Caring For A Loved One With Myelodysplastic Syndromes – Part 2: Doctor Appointments
Published: Mar 12, 2010 8:00 am
For many caregivers, visiting the doctor’s office can be one of the most daunting aspects of caring for a loved one with myelodysplastic syndromes (MDS). However, it is also one of the most important jobs you can do as a caregiver. With MDS, two heads are better than one when it comes to asking questions, making sure all possible treatment options are being pursued, and remembering what the doctor said after the appointment.
In some cases, the physical fight with MDS can leave a loved one too exhausted to fully focus on medical details. Making the most of every visit with the doctor can therefore become a caregiver’s responsibility.
Anticipation and preparation can often be the key to a successful medical visit, which means knowing exactly where to go, who to see, why the visit is taking place, and what needs to get done at the appointment.
It may be helpful to keep a notebook at home in which you can write information and questions that you want to remember for the next medical appointment.
Keep track of all medications and dosages, as well as a schedule of treatments, transfusions, or other supportive care. It may be helpful to write everything down, or to bring medication containers to appointments.
Record all symptoms and side effects, specifically those that are new or changing, or that the doctor mentioned previously. Although it is a doctor’s responsibility to always ask about symptoms, if you or your loved one do not mention a symptom, then the doctor cannot know about it or do anything about it.
Stay vigilant about pain management. It is important to remember that in this day and age, your loved one does not need to suffer through pain because there are many ways to manage it. By asking the doctor for ways to manage the pain, your loved one can focus on healing or enjoy a better quality of life. A doctor should always ask about pain levels, but it is both you and your love one’s job during an office visit to keep the doctor aware of any and all aches and pains.
Keep a running list of questions for the physician. This way, you will not forget your questions when you are at the appointment. It can be very frustrating to leave the doctor’s office and realize that you forgot to ask a question.
In addition, collecting and organizing a patient’s medical information to bring to doctor appointments can help you and your loved one feel more in control of your loved one’s medical future. Writing down all questions, concerns, and anything else the doctor should know beforehand also ensures that no one loses track of what they want to accomplish at a doctor visit.
It Is Normal To Be Confused
At any doctor appointment about MDS, there will most likely be a lot of information to absorb. Therefore, it is important to take notes, use a recorder, or otherwise ensure that all information given by the doctor can be remembered, understood, and utilized.
Your primary role as a caregiver at a medical appointment is to make sure that everything surrounding your loved one’s illness is clearly understood or documented so that you can research it when you get home. If you do not understand something, ask the physician to clarify. If a doctor cannot answer questions or concerns to you or your loved one’s satisfaction, ask for other resources to find these answers. You should not give up until both you and your loved one are satisfied with your understanding of the details concerning your loved one’s MDS and treatment.
Know What To Ask
The best way to make sure that you get all the information you and your loved one need to know is to plan what questions to ask beforehand, especially if the appointment is the first following diagnosis. Some key questions to remember include:
- What subtype of MDS does he or she have?
- How severe is the MDS?
- Will he/she need more tests?
- What is his/her prognosis?
- What is his/her risk of progressing to leukemia?
- What are the treatment options?
- Can any treatments cure his/her myelodysplastic syndrome?
- Which treatment would be the best for him/her? Why?
- How will he/she know that the treatment is working? How long will it take to start working, and will it ease his/her symptoms?
- Is the treatment new or experimental, or is it well-tested?
- What are the potential side effects of each treatment? How long will they last?
- Are there any trials you would recommend? Why?
- How much will treatment cost? Will insurance cover it?
- He/she has other health conditions. How can he/she best manage them together?
- Are there any diet or health restrictions that he/she needs to follow?
- Are there any brochures or other printed material that we can take? What Web sites do you recommend?
Additionally, you can also ask questions specific to your role as a caregiver, such as:
- Are there any symptoms I should keep track of?
- How can I help my loved one prepare for treatment?
- What side effects of treatment should I watch for?
- How can I help my loved one feel better during and between treatments?
- Can I be there during treatment?
Be An Advocate For Your Loved One
Above all, it is important for you to be an outspoken advocate as your loved one battles MDS. At no time is this more necessary than when dealing with medical and health care professionals.
Diagnosis was probably the first time you heard the words “myelodysplastic syndromes.” By finding the best MDS specialists or health care teams in your area and investigating MDS treatments, trials, and developments online or through health care professionals, you can help give your loved one the edge over MDS.
Helping your loved one through doctor visits is one of the most important ways you can show your loved one that you are there to make sure he or she does not have to face MDS alone.
For more information about caring for a loved one with MDS, please see Part 1 of the series, which is about making your own health a priority, Part 3, which is about coping with your feelings of loss and grief, or Part 4, which is about understanding your loved one’s perspective.
- Caring For A Loved One With Myelodysplastic Syndromes – Part 4: From A Patient’s Perspective
- Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority
- Caring For A Loved One With Myelodysplastic Syndromes – Part 3: Loss, Grief, And Bereavement
- Guide To Clinical Trials For Myelodysplastic Syndromes Patients – Part 2: Benefits And Risks Of Clinical Trials
- Beacon NewsFlashes – January 21, 2011