Nov 18 Let\’s Hear It for the Caretakers #NHBPM Carnival

Topic: Write about your advice for someone caring for a patient with your condition

Caretakers in my opinion are unsung heroes.  Often it is the person who is sick that receives the caring phone calls, messages, care packages, etc.

My caretakers are the ones who have been behind the scenes, making phone calls for me, sitting with me during doctor’s appointments, driving me around the Midwest to see specialists, being there when I fall apart, making meals, bathing me, encouraging me, picking up prescriptions, supporting me, taking on more household duties, pushing my wheelchair, being my cheerleader, and the list goes on, and on, and on…

Yet, I often think to myself, where is their recognition?  It truly is a thankless job

Caregivers are health activists.  They are often selfless.  Giving.  Understanding.  Supportive.  Loving.

At the same time caretakers are often dealing with their own emotional stress that comes with caring for someone who is sick.  When my sister Allie, was extremely sick and we were not sure if she was going to make it, my Mom and Dad were by her side at the University of Maryland Medical Center every single day for 48 days.  They would get to the hospital in the morning and stay until they were kicked out at night.  They lived on sandwiches from 7-11, and very little sleep.  It was my Mom who would sit by my sister’s bed every minute of every day and rub her leg, because it was the only thing that would comfort her.  It is interesting because Allie does not remember a lot of what happened because she was so sick and in so much pain…yet it is my Mom and Dad, her caretakers at the time, who can recall every single detail of the emotional roller coaster…the nightmare that they were living.  The experience of almost losing their youngest daughter to PAN Vasculitis has stayed with them since that Christmas night 4 years ago.  My Mom will tell you that when the phone rings late at night or early in the morning, and it is Allie, her heart still stops until she knows that she is okay.

Caretakers are the ones who deserve an award.  Something.  Anything.  A form of recognition.

Allie and I have talked about this a couple of times before.  It is important to both of us that we never forget this…That we never take our caretakers for granted.

Allie and I decided to get together and create a list of advice from our own experiences for someone caring for a person with an illness…We figured we may have some insight since we have been on both sides of the equation; the patient AND the caretaker.

• Educate, educate, educate yourselves on the conditions.  Ask questions.  Read up on them.  Knowledge is power.  As a patient, what we have appreciated the most is when people take the time to understand.  I think this is especially important for people with invisible illnesses.
•  Have someone that you can talk to.  Take time to figure out how to deal with the emotions you are dealing with that come with taking care of someone who is sick.  Seek out help.  Try to find time to still take time for you, both emotionally and physically.  You are no good to the patient if you aren’t healthy yourself.
• Let’s face it.  It is the caretaker that often gets the brunt of the frustration from the person who is sick.  I think this is often because the patient is feeling a loss of control, and even independence.  Try to keep in mind that you happen to be the one who the patient feels is safe to take their frustration out on.  Try to be objective, put yourself in the patient’s shoes, and try to understand that even though it may feel personal, it is not.
• Please do not get your feelings hurt if the patient is unable to do something socially, especially if they cancel at the last minute.  Chances are the patient feels worse about it.  Keep in mind that they are doing their best.  Part of living with an illness is learning limits.  Please support the patient in figuring out these limits.
• At the same time, encourage the patient to get out if they are feeling up to it, and are able.  When I was at my lowest emotionally and physically, my Mom started to force me out of the house on Sundays to go to church and lunch.  I fought her at first since this meant coming to terms with needing a wheelchair AND relying on her to be pushed.  However, in hindsight it was one of the best things she could have done for me.  I saw that I still could live my life and my wheelchair was a tool that made it possible, and gave me some of my independence back.
• Be a dose of reality.  Let the patient know when they may be overdoing it, or even when they should snap out of their pity party.  When Allie and I would get stuck in a “why me” day, my Mom would always counter with, “Why NOT you?”  It has always helped us with perspective.
• On the other side of the coin, be there to remind the patient that they are not superhuman.  The patient can do something but not everything. It was our caretakers who helped us figure out what we could control and what we could still do that was purposeful; even when we were very sick.  We both later found a passion in raising funds for research and awareness for invisible illnesses; especially for our diseases.
• Help the patient understand that needing help isn’t weakness, it’s empowerment.  The same goes for the caretaker.
• Oftentimes, the caretaker wants to be a fixer.  I think this is normal.  I am also guilty of this. But the hard part about many illnesses is that they cannot be “fixed” or “cured.”  It is important for the caretaker to understand and work through this, so they can help the patient through the grieving process, while helping them learn to manage their illness(es).
•  The reality is that when one experiences illness, they often also experience loss.  Many times, it is the caregiver who is the person that the patient trusts enough to help them work through their new reality.
• It’s okay for the caretaker to cry, yell, and scream.  The same goes for the patient.  We are all human and must remind each other that we are doing our best.

Finally, our last piece of advice is for the patient.

• Thank your caretakers.  Hug them.  Express your gratitude.  Acknowledge what they have done for you.  Remember that it is never too late to give thanks where thanks is due.

I know we both did today.