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When taking care of a patient or loved one, a caregiver has to change their schedule to accommodate the tasks of caring. This change may affect the caregiver’s free time and they might have to learn to say “no” more than they would like. Sticking to the routine is important, but so are the needs of the caregiver. For example, going to the movies may interfere with the caring schedule. However, caregiving plans, prioritizing tasks, and external support can help both the patient and the caregiver.

Determining one’s limits by making a list of important tasks can make saying “no” easier. Try asking a friend or family member to help with some of the most frustrating and time consuming tasks. If the friend or family member can’t help, there are public and private organizations that can for little to no cost. Many churches and synagogs have their own volunteer networks that can do minimal work for free.

There may be tasks that can’t be avoided and you have to do them yourself, but it will be more relieving knowing that some of the other tasks were taken care of. If you’re going to ask others for help, make sure that you are direct with your statement. Avoiding the main reason, or trying to make something sound better, will only add to frustration and most likely end up with your friend or family member not understanding the message. Communication is key!

Sometimes as a caregiver, your outside-of-care giving plans do not work out exactly as planned. People have errands, and not everyone has the time to cook a nice meal for the family. As a caregiver, try and think of creative solutions to your problems that fit with your schedule and everyone else’s schedule. Even though it may sound hard, staying creative will keep others interested and you’ll have a solution to your problem. For example, if there’s no one to cook the meal, suggest a potluck dinner, or go to a dessert-only dinner, that way people aren’t worried with having to cook and still have time to do what they wanted to do beforehand.

Caregivers should remember sometimes things don’t work out as planned. And when that happens, do not lose all confidence and let it affect your emotional and/or physical health.The best option is to let it go and move on. This will offer a better outcome for the caregiver and the patient.

It’s easier to say no with the help of a support group. The people in the group have been in similar situations and are willing to help you become an assertive and confident caregiver. With help, you will be able to get time to relax and wind down. Plan your social-time around your schedule and around the schedule of who is helping you. In your free time, go read a book, take a walk, etc. Doing this may leave you happy and help relieve stress. This way, when you return to the patient, you’ll be happy and refreshed.

Being a caretaker is a hard and stressful job. But with the help and support of others, you will be able to fine-tune your schedule to something that allows you to ensure the care of the patient AND go out and enjoy yourself.

 

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As a Peer Health Coach with the IPPF, I am often reminded how fortunate that I am to be able to speak with so many individuals who lives have been affected in so many different ways from Pemphigus and Pemphigoid. I am able to take these collective experiences and pass them on to others in the form of recommendations, suggestions and advice. Even more amazing is the fact that the IPPF has four Peer Health Coaches doing this simultaneously!

This year your coaches have collectively worked with over 200 people answering questions, looking for physicians, helping with problems, providing educational information and providing peer support. Your coaches often discover fantastic “pearls” of information and have become great resources for all of us managing our conditions.  To help pass along some of this great information we have created “Coaches Corner”, where your coaches can share knowledge about Pemphigus and Pemphigoid to help you improve.

Recently, I had some one ask me about being a blood donor which was something that I had done regularly prior to being diagnosed and had often wondered if I would be able to do it again. I found that according to the American Red Cross, you are not eligible to donate blood if you have some types of generalized autoimmune disease including systemic lupus erythematosus and multiple sclerosis (Since Pemphigus is so rare it is not mentioned). They also provide the following guidelines:

  • “To give blood for transfusion to another person, you must be healthy,
  • be at least 17 years old,
  • weigh at least 110 pounds,
  • and not have donated blood in the last 56 days.”

“Healthy” means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, “healthy” also means that you are being treated and the condition is under control. Other aspects of each potential donor’s health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured.”

So based on those guidelines, I would not recommend giving a blood donation unless it were for your own use. I would, however, check with the local blood collection agency you are considering just to make sure.

Although I was slightly disappointed with what I found because I was hoping that I would be able to give blood, the knowledge that I gained by doing a little research was helpful. I also found some satisfaction in knowing that I can donate blood to help with Pemphigus and Pemphigoid research. Perhaps that is the best way to donate blood as someday it may lead to a cure!

Thanks for all your support,

Marc Yale
IPPF Certified Peer Health Coach

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What you need to know about living with P/P