How do I help my sister?

[Maya4nepal]

Okay, this is long, but in a nutshell my question is, now that my little sister has come out of her first episode of acute postpartum psychosis, what should we be doing to help her? How much space should we give her? And her husband? If she doesn't want to talk about it, is that normal and okay? Is there anything we can say to help her realize this is an illness outside her control, not a personal failure to be ashamed of? Is there anything we can say to help her accept she needs to be on medication for a while? I've done so much research and learned so much about the condition, I want to talk about it with her and help her, but she's unwilling to talk right now - and I think somewhat unwilling to accept her condition and treatment.

Here's the long version:

My intelligent, wonderful little sister (who is an R.N., tends to be somewhat sensitive or high anxiety in general, and likes to be in control) had her first baby 4 months ago, and showed clear signs of postpartum depression/anxiety afterward. It was apparent to everyone but her, but she would evade attempts to talk about it saying "I don't want to label it," "those are serious labels," "I just need to work on my anxiety levels and trusting God" etc. Her doctor noticed something was wrong, too, but she avoided treatment.

Then there was a snowball effect as high anxiety caused sleep deprivation and sleep deprivation caused high anxiety (I think). A month ago, others saw signs that she was becoming paranoid and drawing odd connections between things, but it wasn't totally obvious yet. Last Thursday, she began experiencing full-blown psychotic delusions (all persecutory in nature). She thought she was under surveillance, being poisoned, being watched, that her incredibly sweet and devoted husband was an enemy, that everyone was out to get her. The family took her to the hospital and, at the hospital, she was put in a 5150 (involuntary) hold but then released because she "snapped out of it" shortly after the hold began.

Back in her right mind for a few hours, she agreed to trust her family members and recognized that the delusions had been false. But then, in the middle of the night, they started again. By the next day, she was totally non-functioning with paranoid delusions. But, even in the middle of them, she agreed to trust us (we were able to coach her to just "let go" "trust" "remember you decided you would trust no matter what") and she DID! We were so impressed by her fortitude in the middle of that terror. We got her to go to the E.R. voluntarily with us. She was very delusional (the hospital was a terror camp run by communists, they were going to euthanize her, they were going to sterilize her, everything was terrifying and most of her delusions surrounded medical issues of various kinds. She was extremely adamant she did not want medication. She threw water at one nurse in terror about something or other).

Unfortunately, the doctor at the hospital, without telling ANYONE, put her on another 5150 hold - even though she was voluntarily complying at that point. We did not know this. We were told she was being transferred to another hospital with a mental health unit. I rode with her in the ambulance, holding her hand, helping her with deep breathing techniques, coaching her to "trust," "let go" "focus on the simple things" "focus on breathing." Somehow she powered through it and did not lose control despite her obviously sky-high anxiety and delusional levels.

Then, to our horror, the ambulance stopped at a locked, mixed-population mental health unit, where my sister was carted into a back room behind locked doors. They announced we could not follow and she would be unable to see us except 1 visiting hour per day, and unable to see her baby at all. We (the family) just about lost our minds with the agony of this. We had been the lifeline she was clinging to. Within minutes, not surprisingly, they had to forcibly sedate her. It was just heart-wrenching, especially after she had been doing so well trusting and complying despite every urge in her to the contrary. The pain of that experience is still very fresh.

Later that evening we got our "visiting hour." She was restless and anxious but heavily sedated. We helped her into bed and tried to sing her to sleep. That night was agony as we wondered how she was faring. But in the morning, it turned out she had slept and felt much better. She was still having paranoid delusions, but not so bad.

Over the weekend, she kept improving (even before she was medicated). Then they put her on Risperdal and Depakote Sprinkles. Ultimately, they discharged her to us this Tuesday. Supposedly she was going to immediately begin an IOP (intensive outpatient program) which Kaiser, the HMO here, is apparently not starting until Friday (tomorrow).

In the meantime, life has become suddenly and bizarrely normal. My parents are doing a one-week remodel of part of their house for my sister and her husband and baby to move into so they'll have extra support. And the baby is staying overnight with my mom so my sister can sleep at night. And her husband is staying home from work so she has someone with her 24-7.

But otherwise, it's like this never happened. She and her husband are acting that way, anyway. All the books I bought and read, all the psychiatrists/endocrinologists I contacted, all the resources and ideas, are going by the wayside. She is just focusing on sleep and time with her family right now. We are overjoyed that she seems more like herself (I didn't know if we'd ever see her back to herself again). There are no delusions, she just seems tired. So in a way this is all wonderful. But I would HATE for this to recur. And she's talking about getting back to breastfeeding (i.e., off the medication) soon. And I know she's pretty anti-medication and doesn't want to be labeled as having a mental illness. There are hints that she and her husband think this was just a sleep deprivation thing and nothing more. She has also indicated she's embarrassed or traumatized in a way that prevents her from talking about it. When someone says "how are you doing" she responds "let's talk about you, let's not focus on me." I'm hoping Kaiser will give her sound advice and she will be treatment compliant, but who knows. She's deflected every attempt to talk about it.

So, bottom line: Should I just be happy for her, sit back and give her space, hope the professionals at Kaiser say all the right things, and stop intervening? Or should we try to draw her out, and try to help her see this is a real illness that she should not be ashamed of? Did anyone else experience this? Did you just need space? What was able to help you with your denial? Or your feeling of embarrassment? Why can't she realized that it's as if she just had a heart attack from our perspective - we love her and want her to accept our help and our celebration of her recovery too?

Also, is it normal to expect she might get off medication soon (as she clearly expects) or is it closer to 12-18 months like I've read so often? Thank you so much in advance.

[emilygmo28]

Maya,

My suggestion for you is to check out postpartum.net for local resources to better help your sister. We also have a Warmline that she can call to talk to one of our volunteers for support. 1-800-944-4773.

[JoLou80]

This has so many similarities with what happened to me and how I felt. I was so ashamed and felt so guilty but I think the only thing that helped me was talking it through with my family. To be honest, the fact that I'd never heard of PP before meant that I didn't want to talk about it with other people at first. I thought it must be something I'd done wrong. Could you persuade her to have a look on here at other peoples' stories? That really helped me and it might help her see that it's a real illness with real symptoms and nothing to feel ashamed of. Otherwise, maybe give her some time and hopefully eventually she will deal with it in her own way, be it on her own, or by talking it through with her family. I came off medication after 2 weeks with no recurring symptoms, so if she feels ready and if the professionals agree, there should hopefully be no problem.

Interestingly, I too am a bit of a perfectionist, liking to be in control. I also like my sleep and went without any sleep for a whole week. My psychiatrist suggested these might have been among the contributing factors, as well as a hormone imbalance after birth.

I hope your sister continues to make good progress. She's lucky to have such a caring sister!

Take care,

Jo x

[Naomi_at_app Volunteer]

Hi maya

Sounds like you have all been through such an ordeal. Really glad you have found the forum. You and your family might find the APP recovery guide really helpful. It's something your sister could dip in to as and when she feels ready. Here's the link app-network.org/what-is-pp/...

I remember early on in my own recovery it took a while to accept that all the firm beliefs I had experienced were part of this illness called psychosis. For me it was a gradual process of understanding and coming to terms.

We are here for all the members of your family any time you need to talk.

Warm wishes

Naomi

[andrea_at_app Volunteer in reply to Naomi_at_app]

I agree, after such a traumatic experience it does take time & it seems to be a very gradual process of acceptance & understanding - some things are just too hard to face in the early days. Maya4nepal, it's wonderful that you're there for her & her husband, they'll need your ongoing support - I realise it's been so hard on you too. For me, in the early stages it was important to just feel & do 'normal' things & try to be just as you expected you'd be. Even if they're not ready to talk yet, you can help so much in practical ways - they might not say so at the time but just being there for them is what's important, it's great that you're doing that.

[dennypixie]

To my mind, letting her focus on sleep is great. IT is an immediate way to treat the problem. For me sleep is a massive trigger, in my mental well being, generally. Give them all space, but be ready to help. Get your resources together, keep them somewhere safe, and when your sister is ready, you can support her. I think for some people, the illness can be fleeting. The sleep thing and coming off the meds will be a really sure flashpoint, and she may relapse. For me becoming drug free was a difficult thing to achieve. I had to come off the meds much slower than advised, and I found that getting on to DHA supplements (at least 1000mg) per day really helped. IT may also appeal to your sister as it is well known to help in the brain development of the baby, via breastfeeding. And just really tell her that you are really impressed with how well she has dealt with it, and how much you love her, and be honest that it freaked you out a little, but that it's not her fault at all, and that if she needs you you are completely there for her. Perhaps write it down in a letter, so she has it to take in in her own time. Big Hugs.

xx

[andrea_at_app Volunteer in reply to dennypixie]

I agree Dennypixie, sleep & rest are so important & letting her focus on what she needs at the moment is good. For me the whole mania experience was physically exhausting. And yes, 'giving them space but being ready to help' is great support, especially early on. I think it's something that you have to play by ear & adjust the level of involvement at different times throughout recovery. Really lovely (& true!) to tell her that it's not her fault & that it's not happened because of anything she did or didn't do.

[Kat_at_APP Volunteer]

Hi Maya

First well done (massively!) to you and your family for all the support you've given your sister and her baby. She is so lucky to have you with her! I'm sorry she had to experience the locked ward, but great that she has recovered so quickly from the acute phase and is now an outpatient. Do push Kaiser for all the services your plan entitles you to. Emphasise to them how important early treatment is, in order to avoid an expensive inpatient stay.

On your sisters state of mind and longer term prognosis... None of us here can really say, sadly! It may be (and I hope this with all my heart) that her psychotic episode was short-lived and unlikely to reoccur. However from my own experience (where my first acute episode subsided with sleep) there IS a real danger of psychosis seeping back in. For me, I was readmitted just a few days later, with a much worse psychosis that took many weeks to resolve. I can only advise trying to talk with her as much as you can - not necessarily about her health, just general conversation may tell you how she is in respect to her "normal" self..

Best of luck!

Kathryn x

[Maya4nepal]

Thank you so much to all of you for these encouraging and incredibly useful responses! This means a lot to us all.

[lgreen]

wow Maya I was close to tears reading your story. I can relate to it so much. I suffered from PP 2 years ago after my second child. I was also in complete denial when I was poorly & because I initially refused help I deteriorated quuckly and went into acute mania, psychotic stage. I am very close to my sister who is 3 yrs my senior and shes always mothered me and looked after me. I completely pushed her away when I was seriously poorly I think because I was trying to deny I was so ill and she kept telling me and the doctors she was really worried how ill i was. From my experience only now 2 years later do I feel I have taken the blinkers off and I am ready to talk about what happened to me. I know my illness wasnt my fault but I still feel awful how terrible I treated my lived ones especially my sister as I know it made her ill worrying about me.

You are doing an amazing, loving thing as her sister, researching PP, getting advice & just being there for her. I think you are right to be concerned about coming off the meds too soon. I would not have thanked anyone for sayIng that when I was poorly but now from experience I can see theres no advantage in rushing coming off them.

Just continue being there for her. Try talking to her but be aware she might not be ready to face up to her illness yet so dont push it. Try to do everyday, ordInary things with her. I really hope she gets better soon. Also im not sure if you are aware but after PP mania theres a big risk of severe depression which also hit me which again is awful fir you all to see your lived ines so sad but medIcatIon will help with thIs. WIshIng you & your family all the best x

[Ellie_at_APP Partner]

Hi its really good to have you on the forum- and sounds like you're being such an amazing sister.

I don't have much more to add than what others have said, I think waiting for your sister to feel ready to receive information/advice etc about the illness is a good one. The small things are what mattered to me, a friend bringing us dinner so we didn't have to cook etc, practical things made a huge difference. Practically but also emotionally, I knew they were there for me if I needed, that I had support.

I hope her recovery goes well, and that she gets the support she needs.

Ellie