News, Information and Ideas on how to deal with hearing loss in a hearing world. Plus a few other topics!
Just when you think that you know what you are doing, the game changes. As we started growing into our roles of the Elder Care World, we found large pieces of our puzzle missing. While your first instinct is to go to the source and try and get the answers, we found that most of the time, there was a lot of stuff that we weren't being told.
We would ask Mom, but also learned quickly, that her world consisted of just trying to get her shot at using the shared bathroom. We also learned that we needed to keep her world as stressfree as we could. So, we started to document what we were told and kept asking for actual copies of charts and rehab notes. Unfortunately, we were not able to always get these things. While you can blame the parties involved, you also need to navigate your way to finding the answers and information. Here's one of the ways that we were able to bypass the holders of the keys and still find out what was going on.
If at all possible, try and establish a positive relationship with those that are in the know. In our case, we had some fantastic CNA's as well as a couple of really good nurses that had direct daily contact with Mom. You first have to figure out who's really there for the right reasons and then see how open they are to actually communicating and trusting that you won't blow their cover. We had some family members of other patients tell us their tricks and some of them were pretty humorous. Once you realize that all of you are in the same boat, you grab your life jacket and start swimming.
You get to a point where you also realize that you can't react to every little thing. Believe me, in our case, this took a while. After all, your primary responsibility is to make sure that your parent is being taken care of. When you see how much it's costing them, you sometimes wonder who came up with this scenario. Luckily, for us, I was able to spend over 40 nights in local hotels over a period of 4 months and witness how all of this works. It was exhausting and much time was spent just trying to figure out the best way to achieve the desired result. Add in the fact that Mom would let us know what was not working and the emotions of the whole thing can lead you down the wrong path. When you have to deal with trying to track down little things that go missing in her world and then deal with making sure that the appropriate medical care is really being done, it will drive you nuts. Everyone has their own opinions and agendas. Including the family members that are involved. We looked at the options of where she could go were, but also had to take into consideration that she had lived in this community for over 60 years. At what point do you decide to upset their world in order to make yours more livable?
One of the best tricks that we finally found after months of frustration when it came to just exactly what was being done to or for her was the Medicare.gov website. Mom gave us permission to log in and gain access to her medicare claims. I did call Medicare to see what we needed to do in order to get access and was told that even though we had POA Healthcare and were Trustees of Financial, Medicare will not send any mail to our address since they use the patients' latest tax return via the IRS to establish the correct address of where to send claim information. Really? It was on my list to take her to a Social Security Office and get her address changed for all mailing to ours, but, when you are dealing with having to drive 30 miles to the nearest office (again, remember, we are in a rural area!), you find reasons not to venture on this journey. Mom, at this time, had broken 3 bones and was just recovering from major hip surgery to repair that area from her latest Fall at the nursing home. She was already in a fragile physical state and didn't need to be loaded into a vehicle for another trip.
At the time, I also thought that we were probably weeks away from her being mobile again. So, our decision at that time was to put it off until she was better. Little did we know at that time, that our window was closing due to the upcoming health challenges she would face. We opted instead to have all of her mail forwarded to our house in Wisconsin. After about 4 months, we received a letter from Social Security as well as Medicare that they were informed by the Post Office that her mailing address had changed. Thus, we would now start getting these summary updates on the claims. A new way to fix the problem!
By getting on the Medicare Website, we were able to see claims that were filed within about 2 weeks of something being done to Mom. Once we got over how expensive some of this stuff was, we started to learn how to check the billing codes to ensure that whomever was doing something to her wasn't trying to overbill her. This is another area that you will spend hours looking at. Get a cup of coffee and plan on at least 10 hours a week if your loved one is hospitalized, getting therapy or residing in a long term care facility. There are great websites online that will walk you down the billing codes world. Of course, for every one that you find to be questionable, you will have to contact the facility or company that sent it in and request an explaination. More time spent on not being focused on your parent. At this time, Brian, his sister and myself started figuring out who was going to be responsible for doing what. It was now too big of a monster for just one person to take on. Now, you know why you need to be keeping those good relationships going with the family members. It only takes one of them to upset this apple cart or decide that they don't have time to do any of it. Thus, you see the emotions and backlash come out within the family circle. In our case, we decided that we were not going to go down that road. Besides, none of us had time to even think about how we really felt when it came to who was doing what.
We learned a more complete story of just what was being done (or not being done) to Mom via all of these claims. We saw claims from medical professionals that we had never heard of and wondered why we weren't even told of their existence. If you can't get people to explain just what they did or why to you, don't pay the bill! This gets their attention and they will usually then take the time to let you know why they are in the long line to get paid. Once we were able to contact all of them via our info. from the Medicare Website, we were able to give them our address so that they could start sending the bills to us. If they sent them to the nursing home, Mom would just put them in a drawer somewhere and forget to tell us that she had received them until weeks later. More communication is needed when it comes to what mail your parent is getting while a resident in a facility. It's just common sense to know that if the return address is a medical facility, the family should probably be sent the letter. Right? This happened to us in 3 different facilities in 2 different states over a 6 month period. Amazing.
Our most frustrating bills/claims were from ReHab. You know that they have to send in 'progress' forms in order to continue to get the medicare payments. We were not able to get copies of these 'progress forms' at one place until we moved her to another facility. You know that the elderly patient only has 100 days of medicare coverage for Re-Hab. We didn't fully understand this until late in the game. Another error on our part based on the fact that Mom is now on her 5th broken bone and just got done with another major ortho surgery. We also didn't know that PT, OT and ST are billed in 'units'. Each unit is 15 minutes long. A patient can literally be signed up for Physical Therapy, Occupational Therapy and Speech Therapy for 3 hours a day. Start adding up these costs after the 100 days benefit period is over and you find yourself wondering who is making these decisions and why aren't they responding to your questions. Good Luck! Don't get me wrong, there are a lot of advantages to a lot of patients to participate in the Therapy programs. But, for some, common sense needs to kick in and the realization made that it's not in their best interest. Luckily, for us, Mom made the decision.
Mom made the decision after her last broken bone a couple of weeks ago here in Wisconsin, to stop all PT, OT and ST. It was quite obvious that once they got her back up to using the Walker with assistance, that this would increase her potential to fall. Add in the fact that Mom is determined to do things her way and that also adds to the problem. Even if a Call light is within reach, some elderly will not use it. The cycle was glaring, the observation to all of us was late. Another lesson learned. You also need to watch out for this in the hospital setting. Her Ortho surgeon followed protocol and ordered it. We tried to call and talk to him and could not get a response until almost a week later.
Even if the patient has an enacted POA for healthcare, they will tell you that if PT, OT or ST goes to the patient and asks them if they would like to try moving a bit, if the patient says yes, off they go. We resorted to writing her wishes of no therapy on the hospital room board and they still took her if we weren't there to intervene for her. Nothing like going to the PT dept. of a hospital and announcing that you are there to pick up your Mom who has refused all PT. Took me a few minutes to find her and as I was getting her into the wheelchair for the trip back to her hospital room, the PT person acknowledged that they had seen the note on the board, but they asked her anyway if she'd like to go move a bit and meet some new people. Of course, she said yes!
Again, no one ever called our phone number that was up on that board also. I've done a search on Physical Therapy websites for articles on how to get elderly to participate in therapies. Consumers should read some of these. The antics used to get the person to agree to go are in my opinion, not doing the right thing. Again, the bottom line is money. Having a PT, OT or ST dept. within the facility is a guarantee of thousands of dollars for their bottom line. When you see how much money Medicare spends in this area alone, it's no wonder we are in the current situation that we are. There needs to be more oversight on how these funds are spent and what the advantage to the patient is based on their physical state and prognosis.
We've had pretty good luck with most of the hospital nurses. Once they realize that you really are concerned for the patient and they've brought you in yet another change of sheets for that sofa that you've been sleeping on the past few days, they are usually pretty good about letting you know what is going on. Just make sure that you are talking to a real nurse and not a student that is doing their clinicals in the hospital. We all knew to keep an eye on what IV bags were hanging on the pole for Mom and if a new medication was added, we kept up with what it was and if there were any side effects that would happen to her based on what else they were giving her. When she broke this last bone (again due to a fall while using the walker and not pushing the call button), we found a week after discharge via the medicare website that there was a total of 7 different doctors that had been in to see her. Surprise! I'm now in the process of calling each one of them to find out why and how exactly I'm supposed to get a non-transportable person to their offices for all of these follow up appointments.
We did come up with a plan to address this. I checked with her long term care nursing home that she was tranferred to due to her new medical needs to see if we could utilize their physicians that were either part of their staff or their Medical Director. We've learned that yes, we can have them contact these doctors and coordinate Moms' care by communicating with each other and sharing lab results that can be done 'in house'. Needless to say, since Medicare will not pay for private transport to all of these places, this is a good solution for Moms' current situation. At least, we think it is. Next week, it could all change again. Depends on what happens next. Don't you just love surprises?
Have a great week!