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Untitled Comment
DCROY9633
Sunday, March 02, 2008 at 02:20 PMre: Untitled Comment
Pam
Sunday, March 02, 2008 at 04:16 PMThanks for the response. I guess I'm just really nervous because I see myself as becoming her primary caregiver and I think she does too. She smokes, I don't, she drinks, I don't and I think she might be a little leary of my expectations. My folks mainly did what they could, they set up a home for her right next to theirs so they could be close by if something happened. They gave her a lot of space, but kept her on track with her doctors and such. Her state is stable, but she's had several relapses (she takes geodon) she has a 15 yr. old daughter(father unknown) that my parents have pretty much raised. Right now with their health going south my siblings and I are assisting them by schedule and things are getting very stressful. It seems that my brothers and sisters really don't understand schizophrenia I think she has just taken advantage of our parents over the years and now they want it to stop. I am concerned that they want to put her in a home or something of the sort just so they won't have to deal with her. I'm so stressed out right now because I know that their methods are too harsh for her to avoid another relapse. Each time she relapses it lowers her base level and she seems to drift that much farther away. I have done my best to intercept them to keep her stress level where it is manageable. I don't know what else to do, shes not violent, but she get very scared in confrontations. I haven't ever thought of institutionalizing her. Are they right? I want to do whats best for her and her daughter not whats best for them. My life is just so hectic, I never realized just how much my parents did. Currently I work full time about an hour from home which turns my work day from a 8 hr day to a 10 hr. I also go to college full time at night and weekends. I only have another year left, but I'm scared that might be too late. Can someone please tell me what they know about group homes or institutions or when a person would know this is a good choice.
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Pam
DCROY9633
Sunday, March 02, 2008 at 06:22 PMOf course, I don't know Pam's state of mind or know the complete picture of how your family has dealt with/deals with the situation. I do know that 2 of my psychiatrists urged my parents to have me institutionalized in a State hospital and to get on with their lives. I was so sick at the time, I agreed with the doctors. Life was too much for me to deal with. I couldn't make decisions (or I made bad decisions,) and I longed for a place where the decisions would be made for me. I didn't want to even choose what to eat or what clothes to wear.
As it turned out, the State hospital informed my parents that they no longer institutionalize people, that at any sign of improvement they would be discharged. So I moved in with my parents and that is where I still am. A couple of times I have gotten an apartment by myself and lived there a few months, but I rapidly decompensated and got much worse both times and ended up in the hospital for not following the doctor's orders and not taking care of myself or taking my meds. I fear this will happen again when my Mom is gone -- she is 80 yrs old now.
I am much improved, but if I had to make a choice now I would prefer a group setting where meds were meted out and meals were prepared, where I would have some structure, if Mom was no longer able to provide a home for me. There are nursing homes with good group activities, I have people who would visit regularly, etc. I drive, I handle my own money (I get SSDI and a disability pension,) I can cook and buy groceries, I generally handle my personal hygiene okay although it could be better. I would not be "disabled" in the sight of my brother and sister (ages 60 and 47) because I am doing well. But I could not go to live with them if the need arose, and I don't think I could take care of myself very well.
It would not be an ideal setting, an ideal life, of course, but my life is already far from ideal. I can't work, I don't have close friends, I often am unable to read or go to movies because I can't process what is coming into my mind. Yes, I can express myself well. I have quit smoking, and I rarely drink. I have made strides forward.
I know it is a difficult situation for you and it sounds like the decision may be left up to you. I just wanted to say that being institutionalized is not all that bad -- I have been hospitalized 18 times, so I know a little about it. Could I survive alone? I imagine so...but would I want to? I don't think you should shoulder the burden of your sister's care and take her into your own house. You have the right to have a life of your own, too, and as you have said, you choose not to smoke or drink. Are you able to discuss this with your sister, or is she up to it?
I hope this was in some way helpful.
Carolyn
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Help me cope
Christina Bruni
Monday, March 03, 2008 at 03:02 PMHello littlesister,
I agree with Carolyn that it's best if you don't take your sister into your home. Research living options such as a group home, and research fully. Why are your sister and brother not helping you in this decision? We will support you in this online community, even if they don't support you in real life.
I lived in a halfway house, and then in a residence in a housing project. At the time, I didn't want to live there, but I had to, and even though I loathed being there, it was one of the best residential programs in New York City. The other group homes and institutions were exposed in the New York Times for warehousing people with mental illnesses and not providing needed services.
So research is the key. Call up your local NAMI. You can call their national hotline at (800) 950-NAMI (6264). NAMI is the National Alliance on Mental Illness, and they have family support groups for people whose loved ones have mental illnesses.
Your local NAMI affiliate could also advise you about the residential options in your town or City.
Pam needs professional help that you can't give her.
I shudder at the use of the word "institution." I prefer to think in terms of a small group home, for anyone who needs daily intervention with a staff member or social worker.
If you do find she needs to be in an adult home, make sure she is being treated well. Like I said, research the best available options where you live.
If you visit her when she lives in the home, that will show the staff that they can't take advantage of her, because she has someone on her side who will go to bat for her.
I'm certain there are some lovely homes out there, just do the research.
Best,
Chris
replyre: Help me cope
pam
Monday, March 03, 2008 at 06:58 PMFirst of all, when I said "FYI little sister is Pam" I mean I posted the question under the alias Little sister, but my real name is Pam. It's my older sister who has the disease.
I cannot tell you how comforting your replies have been. I feel at times like I'm going crazy trying to figure it all out by myself. My family has always been close, but as my parents became more ailing something has happened we've drawn apart. My father will not return home and we assume it will be a matter of weeks/days-he is 85. Mom is 80, her health is a little better than his she can't walk too much, but again she is 80. I'm the youngest in my family and I have always close to my sister, I guess I was always concerned for her- I suffered the"why not me" symdrome for a long time. They don't get it that stress is not the easiest thing for a person in this state to take. I don't want her to have anymore than she can handle, so right now I act as a barrier. Its very sad.
My father is the dominant figure in our family and I know that he is dying and I can only assume that my mother will follow shortly after(its just how it usually goes). Since my parents have been the ones to give my sister money or make sure her daughter has what she needs(really just the necessities, my parents did not have alot of money) I fear that my family will push my sister out when they are gone-where I don't know and I don't think they care. I do need to do something because I know that it is just a matter of time. They never had to deal with her and I don't think they want to start.
I agree that a care facility with daily activities for her would be essential and probably increase the quality of life for her, but I'm afraid that she will hate me. Also, she has a 15 year old daughter that I need to think about. I'm will call NAMI and see what they can do for me. I also made an appointment with her county case worker, they mainly manage her finances(appointed payee).
I will keep you updated. Thank you again for your kind words.
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What to do
Anonymous
Friday, March 14, 2008 at 05:21 PMFrom now on ...
1. Do not receive gifts from anyone.
2. Give away all the past gifts that you and your family have received. Give away other things if you feel you should give them, even your valuables (books, clothes, etc.)
3. Donate and volunteer at least daily. Even in class/work. If comfortable, participate in large events such as school plays.
4. Give meaningful gifts to people who you think need them.
5. Become a vegan.
6. Do not harm any animals or plants.
7. Note to family members and friends-- call her name often, before you begin each sentence, after a pause in your sentence, at the end of the sentence, many times if necessary. Do not touch her too quickly.
8. Do not let other people know that you even have Schizophrenia. Act calmly, happily, and normally.
9. If you encounter being stealed, thank the person with your heart.
10. If you're at home and encounter uncomfortable sensation, use your palm to slap the center of your head seven times, hard and with a frequency that makes you comfortable afterwards. Or 49 times. Keep slapping this way if necessary.
11. Call a close family member that you haven't called in a long time.
12. Beggars/homeless-- help them. Do not accept anything materialistic in return. Better to not let them thank you.
13. YXQG (only if you know it; otherwise concentrate on 1-12).
Please don't email me back.
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Your sister might be showing signs of stress that are interpreted as getting worse, because she sees that those who have been her primary caregivers are now needing care themselves. It is up to you to see that she sees a psychiatrist regularly and has access to medication, and is taking the medication. She may feel depressed because her carefully constructed world is changing. Let her know she will not be abandoned. I will turn 50 this year and it is scary for me to think there will be a time when my mother is gone and I will be out on my own.
Carolyn
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