick around. Really it is all irrelevant to the rest of the people. It is all how we perceive ourself at the moment and not how others perceive us.
That cannot be changed.
The problem with a different illness and various overlapping ones, is that society and the world is weak and helpless....hopeless too and there is literally NOTHING that us people from the outside can do to relief someone from the pressure of being alive.. suffering.

If only our society would accept suicide or other more humane forms of life termination....it would be so much better IMO.

I wish for your sister to find peace in the best way possible.

Arterimix, the problem with OP's sister is that this distress is being caused by benzo withdrawal, which IS TEMPORARY although horrific. And she has lyme and coinfections which are treatable.

So I think we should focus on helping her sister to end the withdrawal process so she feels emotionally stable again and can do lyme treatment.

Well, things aren't going so well.

My mother called a couple of mental health hotlines for help and got directed back to our primary care who prescribed the Ativan (in this case, the LLMD, who was not interested in helping us find a way to get my sister off of it, or in even talking with us about the drug and what's going on) We called the LLMD again today to get a referral to a psychiatrist and got a recommendation for Dr. Bransfield.

Honestly, we're beyond desperate, but I'm also terrified of trusting another doctor again.

We'll keep trying to make calls to see if there is anyone else who can help us--we are really looking for someone who can help us get her off of this Ativan without adding new drugs. But maybe things are so far gone that that is no longer possible.

We are also starting to get scared that we may have to go to a hospital (though this is obviously the last thing we want to do). We have no idea what to expect, but I'm assuming that they will just add drugs and we may never get her normal self back. I don't even know what happens when you go to a hospital--do they just take over and do whatever they want, or do they have to clear it by you and get permission for administering any drugs.

I think my mother has some kind of contact at my sister's insurance plan (it's a weird thing, but they call and follow up and tried to help when we were figuring out what turned out to be Lyme). So, she's going to call tomorrow and see if they have some names for us.

And here's the latest situation. Last I posted, we tried a day of giving my sister 1/4 a pill in the morning and 1/4 in late afternoon (increasing overall dose by 1/2). The first day we did it, we didn't see magic, but we did see some calming and improvement. But the next day we tried, it didn't make much of a change. So we decided to stop doing that before she got addicted and locked in to a higher dose.

At this point, we are extremely scared of what's going on with the Ativan and don't want to do anything without professional help.

Our other concern is that we have too much going on. I'm sure we still have the cold-turkey withdrawal from Trazodone (from 8/2, 50 mg at night), which we had to do--there was clearly something very dangerous going on (we were worried about Serotonin syndrome, the watery diarrhea and seizures). Once we went off of that, there was lots of anxiety, agitation, and depression (but those were there during the month before we went off). Then a few nights later we added that Ativan for sleep. This was obviously a huge mistake--we were so overwhelmed at that point and not thinking straight, but now we have added another variable and it's hard to sort out what's causing what.

At first we didn't think anything about the Ativan, other than that it helped her get sleep. We assumed all the daytime emotionality was due to withdrawal from the Traz, and that it would eventually get better with time. But it's kind of clear to us that even before we started to taper down the Ativan, my sisters anxiety, depression, and agitation were deepening and getting worse.

Now that I have done more research into Ativan, I'm concerned that what we were seeing prior to tapering the Ativan is that my sister was actually experiencing side effects of the Ativan (like a deepening depression, which I just learned benzos can do). So, this is another reason I'm scared to up the overall dose and lengthen the time it's going to take us to get her off of this.

We are honestly beyond terrified. I think it makes sense to get a number of opinions about what to do--we are very afraid of trusting another MD.

Ironically, we actually have my sister's Lyme symptoms under much better control (she barely complains about them). I think the Buhner protocol was really helping us. But what was especially helpful was adding the ammonia sopping supplements (Jernigans CNS/PNS, hydroxyb12, Yucca, Lysine). Unfortunately, my sister cannot enjoy the reduction of her symptoms (which took us a whole year to accomplish), b/c she's deep in emotional hell b/c we made the mistake of getting involved with psychotropic drugs.

Post Edited (LauraJK) : 9/29/2016 5:13:54 PM (GMT-6)

You can see the Psychiatrist, but you don't need to put all your trust in him. Listen, and then decide if what he is recommending is something you want to do.

I know you want her off the Ativan as soon as possible...but if you do it quickly it will be too hard on her...and increase her psychological symptoms.

I hear you about not wanting another medication...but if you end up replacing the Ativan for Diazepam (Valium) - it may be the safer route for her...gentler. (If the Psychiatrist recommends that route)

I was talking to my husband about your situation...he works for the local health authority - Mental health and Substance Use. And, he said that he has seen it for not only alcohol withdrawal, but also ativan.

I'm so hoping the Psychiatrist will be a good one...and not one that thinks (Like my father's did) that you can just get off them...no problem...just stop taking them.
Keeping my fingers crossed for you and your family.

I hope, too that you can keep her at home...you have more control that way.

LauraJK said...
Jenny-

Thanks so much for your support--it really helps to hear from those who have family who have gone through this.


Girlie-

Thanks--I agree. We're going to go ahead and contact Dr. Bransfield, but we also want to find some other psychiatrists to get other opinions. And, yes, though we are terrified of the side effects of this drug and want it out of her as soon as possible, we are also concerned about going too fast. Right now we are regretting going down by 1/4. At first it seemed okay--last week we had calm at the end of every day. Monday, the day after the first drop, was the best day, with her being calm from 5 pm until bedtime. But this week has been rockier. We may have to go back up by 1/8 and go more slowly.

I wish there was a community mental health center in our area, but I haven't been able to find anything like that. Going forward, we are going to have to be more careful and not blindly trust anyone. We definitely want to keep her home with us.

I think going back up by 1/8 is a good idea. Have you looked into the water dilution method? Is it doable?

LauraJK-

I am so sorry you and your family are dealing with this. You are an angel being such a fantastic advocate and caregiver for your sister, she is so lucky to have you.

I wish I had advice, but I have zero experience with psychotropic drugs. Was she prescribed them for insomnia?

I believe she will pull through this. I know it's probably hard to feel that way when you are in the midst of all the pain and chaos.

Thank you for taking the time to keep us posted. There are a lot of very knowledgeable folks on here to help guide you through. I know I have learned a lot on this forum.