Family Relations/Sick Parent

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Question
My father is 60 and for the past 6-7 years we've been dealing with an on going and still un-diagnosed degenerative brain disorder that causes seizures and is responsible for early onset dementia. He is in and out of intensive care almost monthly and doctors seem more concerned with stabilizing him and getting him out the door than helping us. He was forced into early retirement and can never be left unsupervised as his seizures are grand mal and deadly if left unattended. In a nut shell it's been years of frequent hospitalizations, disinterested doctors pumping him with meds and hundreds of unanswered and ignored questions.
My family is being run into the ground. We are collectively exhausted and hitting our wits end. My one brother (30) has 2 kids and is struggling to balance, my other brother (22) is still young and at home with his life on hold and my mother still has to work full time and is always tired (she's also reluctant to talk about solutions-often freezing and saying she doesn't want to discuss it when I try and brainstorm options).
I (27) live out of the city, I try and come back often to help out but, realistically, it's not feasible for me to get home and contribute as much as they need.
He's too young to qualify for any nursing or home care options but he needs someone to be with him while my mom is at work just in case he has a seizure to call 911, which is a frequent enough occurrence. We live week to week trying to sort out the schedule of whose working when and whose "babysitting" him between what hours. Whats frustrating is people don't understand how upsetting and stressful it is.
 I'm so tired of doctors shrugging at me and social workers telling me there are no options available for help because our situation is so unusual. I'm so desperate to figure out a plan because what we're doing is driving us all crazy I can't believe that there's nothing to be done. It's affecting our health, my mom is now on blood pressure meds, my one brother is turning to alcohol the other is withdrawn and bitter and not the person I knew. He keeps making "jokes" about wanting to run away and never talk to any of us again. I'm depressed and full of guilt for not living in the same city as my dad. I know the bulk of the burden is on them and I always try and stay on top of whats happening, calling often and offering up what I can to help but I know it's not the same. There's no work in my field back home and I would have to give up my whole life to go back. I want to fix it but I don't know how. I guess my question is two fold.
How do I deal with the guilt and agony around whats happening?
How can I help my family even if I'm not in the city?

Answer
Hi, Sheelagh, thanks for your questions. You asked:

How do I deal with the guilt and agony around whats happening?
---- the best thing to do is to seek psychotherapy. That way, a professional can help you see what is blocking the resolution of your problems, and help you find way path thru them

How can I help my family even if I'm not in the city?
---- this is an area outside of the expertise of a psychologist, of course. You could work with your therapist to discuss what you feel are your options. Often, a therapist can help you by asking questions that you had not previously thought to ask yourself, and/or by asking you questions that you don't yet have the answer to, but which, by responding to the questions, new insights come to your mind.

I'm sorry that I don't have more definite help. It sounds like a complicated problem, one that even multiple medical doctors have not been able to solve. Have you considered taking him to a psychologist and/or neuropsychologist? Often a different doctor, with different skills, can provide new insights.

Finally, I will leave you with this - I don't know if it applies or not, but possibly it does, so please consider it: There's an old Buddhist saying "when the student is ready, the teacher appears". It speaks to the human condition that often, we do not want to know certain things. It might be obvious to everyone around us, but we are oblivious, because we don't want to know. Perhaps we are not ready. But one day, we are ready to find out, and when we ask others, they say 'yes, I knew that all along. I wondered when you were going to find out'. So, consider the possibility that the doctors don't tell you everything because it seems obvious to them that there are things you don't want to know. Like I said, I don't want to assume that's true, and I don't mean to come across as being pejorative, but perhaps it might be helpful. I know I've seen it often  

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Bruce Borkosky, Psy.D.

Expertise

questions framed similarly to 'what are some ways to respond when someone does/says X' are best. Questions posed in the form of 'why does my father do/say Y', or 'how would you diagnose my mother when she does/says Z' are difficult, if not impossible, to answer. I will probably reframe your question to fit the first question (what do I do). Nay question regarding any family member is fair game. Some of the most difficult are in the area of step-parenting and divorcing families.

Experience

I've been a licensed psychologist in Florida since 1994. I've evaluated and/or treated thousands of patients.

Organizations
American Psychological Association Florida Psychological association National Register of Health Service Providers in Psychology

Publications
www.bruceborkosky.blogger.com

Education/Credentials
Psy.D., Miami Institute of Psychology, 1993 M.CS., U. of Dayton, 1984 B.A., Ohio Wesleyan U., 1978

Awards and Honors
Award for Years of Dedicated Service, Palm Beach County Legal Aid Society, 1999

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