Photo credit: The Atlantic Magazine
(2-3-20) An email from a mother raises two important issues. What happens when you need medications to remain stable but those same medications are hurting your overall health? How do aging parents protect the future of an adult child with a serious mental illness and intellectual disabilities?
Dear Pete,
Our son lives with us, and always has. In his early teens, he was finally diagnosed as having Bipolar-1 disorder although we are fairly certain he had been struggling with its onset as early as 2nd grade.
His condition became progressively worse with age. By his late 20’s, after several very traumatic and severe manic episodes, he spent a week in a local hospital’s behavioral health unit in Virginia. I spent weeks looking for a community support system and searching for a psychiatrist after he was discharged. My search was difficult because of HIPAA. I was told our son was over 18 years old and, therefore, it was up to him, not us.
Desperate, I finally convinced a sweet, compassionate, Office Manager named Chris to plead my case with Dr. James Dee, who was not accepting new patients. I’m sure Pete that you recognize that name because he is the same psychiatrist who treated your son, Kevin. He was the best psych-pharmacologist we’ve encountered and we were devastated when he died recently. Dr. Dee got our son into our local Virginia Psych Rehab Services Day Treatment Program, which he attended for seven years. Dr. Dee helped our son come to terms with his mental illness and learn essential coping skills – especially anger management and the importance of getting therapy and taking meds.
Early on, we met with a lawyer to inquire about legal guardianship to protect our son when he experienced a manic state and was unable to make appropriate treatment decisions.
What happened?
What we were told is that you can pay a lawyer a lot of money and get guardianship but a judge can assign guardian ad litem (a total stranger) to make decisions and that stranger could totally take you “out of the equation.” The lawyer asked: How does that help your son and you? We didn’t pursue it further.
Fortunately, the mood medications that Dr. Dee prescribed helped our son remain stable. We are lucky that medications along with therapy help control his symptoms. For him, stopping the mood meds is not an option. We’ve tried it with always tragic results. Unfortunately, we discovered there can be negative health ramifications from long-term use of mood meds. His regular doctor noticed and couldn’t explain seriously high Cholesterol and Triglyceride levels.
We wondered if his mood meds were responsible but there was no evidence to support this. Thankfully, his doctor brought his cholesterol and triglycerides under control with other medications.
Health problems didn’t end there.
Shortly after that, a sudden spike in his Bun and Creatine levels on his routine bloodwork indicated that he only had 50% kidney function. That prompted three nephrologists to question the possible health ramifications of long-term use of some of the mood meds that he was taking. They never could definitively agree (with each other) whether the loss of kidney function was caused by genetics or the long-term use of his Lithium mood meds. But, to err on the side of caution, it was mutually decided that he should change meds and reduce, and eventually eliminate, the Lithium.
This began a new rollercoaster of manic and rapid-cycling episodes. There were days where he could flash between serious fits of manic anger and ten minutes later, he would break out into heart-wrenching episodes of sobbing where he openly questioned why he was born.
In 2014, my husband and I retired and we moved with our son to a small town in Western, Pennsylvania. Now in a new state, we literally had to start all over again in many ways. In addition to finding new doctors and a psychiatrist, Social Security cancelled our son’s disability and Medicaid coverage without explanation and we had to reapply twice before his coverage was reinstated. We had discovered that the rules in Pennsylvania could be different from those in Virginia.
Back to Square One
Fast forward to today. The most recent of our son’s severe manic episodes happened as we were in the midst of modifying his mood meds because of ongoing health problems. These major manic episodes resulted in familiar scenarios: calling Crisis Care for Assistance, the Police, and EMTs and ended with several stays in a behavioral health unit.
In addition to his chronic kidney disease, he had multiple and frequent kidney/urinary tract infections (UTIs) which the Urologist eventually determined was caused, he said, because of a not well recognized side-effect of one of his other long-term mood meds – Tegretol. He told us the bladder becomes lazy and does not fully empty – causing the development of the kidney/UTIs. The recurring UTIs required him to wear a Foley catheter for several months straight and after that (to) having to frequently self-catheterize.
Twice last year, as a result of the chronic UTIs, he developed Sepsis (which can very quickly become life threatening if not recognized immediately). These infections resulted in three separate admissions to our local behavioral health unit because he became manic (which each time was exacerbated by the ongoing Kidney/UTIs and the Sepsis). Is there a connection?
Unfortunately, he can go from a normal temp to 104.5 degrees so quickly it is frightening and he does not seem to recognize (on his own) when these health issues are beginning.
What happens when we are gone?
Our son needs medications. He needs someone – us – to help monitor his health. What happens to your “adult child” when the parents “age” and they can no longer take care of them?
This is a serious question for all aging parents. We recognize that our son needs (and will always need) additional healthcare support with med monitoring, ordering and administration (filling pill container) and general medical health care guidance. We do not believe this would happen if he was living independently or in a regular group home setting.
It has been a long journey for our oldest son and for us – about 40 years to be exact (beginning when he was about 8). But we are proud of him and happy to have taken that journey together. And while that journey has been a long and difficult one, planning for his future “without us” is now proving to be our most difficult challenge.
I turned 70 and my husband turned 74 last year. We are desperately trying to “work the system” in Pennsylvania to understand what our options are and how to prepare for and plan for our son’s future (a future when we won’t be around to take care of him).
We didn’t want to wait until there is a family emergency situation when we would have to address such things under duress. And as you know, no one will look after our “children/family” as well as we do….AND the system is broken. So, while dealing with a family member’s mental health issues is challenging in itself, we found planning for their future without us to be our biggest challenge yet.
One step forward: An Advance Psychiatric Directive
Last year, we accomplished one very positive step. Pennsylvania has a “Mental Health Advance Directive for PA (MHAD-PA).” Our son signed the MHAD-PA and it gives us authority to help him make necessary mental health care decisions. I believe it would be good if all States had a similar document available. If anyone is interested this directive, you can read more here.
But the verdict is still out, (with us,) as to how effectively this Advanced Directive is used by hospitals (or can be used).
We have learned that if the patient is over age 18 and has checked themselves into a hospital’s behavioral health unit, even with a signed MHAD, it is still like pulling teeth to get the hospital staff to share information with the parents about the patient’s care because of HIPAA. This creates a huge gap in the process – especially when a patient is released and expected to order and take their meds and make it to the necessary follow-up therapy appointments etc.
Without a strong advocate to guide them, this may not happen. And if the advocate is not part of the discharge process, ask yourself how many patients will get the follow-up care that they need? Heavens, this begs me to shudder at the thought about what someone like our son might do without advocates like us on his side? It is also scary for him because he knows that he would be left without an advocate. You can’t believe how many times we have been going into or toward the hospital to visit our son and saw a lost soul walking out of the hospital with all of their possessions in the brown paper bag that are used for clothes in the BHU. So, heart wrenching.
What happened when we sought advice?
We contacted local County agencies for advice about our son’s future without us. First, it took me going through three levels of personnel until I reached someone (finally, a Supervisor) who understood what I was requesting. She agreed to meet with us to explore what possibilities “might be available.” After our first meeting, it became clear there is no straight answer. Housing options are severely limited in our area. However, we were told if our son had an Intellectual Disability (ID) or fell into the Autism Spectrum, he’d have a better chance of being accepted.
We were told that our son needed to qualify for a State Funding Waiver (of which there are 3 different levels or increments of funding) to obtain housing. None of the waiver levels is easy to get and those available are very limited in numbers. We found out that the highest level of waiver funding is absolutely “required” for the kind of housing and additional assistance our son would require. In order to have our son “possibly” qualify for housing in the future, we were told he would need to be retested to document the severity of his illness. Our son will be 48 years old this Spring and it has been years since he has been tested for learning disabilities and other problems that would help him qualify.
Our son agreed to be tested and in addition to the Bipolar-1 diagnosis, our son met the ID criteria and was found to be on the Autism Spectrum. These conditions were not even in our vocabulary back when our son was young in school. Back then our son tried to finish his junior year of high school twice and quit. He was in the throes of his Bipolar-1 disorder and terribly manic at that time. Unfortunately, he tried Adult Ed, GED and the American School Correspondence Course without success. In spite of our encouragement, he has never driven a car and has been unable to maintain a job for more than very short periods of time.
Our son is a good guy. He knows and understands his mental health condition (in as much as anyone can understand it, and wondering why it happened to them?) and he knows he has to take his meds. His experiences at the Day Treatment Center helped with that. But he will not order the mood (or other necessary) meds or fill his pill container. Honestly, I am pretty sure he could not manage his meds on his own. If we have not filled his container, he will say….” Hey, Dad/Mom, I need my meds.”
We are now going through all the motions needed to apply for the “highest level” of State Waiver required to allow him to be eligible for the assisted housing he would need if there are any units open. Suffice it to say, he could not have undertaken this complicated, application process on his own.
Lack of services: Someone has to die before there is an opening!
I don’t think the problems we encountered are isolated to Pennsylvania. There does NOT seem to be an easily understandable track for getting a person on a waiting list for housing for the Severely Mentally Ill (and that housing is extremely limited if you do get it.) For someone such as our son, if he qualifies, we were told the waiting list is long to get an ID waiver and there is about a two year plus wait “to get on the waiting list” for an Autism waiver. Sadly, someone has to die before another person makes it onto one of the waiting lists or gets a waiver. We asked officials what would happen to our son if something happened to us before an opening appeared. We were told that, unfortunately, our son might have to become HOMELESS for a while.
Sadly Pete, not much appears to have changed since you wrote your book. Our jails have become our new mental hospitals (only you don’t get the care you need in there). It is so disheartening and scary. Our society has seemingly taken more care in recent years to try to help those individuals with intellectual disabilities and/or Autism and forgotten about the needs of the severely mentally ill. They should all be treated the same and on the same level as any other medical problems. Since our son now has applied for the additional ID and Autism designations, we pray that the Bipolar-1 diagnosis will not impede our son from finding adequate housing under the ID or Autism authority.
We will continue working to protect our son. Meantime I pray a lot, ask for Divine guidance, and we try to help others and try to give back and pay it forward; hoping that someday someone might do the same for our son if something goes haywire and we are not around to help him. We live each day as normal as we can and we try to help others by volunteering at local missions and homeless shelters. We return from those trips always fearful how easily our son could become one of the men or women who we serve.
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