New and needing help

[alwaysamom]

Hi;

I am new to the site and so wanting to interact with other care givers of people with Bipolar. My daughter was diagnosed 8 months ago with Bipolar, after 4 years of being treated for an eating disorder. I have now moved in with my d to try and help her cope. I have left my job, my community and family to be with her. Life would be easier if I could have moved her back with us her family and support system, but coming from a small community there is no treatment for her here. She has had to quit school, not able to work, and financially struggles as do all of us trying now to keep 2 households going. How do people with Bipolar cope, survive, live. I watch her struggle daily, the ups the downs the guilt of not being able to contribute. What can I do to help her and be of more support to her. She is still coming to terms with this life she is living, and as a beautiful young adult that had so many dreams and goals and now feels so hopeless in it all.

I am really looking for success stories, people who are living their lives, I am looking for hope.

Any info people can give me would be appreciate.

Thanks,
Alwaysamom

[Determined]

Hi Alwaysamom and welcome to the forum. Sorry to hear about your daughter. I know how much it hurts to see your kids hurting. I have struggled with a mood disorder since the age of 19. Been diagnosed as schizo, mild depression, major depression, low mood swings, and bipolar 1. Now it has been narrowed down to a depressive disorder. In any case it can be very difficult to live with but by no means impossible. With proper and effective treatment and determination on her part her dreams and goals are still attainable. There are some great people on this forum that can offer excellent advice and encouragement and in my opinion are the success stories you may be looking for.

But in terms of success stories, I might be so bold as to consider myself as one. I'm not super rich or anything like that but over the years that I have had to deal with this affliction I have married a wonderful woman, have two awesome kids and have always been able to work at some pretty decent jobs. I also managed to get a college diploma and generally just live a very contented life. Right now I am hopefully at the end of fighting through another major episode.

Also, over the years I have met several people who have battled mood disorders. One of my closest friends is bipolar and has since retired but he too has a wonderful family and he had a long-standing, high profile career with the federal government. I have other friends with major depressive disorder who have also been very successful in their lives. It hasn't been easy for them but they just kept pushing. There are people in all walks of life, some very famous, who have had to cope with such illnesses.

What I am saying (and I can never get straight to the point, sorry) is that it is never hopeless. Gain as much knowledge as you can about the illness so you know what to expect; and don't despair. This is something that can be brought under control and maintained.

I wish you well
ted

[astronaut]

Hi alwaysamom,

Welcome to the forum. I have suffered from mental illness since age 14 and I am now 25. The last 10 or 11 years have dished me out some pretty difficult times. I had to leave high school in grade ten to be hospitalized, I had to leave university at the end of my BA because I couldn't cope anymore and I also have lost jobs in the past and gone for long periods of time where I couldn't work or go to school. Now I am living three time zones away from my family, friends and support systems doing my masters degree. It has not been easy. I have struggled a lot while I have been doing this degree and have even considered dropping out of the program. My mood has improved a lot since last spring and I feel better about the program.

Your question is very big and very complicated. What is success? What counts as success? What is good health?

When I was first diagnosed with bipolar, I experienced much of what you describe your daughter as feeling. I had an identity crisis (and I still sometimes do). Who am I? What is me and what is the disorder? What is the disorder and what is the side effects from the medication? Why is this happening to me? I have always been such a good person and worked so hard and now I am falling apart! Why doesn't anyone understand how horrible it is inside my head? Why can't someone just put me out of my misery? etc.

Learning to survive with bipolar for me is an ongoing process. I go through periods of acceptance and then periods of rejection. Patience is important because one doesn't get better over night.

I am not a parent but I have watched my mum and dad support me through these most unbearable moments. The kinds of support that you give to your daughter might look different from what my parents did for me, there are many factors to consider such as personality, level of knowledge about the disorder(s), etc.

The key thing that I needed (and still do need on occasion) is to be remembered. When it comes down to it, when I am in a depressive episode, I am in a horrible, horrible place and there is nothing that anyone can do to make it go away or to make it better. The only thing that my loved ones can do for me is to remember me. Because when I am depressed, I lose myself. I don't know who I am anymore. I am not; I am dead inside. The only place I live is in others. I have lost myself and if no one else remembers me, then I am truly gone. When I am depressed, I live on in others.

When anyone is diagnosed with any serious illness, they need to change things in their life, even if it is moving to get treatment or adjusting their life goals to give themselves more time to accomplish things. Whether you have cancer, bipolar, or diabetes, your life will be affected. It is horrible, especially when we are young because we can't imagine these things happening to us. They always happen to older people or to unhealthy people, etc. Often times we hold stigma against people with mental illness, even if we don't really think that we do. When we are diagnosed with mental illness, the stigma turns inwards and makes the self hate and guilt even stronger. Eating disorders can be very stigmatizing and so can bipolar.

I think that you are doing the right thing in going to your daughter when she needs you the most. When people get sick, not only do they suffer but their family suffers also (no matter what the illness, it is hard to watch your loved one go through anything). In this respect, you need to make sure to live your life fully too and take care of yourself. My parents were always there for me but they were also able to do their hobbies and meet with their friends. My mum and dad had to take time off of work sometimes too. Things had to change sometimes for everyone. It won't always get worse. I think it was good that my parents looked after their own well being because it made life seem more "normal" somehow despite my suffering. It also helped my parents to take care of me better if they were themselves feeling more socially connected and were sleeping, eating and exercising well. Also, by seeing my parents do every day things like talk to extended family on the phone, make supper, do yard work, etc., I didn't feel so guilty about negatively impacting their life because they made the best of things.

There is hope but these things can also take a lot of time so it is easy to lose hope. Education about the illness and treatments available can be helpful in identifying when an episode is coming on and treating it before it gets too bad. What kinds of programs/treatment is your daughter involved in right now? Is there any kind of programming or educational programming or parent support groups for you to go to in the area? I think my mum and dad found the educational programming that they went to was very helpful in giving them hope and some coping strategies for how to deal with my temper tantrums and fowl moods.

Finally, I don't know what kind of eating disorder your daughter had or what treatment measures were necessary but eating disorders can be very serious and severe weight loss (as you probably know) can exacerbate all of the mood issues and mess with hormones, etc. Sometimes people who have had eating disorders in the past will more easily lose weight during depressive episodes. Although it is usually recommended that people don't harp on eating and weight gain to someone who is in the throes of an eating disorder, it is important to be at least aware of any significant weight loss or restricting to make sure that the eating disorder does not rear its nasty head again. For me, when I'm in a state of confusion or loss of control, I can make my eating patterns a lot more rigid because I feel like it is the only thing that I can control in my life and it makes me feel safer somehow.

I wish you the best of luck and take care of yourself so that you have the strength to care for her too!!

astronaut

[Determined]

I don't want to hijack this post but I just want to say that Astronaut, after so many struggles of your own, I just so want to wish for you many years of clear sailing. Your posts have been so valuable to me. The way you describe the feelings and the experience has made it so much easier for me to relay these feelings of my own. I have dealt with this for so long and just never seemed to be to clearly explain it to anyone. Now I am much better at it and I think as a result I have made it quite clear to the pdoc I am seeing. I also really appreciate how you make a point clearly and firmly but without being judgemental. I seriously wonder why there wouldn't be more people like you in the mental care profession. Anyhow, I don't want to embarrass you but after reading your post here it was just something that had to be said. It is so great that you can take your own struggles and pain and use it as a means of helping others.

Having said that, Alwaysamom, these are the kinds of people you will meet on this forum. Caring, compassionate, knowledgeable, but never judgemental. It is one of the most valuable resources I have found to this day.

[AJ]

Welcome to the forums Alwaysamom. I don't have any kids with bipolar but I do have bipolar myself. I have had good periods in my life when I've been well, and some very bad periods where I've had to be hospitalized.

It is possible to be well. The journey to get there can be a difficult one. I think your daughter is very fortunate to have such a supportive Mum. The more support a person with an illness has, including bipolar, the better the outcome.

[alwaysamom]

Thank you all so much. I have been looking for months to talk to someone who can help. I have looked into support groups, but they all happen during my work hours. Can some of you help me with how to handle the terrible moods. I have to admit when I first started to understand what it was all about, I was at least able to stop myself from argueing every issue. Learning that if I said white she would say black. Is there anything else that I can do to help when these moods happen. I know when she calms down she feels so bad for everything she has said, but I am no longer taking it personal and that has helped me a lot. Again I appreciate all the words of wisdom that you can share. Thanks again

[astronaut]

Thanks Determined Ted, that means a lot.

astronaut

[astronaut]

Hi alwaysamom

Once again, you ask a very difficult question. Dealing with terrible moods is hard for anyone but it is even harder when we don't understand the context or the kind of relationship you and your daughter have.

Myself, I have had many terrible mood swings and temper tantrums with my parents that I have felt remorseless for at the time and very upset about afterwards. Often times during those temper tantrums my parents would ignore them as best they could or try to offer distractions i.e. "lets go for a walk" or "lets watch a movie." I HATED it when they ignored me because it made me feel like they didn't care and it made me feel like they were powerless to help me or that they didn't know what to do to fix me and they were the parents!! I mean, aren't parents supposed to protect their kids and fix everything!!??? Well, no; the sad, and crushing answer is NO. I have a problem that is so serious, they can't solve it. This isn't like falling off of my bike and scraping my knee. This is the real world and the real world does not always have answers out there somewhere that we can find to solve our problems (especially not quickly).
I also hated it when my parents tried to distract me by suggesting a movie or a walk. How the hell was that supposed to fix anything!!??? Didn't they understand how much I was hurting? If a walk could fix it, I would already be out there walking by now. Can't they see how much suffering I'm in? Can't they hear me when I am saying that I am too restless to sit down and watch a movie? That I can't concentrate on the plot line of a movie? That I can't go for a walk because I don't want anyone I know in the neighbourhood to see me right now? HOW IS IT POSSIBLE THAT MY HEAD IS HURTING SO MUCH AND THEY AREN'T FEELING A THING!!???

Alwaysamom: has your daughter ever said any of the above things to you? I have said them to my parents when I have been in a fit of rage and it hurts them deeply because they do see my suffering and they are suffering too because I am suffering. They only want to help me but they feel so helpless because nothing they do seems to work. Even though those things they tried didn't work for me, I don't know what else I would suggest for them to do any differently. I just can't think of anything they could have done to help me during those times. Those times just had to pass. The best things my parents did was to be patient and believe that I would recover someday. I am sure that this was hard for them to believe but they never really gave me a sense that they thought I was a hopeless cause and by believing in me, I think it somehow made me believe, deep down inside, that I would get through the worst times.

Some things that I am glad my parents did:

-they did not kick me out of the house BUT they did not let me live in a completely dependent way on them either. They were very good at adjusting their expectations of me based on my level of mental and/or physical capacity during various times of the illness. At the bare minimum I paid rent. When I was unable to get out of bed, there weren't many expectations for me but when I regained more abilities and energy, I slowly started taking on more responsibilities to contribute. Much of this was simply my personality but by helping out around the house it at least gave me a bit of a sense of purpose.

-I am glad that my parents continued to live their lives and didn't give up everything for me. They were good role models that way. They still went out with friends and had company over and exercised and did hobbies. They would invite me along but they would also respect me if I needed to keep my distance and did not press me too much to do anything that I was really uncomfortable with. By living as normally as they could, I think it was somehow helpful for me to see that there was still something "good" out there and that I was not ruining their lives.

-They listened to me. Mostly when they ignored me it was because, as you mentioned in a previous post, that the arguments weren't reasonable and it was pointless to keep on arguing about something meaningless. When I was fairly calm, they were able to listen.

-They took me to the hospital when I begged them too, and they advocated for me by writing letters to doctors and coming to appointments when necessary.

Alwaysamom, the above list is what my parents did that worked for me. These things worked for me because they worked with how I saw the world and how I perceived the situation. Your daughter might not see the world in the same way that I do and she might not have the same concerns as I did so some of the above tactics might not work for her. Every situation is going to be slightly different somehow. Please have hope for her. You don't even have to tell her that you have hope for her, just believe it yourself that she will get better. It is harder to give up on yourself if no one else is willing to do so.

good luck,
astronaut

[alwaysamom]

Wow, thank you so much astronaut, you hit a lot of points right on. My daughter and I have a great relationship, and I was able to talk to my daughter about some of the points you brought up. Especially the point about ignoring some situations as I know that bothers her also, and we have talked about what I can do better. I could so relate to so much of what you were saying and enjoyed a chuckle about the walk and the movies cause as a parent I know we grasp for anything to help. Right now her father and I are helping out in all aspects of her life as she is in a difficult time, but I do realize after reading your post that I need to start giving her back some of that responsibility to help her feel better. Thank you so much for your information it is of great help to me and my family.

[astronaut]

you're welcome, alwaysamom. I wish you and your family all the best during this difficult time.

astronaut

[Kaight]

Responsibility is a tricky subject. How it affects me seems to depend on where I’m at in my mind. When I have minimal responsibility (such as when I’m really sick and have given up on eating or moving) I often get to thinking how useless I am, that I have gone a whole day, or week without helping out. That because of me my partner has had to cook, do laundry, go to work, etc for two people. I feel like a parasite.

The above seems to make an obvious case for me to always maintain a certain level of responsibility in my day to day. Except…

When I fail at my responsibilities (which I tend to do more when I’m down) I start to thinking “wow, I can’t even do a good job at the menial task of cutting the lawn” (for example). Again, plummeting self-confidence.

Alwaysamom – In writing the above I had hopped to offer you some clarity on the subject of responsibility. I don’t think I’ve achieved that one bit! I guess my point is that it is a subject that I dual with daily. Maybe your daughter does too.

I hope you keep posting and maybe you’ll even have time to read through some old posts – there is gold mine of information on the intimate thoughts of people dealing with mental disorders.


Take care,
Kaight

[alwaysamom]

Thank you Kaight, you did achieve your clarity on the subject of responsibility. I do know that my daughter does feel guilty and very low if she plans to do something and then isn't capable of following through with it. I will take it hour by hour but I think just acknowledging the small things she is capable of completing will be important to her, and that I need to take the time to let her know how important every responsiblity she completes is.

Thank you for your info and I will take the time to look through the posts, as the more knowledge and understanding I can achieve the better it will be for my daughter.

[uni]

Hello alwaysamom, and welcome to the forum!

[paul m]

Hello Alwaysamom and welcome to the forum. Many have given you good advice, however whether your daughter ever gets better or not will depend on a lot of things. Just like any other major illness bipolar restricts our lives in some ways. I'm not talking about intelectual or physical limitations, but still some major limitations. The limitations may be minor or they may be major depending on just how major her illness is.

Plus, just like any other illness or injury, the time required to heal may be short or long. Some type of cancers do not require a person to miss any work, others require yrs of intense treatment to get better from. Bipolar is much like that. None of the below is a criticism of anyone. I ,as I ate a whole pack of chocolate chippets last night(excess sugar is not great for me), realize only too well that none of us are perfect and that the journey to wellness is long and hard.

However the very first thing to understand about bipolar is that we are unlikely to become better without professional help and more to the point, the correct professional help. In general GP's just don't cut it, nor to a wide variety of other health practioners. They all can be of invaluable help along our road, but a specialist is usually needed.

Nor will we get better unless we do the proper things ourselves. Few people with bipolar get better if they: Drink heavily or do a lot of illict drugs, don't eat reasonably properly, don't pay attention to good sleep patterens and for most they must follow a fairly strict regime of medications. Exercise, while not essential, does help as does having a fairly good daily routine.

Plus, what no doctors and often no one at all ever sez, is that people with bipolar often get worse before they get better. The illness left untreated or when improperly treated often progresses. Sometimes the medicines that we take can make our illness worse as well.

Education really is the key. There is no cure for bipolar, but by educating ourselfs we can learn to limit and control he symptom. Thx for joining our forum. Please do not hesitate to ask questions. Take Care. paul m

[alwaysamom]

Thank you Paul for the advice.
Bipolar is certainly a tricky disorder to understand. I continue to read and to learn, but what the books don't tell you is how or what to say in the most difficult times. I can tell you that my daughter is under the care of a good mental health team, has attended education classes and is in a support group. She is monitored with her medication right now with some changes taking place as they see fit. In those areas I am very proud of her. Three months after diagnosed and on medication she felt ready to take on the world, the first was getting a job and of course she jumped in with both feet. Not wanting anyone to know at that time that she had bipolar for fear she would be thought of differently she took on a full time job after 4 weeks she fell totally apart. We seemed to have gone 2 steps forward and 4 steps back. It has been an uphill climb since, but a good learning experience and she now knows that she must learn to take care of herself first. I am now looking after her day to day needs and I do see progress although very slow, there is changes happening. Keeping sending advice and anything that will help me out. Thank you