Relapse: Inevitable with Too Much Change?
It feels like we stepped into a time machine and it's 2005 once again . That was the last time Ben was admitted to the psych ward in this hospital. And now, we're back. I've gone from stone-faced shock (Friday) to tears of helplessness and grief (Saturday), to a determination to enjoy Fathers' Day despite the fact that Ben can't be with us (today). And now, with all distractions gone, it's early in the morning and I can't sleep. My head is spinning with all I must do tomorrow to try and bring Ben back to life again. If I can.
Logic tells me that my control is limited at best: this is Ben's journey, these are Ben's decisions. He has somehow managed to stop taking his meds again, and now it's as if the past six years of success - college classes, increased responsibility, full participation in family, and finally employment - are all in jeopardy.
But the mother in me is absolutely livid. What idiots decided that a mere two weeks after starting his new job, Ben should move out of the group home that has provided his structure, supervision and surrogate family for the past six years? In the middle of finals week in school? With very little time to find the right housing? And - this makes my blood boil - with absolutely no transitional services to ease this fragile soul into independent living?
And the Mommy in me? Ben doesn't really want to see me right now, as we disagree about his meds, so I'm giving us both the space we must take. So I go to his new apartment and clean it for four hours, dodging the roaches that invade the whole building - a fact Ben's supervisors never knew about. This I can do for him: arrange his books, do his laundry. It comforts me to mother him, alone.
And now, I lay awake planning what I will say tomorrow to his caseworkers, psychiatrist, and the head of this clueless program when we meet tomorrow. Mostly what I want to scream is this:
I told you this might happen! Why didn't you listen to us? Why don't you listen to the families, who have a wealth of knowledge about the person you are trying to help?
In our experience, watching Ben slowly return to a life he could finally be proud of again, what we call recovery (if you know of a better word, please share) has reinforced some of the things that formed its foundation.
Medical Treatment. The right meds, taken consistently, with caring supervision and emotional support.
[caption id="attachment_92" align="alignleft" width="150" caption="mental health clubhouse"][/caption]
Kaye, R. (2011, June 20). Relapse: Inevitable with Too Much Change?, HealthyPlace. Retrieved on 2022, June 30 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/06/relapse-inevitable-with-too-much-change
Author: Randye Kaye
I just wanted 2 say more as regarding an individual's choice.No matter how much u expect a person 2 behave after acquiring care,love,understanding and help,what finally happens rests with that individual making his/her own decisions(whether consciously or impulsively made).We have to accept the inevitable.
Thanks so much for sharing your story and insight, Deepak. I too agree that guilt is pointless- the only reason to look back to is learn from decisions, and see what could have been done differently to produce better results. You are right - we can't "indulge in guilt" - but we can learn if there is another possibility. Thanks so much for your comments. Randye
This morning I read your blog Randye, and I realized it was an older posting, but so timely even now. I pray that you and love ones are well. You are the voice that needs to be heard! God bless you. Family members should have the highest input when professional planning is underway for our love ones care. Yet so often, we are left out of the equation and directed to seek a separate recourse to get help for ourselves during this phase. This isolation leaves a strain between the support and relationships that is needed, thereby keeping everyone from healing as one. So sad. Just like your story benefits those of us who happen to google a site to get help, I pray that the health professionals who really want to help will read your blog and realize you are the key that is often missing, and that is why the door to our love one's success is often missed or shut for so long. Keep writing. It is true. This too will past because I am in this to win, and I know joy returns time and time again, when we hold on because WE are those lost keys soon to be found!
I 1 st experienced BP disorder when it was known as Manic depression in the 70's. The treatment of choice was Lithium & tri-cyclics at that time. During having 2 episodes of not more than 18 months during '75 and '86 i had remissions of more than 7 yrs & i thought that it would never recur.How naive? My last ongoing episode began in 1993 when the euphemism 'bipolar disorder' was considered ethically correct. SSRI's, dopamine & other neuro transmitter enhancing drugs were in use. Of course i also was treated with ECT.s a few times. However i experienced a noticeable respite in early 2010. During all this time , i can remember that every time that i emerged from the dreaded 'lows' into the ecstatic 'highs',i felt that the illness was not going to continue its vicious cycle. I often self-medicated(for lack of a better term) with alcohol mainly. The dire consequences were known to me but i did not want to be dependant on 'conventional medication' such as a cocktail of anti-convulsants,mood stabilisers & anti depressants which i still take, regularly & religiously(paradoxical). There are at least 5 different tablets taken twice daily in different doses.I hope i am not boring u with the specifics of my condition,but it is to illustrate the extent of my so-called 'experience' with this illness. Was it'kamikazi' behaviour or some sort of 'self inflicted punishment',that i indulged in 'no go areas',i still am not eager to know. The point is, finally the decision lies with the individual.The caregiver cannot indulge in guilt. The person providing support has to be brave and well. Take care.
Dr. Ferati, Your comment just made me cry - and I needed to. You make so much sense, and what you say is exactly what I'm trying to do as I advocate for my son and tell his case managers what mistakes were made, remind them not to repeat them as they "manage" other cases. I am trying to help others as I write these posts, and yet they help me too. And your final sentence of encouragement, that "the recovery of illness come behind relapse", I am taking to mean that it will cycle back again to recovery. That is what I need to hear at this time. Thank you. When I visit a very symptomatic Ben tonight at the hospital I will remind myself that "recovery will come again", and "this too shall pass." Thank you. Randye
However, the relapse of any mental disease is normal course to same. And the professional attendance, that should to come promptly, may to soften and postpone, as well, the relapse of illness. It couldn't to deviate this undesirable phenomenon. In this direction the assistance of social milieu (family bosom, workplace condition, socioeconomic status and so on) plays an important role. Hence, it should to devote close attention on these daily demands and necessities, in order to increase life abilities of respective patient. For all that, every person should to have got an optimal minimum of life skills to lead a healthy life. When it is in question the person with mental difficulties the efforts in this neglected issue have a crucial significance. It is OK that You noticed the mistakes in the management of the disease of your son, but the same should serve as lesson that in the future they didn't dare to repeat. As for encouragement, I like to add the recovery of illness come behind relapse.
My 21 year old daughter is getting her life together after being off meds for more than a year. This past year her husband left her because she was too
uncontrollable to live with and was not supportive when she was hospitalized for 5 times within the past year. Her husband's insurance company dropped her because she was no longer living with him. She knows that she needs a divorce but is not ready to make the move. The last hospital psychiatrist gave her a diagnosis of paranoid schizophrenia and is now on SSI. Her counselor says no more than one change at a time and that it takes 2 years to full recover. She struggles with voices that medications have not been able to take away. For now she is living with us. I am thankful everyday that she is able to participate in family conversations, do chores and that she has hope for a better tomorrow.
Ah, the stories we have to share. Thank you, Loreen. While we are going through this unexpected-though-always-possible relapse, I am comforted by the fact that while Ben was in his last recovery period (a miraculous six years of family involvement and progress toward accomplishment) I never once forgot to be grateful to have him with us, and avoided the "could have beens" most of the time. The miracle of ordinary conversation, absolutely. I wish you and your family all the best. Thanks for writing, Randye
I worked and retired from a state mental hospital. I saw many, many bipolar people. You can tell when they are relapsing by the fact that, "they don't need meds anymore." It's not that it may happen, it's when it's going to happen. I would have them in therapy with a good social worker once every week. That person can get to know the person and alert someone who has permission to talk with the social worker.
On another side, I worked for an environmental allergist. I believe that food sensitivities are the second biggest problem that bipolar and others have going on. I believe if the person eliminated the following 8 foods, they would show remarkable good changes, almost over night. Monday through Friday the person does not eat these foods. Then on the weekend they can add one thing back. Wait around and ask them during the weekend how they feel and what's going on. This is worth the difficulty because I believe this will produce never dreamed of results. Do not eat
all grains except spelt and amaranth
tomatoes and tomato products
dark drinks like coke
diary products - cheese, milk, yogart, etc
You will eat what's healthy and gradually loose weight too. You can have baked potatoes, rice, milk that isn't diary, protein, beef, chicken, fish but not shell fish, and other meats, You will also eat lots of green vegies, fresh and cooked. On the potatoes you must only put salt on it. You have to do a lot of planning and cooking ahead. There is a type of bread without wheat and the milk, so that adds to the choices. Put sugar free jelly on the toast or non-wheat bread.
Just my humble observations. Add diet and food control with what the doctor prescribes....
Very interesting, Judy - thanks for sharing the info
I just joined this site a wk ago, and I was moved by your story. I am not bipolar - I've had lifelong depression and was recently diagnosed w/PMDD as well but I resonated with much that you wrote, and I see that I've made some mistakes and done some things right. In Dec, I resigned my job at a church after the final straw from my abusive Pastor...I was depressed at the time, and this was probably a bad time to make such a decision, but now almost 6 months later, I can't imagine still working there, so I guess I made the right decision after all. Still, I plunged into suicidal ideation at the end of Jan - I was blessed that my last phone call I made was to a friend who came over immediately - cleaned my home, prayed w/me and basically took over for a few days until I could get some stability back. I was not left alone and I got thru it w/many people's help. In May I was prayed for & told my depression was gone...like an IDIOT I went off my meds, and of course, landed in another major depression along with PMDD - I'm still 'recovering' as I write this and in two days, I am moving back home to my mother's because being still unemployed, I can't afford where I'm living. I agree with what I read - people think that I should just 'go out there' and get a job. They tell me it's mind over matter - 'fake it 'til you make it', you name it, I've heard it. I still feel that if I get out of bed and dress and get out of my bedroom, I've accomplished something. The stress with this move is great. I am just plugging along, taking my meds, praying every day and reading my bible - don't really know what else to do. And my PMDD will start up around the time I move. I am concerned but my Dr. says I'm already at the maximum dose of both Prozac and Wellbutin, so I'm at the mercy of my cycle right now. Anyway, it has helped to read other people's stories. If you're a praying person, I'd appreciate the prayers, and I am praying for your son. Thanks for reading.
One of the most powerful things I learned when I became educated about mental illness is that when someone is recovering from a "break" they can't just "snap out of it." When I stopped expecting that from my son, our relationship improved a great deal. I learned that it's more exhausting to recover from a break than from a heart attack. You hang in there, know what you need, and do that. The fact that you're taking your meds and reaching out for support is huge. Brava!
I did read once that, while on meds, three things are helpful to enhance recovery, especially in mood disorders like depression: physical exercise, spend more time outside, socialize with others. Maybe, in manageable doses, these will help - you and your treatment team might come up with some ideas. Others may judge, but they have no clue. Stay close to those who are supportive and understand your challenges. Good thoughts going your way, and thanks for writing. I'm glad our story is of some comfort. I know both you and Ben will find you way back to a better place in your recovery journey. Relapse is unfortunately part of the road -- but know that I'm rooting for you!
i understand your frustration. completely. what's that joke, "patience is the ability to overcome the urge to choke the living s**t out of some a**h**e who desperately deserves it"? yes, something like that. hoping for the best for ben's recovery or regrouping or whatever you want to call it.
thanks for a much-needed laugh, Angela. and the empathy!
Randye, My heart goes out to you, I can feel your frustration and anger that I am all too familiar with. I know first hand how hard it its to finally feel like there is some stability, to have that taken away quickly when it took so much work to get there in the first place. I also find myself, during critical time, at my sons home doing the laundry, washing the many dishes, and everything in between. As strange as it seems, that's part of my healing, time by myself to think and to put some order in his hectic world. A time to put in order in my mind, the many phone calls, names of contacts, and how to start our fight to regain what we've lost.
Thank you so very much for sharing your story. I look forward to reading your blogs and find much comfort in the hope that you share.
Take care, will be saying a prayer for both of you.
Thank you Dale. It is strangely healing, and you described my feelings exactly. Here is my current mantra during this time of relapse: "I know Ben will come back to us again; I'm just not sure exactly when or how." As with all things, I'm doing all I can and then letting go of what I must, allow others to play their roles. (Just as long as those "others" on the team are people I trust and respect. This was not the case with his transition team, so I went over their heads to the top. Now he is in good hands, and it's one day at a time until the next action to take.)
I miss him, though - the person he was a mere week ago. So all those prayers are most welcome. My thanks.
I am so sorry the system basically failed your son. As a former social worker, I remember seeing these kind of things happen all the time and often cause my clients to stop taking their medications or do something that landed them into the hospital. Moving him out of a stable living environment while he was working and in the middle of taking his finals was not a good move, and the amount of changes he went through would impact anyone. Independent living requires transition and preparation, neither of which it sounds like your son received. He sounds like quite a strong person to do all the things he does and I'm sure you are proud of him!
Also, as a person in recovery from an eating disorder (I write HealthyPlace's "Surviving ED"), I can sympathize with how these changes must have overwhelmed him and perhaps his refusal to take his medications was his way of taking control of *something* while everything around him was changing so quickly. I know during times of stress and change, I find it harder to eat and stick with recovery. I really hope his treatment team has learned from this experience and will not make the same mistakes twice. I am glad to hear his job won't be jeopardized and I'm sure the gains he has made will help him recover from this relapse.
My prayers go out for all of you!
Angela, thank you so much. You have summed it up perfectly - and I hope that, somehow, we can get Ben back to where he can continue the life he worked so hard to build. Right now, he's refusing the meds that help him - so we have lots of work to do, on so many fronts. Thanks so much for your wisdom and your support.
Oh, I'm well aware of the links between schizophrenia and bipolar. I've never explicitly written a whole article about it but I mention it now and then. And while there are links, manifestations and cognitive difficulties differ.
I'm glad I could help! Sometimes just a few words can be the thing that pushes us through a really difficult situation.
re your remark that bipolar isn't schizophrenia, here's what scientist Richard Bentall has to say:
Statistical analyses of symptoms show, however, that they do not cluster in
the way Kraepelin imagined. In fact, very soon after schizophrenia and
bipolar disorder became widely accepted as diagnoses, it became apparent
that many patients experience both types of symptoms.
Recent studies by molecular geneticists have reinforced the emerging
consensus that schizophrenia and bipolar disorder are overlapping
conditions. No important genes or gene clusters "for" either disease have
ever been found. The best it gets is that defects in the actions of some
genes - for example, neuregulin-1 or dysbindin - seem to slightly increase
the risk of suffering from symptoms associated with both conditions.
Another challenge is that the dividing line between psychosis and normal
functioning has become increasingly fuzzy.http://www.health-forums.com/alt-support-schizophrenia/new-scientist-richard-bentall-schi…
I am going through quite a lot right now. Newly divorced, moving to my son's house due no income and home being foreclosed, turned down for disability and ssi, no medicaid, and everyone believes a job is the answer to all my problems! I was finally diagnosed with bipolar and severe depression in January. I was hospitalized in November for Suicidal thoughs and in Dec. for attempted suicide. I also attempted suicide in Feb, of 2010, but was not hospitalized even though my dr. knew about it. I was doing o.k., but right now I can't seem to get myself going on what I need to do to move. I can't get organized even though I know this will be a good thing. A job scares the heck out of me!
wow, Kim - that is quite a lot to go through. Sure, having a job helps - but only when you are well enough to succeed at it. So many don't realize that there is a physical as well as emotional recovery process in mental illness and it can't be rushed. I hope your son has taken Family-to-Family from NAMI - that's what helped me understand why I needed to be patient with my son. And I hope you have good emotional support as well - providers? Peer support? Hand in there, and thanks so much for sharing your story here.
Hm. Well, in my experience, stress leads to relapse pretty much no matter what you do. Bipolar isn't schizophrenia, obviously, but I've never been able to get through change without extreme problems, even when the change was really positive.
When I ended up in the hospital after starting a new job I just told them I was in the hospital. Which I was. No one needed to know why. My employer didn't have a problem with that even though I had only worked there for a couple of months.
I did come back though and hopefully the same will be said of you son. Setbacks suck, but they're not forever.
Natasha - thanks so much. I told my son's employer the same thing, and so far they are being great. I don't think he had a break at work, because they just said they miss him and to send their love. Now - if he will only agree to take his meds. Six years ago he finally did comply, but it took almost a month. I will repeat your works as a mantra:"Setbacks suck, but they're not forever." thank you!
In one of my blogs, we discussed using the word "reconstruction." One of my readers contributed this from his own blog:
"The person is at a later stage an adult. They cannot "recover" to being a child which would be the time before the illness started. The cure itself is more than correcting initial problems. It has to also integrate a new personality in a now formed adult. So if the psyche is reformed and the personality is new then there can be absolutely nothing to which can be recovered. To recover indeed to any state pre-cure would mean to go back to a problematic state."
Really interesting perspective. Thanks, Rossa. Checking out your reader's blog now.
When I was hospitalized for the first time I told my employer or my husband told them that I have bipolar. Before that they didn't know, just like your son.
I wish you and Ben luck!