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It’s National Family Caregivers Month-Here are some thoughts!

CarePartner/Caregiver Appreciation

Those of us living with Parkinson’s disease and have a caregiver or care partner to assist us, may overlook or take our helpers for granted. Take the time to show your love and gratitude for all that your caregivers do for you. Show your support and make them aware of your appreciation and the changes that they make in your life. This is a thank you to all those selfless people who make life easier for those who need assistance.

 

Here are some tips for you and your carepartner/caregiver:

  • Caring-Taking care of another can be a rewarding and spiritual adventure that can bring our relationships closer. In any relationship, there are caregiving challenges that will require patience, understanding, compassion, empathy, and possibly, even more patience.
  • Stay Vigilant-You, the caregiver, are the cheerleader, coach, and trainer, all in one, for a team that may or may not show up. It is your responsibility, as a caring helper to be observant and to ensure that you not over tax yourself. You must see that you take respites and time for self-refreshment.
  • Appreciation-My wife, Angela, is the most caring, most selfless, most generous, and most thoughtful person that I have ever met. Acknowledge and do your best in thanking those making a difference in your life. It’s so vital that those caring for us know that they are valued.
  • Limits-If carepartners fail to monitor and maintain their own health, it is vital that those who care about them step up and say something.
  • Watch for Burnout-Continuously caring for another takes a toll on body, mind, and spirit. If a caregiver overextends themselves, they are likely to face health, sleep, and stress related illnesses.
  • Self-Care-Caretaking for yourself, even for a small part of your day can be calming, centering and help to keep you healthy. Keeping your identity and getting time for yourself is a health must for you and those around you. Just a few minutes a day can rejuvenate the entire body.
  • Taking Your Time-Pay close attention to any changes in how you interact and communicate. If you find yourself on edge, quick to react, and overly sensitive or emotional, take a few moments to scan yourself and the situation. Just finding a quiet spot like an office nook to try some deep relaxing breathing may quiet things down.
  • Knowing your Limits-This requires knowing one’s self. Monitoring your condition is as important as the patient’s status. As a team, if the caregiver can function well, the patient sees those benefits as well. Taking care of yourself is the best gift that you can give to those that you love.

It’s hard to take care of others well, if you aren’t well. Take care of yourself and thank you!

A Gentle Reminder

This is a gentle reminder to all the selfless caregivers, care-partners, doctors, nurses, orderlies, therapists, speech pathologists, social workers, and anyone who comes in contact with people touched by a neurological illness. Remember these 5 important points before you react, speak, take offense, lose your temper, or give up:

  1. Everyone has a history and a story. The person who you are dealing with now has had and may still have a very full life that you only see a portion. Give them the credit and respect that they are due.
  2. The current state of the patient that you are seeing doesn’t need more stress, tension or conflict in their lives, working together you both can make life better for the patient and not worse.
  3. Give your loved one or patient flexibility and deal with them creatively and an open mind. If they aren’t responding to medications offer music therapy, touch, or seek a personal solution which motivates the patient. There is a need for gentleness and understanding.
  4. The person with whom you are interacting may have done some important things in their life, raised a family, changed many lives, and been far more active than they are now. Their current condition is not by choice. Show compassion, patience, caring, and generosity.
  5. Someday, in the not so distant future, you or someone who you care deeply for could be facing these very same challenges.

My Wife-Angela Robb, Recognized As A Champion of Change!

UPDATE!

Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.

The event was held at the White House.

Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.

White House Champions of Change for Parkinson's Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney

 

What a smile! Angela Robb A Champion of Change!

What a smile! Angela Robb A Champion of Change!

As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.

To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!

Share Your Thoughts With Me

Based on recent events, I have encountered and spoken with a variety of people from around the United States in the Parkinson’s disease (PD) community who have unfulfilled needs and are in need of unmet specific resources. Local, state, and federal agencies can only do so much and PD organizations are doing the best that they can to assist the growing need.

I would like to take a very unscientific poll of readers of this blog and ask you flat out- What one need concerning Parkinson’s disease do you feel needs to be addressed (not to mention research or a cure) in the PD community? After a few weeks, I will summarize the results of this poll. Please send your answer via email (not by post and responses are confidentil) to asoftvoice@robbworks.com

Thank You!
Karl

Keeping Relations Alive

Illness shouldn’t break up a family. It shouldn’t come between  spouses. Friendships shouldn’t  end because one of you is ill. The truth of the matter, sadly, is that illness tests the family, the spouse, and your interaction with friends. Change of any kind mixed with insecurity and doubt about one’s security is frightening for all involved parties.

This is where  communication,  understanding, patience, strength, and compassion must be expressed swiftly and thoroughly. If there was love when you both were healthy, then there ought to be love when either of you are sick. Marriage vows state “in sickness and in health”.  Real love means taking care of those that you care about as best and as long as you can. I will add as a patient and one who is sensitive to, and aware of caregiver burnout– that caregivers  need to be taken care of as desperately as the afflicted, to assure the health of everyone involved. In many ways, the relationships between friends and family can be strengthened if we treat one another with proper awareness, respect,  and appreciation.

Communication:

-Share your fears with each other and don’t hide your feelings. Show your support and love for one another through your personal strength, faith,  support groups, professional counseling, or mentor. You are stronger than you know. You are not the first person to be tested by what you are going through. This is the time to take stock in your life. Maybe, just maybe, doors close but windows open for a reason. Stay on top of your situation and seek help as you need it from family, friends, the local community. Do your research about the services that are available to you locally, statewide, federally, and even internationally.  The world is quickly becoming a smaller place thanks to the internet and the sharing of information.

Understanding:

-Common ground isn’t always easy to find when one party is in discomfort and the other has a clean bill of health. Just the act of trying to imagine another’s challenges can help to put negotiations back on track. Taking the time to listen, observe, and feel another’s pain, can make tremendous change for bonding and healing.

Patience:

Finding that part of you that slows the mind and targets the need for anything other than a focus on improving one another is essential. Patience is a virtue that you can attain with breathe, realization, commitment, and keeping love alive. Understand that all parties must observe patience for this to work efficiently and equally.

Strength

-I will admit that this one may take time, effort, exploration, and even outside assistance. Find what works for you.  Maintaining your wits in a crisis is not easy and takes a unique skill set.  Dealing with the added stress can take a toll and injure anyone around us. Whether you need a massage, to go to the shooting range, breaking  something (a non-dangerous and inexpensive object that provides emotional release), pop bubble wrap (reported to be a great stress reliever), working out, singing, or having  coffee with a friend. Finding what works for you is crucial.

Compassion:

-Loving yourself and someone else is what makes for a complete relationship. It is not egotistical to love oneself.  If one is unable to love oneself, a spouse or friend faces a demanding task. It is of vital importance to maintain our connection with others. There is beauty in the world. There is kindness even in the darkest  corners. The human is a resilient and crafty being.    

Wayne Dyer, prolific author and lecturer, has a great saying, “Don’t die with the music still in you!”  Do your best at doing what you  can and surprise yourself . You might just change and see a change for the better. This is my opinion–what’s yours?

Do you have a credo that you want to share? What do you do to improve your relationships? Does illness cost you relationships?  Do you share a positive attitude with others?

I want to hear from you!

Thanks,

Karl

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