New and needing help

[astronaut]

Hi alwaysamom,

It sounds like your daughter has a great support team looking after her right now. I have also worked with a team of doctors (when I was in paediatrics though, not as an adult), and I have attended support groups and education sessions. I think that for me, the education sessions were the most helpful.
It is hard to hear but often healing takes a very long time. Bipolar (and eating disorders) are whole "being" illnesses or "states." These illnesses don't just cause physical, somatic pain and mental anguish but they carry all sorts of moral baggage with them and can disrupt our way of identifying ourselves and the world around us. It is hard to read a book and find adequate advice on what to say to ourselves and those we love suffering from mental illness in part because how we speak to one another and what we say varies depending on personality, state of mind and the type of relationship communicating people have with one another.

The following is one perspective on mood disorders and the suffering they cause for us. This perspective is NOT generalizable to everyone but it does speak to some of the seeming paradoxes and contradictions that I experienced when trying to recover from particular episodes over the past 10 years. Some people may not be able to relate at all but for me, the following hypothesis begins to capture that haunting relationship that I have had with my depression where I want it to go away so badly and yet, it somehow has me caught in a trance where I am afraid of giving it up. Then I lose myself and I don't know who to trust.

Sadly we live in a society where people try to accumulate accomplishments and live for the next goal or achievement. It is expected that if you don't hate your job enough, then you aren't working hard enough. We are supposed to feel bad and guilty otherwise we don't deserve any good things in life. Sometimes I think that we've become so obsessed with feeling angry or guilty or fearful that we just can't appreciate feeling peaceful, happy or content because we need to feel guilty about feeling those things or we need to start fearing the next goal or achievement and whether we will make it or not. --Obviously not Everyone feels this way but I see this sort of thing in a lot of young people whether they have been diagnosed with an illness or not.

I think that in a lot of ways suffering is taboo in westernized society and people think that it needs to be "fixed" somehow as though suffering people are broken machines. When suffering becomes such a big secret, some people will hold their suffering so close that it begins to define who they are and they start to see it as the most important part of themselves. This is not selfish but the way I see it, is that it merely perpetuates the suffering. For me, I have actually feared "getting better" because I am afraid of losing my suffering because it is so much a part of me. But that fear is an empty one because I will always have my suffering. When I am happy and content or when I can get excited about things in life, I am not suffering and life is more manageable and I can face the day with strength and I don't need my suffering anymore because I have found a new energy to help me define my presence in the world. But as soon as this new energy goes away, if I get depressed again, I will not be alone because my suffering will return and I will have it back. Suffering will always be there for me. This statement to me seems very sad and yet very hopeful at the same time. It doesn't mean that I will never suffer but it does suggest that I may be able to experience suffering in a different way.

I'm not sure if all of what I just said makes much coherent sense or not. I'll work on saying it better for the future! I guess what I am trying to say is that the enemy from within is, at first glance a different beast from the enemy from without (i.e. the outside world). But the more I think about it, the more I wonder if the divide between the interior of ourselves and the exterior world is more an illusion than a fact.

good luck with everything,
astronaut

[Kaight]

Well said Astronaut.
Some very interesting thoughts to ponder...

Kaight

[paul m]

Hello Alwaysamom. I'm glad to see that you are still reading and learning. You are correct bipolar is a difficult illness to find out about. Although you really don't say so, you would like to know what you can do to accelerate your daughter's recovery. Everybody does.

What follows is soley my opinion and has no basis in medical fact. In my opinion the biggest single problem with getting better, after getting the right medication, is that nobody tells you how long long before you get better or what you can do.

Worse still, we rush back to work or school and then we relapse. Every relaspe ingrains our illness a little worse.(think how weak your arm would be if you broke it 3 times over 5 years) To me, anyone who has a major breakdown, requires a minimum of 6-12 mths being stable on the proper medication before they are ready to resume any semblance of normal life. Milage may vary, some people may resume there full life right away and some people will never do so again.

It also depends on what one does. My son(bipolar 1) often works 60 hrs a week and has no problem with that. However every time he gets promoted to management, his life goes in the dumper. He was much younger than I was when I had my major psychotic breaks and he had better treatment and didn't have as many as I had. Which is probably why he works and I don't. Had his docs got his treatment right quicker(he was in the hospital 4 times) he may have ended up like any other youth with great ambitions.

BUT there is no doubt about it, the more break downs that we have, the more difficult full recovery is.

I don't know what kind of job your daughter was trying and it doesn't really matter. Until she had some time under her belt with a stable medication regime any job might be difficult.

The other thing about bipolar and the reason why I give 6-12 mths recovery period is that she may go 3-6 mths between episodes. It might have been just bad luck for her to hit one just as she started work. No matter what, if a person has the time, they should always ease back into school or work rather than plunge in full time. An injury or an illness, takes time to recover from and sometimes we don't know how we will react until we test the water. so to speak. Take Care. paul m

[Kaight]

BUT there is no doubt about it, the more break downs that we have, the more difficult full recovery is.

Paul - this statement hit home. Decided it merited restating.

[paul m]

Thx Kaight. It also gives me the chance to yak on a bit more LOL. In regards to mental illness and breakdowns, very few doctors even beging to tell us what's down the road. Of course it would take several hours and there would be a lot of if's but's and maybe's.

But if I had been told that my illness may get worse before it gets better and if I'd had been told that throwing my medication in the toilet might still be harming me years later I might have listened better.

Of course in order to listen better I would have had to been told something usefull in the first place. Something like, this pill may not work for you, if it doesn't come on back in and I'll be understanding. Whoops, I'm starting to get on my soap box again.

Nor was I ever told that due to the cycling of the illness, that I may not have another major episode for 3-6 mths or longer.

Nor was I ever told that all some of my meds would do is delay that major epsdisode and not prevent it. A piece of insanity that I don't take understand. " Here take this medication and it will delay your next episode". Which is ok I guess if they would TELL you that they were just delaying it with that medication, very few docs do. Oops, go the soap box out again. Take Care. paul m

[astronaut]

Sorry, this response has nothing to do with alwaysamom's post but I just had to say in response to what you wrote, Paul, that the idea that a medication doesn't prevent episodes or make them more manageable but only "delays their onset" is unprovable. I have been told the same thing too, Paul and it is really frustrating. How could the pdoc possibly know that if I went off the drug I would suffer from another episode sooner than if I stayed on it? For me, I was frustrated because I took drugs that were supposed to prolong periods in-between episodes, decrease the severity and duration of episodes and yet I never saw any evidence of any of these things--although I suppose they could have been worse...? I hear your frustration, Paul.

astronaut

[alwaysamom]

I had a really bad day. Being a caregiver of someone with bipolar can be very tricky at times. I always have to be on, because if I show emotions and I really try not to I am in big trouble. I got a bit angry today like adults do at times and off my daughter went my being angry set her in a tailspin. I so try and hold myself together every day but I sometimes slip. At that moment I know there is no turning back, but what can I do to calm her.

The other question I ask, is how are families and people with bipolar managing financially??. My husband and I are working major hours as well as trying to take care of my daughter and trying to hold 2 households together and we know something is going to give. I would have loved to bring my daughter home, but being from a small town there is NO treatment available for her, and living in a small town without treatment and then the stigma and town talk that goes along with it is impossible, but we are not sure what to do now.

Any advice or help is always appreciated.

Thanks,
alwaysamom

[dave]

Relationships are difficult, especially when complicated by a major illness. A therapist I used to have once told me to not be hard on myself when I didn't live up to the expectations I had imposed on myself. That also goes for caregivers. You aren't perfect and should not expect yourself to be perfect. If you are doing the best you can in a difficult situation, try to celebrate successes and make allowances for times that don't meet your expectations. Your daughter may qualify for ODSP or CPP benefits. If you search the forum using the search tool/feature you will find posts on these programs. Also I don't want to put Paul on the spot but he is very knowlegable about these programs. If you post questions here he likely knows the answers.

[paul m]

Hello Alwaysamum. If, while your daughter was working, and she paid the minimum amount into Canada Pension Plan for 4 of the last 6 yrs than she is eleigible for disbability benefits. They don't pay a lot and it is dependant on what she made while working. To get the most info, contact Service Cda or http://www.servicecanada.gc.ca/eng/i...licant.shtml#b . By the way, CPPD is something that everybody pays into when working. Pat of your payments go to CPP and part to CPPD as an insurance premium. CPPD does have a back to work program that helps you ease into a job without loosing your benefits right away.

If she lives in B.C. she can apply for income assistance and recieve a greater amount if because she is disabled. http://www.hsd.gov.bc.ca/bcea.htm .Neither it nor CPPD pay enough to live a decent life on, but that is out of my hands, but at least it's something.

In regards to should you take her back home to a small town. If she doesn't get treatment she will most likely get worse. I can't be positive on that, but I'm pretty sure.

I had a fairly spectacular breakdown and so it was public knowldge in the rural area that I live in. But it is not required that she disclose her illness either.

I'm pretty public about my illness. I don't work, but I do a lot of chairity stuff and the locals are pretty much evenly divided as to whether I'm a worthless bum or a great guy with a few thinking that I'm the crazy old guy who has lots of time to walk his dog up and down the rural roads. Still most of them wave. Take Care. paul m

[astronaut]

Hi alwaysamom,

Like Dave said, try not to be hard on yourself if you lose your patience once and a while. It happens and it is hard work to keep our emotions in check when there is a lot of stress going on. Once again, I don't know exactly what you can do to help your daughter "calm down." The tactics you use will be different depending on the situation, what is bothering her exactly and the kind of way she is reacting. The number one thing is to prevent physical harm to her or yourself (or others if applicable).

Do you have a family member (i.e. sister, mother, husband) that can come and stay with you two nights a week to either take your place and relieve you for a bit or to just be there for extra support. Even if that extra family member does not support your daughter per se, but can be there for you, that is going to help your daughter by normalizing things and having you feel loved and supported.

As to finances, I know that one of the episodes when I wasn't able to work, I had actually been laid off so I was qualified for E.I. I used the money from my E.I. to pay my parents for rent/food and to purchase my medications. I am also from a small town and had to drive out of town for treatment. My psychiatrist was close (20min drive) but most of my other treatment was in a city 50mins away. For two months I drove there for treatment as many times as 5 times a week and before that it was once or twice a week for a few months. Although gas money was expensive, it wasn't as much as renting a place in that city. I imagine you must live further out than 50mins away though.

I know that my parents have been in debt ever since I've been born. During hard times they have cut back on things to get by and I only have one other sibling so there aren't too many kids to feed. I'm not a financial advisor so I can't give you any advice as to how to manage money better or prioritize for the future. You could speak to someone at the clinic where your daughter is being treated and ask a social worker/councillor/whoever she is seeing, if they can recommend some options for seeking financial assistance (probably best to do without your daughter there as not to worry her too much).

Although your daughter could apply for disability, it is not easy to get and she will likely be rejected at least the first couple of times even if she does qualify.

As for small towns, I am from a small town and had my first very bad and obvious psychiatric episode during high school so I'm pretty sure it was common knowledge for the students in my grade at least to wonder about me. I had to take over half a year off of high school in grade ten and the next year I had to take classes with the grade level under my year to catch up. I was really anxious about being judged and having trouble fitting back into the school community. It honestly wasn't as bad as I expected, and you probably couldn't use the word "bad" at all. Maybe I was just lucky but I don't think so. Like Paul said, your daughter doesn't have to disclose her "illness" with anyone back at home. I didn't for a long time and even then not with a lot of people.

People do gossip sometimes but the truth of the matter is that things get boring. New news becomes old news pretty quickly and the way we act at present can really impact how people perceive us in the present. If anyone does happen to be rude or insensitive, remember that, that is their problem, not yours/your daughters. Other people's prejudice is their shame, not the shame of the people for whom their prejudice is against.

astronaut

[dave]

Also, depending on where you live there may be support groups for family members of people who are affected by mental illness. If there is a local "canadian mental health association" CMHA they may be able to provide information about support groups or other coping tools that you may utilize.

[alwaysamom]

Thanks for your info astronaut.

To give you some back ground on just how little help there is for people from small towns and more isolated from larger cities. My daughter at age 16 was diagnosed with an eating disorder (which they now believe was probably part of her bipolar). Having no facility or help in our town we had to drive to a the closest city for treatment. We travel 500 km round trip every 10 days for treatment and we did this for 2 years. We had the option to put her in a day program 8:00 - 6:00 everyday, but that would have meant she would have been away from friends and family and her doctor didn't feel with all her angry that would have been productive. People in our town wait 3 - 6 months for an appointment with a psychiatrist which is by teleconference. It really is sad that we still live in these times. Now the stigma...., having gone through high school with an eating disorder was very difficult. She was told that she was only the second person, in a high school of 1500 students annually that has had an eating disorder. What should have been said was only the second person to seek treatment. After many meeting with teachers, I still couldn't educate them enough to understand her daily struggles and she ended up quiting after the first couple months of her grade 12 year. I give her credit she did complete her GED that same year, it was just too difficult to go to school daily. Having a label already attached to her in our community makes it more difficult to return as a young adult, and so we live in a city where treatment and help is readily avaliable, although very expensive to do, supporting two households. I have no family or friends here and my husband and I are now living apart so I can support our daughter in her day to day living.

My daughter originally moved here for school, but had to quit before she was diagnosed. She has never really had anything but summer jobs and, therefore, does not qualify for a lot of benefits. There are a lot of homeless people in the city where she lives and my heart goes out to them. I am my daughter's advocate and I am struggling to find financial support, I can't imagine what our homeless with mental illness are struggling with. I once heard a woman speaking on mental disorder / illness and she put it like this; "People with mental illness have brains that don't work correctly, and yet we ask them to fill out a 25 page application for benefits, would we ask a person in a wheel chair to climb the stairs to fill out their application", such a true statement. Althought my daughter is anxious to get back to work and we are hoping some day that will be a reality right now that is not something she is capable to do and so what does she do in the mean time. Not being able to contribute seems to also stall her from feeling good about herself.

I found this site looking for something that would give me a step by step financial assistance plan and so glad that I did. I have learnt so much from the people on this site and it has really opened up communicate for my daughter and myself. Thank you all for giving me a place to just chat

Alwaysamom

[astronaut]

Hi alwaysamom,

Yes, it sounds like you were living more remotely than I was. I still had to wait 5 months to see a psychiatrist after I had to leave school. I think that 3-6 months is a pretty typical wait (if not longer!) for anyone to see a psychiatrist whether live or via telecom.

I went to a small high school of maybe around 900 students or a little more by the time I graduated. When I went through school, mental illness was not openly discussed very often and of course, eating disorders are highly stigmatized and misunderstood because of bad websites; poor, simplified literature; and stupid popular TV shows like Dr. Phil which exploit people by shaping their problems to enhance shock value in order to get more viewers.
Students and teachers alike can be very misunderstanding and can enhance stigma through their behaviours. That being said, I sometimes wonder why it is that people who stigmatize can appear so misunderstanding. Sometimes it is because they haven't really been exposed to the "real deal" so they haven't experienced how hard it is. But other times, I think that people are simply very scared of mental illness because much of mental illness sort of dwells in the unknown. Sometimes authority figures like principals like to deny epidemics of mental illness because they don't want to face the vastness of the problem. Of course, there is a chance that they are right and only one other person ever had an eating disorder and that all the students are really healthy and well-adjusted but, seems pretty unlikely, doesn't it?

All that being said, I have faith that most people can be understanding and kind. Stigma is there for sure and it can be nearly as problematic as the illness itself but I think that it can be undone and if not, there are still many communities and individuals who will be accepting and understanding. And if we can reduce the stigma we have against ourselves, then I think it will reduce the amount of stigma people will have toward us.

Sorry, I'm just sort of rambling here and probably not offering much help. Thanks for trying to give some more context. Even though you have no family in the city where you are living, have you made any friends or contacts yet? Do you work from home with your daughter, or do you have a job outside of your house where you can get out during the day?

good luck with everything and I hope that this financial website you have found provides some answers.
astronaut

[Kaight]

Good to hear from you Alwaysamom.

I like your quote:

"People with mental illness have brains that don't work correctly, and yet we ask them to fill out a 25 page application for benefits, would we ask a person in a wheel chair to climb the stairs to fill out their application"

This certainly speaks to how much we, as a society, still have to learn about mental illnesses.

Hope you find the support you are looking your soon,

Kaight

[uni]

Hello Alwaysamom. Thank you for sharing about how small communities can make it even harder to deal with mental illness. It's all too true. I think your daughter is very lucky to have the parents she does. No matter where a person lives, having loved ones on board can make the world of difference.

I find it interesting how the sentence Kaight quotes is the exact one I was going to point out and comment on. It's a really big deal to climb those emotional and mental stairs with no support. And usually in the dark.