Building Your Support Team

Once you are diagnosed with a Chronic illness, life comes at you fast. There are tests, doctors, medications, procedures, treatment, etc., to be discussed … decided upon … and juggled. And the best way to manage it all is to build a “Support Team”. But how does that work? Who makes the cut? Let’s talk about that …

 

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Family and friends can be wonderful things. But, in reality, not all families provide strong support systems and not all friends are up to the task. This is your health that we are talking about. Anyone with a Chronic illness will tell you that managing your condition is vital. Your privacy is also involved. Which brings us back to who makes the cut:

  • Doctors are a given.
  • Disease Information. This will help you to make decisions & build your team.
  • Therapists and/or Nutritionists may be needed to get you started or even long-term.
  • Best Buds, i.e. spouse, partner, family, friends, a neighbor, or even a co-worker. People you can count on to help you emotionally and/or physically. This should be  dependable & responsible individuals. They should also know how to practice discretion. If you have more than one in your life … “Yea!”
  • Support Groups can be found in most areas — even online (hint, hint, hint). These are very beneficial if your Best Buds are limited or not living close-by.
  • A Good Pharmacy & I lean toward national chains. If you forget to pack a prescription, lose one, etc., it’s easier to get it replaced. Most offer mail-delivery, too.

Building your team may sound like a daunting task, but it’s not as difficult as you may think. Specialists and surgeons will be referred, if needed, by your physician. This is also true for therapists, nutritionists, etc. Your physician can provide information about your disease, too. And there’s a wealth of good information on sites like Mayo Clinic, WebMD, CDC, etc. Your “Best Buds” are the easiest to pick, because you know them and they know you. You also know their strengths and weaknesses. Some will be better for a specific task than others. So, talk to them. Discuss your condition as well as any help you may need, i.e. transportation, errands, watching the kids for a couple of hours, etc. Support Groups may be of interest to you, or they may not. The choice is yours and depends solely upon your needs and preferences. A good pharmacy is something that you don’t really think about, until it becomes a constant part of your life. If you don’t have one, now is the time to locate one. With any Chronic illness, you will need it. This is your new normal.

It’s a lot to take in. I know. Once diagnosed, you can easily feel overwhelmed … scared … frustrated … depressed … even angry. That’s why your support team is so important. Together, you can and will effectively manage your condition. Millions do so, every day. Last but not least, try not to let your imagination get the best of you in the worst of ways. Don’t worry yourself over things that may never happen. Don’t allow worst-case scenarios to keep you awake at night. Cross that bridge, when and if you come to it. You have better things to do, than dwell on the negatives. Prioritize. Focus. Embrace optimism. And live!

 

Reference Links:

https://www.mayoclinic.org/diseases-conditions

https://www.webmd.com/

https://www.cdc.gov/chronicdisease/about/index.htm

https://www.psychologytoday.com/us/groups/chronic-illness

https://medicalxpress.com/news/2018-07-groups-boost-health-chronic-conditions.html

http://www.ihi.org/resources/Pages/Changes/SelfManagement.aspx

https://medlineplus.gov/ency/patientinstructions/000602.htm

https://www.caregiver.org/resources-health-issue-or-condition

8 Ways to Build a Support System When You Feel Defeated and Alone

*Photo by Sheri Hooley on Unsplash

Taking Care Of The Caregiver

When a person is diagnosed with a Chronic illness, focus naturally centers on the patient. This is necessary, for proper treatment and disease management. While most patients have a Support System (or should for best results), many will at some point require a caregiver. This individual, whoever he or she may be, is an essential part of that patient’s life and a vital part of their disease management. They are also, often times, neglected. And that’s an unacceptable risk. Which is why it is imperative to take care of the caregiver …

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Make no mistake, there is nothing easy about the task. Care-giving can be very difficult. It’s mentally, physically and emotionally challenging. I have answered the call, twice in my life. At age 30, I was my father’s caregiver when he was diagnosed with Stage 4 Lung cancer. At 48, I was my mother’s caregiver when she was diagnosed with a very rare cancer (Non-Hodgkin’s Lymphoma Primary to the Bone). Both were extremely different experiences, despite the fact that both of my parents had cancer. Never think, for a moment, that previous experience prepares you to be a caregiver. It does not. Each patient is unique. And each will require different levels of care. When I reflect back on both of my care-giving experiences, I am reminded of a quote from the Charles Dickens novel A Tale Of Two Cities“It was the best of times, it was the worst of times.” By that, I mean that there were special moments that I will forever hold dear in memory. But there were also times that were heart-wrenching, scary, overwhelming and physically/mentally exhausting. That is care-giving, in a nutshell. Yet, if I had to make the decision again, I would do so. But that’s just me. The responsibility isn’t for everyone. And there is no sin in admitting that. 

If you are a caregiver, or considering the duty, take a moment to reflect upon the demands of the position. And by all means, take preventative action for your own health. No caregiver, regardless of age, is immune to stress … fatigue … or depression. In fact, I would wager that a caregiver is more vulnerable. Why? Because a caregiver naturally puts his/her needs, on the back-burner. As a caregiver, the priority must be the patient that he/she is caring for. So, caregivers often neglect what their bodies need. But if you allow your own health to decline, who is that really helping?

When caring for my dad, his Hospice nurse gave me some priceless advice, “Do something for yourself, because he needs you.” Nancy was so right. It can be once a day, for 30-60 minutes. Or possibly, it’s just once a week. It doesn’t matter which you choose. If you are a caregiver, do something for you, i.e. a massage, a yoga class, a walk around the block, a Bible study, an art class, etc. Indulging in a little “Me Time” may feel a bit selfish, at first. Yet it is vital to keeping you healthy, relaxed and mentally sharp. So, get out and indulge yourself. Then, you can consider these additional tips:

  1. Get some exercise. Even in regular, small increments, it can boost your energy level. Exercise also reduces stress, helps you maintain a healthy weight, etc.
  2. Eat healthy. This too will give you more energy. Eating healthy can help prevent other health problems, too. Also remember to snack healthy.
  3. Don’t Forget How To Laugh. Laughter is good medicine. Try to find some humor in your day-to-day experience as a caregiver. Share a laugh with the loved one in your care (he/she needs joy too)!
  4. Watch-out for depression. The demands placed on you as a caregiver can be difficult and stressful. Stay vigilant. Talk to your doctor, if you think you are experiencing symptoms, i.e. sad, anxious, anger, feeling helpless, irritable, weight loss or gain, sleep issues, difficulty concentrating, etc.
  5. Takin’ Care of Business. Remember that retro phrase? Well, it’s good practice. Balance your checkbook. Pay bills. Work when you need to. Save for a special outing, anniversary, or trip. It’s good for both of you!
  6. Keep Your Dr. appointments. If you’re sick, you won’t be able to do what your loved one needs. So, visit your doctor & dentist regularly. Get your lab-work, or flu shot. Your good health is the fuel that keeps this care-giving engine running!
  7. Optimism is key. Refresh your mind, every day. Yes, you have limitations. We all do. So, let go of that guilt. Acknowledge the job that you’re doing. It’s special and important. Like other things, care-giving has a learning-curve. You will get there.
  8. Stay connected. Use the phone, internet, newspaper, etc. But, by all means, stay connected to the outside world & what is happening around you.

Last, but not least, if you need help … ask for it! Call a family-member or friend and ask for some assistance. Talk to your doctor and your loved one. If the patient’s level of care becomes too extensive, it could be time to consider hiring a professional caregiver. If you need to work, consider utilizing Adult Day-care options in your area. Just remember … you aren’t alone. There are many who are willing to offer ideas and alternatives. Don’t be afraid to seek their advice. Take care of your loved one — and you!

 

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

https://caregiveraction.org/resources/10-tips-family-caregivers

https://www.cancer.net/coping-with-cancer/caring-loved-one/tips-being-successful-caregiver

https://www.nia.nih.gov/health/taking-care-yourself-tips-caregivers

https://www.heart.org/en/health-topics/caregiver-support/top-10-caregiver-tips-for-staying-healthy-and-active

Adult Day Care Services

https://www.rwjf.org/en/library/articles-and-news/2003/04/the-role-of-adult-day-services.html

https://www.webmd.com/depression/guide/depression-symptoms-causes#1

*Photo by James Hose, Jr., on Unsplash