Malvern, PA - March 2005
Dear Mr. Rieder,
Please excuse my delay in responding to your annual survey but at the time I was dealing with more pressing issues.
It's no secret that TBI is a long and hard journey for everyone involved. However, the trials and tribulations of the journey can be lessened or made more difficult depending upon the 'trust & compassion' of the support group providing the therapeutic programs. In the case of the Silk family, we have always touted the excellence of the ReMed program to everyone. This is not to mean ReMed was perfect but rather to say ReMed's imperfection were easily overlooked because ReMed's focus was based upon the principals upon which ReMed was founded. As noted in brochures, ReMed's thinking in the early years were considered revolutionary and your new approach to TBI helped raise the bar to new heights. I mention this because I want you to know I understood your mission when we arrived in 1997 and how compromised you have made us feel during the final year of our association with ReMed in 2005. The compassion and trust my wife Cathy and myself once felt is now entirely diminished. It's almost as if ReMed felt threatened by the fact that my sons' ill health while in the care of ReMed would be construed as irresponsible care giving.
Back in early 2004 my son Chris was becoming noticeably physically ill. He become so weak he was unable to tolerate the drive home for his usual visit every 21 days, something he so cherished. Most noticeably was his weight loss from a high of 190 lbs to a low of 140 lbs and his posture was almost at a 90 degree angle, making it difficult to get around. We also learned of his lost interest doing his usual one-on-one activities and his unusual hibernation. While these issues were consistently brought to ReMeds attention, any satisfactory action fell considerably short of its mark. Frankly, it is hard to believe that Chris's physical deterioration was never seen as a serious medical problem and treated with the utmost urgency. If we did not insist upon an immediate medical exam I fear to think what might have been the outcome.
It was during our doctors' visit that Chris proudly told everyone he had stopped taking his meds. It was not about putting one over on ReMed, it was about Chris feeling physically better than he had in months. Because help was non-existent, he understandably took it upon himself to do what any normal person would have done, he discontinued all his meds. This was a most profound decision by Chris that required all the logic he could gather to go forward with his plan. The joy of knowing Chris's health was improving was soon over shadowed by the reaction of the attending ReMed employee. He didn't display even the slightest joy over Chris's health improvement. To my utter surprise his only reaction was a deep concern about how ReMed would react to the 'MED' news. This reaction by someone who was my sons' primary support at ReMed was simply unbelievable.
Just as soon as I arrived home with Chris, I was greeted with yet another disappointment. I received a phone call telling me how serious Chris's situation had become because of discontinuing his meds. The callers' zealousness regarding the meds almost made me feel criminal. I was made to feel as if my son's health had little significance compared to any medication protocol. What really amazed me again, was the caller's total lack of concern, compassion and understanding of the real life issues regarding Chris's health. During our discussion, tt was obvious, whatever I had to say was of no significance. The caller was pursuing his agenda of medication with vim and vigor and couldn't care less about my Son.
About a month later at a follow up visit with Chris's doctor, I was given what I would describe as a ReMed eviction notice. The document was handed to me without any explanation regarding the content. However, after reading this inept document, I refused to sign the document as requested by the messenger. I certainly am no stranger to any of the ReMed staff and probably have more time at ReMed than all other parents put together. Putting good business aside and forgetting common sense, where was the compassion, concern or understanding of my feelings to discuss this very serious and delicate matter? If after an 8+ year relationship, senior Remad staff members could treat me so disrespectfully what then could I expect for my son.
At the Doctor's visit, we were all told that Chris would most likely have several seizures throughout the year if he were not on seizure meds. Because of the extremely bad reaction Chris had with his previous MED regimen, he was not immediately ready for a new MED protocol. Yes, Chris subsequently had a seizure and ReMed had Chris involuntary taken to Paoli Hospital. Chris didn't want any part of the hospital but was admitted and eventually sedated to coma state for three days. I don't question the right or wrong of the decision to bring someone to the hospital because of a seizure but I can tell you emphatically, a hospital stay when you're sedated to a coma state has no positive effect. It rather has the opposite effect. Three days in bed and continued sedative infusions weakened him to a point of not being able to ever achieve his baseline. After finally discontinuing the sedatives upon my continued insistence, Chris was finally released from the hospital but not without new medical consequences.
A few days later Chris called home at about 10:30 PM complaining about abdominal and chest pains. After Chris indicated to us he would go to the hospital to be checked out we then asked the ReMed attendant to call 911 for an ambulance. Chris was admitted to the hospital and eventually was diagnosed as having pneumonia. When I arrived at the hospital at roughly 1:30 AM and saw Chris resting I told the ReMed person he could return back to ReMed. We didn't hear a word from ReMed until the day before Chris was scheduled to be released and then it was a quick phone call about his scheduled release. However, we did hear from the Recreation director who filled in for the Medical director during a medical emergency. Is this customary? I communicated with ReMed that I would not be available to help with the transfer back to ReMed during Chris's discharge from the hospital because I had to keep a very important personal medical appointment but my wife Cathy would be with Chris. The undue stress that was placed upon my wife Cathy regarding the hospital discharge was inexcusable and unbelievable. Without question, what should have been a simple discharge was made purposely made difficult by ReMed. Even a simple thing like administrating Chris's antibiotic was done carelessly. It was agreed that ReMed would offer Chris his antibiotic and seizure meds separately to avoid the risk of Chris refusing his antibiotic medicine. On the first go around ReMed screwed up by giving Chris his seizure MEDS together with his antibiotics. I thank God Chris didn't refuse his antibiotics after this scenario.
In spite of all that had taken place, ReMed continued their vigorous pursuit of their medication compliance policy with us without any let up. We were even threatened with the consequences Chris might suffer if he became aggressive as a result of REMED restricting his only privilege, smoking. ReMeds vigorous campaign also included offering MEDS at set intervals and invading his privacy every 15 minutes while in his room. We were told if ReMeds aggressive actions caused Chris to react aggressively and his behavior became unmanageable, ReMed would have no recourse but to have Chris involuntary committed to 72 hour program and eventually involuntary discharged from ReMed to another behavioral program. Before pursuing any involuntary commitment I avised ReMed it would be wise to phone me so I could assess the situation and exercise proper action. Needless to say, our meetings with ReMed were not happy ones.
It was obvious there would be no light at the end of the road for us at ReMed. This was not the same program I signed on to help us through our TBI journey. To me the definition of Willow Pond was always ReMeds ability to bend any situation and make it work. Now I only see ReMed as a rigid task master without compassion.
Were we not concerned with all the anxiety associated with moving, we would have transferred Chris to a new home much sooner. In retrospect we should have done the move much earlier. Chris is now 180 lbs, healthy and looking good. He is not on any seizure meds and hasn't had a seizure since ReMed. Chris is now doing things he never even attempted at ReMed. He goes on outings with other clients, even completed an oil painting and is working the computer. Twice each week he even gets a massage and all he say is WOW, great. The home is impeccably beautiful and has a resident chef that cooks a most delicious lunch and dinner each day. I can only say my wife and I are experiencing a miracle. From the enclosed photos you easily see the vast improvement Chris has made since leaving REMED.
I sincerely hope my comments may benefit other ReMed clients. I thank you for your consideration and trust a reply will be forth coming.
Stephen J Silk
CC Scott Peters