Long Distance Caregiving

Caregiving is often times a long distance task. What do you do when you have a parent or close family member who lives miles away that become ill and need your assistance. How does one manage the daily demands, small and large of another persons health care crisis?

No matter the distance, you can be a good caregiver and manage the stress that accompanies it. Here are some tips I adapted from a NIA booklet called So Far Away: Twenty Questions for Long Distance Caregivers:

1. Seek out help from people in the community: the next door neighbor, an old friend, the doctor. Call them and tell them what is going on and make sure they know how to reach you.

2. If there is already an on-site caregiver, identify options to help them if a crisis occurs. Making prior arrangements can make things easier when a crisis does occur.

3. Get a directory of resources and services from a local library or social service provider, and check for updates on these resources. This helps everyone know what is available and you can begin plugging into networks.

4. Pull together a list of the persons prescriptions and over-the-counter medicines, including doses and schedules. This is essential in emergencies and keep the list updated regularly.

5. Discuss and advance directive that states your loved-ones wishes regarding health-care treatment preferences. If he or she does not have one, talk about getting one set-up. Make sure you keep a copy and you know where the original is kept. You should also provide a copy to the physician.

These are a few tips that should help you manage the storm or long distance caregiving. Be gentle and forgiving with yourself and always remember the ultimate goal is to be helpful to the person you love.

If you have tips you would like to share please feel free to leave those in the comments or email me directly.

NY Times Article: Bridging Cultural Gap

I enjoyed reading this article published in the New York Times regarding how culture can affect health disparities, communication and interactions in the doctor-patient relationship, the illness experience and health care outcomes. This is a must read for health care professionals and advocates alike.

http://www.nytimes.com/2009/07/16/health/16chen.html?hpw

Google Syndrome - Patient's Beware

With so much information at our fingertips these days with the internet, even a well educated and self empowered patient can get caught up in what I call "Google syndrome". Google syndrome can be summed up by this defnition "a well intentioned effort to educate one self regarding health problems, prognosis, symptoms and potential outcomes through the search engine Google to the point where everything you read you believe and take to heart as being the truth because you found the information through Google".

Okay, I made up that definition and the term Google syndrome, but I think it illustrates a point I am trying to make. Not everything you read in the press, magazines, or even on the internet can be taken as being the God's honest truth about anything. That is why many organizations such as the Oklahoma Brain Tumor Foundation, American Cancer Society and other health advocacy organizations will typically provide you a list of suggested websites you can visit to find good, reliable information regarding your health.

Please don't listen to just any Tom, Dick or Harry regarding your health. Be selective and use only credible sites that are known to provide reliable and accurate information. There are many good sites avialable for you to use and there are many sites that aren't. You must be selective in what you allow yourself to read and who you allow to influence your health care decisions.

Lesson 3: Go with your Gut!

We all have that small still inner voice that speaks to us when things are wrong. We hear it and feel it but we don't always listen to it. Sometimes we put it off as we are imagining things, worrying or being a hypochondriac. The fact is that voice is our body and spirits way of warning us and all we have to do is listen. You can call it mothers intuition or whatever you want but we have all experienced it at one time or another and didn't listen to it and thought later "I should have gone with my gut feeling".

When my son Cade was diagnosed with a brain tumor he was only 12 weeks old, fortunately we had 9 good months with Cade before the tumor began to spread. It was right before Cade's first birthday and his tumor had been stable for 9 months. We had the monthly MRI performed. I always required the doctor to show me the MRI scans and explain them to me. So I had seen the previous scans and knew very well what the tumor had looked like to this point. The MRI report said that the tumor was still stable and had not changed. But when you looked at the tumor on the MRI film it looked different than it had previously. Previous MRI's the tumor had been kinda fuzzy around the edges and an oblong shape. But this time the tumor was clearly defined around the edges and perfectly round. It looked like someone had inserted a green pea into his brain it was so perfectly round and defined. I questioned the doctor about the difference in appearance and how could he say the tumor had not changed when clearly it had changed. The answer I received was the size of the tumor had not changed it had not gotten any larger. I still questioned the doctor and we went back and forth for 2 weeks until finally they convinced me that nothing was wrong and not to worry. Two weeks later my son Cade began having some symptoms and another MRI was performed but this time the tumor had tripled in size and spread down his spine.

Now my gut/spirit had told me that something was not right with that scan. I am not a radiologist or a doctor but I knew something was wrong. And had I listened to my gut and required the doctors to explore this further with different and more advanced diagnostic testing maybe we could have identified the changes in cell structure within the tumor and maybe we could have prevented it from spreading. MAYBE, MAYBE, MAYBE, who knows?

The lesson I learned from this was to always listen to my gut instincts, my spirit person, my mother's intuition. Who knows your child better than you? Who knows your body better than you? Who knows your husband or wife better than you? The answer is no one knows you better than you, and that is something years of medical training and experience cannot give your doctor.

Lesson 2: Communicate Better with Your Doctor

At the Oklahoma Brain Tumor Foundation I spend quite a bit of time with our patients and caregivers addressing problems they have talking with their doctors. Especially when dealing with a brain tumor you have vocabulary barriers that sometimes make it difficult to understand what your doctor is telling you. Sometimes your physician may talk over your head without realizing it. However, there are things you can do to improve your relationship with your doctor and medical staff that will help them communicate with you more effectively. The following are some tips:

• If you have several health concerns to discuss, let the receptionist know ahead of time when booking the appointment so they can allow more time in the doctor's schedule for you.
• Be sure to tell your doctor about any current and past health care issues or concerns. It's important to share any information you can, even if you're embarrassed.
• Create a “health journal” for yourself on paper or in a notebook, and bring it to your appointments. Keep track of problems you are having, the time of day they occur, did you eat before and what did you eat, etc. This will help your doctor when making a diagnosis.
• Bring any medicines you are taking with you or create a list of all your medicines. Include information about when and how often you take the medicine and the strength. If you are experiencing side effects from your medicine(s), especially if it makes you feel sick or if you think you may be allergic to it. Be sure to include any vitamins or supplements you take.
• If you are being seen for a life threatening illness it is always recommended that you never attend an appointment alone. You should always take a family member or friend along with you.
• Take notes at your appointment or have your family member/friend take notes for you.
• If you have to go alone to an appointment, take a tape recorder to record the conversation with your doctor so you can listen to it as many times as necessary for instructions and information.
• If you are having problems understanding your doctor, let them know that you need further clarification. Tell them you don't understand what they are talking about.
• Never ever leave an appointment feeling lost and not understanding what was said and what the next steps are in your health care.

Understanding the Patient - Lesson 1 - Be there

If you are a friend to someone who has cancer it is your job to help them have a better chance of succeeding in the fight against their disease. In order to do this you have to understand, as much as you possibly can, what they are going through in order to help them. This is going to be the first in a series of lesson blogs regarding Understanding the Patient.

Lesson 1 - Be There!

One common complaint I hear from patients and caregivers is that their friends have abandoned them. They don't call or come by and they just never hear from them at all. Don't be one of these type of friends. Be there!

As much as it may make you feel uncomfortable, and you don't know what to say or how to say it you must be there. You may not like the reality that slaps you in the face but deal with it and be there for your friend. Trust me if you don't you will feel guilt for the rest of your life over it.

You are not expected to have some words of wisdom that will miraculously fix everything or make them feel better about the situation. You are only expected to be emotionally and physically available for your friend. Just be there...tell them you love them, you are scared too, you don't know what to say, is there anything I can do to help you in anyway....be there to hold their hand, lend a shoulder to cry on, take food, go grocery shopping and pray with them.

Just simply be there!

HOPE FLOATS, Again!

We are definitely in a time of change. I have a new found sense of hope for our future, our children's future. I feel like for the first time I can exhale....breathe. Hope is not sinking into a pit of despair any longer....we have been thrown a life vest and HOPE FLOATS!!!! Maybe I am thinking a little to naively, but I really feel as though we have definitely taken a step in the right direction for cancer patients, health care...all of the above.I am working on developing a new Patient's Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let's help HOPE FLOAT! Let's give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and no longer a privilege for the financially wealthy.

Send your thoughts and let's get started! YES WE CAN!!!