The Care Company

empowered caregiving™

Family caregivers often find that managing medical issues accounts for a large part of the senior-care journey. Most seniors have multiple doctors and must see them regularly. For you, the caregiver, it can see seem as if all you do is visit doctors’ offices. It’s useful to understand that, as time-consuming as this is and as frustrating as it can be for you, it is equally or more frustrating for the senior. Each visit to the doctor is one more reminder of the challenges that accompany aging. Be as patient as possible. Block out the time needed and expect to use all of it…and a little more. You will experience less frustration if you don’t overplan and then have to be late for other appointments or miss them completely. Lower your expectation of what’s possible in an hour, and then give yourself and your loved one a break.

Our medical system is not easy to navigate, and more and more doctors are opting out of Medicare. What this means for you is longer waits and less time with the doctor. Gone are the days of home visits (unless you are fortunate enough to have a concierge doctor) and relaxed, intimate conversations with your providers. But shorter appointments leave you with more time. That’s why it’s a good idea, when possible, to visit more than one doctor on a given day, especially if more than one of your elder’s doctors are in the same medical building. This reduces the total number of days in a week or a month you spend dealing with doctor appointments – and the stress that goes with it.

The Care Company website has an entire section dedicated to helping you understand the health-care system, health-care professionals, hospital protocols and other medical matters. Take the time to look it over and become familiar with the information before you need it. This is a challenging time, and the more knowledge and information you have – and the earlier you acquire it – the more comfortable, relaxed and successful you will be in the caregiver’s role.

The Medical Team

It goes without saying that the medical team you assemble is critical to the care your loved one receives. Good doctors make your job easier by providing good care, clear and complete communication, sound advice, and peace of mind. But many caregivers don’t pay much attention to who their loved ones’ doctors are. It’s easy to just “go along” and be passive in the process. But, like any corners you cut in the early going, putting off engaging with your loved one’s doctors early on may cause problems down the road. It is for that reason that we urge you to become a true advocate on behalf of your loved one. Remember: you cannot fix what’s wrong, but you can advocate, and you should never underestimate the power of that role. Doctors are human. They make mistakes. They get tired, they forget and they take shortcuts that can affect your loved one.

Advocacy begins with preparation, and preparation begins with tracking. The Care Company Store has a whole section of forms that can be used to help you create your own caregiver system that will prepare you for doctors’ visits. Among them is a medical information sheet where you can note any changes in your loved one’s condition or behavior. We also have forms for tracking medications, vitamins and supplements, diet and nutrition, and whatever you observe or discover through daily monitoring. Keeping these forms current will prevent you from having to rely on memory when you visit a doctor.

Keep all medical information in a notebook, and then be sure to take the notebook with you to your appointment. Write questions down at the moment they occur to you so that you don’t forget about them. If you develop the habit of writing down questions in advance ensure that you are organized, prepared and engaged at the appointment, and ready to ask away when the doctor or nurse enters the room. Chances are that when the doctor realizes that you are a serious advocate who expects answers, he or she will treat you respectfully and give your loved one the best of him or herself. Doctors appreciate organization and clarity.

It’s important that you know the primary-care physician (PCP); after all, this person is a critical component of elder care. In all likelihood, a team of doctors, each with a different specialty, will be looking out for your parent, your friend or your relative. Generally, the primary-care physician will act as the quarterback of the team of doctors, orchestrating their movements. It is imperative that you trust this physician, because he or she will recommend all the other doctors on the team. Unless you are part of a large medical group that gives you little control over which doctor you see and when, you really need to do your homework here. Having a primary-care physician you trust is the starting point, and choosing well will get you off to the best start possible while making the way forward easier for the duration of the elder-care journey.

By this point, you should have completed all the medical information sheets that are available on The Care Company site. (You can, of course, create your own, but it’s a time-consuming task and you might want to spend your free time doing other things.) Once the legal paperwork is in place, make an appointment to meet with the primary-care physician, either alone or with the senior you are caring for. Advise the doctor that you will be overseeing the care and treatment for the senior, and ask the doctor to bring you up to speed on the patient’s condition.

Doctors have precious little time, and some are not keen about this kind of meeting, but it’s necessary, so be polite but firm in setting it up. Because they’re so busy, they also don’t like answering a lot of questions, which takes time. They’re accustomed to giving information, but usually in modest doses.

The success of this meeting is contingent on your attitude. You must be clear and respectful, and show great concern for the senior in question. Ask for the doctor’s medical diagnosis. Have specific questions written down. You will appear prepared for the meeting, which will help you attain the information you need.

This meeting is going to happen only once. You may be charged for the meeting, as neither Medicare nor supplemental insurance typically pays for consultations; however, this is between the doctor and you. That being said, getting the medical facts and establishing a relationship at this point is too important to be deterred by cost if you have any choice in the matter. In making the appointment, indicate to the scheduling person that you intend to pay for the doctor’s time and that your time is flexible. Be accommodating. Remember, your goal is to acquire important information so that you can reinforce the doctor’s orders and achieve the goal for the best possible care.

Bring a list of all medications the senior takes, and ask the doctor to explain what each is for and what side effects might be expected. You should also ask about any contra-indications resulting from interactions among various medicines. If the doctor cannot provide answers, ask for the name of a pharmacologist who can assist you with this process. (You will need a recommendation from the Primary Care Physician. Do not attempt to find this doctor on your own, because it will be too challenging for you to verify credentials and reputation. Your Primary Care Physician will be able to recommend someone who he/she already has a relationship with.) You may be referred to a psycho-pharmacologist. This is because many times the interfacing of the prescription medications has side effects, which can alter personality. This is rare, but you should be aware of it.)

Pharmacologists investigate how drugs and chemicals interact with biological systems and each other. They need to understand drugs and their actions and effects so that they can be used effectively and safely. Some pharmacologists also carry out research to aid drug discovery and development. A good pharmacologist is an excellent resource, and while Medicare will probably not pay for a consultation with a pharmacologist, this too is a conversation that is well worth the investment. If you cannot meet with a pharmacologist, find a good 24-hour pharmacy that you can consult if you have questions regarding medications. Pharmacists are usually very happy to work with a family, especially one that is doing their due diligence.

Do not be alarmed if the primary care physician is unaware of all the medications that the senior is taking. (The PCP will NOT know all of the medications being prescribed by other doctors because it is out of their realm of medicine. They will, however, be able to recommend doctors with whom they work, thus making ongoing communications easier.)

Many doctors do not confer with one another until someone (you) enters the scene and requests that the primary-care physician oversee the team of doctors, which may consists of a neurologist, a urologist, an ophthalmologist, an endocrinologist, and other doctors specializing in vascular, pulmonary and cardiovascular medicine. The list goes on and on. When an elder is dealing with so many different doctors, there is no way you will be able to keep current with each specialist’s report. This is the very reason why you MUST spend the time finding the right Primary Care Physician to be the point person for all of these doctors. Make sure that all test results, reports or changes in medical condition are sent to the PCP. If you are aware that tests have been performed and you know the results will be sent to the PCP, then you can contact that office to get the results. It is much more likely that you will receive the information you need if you have a safe place to land – consider it your home base.

If your doctor does not respond positively to this meeting, you may want to consider changing doctors. Just because the senior has been seeing the same doctor for a long time does not mean that that doctor has been providing the best care or advice. Take your time to research your options. It is likely that you will be dealing with the doctors regularly, especially as the senior becomes less independent, so a good relationship between you and the doctor(s) is of the utmost importance. A good medical team is vital.

The hospital that the senior’s doctors are affiliated with is an important consideration. You must be comfortable with the hospital, the staff, its reputation, its emergency room, and its location. Do the research. Appropriate hospital care becomes increasingly more important as someone ages or as a condition worsens.

Be sure to discuss with the senior any medical changes you would like to make. Explain why you feel a change is necessary. Again, do the research. Check with friends about their doctors or the doctors who care for their parents. This should not be a quick process; again, taking the time do things right now means saving time and frustration later, and, quite possibly, avoiding medical problems. Interview doctors to make sure that you and the doctor have a good rapport and that the doctor understands your family’s situation. We’re told that we should get three bids before hiring someone to do a job for us. It’s wise to interview a few doctors before choosing, too.

Do not assume that your elderly loved one is going to value your opinion. You must have valid reasons for your decision. If you decide to change doctors, once you find the replacement primary-care physician, schedule a meeting for the senior to have an exam. At this time, let the senior know that you are going to another doctor to get a second opinion. It will be an easier transition for everyone, because, if you recall, change causes anxiety. Even if the change is in the senior’s best interest, there will still be angst. So much of this process, or journey, as we often refer to it, is about what your intuition tells you. Part of being a good caregiver is learning to pay attention to your intuition. If we just get quiet enough, the answers to our questions are almost always within us. If you are serious about caring for your loved one, then you need to be really comfortable with the doctor. Do not stay with one doctor who just because it seems easy. You must be able to communicate with the doctor and his office staff.

Handling Medical News

As months or years go by, a senior’s medical condition will inevitably change. You must decide if you are going to share all medical news as it comes to you. We realize that this is controversial position to take, but it’s important to consider a person’s need for peace of mind. I went through this with both my former father-in-law and my own father and discovered that it’s just not always necessary to share all the “bad news.”

Your decision should be based on several factors:

• Is the senior mentally capable of comprehending medical information?
• Is the senior capable of emotionally processing medical information, especially if the news isn’t good?
• Does the news indicate that the senior’s functionality going to change, and if so, how much?
• Does the news indicate that the senior’s the senior’s routine will have to change?
• Will new doctors or medical procedures be involved in the care process?
• Is pain going to be associated with the change?

You need to address each of these questions before making your decision. If the change is going to be minor, sometimes it’s best to keep the information to yourself. You should discuss the medical change with the doctor and determine together what is in the senior’s best interest. Sometimes it’s best to assume the burden yourself to avoid worrying the senior. Seniors have a lot of down time, and their minds tend to wander to the darkest places of fear and worry.

If you are dealing with a senior who is fully cognizant but ignores doctors’ orders (especially when it comes to taking medications), you will have to be firm. Begin with gentle coaxing. Chances are good that your efforts will be met with a smile, an acknowledgement of what you want done, and a thank you for caring. Once you are gone, the senior will do whatever he wants.

This is when you need to play hard ball. If the senior is simply being stubborn about the new medical protocol, you have to step in. Here’s how:

• Determine what the senior’s goals are. Ask. You may not like the answer, but in order to have an intelligent conversation, you have to ask the question.
• Let the senior know exactly what is going to happen physically or emotionally if the protocol isn’t followed. (For example: “If you don’t take your Lasix, your ankles will swell, your edema will worsen, and the fluid will back up in your body, causing your breathing to become labored.) Of course, you will have done your research prior to this conversation so that you can speak intelligently to the issue. 
• If you don’t get your point across or the senior becomes more stubborn, you might need to seek help from the doctor. An amazing thing happens to seniors when you mention the doctor. This is a generation that believes in the sanctity of the doctor. A doctor’s word is gold.

There is only so much you can do. There is only so much responsibility you can bear and, if the senior does not change, then you should leave it alone, explore all your options, walk away, and broach the subject another time.

Caring for one’s self is a sign of mental well-being. If all signs indicate that the senior is not attending to her personal hygiene, nutrition or medical care, you might need to take more serious steps. You cannot spend your days and nights being the medical police.

Let’s recap:

• Most seniors see multiple doctors on a regular basis.
• Take the stress out of multiple visits to these many doctors by scheduling more than one per day – especially if two doctors are in the same medical building.
• Know the primary-care physician. She is the quarterback of the medical team.
• Set an appointment with the primary care physician to get a complete evaluation of the medical issues you are facing.
• Bring to the meeting a list of all medications the senior takes and notes about any changes you have seen since the last appointment.
• If the doctor is resistant to engaging with you, consider changing PCP. But if you do make a change, get referrals and interview several doctors before choosing one.
• If a major change in the senior’s medical condition arises, weigh all outcomes before sharing news with the elder.
• If the senior does not comply with doctor’s orders, be prepared to take more aggressive steps to help the senior understand the consequences of non-compliance.
• If you meet resistance, ask the doctor for assistance in communicating the message.