Me again. :)
Two basic premises in the life of the family of a mentally ill loved one.
These are absolutes.
Needs, not wants.
Life preservers, that, had our mother not been the buoy for Jeff all these years,
he would've drowned in the undertow of the unrelenting roll of a hard and negative tide, long ago.
Jeff would be dead if mom had not done the heavy lifting for her son. #30yrsRunning #MamaBear
Jeff would be dead if mom had not done the heavy lifting for her son. #30yrsRunning #MamaBear
1. NEED FOR FAMILY INVOLVEMENT
Families usually give up because it's too difficult. Our mom is a hero.
EXAMPLES
a) Social Security Disability benefits:Our loved one is 49 years old. Since age 21, he has had Social Security benefits, based on disability (Supplemental Security Income - SSI, and Disability Insurance Benefits - DIB). Thankfully, our mother worked for the Soial Security Administration Hearing and Appeals Office, so she knew how to help her son. Most families hae no idea how to get their loved ones these benefits.
During hospitalizations of over 30 days, the SSI goes into suspension. Upon discharge, it then has to be taken out of suspension by contacting the Social Security Administration and showing official documents with dates he was inpatient.
Mom has to handle this every time. Our loved one cannot. Where would he keep records? He has no computer, no cell phone, and has lived at over twenty addresses in the last three years. Impossible.When he is inpatient or incarcerated over 30 days, his official Representative Payee (which is mom) must completely RESTART his DHS Medicaid (Soonercare) and his meagre state supplement ($20ish/mo.) If she didn't, he would be destitute, or worse. The job of the Rep Payee is time consuming, emotionally draining, and difficult - due to the need for precise record keeping. When someone else has done it, things like court payments have been late, and money isn't transferred on time. Jeff's life falls through the cracks if whoever manages this doesn't have a vested interest in making SURE things are taken care of.
Mom has had to restart his benefits dozens of times. As well, his Medicare (Federal Health Insurance) gets cancelled because he has no state benefit during these incarcerations or hospitalizations to pay for the Medicare premium. To keep Medicare, his Rep Payee has to use his small SSDI money to pay to maintain coverage.b) The Treatment Advocate law:Designation of Treatment Advocate under Oklahoma Statute 43A O.S. § 1-109.1.In 2006, mom was asked by one facility if she was her son's treatment advocate. The family had never heard of this, prior. Since, the experience throughout the state has been, this statute is not recognized nor adhered to. Facilities do not freely offer the family this form, so families have no idea they have this an an option to help their loved ones. When mom presents the "Designation of Treatment Advocate Form," each facility says something like, "we have our own form that you will have to sign."A year ago in January 2017, mom and I worked with Senator Joe Newhouse in rewriting the DTAF (our acronym) for it to be UNIVERSAL, but the legislature decided not to approve or even spend time on this. The goal was to have it downloadable from ODMHSAS so families would not only know about it, but families and facilities would have easy access to a universally recognized form.We can only hope this will be revisited in future legislative sessions.It's impossible for someone with chronic mental illness to navigate a disjointed system without caring advocates offering tangible assistance.
We need to streamline how a willing advocate is able to help their loved one. The job is too much for ONLY the family. The family needs support.************************************************************ ***********************
2. NEED FOR ENHANCED CARE
#NeedNewHospitalsIADL Criteria (w/ experience examples):"Instrumental Activities of Daily Living" (IADL) - Activities related to independent living which includes preparing meals, managing money, shopping for groceries or personal items, performing light or heavy housework, doing laundry, and using a telephone.These are normally associated with elder care websites, regarding dementia, etc., such as: https://www.kindlycare.com/activities-of-daily-living/a) Companionship and mental support:"This is a fundamental and much needed IADL for daily living. It reflects on the help that may be needed to keep a person in a positive frame of mind."Our loved one has zero friends. He lives a solitary life. And though his routine is to get out every morning, on foot, and interract with the world, his only significant relationships are his senior parents, both handicapped, and his two sisters that live away from Tulsa.b) Transportation and shopping:"How much a person can go around or procure their grocery and pharmacy needs without help."Our loved one has never owned a home or a car. He has been homeless over half his life. He asks mother, who lives 100 miles away, to come to Tulsa whenever he is discharged from inpatient facility or criminalization, so she can take him grocery shopping. Mother also helps him ascertain a monthly bus transit pass.
c) Meal preparation:"Planning and preparing the various aspects of meals, including shopping and storing groceries."Our loved one can manage to microwave a prepared meal. He can make a simple sandwich. He eats canned food, cold. It's best that he have a place to live that prepares meals. This is very rare. He has utilized Crossroads Clubhouse in Tulsa, which offers meals for $2.00, and encourages involvement in work tasks. https://www.crossroadsok.org
Nutrition is key. Having healthy meals is a necessity for a healthy brain.
d) Managing household:"Cleaning, tidying up, removing trash and clutter, and doing laundry and folding clothes."Mother helps him by coming to Tulsa to take him to the grocery store. She has always helped him clean his subsidized apartment(s). She allocates his money to hire others to help him do his laundry and clean.
Jeff's body is older than his years. He's in too much pain, distress, and he's too weary from walking around all day, every day.e) Managing medications:"How much help may be needed in getting prescriptions filled, keeping medications up to date and taking meds on time and in the right dosages."This is a complicated issue. Sometimes Programs of Assertive Community Treatment (PACT) teams refuse to assist.
t would be helpful for him to have a prescription delivery service. He would need help setting that up and maintaining it.f) Communicating with others:"Managing the household’s phones and mail and generally making the home hospitable and welcoming for visitors."Again, complex. Due to delusions that aren't cured by medications, our loved one has thrown his cell phone away many times. For this reason, the family cannot put him on a cell plan, because they are binding and would still have to be paid. Therefore, our elderly father that lives in Tulsa (age 82 and depends on a walker) will take him to get a free government cell phone. Our loved one doesn't have money to pay for such "luxuries" and the cords/accessories even moreso. His lifeline is speaking to his parents every day, as well as his sisters.
What will he do when his parents are too old and unable to do these things for him? We are starting to face that, now.g) Managing finances:"How much assistance a person may need in managing bank balances and checkbooks and paying bills on time."A person with SSDI and SSI may have a total gross income around $750/month. He has been homeless many times, and truly has lived on nothing, at times. Mom is his official Social Security Representative Payee, so she reports to the SSA how his money is used, yearly. On the daily, she uses a banking app to transfer small "meal" amounts, so he won't use up all his money at the beginning of each month. Before apps, she used to mail him a week's worth of daily checks to cash for meals.
*A long-term facility with a low-stress and serene environment.Managing his life, as our mother has to do is more than a full time job. He cannot do it on his own.************************************************************ *********************** Summary:When the old psychiatric hospitals started closing fifty years ago,replaced by Community Mental Health Centers,homelessness and criminalization ensued.We need a new kind of care facility,with the goal of treating the root cause,rather than only the "medical model" of forced prescriptionswhich does not cure delusions or paranoia,and is but a bandaid to curtail symptoms.RX side effects may cause the very symptoms they are prescribed to help.Every person is a valuable individual,and should be treated with care and compassion.NEEDED all across the USA:
* Individualized nutrition.
*Trauma counseling/psychotherapy, individual and group.
*Family involvement and support.
*Education at all levels, e.g., GEDs, college courses, iner alia...
*Therapies: music, pet, exercise, equine, aviary, etc.
*Testing for individual DNA/medication tolerance, and other medical proofs like MRI.
*Initial medical work-up of first-episode psychosis, to rule out possible mimics, preventing damage.
This would actually save money, but that's for another day.************************************************************ **
Where there's a will, there's a way.
Jackie Welton DiPillo.
For my brother.
