I spent a considerable amount of time, months in fact, trying to acquire the pictured Roho Cushion for my wife. I encountered a wide variety of issues that were enough to make me lose all faith in humanity at times and I questioned all of the answers I would receive after the first few weeks of fruitless efforts. Our efforts to acquire a replacement cushion for my wife began last August. They continued all through the fall and the winter until a month ago when things finally came to the point where I had enough.

Perhaps the greatest frustration was the fact that the people I was relying on to walk me through the process were not at all moved or touched by the fact that my wife suffered a lot more when she was not on the proper cushion. Those ulcers once referred to as bedsores are vicious and relentless and never ending……

I learned a lot about the system of Medicare and Social Security medical support for recipients. One of the first things I learned was that the paperwork is endless and if one line or entry was in error, we had to often go back and start all over from the beginning.

My wife’s doctor is not the same one she started with. The doctor she had up until December of  last year and a few short visits before he transferred this year was one of those doctors that will go the extra mile for the patient in their care. The doctor that replaced him was one that I used to go to years ago, and I had quickly moved on to a different medical provider because of his manner and seeming lack of attention to important issues and details in my care. But my wife is very loyal and sometimes too loyal to her current providers so she insisted on giving him a try. There was an immediate difference in her care and her general health. She deteriorated rather quickly when she had an infection. Martin, her former doctor would be aggressively addressing the infection with antibiotics and stepped up wound care. The current doctor would often delay response until the wounds were bordering on septic and sometimes causing a blood poisoning issue to occur.  That would often be immediately followed by an infection that would include UTI and often trouble with Kidneys being stressed and on one occasion a kidney failure for a few days.

The former doctor had written a prescription for her replacement cushion before he transferred to a neighboring town, and when the new doctor was treating my wife, he was not willing to do the follow up paperwork for Social Security/Medicare himself. Before he got around to doing that my wife had to be hospitalized for more ulcers and wound care as well as a Kidney infection that was causing dangerous fever spikes and creating a huge scare for me. Thus, I often alternated between this continual fear that an infection would flare that would require more resources and the frustration of dealing with people who at best showed a complete lack of concern for my wife’s well-being. What made matters worse was that I would often find myself looking at the fact that if she had her cushion she would not be bed bound for more than 22 hours per day and could reclaim some of her old freedom she once had with her wheelchair.

In all of this I learned that old adage that you should not change horses on the wagon in the middle of the stream. The fact that one doctor wrote the prescription and another replaced him and refused to follow through on the first doctors’ extensive notes and findings created quite a log jam in the process of keeping the paperwork flowing smoothly.

What actually worked in our favor was the assignment of an in-home nurse to come every other day and dress and clean the wounds that had formed in my wife’s body. Grant, a male nurse was very efficient and also had an awesome bedside manner, but we found he was also a very strong ally and advocate for my wife as well. Through his help and sometimes his well placed phone calls to the proper people we were finally able to acquire my wife’s cushion. The difference it has made is amazing. She is no longer

The difference it has made is amazing. She is no longer bound to a bed for all but two hours per day and she is able to go visit her son and grandchildren across town without having to rush home quickly so as to avoid aggravating the wounds in her hips and thighs. The opportunity to actually get out and visit for her is a life saver. She goes from being morose and moping and battling depression to being what her son calls a hummingbird or butterfly. a humorous description, I know, but it fits her.

I learned in a very real way, thanks to Grant the nurse that provided in-home care and a few doctors at Presbyterian hospitals in Albuquerque that it is not always who you know but what you know about the system that makes a difference.

After several months of arguing, pleading, cajoling and begging various care providers and medical suppliers of our need for an expedited cushion procurement, I started calling state agencies for assistance, advice and help. I found out from the state Disability affairs, advocate and assistance ombudsman office(Not the official title, but the description of what they can do) that we had certain rights including a fair and ethical treatment of medical and related issues. The information that the official from the state ombudsman’s office gave me agreed completely with what Grant the In-home nurse gave me. I was becoming better informed and better equipped to deal with the issue of the new cushion. But even with all of the facts and information, I was still not able to get the cushion delivered in a timely manner. By this time, it was a full ten months since starting the process. And I had heard every excuse imaginable to explain it. I finally received the cushion from a local medical supply and cut the miles of red tape by simply and firmly informing the front desk clerk at the medical supply that I had talked to the state ombudsman for the disabled and that I was also filing a complaint with Medicare and Social Security. I was given the cushion within minutes. Some paperwork had to be signed and I walked out of that medical supply with the cushion. Months of shuttling between the doctor, the medical supply and doing paperwork at home had finally culminated with the receipt of the cushion. A full ten months after I had started the process.

Maybe some of the things I learned will help others. The lessons learned are as follows.

First, keep the same medical people involved all the way through. Changing doctors midway through the process caused a huge delay and caused an unbelievable amount of additional legwork for me to finally acquire the cushion.

Two, make allies in the medical community. That, of course, requires that you have a real and legitimate need for the medical item or accessory, but if you do, it gives your doctors and nurses more clout. Medicare does cull through the claims and they do vet them for necessity and importance. My wife’s request this time seemed to have been minimized because of a lackadaisical attitude by certain medical professionals. The alliance of Grant, the In-home nurse care provider was invaluable, and I will always remember him with a certain amount of fondness, respect, and gratefulness.

Third, or maybe this should be first, but know your rights. I have had nurses and doctors tell me that they respect the medical bill of rights that determine how they treat a patient. I have heard many different versions of that list of patients rights, but it best can be summed up in the statement that you are or your patient is to receive the most effective care possible at all times. It is not wrong to expect a professional and courteous behavior from your nurses and doctors. Any behavior that does not reflect that standard should not only be noted but should be reported to authorities. Negligence is not as common as some would have us to believe in the medical professions, but it is not entirely absent either. So stay on top of the issues when they begin to be apparent.

Finally, keep notes. If a doctor says something, get it in writing. Demand it be written. I really appreciate this new system Presbyterian has in our area where we can go online to our own medical profile and see all the information for our case or the case of our patient. It is nearly real time in the system that provides my own personal care that it really helps me keep track of any new developments in my healthcare. Notes are important for another thing. I have an extremely good memory and can remember books quite well that I read while still a teenager. Sometimes I think it is a curse. Because when I not only have remembered something that occurred clearly and also have notes to support it, it makes it all the more frustrating to realize a person I am dealing with is contradicting or lying about a past discussion or event. But for those people who have poor memories, the note taking is especially valuable because those very important instructions and directions from the doctor can be forgotten and misunderstood if they are not recorded. And if you don’t understand a specific situation, please be firm and ask. It can truly be a life-saving action. I have had the unpleasant task as a pastor of having been called on to preach a funeral for someone who accidently got the doctors instructions confused and took the wrong medication or did something that did more harm than good.

In wrapping up, something as simple as the above pictured Roho Cushion seems to be not so necessary to the uninitiated in the issues of ulcers and bedsores, but the right cushion can make the difference between a life of constant ER visits and dealing with infections, and the much easier more freeing life of living without those open wounds recurring on a continual basis. In the same way, what seems to be minor in choice of shower chairs or mattresses for the bed of the patient, or the type of wheelchair to use to transport the patient all have an impact on the patient’s general health. Let’s face it, the need for you to be a caregiver for your loved one is proof that there is already an issue with health that is serious and long term. Anything you can do to keep the patient’s condition from getting worse is to be encouraged and done