Family and Caregiver Schizophrenia Discussion Forum

How to reengage

Family
#1

Hi Everyone. Sorry for the long post but I am so lost on what to do.
My dad was diagnosed with schizophrenia when I was 3. My parents divorced and I would spend summers at my grandparents where my dad lived. I remember growing up so angry that he was sick. I didn’t understand and wanted him to just shake it off. I was embarrassed that he acted different than other dads.
When I was 15 I began dating a person my grandfather didn’t approve of so I wasn’t allowed back. Since my dad didn’t drive I didn’t see him again until my grandfather got sick…I was now 40. My grandparents always took care of my dad and now they are gone my family just threw this responsibility on me. It sounds terrible but I don’t know him and don’t have that connection. I love him but my patience is not what it should be for a person with mental health. I have taken him to a dr and got invega which helps but he still has paranoid spells. He lives 3 hrs away so I depend on family to help me but they only take advantage of him. I took over his finances to make sure his bills are paid. I tried to find assisted living around me but I can’t afford it and due to his little disability check each month he isn’t eligible for Medicaid. I am so lost on how to handle this situation and anyone I try to talk to isn’t in this situation so they don’t understand.

How can I let go of my anger and look at him as my dad and not a burden. I feel like crap but I don’t know how to help him. Thank you for listening and hopefully understanding.

#2

Practice…

Nearly impossible as he will, more than likely, always be a burden.

Everyone has their own way to deal, formulate a long term plan (housing, food, meds, docs and so on) that will probably manipulate you for the rest of his life… OR just step back, call adult protective services and let the state deal with him…

Best of luck to you with whatever you decide to do…

#3

Thanks for your feedback. Adult protective services isn’t an option. I am really disappointed in this state. No programs for mental health assisted living but a lot for physical

#4

Is there anything like the Office for Aging that could help?

#5

I am the POA for my son who has schitzo-effective disorder. He first got sick in his senior year of college, but did finish and got an architect degree. He worked for 13 years in a career position making good money, had a wife and a home. His medication was switched in 2015, and he has had over 30 plus hospitalizations since, lost his wife and I had to sell his home. He does not qualify for the regular medicaid but I do have an application pending, now for 2 years. I hired an attorney and he had me take my sons 401K and put in a Medicaid Trust Fund for him. His medicaid to date has not been approved, but if or when it does, the money in the Trust Fund will be for his housing and a car (and whatever else he might need - he is soon to be 40). When my son dies, if there is any money left it will all go to medicaid to cover whatever they paid. This might help you. Contact an attorney. Your father can be granted a legal guardian through the courts to take care of him which would take a lot of the burden off your shoulders. Good luck. You are not responsible, and your father was not in your life as a “father”, so do not be hard on yourself. Seek legal advice. I am my son’s POA; and everything that was for him was paid out of this trust fund. I am also the payee on his SSD and I have to document annually where his money is spent/saved etc.

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#6

I applaud you for getting involved at this point in your life with a parent who really did not raise you and understandably you cannot relate to. It is normal for any of us to experience anger, frustration, sadness, etc. at various times in this journey. It is hard to have patience. But we can learn how to not let those things rule our lives and to find hope. I truly believe there is hope! Finding something that I CAN do is helpful, even when things seemed hopeless. The best thing for me was attending a NAMI (National Alliance on Mental Illness) Family-to-Family class. Then later I started attending a NAMI Family Support group. If you don’t have these options available to you, you can still look at the NAMI.org website for good information. Learning all you can is important. I am still learning after several years and expect that I will always be learning. I am just now reading the book “Surviving Schizophrenia: A Family Manual” and I recommend it. Look through this Forum, also, and try to ignore the negative stuff except to appreciate what others go through, understand that everyone is different, and know that you are not alone. We can encourage each other.

What kind of disability funds does your dad get that is not Social Security? If he is low income and little or no assets except a house and vehicle, he should be eligible for SSI which automatically comes with Medicaid. Could he be eligible for SSDI based on one of HIS parents’ work records (unless he has enough of his own work credits to qualify)?

Another important note is that you must find ways to take care of yourself. You cannot help someone well or for long unless you are well. Many persons on this site seek counseling for themselves. Your employer may offer help through an Employee Assistance Program. You would ask the Human Resources department (you don’t have to give them any details…just ask for a phone number for EAP…it is completely confidential and typically 2 or 3 free counseling sessions).

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#7

Thank you all so much! My dad gets disability and the amount is around $1180/month. He has Medicaid but it’s only to pay the deductible on his Medicare. I called social services to see if he could get any help with living food or anything. They said as a single person the cut-off is 1120/month. I could get him income based housing but the location isn’t the best and I think it would be hard on him. And I haven’t heard good things about group homes. Right now he lives alone around my family where he has spent his life but my family is greedy. He is a lone a lot which sends his mind to strange places. He is staying with me this weekend to get away. I don’t know if it’s federal or NC that has no assistance for mental health but I have hit brick walls every way I turn. It’s very sad to know others are in the same boat.

#8

There are a LOT of brick walls! We have hit them! Stay determined. I find there is information but it is often hard to find. A NAMI support group comprised of volunteers and families like all of us…share what we know. Look up the NAMI organization in the state where your dad lives. It will have additional resources where you can seek information. If you are in the same state as your dad, they will be most familiar with things available in that state. For example, more communities are starting to build “Clubhouses”. I don’t know a lot about it but it is a model for a day center where persons with mental health conditions can go during the day…where they have a lot of freedoms but there are also constructive things they can do.

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