Dear Caregiver, I know caregiving is hard! Bring bucket list joy to the homebound!

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Bucket lists became a popular concept when the movie Bucket List came out in 2008. We had no idea that all too soon we would need to bring caregiving to a whole new level for our own child. Nevertheless, when our daughter was diagnosed with a terminal condition when she was almost three, we felt compelled to create her own bucket list. It created great happiness in our celebration of her living instead of focusing on her disabled experience and eventual outcome. Now our girl is mainly homebound, but that won’t stop us from continuing our bucket list efforts! It has decreased our caregiver burnout and brought fun back into our home!

Bring Bucket List Joy to the Homebound

She has had so many exciting experiences as we lived in celebration. Bea has created her own ice cream flavor with Cold Stone Creamery, made pizza with Papa John’s, cupcakes at Publix, “driven” a Carnival cruise ship, gone zip lining, had a private meet and greet with Mickey and his pals on a Disney Cruise, and so much more. Her happiness shined through as we enjoyed each new bucket list experience!

As a caregiver, it is easy to fall into despair, gloom and doom, especially when our girl became mostly homebound. Instead, I have taken inspiration from a good friend of mine who had a beautiful baby girl name Mae. Mae was taken from us all too soon as a result of being born with Trisomy 18. This did not stop her loving parents and family from having fun caregiving, creating happiness, and making her journey a celebration of her life while she was here. In like manner, we will continue our bucket list and celebration of happiness and life for our daughter! This weekend we will bring the pumpkin patch to Bea, so she may experience the same joy her siblings will. My heart swells to see her smile. It also eases the burden of caregiving by increasing her happiness.

Chronically Ill Children
Chronically Ill Children

With my mind filled with medical appointments, medications, appointments, nurse visits, social worker visits, charting, treatments, bowel moment tracking, feeding, bathing, dressing, and more, it’s easy to see how caregiving can become less about joy and more about getting it done without losing your mind! How does a caregiver find the energy to create joy and celebration in their home when their loved one is bringing out their worst and you theirs? Add crippling exhaustion, a complete lifestyle overhaul, and balancing of everyone’s needs, and you don’t have the desire, much less the will to do much.

Bea Hospital October 2016
Bea Hospital October 2016

I understand. I understand completely.

Caregiver of the Homebound Distress
Caregiver of the Homebound Distress

How to Cope and Practice Self Care While Caregiving

 

  • Start with knowing your benefits. Does insurance provide for in home health, nursing care, palliative care, hospice, unskilled personal care, or respite care?

 

  • Look for local resources. Is there a local church that has programs for the homebound, mentally disabled, or adult day care?

 

  • Find a support network. Look online for other caregivers! They may have valuable information about options and resources for your loved one! In addition, you will find camaraderie.

 

  • Create routine when you can. This helps me balance things out. It’s ok to laugh! Sometimes this is an absolutely impossible task. I get that too! In fact, we are currently in the process of finding our footing one again as Bea’s condition continues to deteriorate.

 

  • Find a qualified sitter or respite worker, and make sure you find some time for you. You cannot do it on your own. It will break you!

 

  • Get sleep! If your child or loved one isn’t sleeping well, seek medical attention. You would be shocked at how much some sleep can help all of you. This lesson was just learned this week. Life. Changing.

 

Creating a Celebration to Bring the Joy Back in Caregiving

Caregivers Caregiving!
Caregiver Caregiving!

Caregiver Ideas Continued

Bucket List Celebration!
Bucket List Celebration!

 

 the homebound bucket list

In short, these are things that children who are chronically ill, terminally ill, and/or homebound would love! By no means is this list applicable to all children, but is instead based off of our personal experience with out daughter.

  • Kinetic sand is a fun way for kids to bring a bit of the outdoors inside! The sand is easy to clean and fun for everyone to play with!

  • The classic Play Doh! Let imaginations run wild with all kinds of play possible!

  • Games, especially ones that don’t take a great deal of fine motor skills or brain power. We are just too tired for all that!

  • Go for it! Have your own karaoke/lip sync battle at home!

  • Find classic games that are adapted for those with less dexterity.

 

  • Have a spa day! Put fresh sheets on the bed and paint nails or watch a movie together!

  • Photo booth selfie party! 

  • Have an unbirthday party! Reminisce about just how weird and fun Alice in Wonderland is and don’t forget to stop by the movie theater and bring home the good popcorn!

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