Mental Illness Affects The Entire Family - The Stigma Causes People To Lose Sight

This past year and a half has been a world wind since I lost my mom.  Just when you think you have managed to over come so many obstacles something will come up to remind you that your loved one is really, really gone. 

I have a sister who has been extremely ill with Mental illness for years. We just thought she was different when she was growing up but it wasn't until she has her second baby and tried to kill herself when her daughter was about the age of 1.5 years old that we realized something much bigger was going on. To say that this changed my mom's life would be an understatement. It changed my mom's being because my sister wasn't the same after this incident. She was diagnosed with Bipolar disorder, psychosis and borderline personality disorder. Bam! From the time my sister tried to kill herself mom worried endlessly that she would try again and succeed. I used to get a bit frustrated because mom sort of stopped living her life in fear of not being close to home in case something happened but in hindsight, I probably would do the same (consciously and un-consciously) if that were my daughter. 

My sister ended up divorcing her husband and mom had my sister with her children move in with her and my step dad. My sister and her two girls lived with my parents for approximately 8 years. There were many times my sister was so ill and unable to get out of bed or think clearly enough and mom took care of the girls. She grew to love her granddaughters like her own children. We could all see the stress this put on my mom and at times we (her other children) resented it. We felt as though mom's life was being suffocated and she couldn't think rationally because of the stress this put on her. We worried about her health because during this time period my niece was diagnosed with Leukemia and within 7 years my sister (my niece's mom) was diagnosed with breast cancer. My sister with Mental illness was in and out of the hospital about every 3-4 months with suicidal thoughts or her psychosis became uncontrollable. She would hear voices telling her to hurt herself and she also saw things that weren't there. 

It's been over 15 years since my sister was diagnosed with bipolar disorder and Borderline Personality disorder. My mom always said, she would have never changed a thing when it came to helping her, the girls and having them move in with her. My mom understood my sister in ways I'm sure, that we were unable to. As much as I am an advocate for Mental Health, this was a hard pill to swallow. Do I resent my sister, no! Did I resent her before I became more educated about her illness, yes!  She had 3-4 diagnoses before they finally said it was Bipolar Disorder. Sadly, they have had her on a ton of medications which have caused physical problems and some of the medication's side effects are just as bad as the illness itself. Her borderline Personality Disorder makes her condition that much harder to treat because it's not a mental illness, it's a personality disorder. They feel it may have happened around the age of 4 yrs old after my dad died because she never had closure or the understanding needed to get over the loss of my dad. She doesn't have many memories of him either. I won't go into a long rant about borderline personality disorder but lets just say, a person who has this also has the mindset that 'it's all about me, me... me and THEY, as in everyone else are the problems." Mom understood my sister on a level only a mother could. Do I love my sister, of course. Do I feel frustrated with her because I feel helpless, yes. 

Since mom's passing my sister has slowly been declining. I am her Health Care POA and I've been in touch with her doctor, social worker, hospital staff when she's been admitted even demanding they wean her off some of her medications because she was like a zombie. I think they had her on at least 10 medications and by the time she was discharged she was on 3 or 4. She finally seemed like she was coming around after all this time and she was doing so much better but the borderline in her made her seek out more medication (that's the attention part of her personality disorder) and she's worse now than we've ever seen her. I think mom's death caused my sister to spiral out of control.  

Because my sister is so ill again, I have times I want to call my mom and just hear her voice and then I remember. I have times I want to share happy occasions with mom, and then I remember... she's really, really gone. I can't imagine what my sister feels since my mom was not only her confidant but her caregiver for so many years. 

My sister has had ECT (Electroconvulsive Therapy) two times because of severe depression and psychosis that drugs would not manage and I have to say, it has not been helpful. If anything, ECT has caused more issues, including severe memory loss which has led to more depression. My sister's daughters have moved to other cities because they needed to separate themselves from her, even though they love her very much. She was very dependent on them and they are both under the age of 26.  We keep trying to talk them into getting therapy for themselves because they have experienced a lot more than gals their age should, even though it's not my sisters fault. They still manage to have a relationship with her which is great. 

I feel like mom was a saint and now my sister is left with her siblings who try to help but it's just not the same. I have a list and on my list is to speak to my sister's caseworker and nurse this week. She has been in Out patient hospital therapy for almost 3 years and she's still declining. Obviously, this modality of treatment is not working. It's tough when a person has a dual diagnosis because it could be that her borderline personality disorder is causing more issues right now but I'm not a doctor, so I can't be sure. If it is the larger cause of her decline, she might benefit from being in DBT but for some reason she's making excuses about DBT therapy. The only rationale reason I can find for her to make excuses that it wasn't helpful is due to a remark she made: "I only get to speak for less than 10 minutes," the rest of the time they ignore me. Well, DBT helps a person with borderline personality disorder to learn that the world does not revolve around them. That's the short version. They are also taught to learn how to listen to others, care for others and more. 

I will write some follow up blogs because this situation at the time of this writing is completely out of control and I feel lost. I want to see her thrive again. There was a time my sister was thriving. She's a very smart and talented lady, I want to see her feel better and be able to focus on her positive attributes. I feel so bad because I know my mom would be devastated seeing my sister as she is now.  We, her siblings feel lost because the system seems to have a hold on her. 

If people think the stigma of Mental Illness has lessened, to a degree depending on your diagnosis, it has. If you have an on-going illness that causes you to act in a manner that society can't understand, the stigma is there. I see it in the way my sister is treated. I feel like she's been on an assembly line and just a number... they forgot that she's a human being with feelings and wants to get better. I'm not sure she can even express that she wants to feel better anymore. I think she feels there is no hope. I can't allow that to continue.