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July/August  2017
Caregiver's Corner
Ideas, Info and Resources for People Caring for Others.

Welcome to the July/August Issue

Ticket Please: The Caregiving Rollercoaster
BY JEN CHRISTOFF
It is a perfect day for a trip to the amusement park. The weather is warm and sunny, not a cloud in the sky. Family and friends are joining you for a day of carefree fun. You enter the park, WOW! The sights, sounds and smells overwhelm you. The laughter and screams are deafening. The planning begins: what rides to ride on, what places to eat, what shows to enjoy, so get your map ready!

You spot Kiddie Land and with a ticket in hand and a child by your side, get ready to be "just a kid." You hand your ticket to the ride operator and she tells you, "No, your ticket is not good here." You exclaim, "Well what do you mean? I want to be in Kiddie Land!" She points to where you and your child will be going.

It's the...rollercoaster!

You feel like you can't breathe. It is not just a typical rollercoaster; it's the coaster that's never been tested. It's the fastest and highest, with more plunging drops, more twisting loops, more jerking motions, and you will be riding in the dark, so you won't know what comes next. Sure, some of your family and friends agree to ride with you, but some may not. You have no choice in the decision-you must ride.

So let's meet and conquer the coaster of caregiving.

How many emotions can you feel in a day of caregiving for a loved one who is medically fragile? I lost count. With the medical, emotional, and behavioral needs they may have, I can't imagine how many emotions our loved ones may trigger daily. They may have unseen needs or they may have very apparent needs: trachs/vents, feeding tubes, assistive devices, communication devices. They may have many diagnoses or They may be undiagnosed. Whichever the case, you feel a spectrum of emotions.

My journey on the caregiving rollercoaster started over 17 years ago, years before my very own special princess with complex needs was born. I am a pediatric nurse; I love and was always passionate about infants and children who are medically fragile. I still feel that way today.

The big difference is that as a nurse, I am able to leave my caregiver role after my shift is over. I didn't know of the DME and insurance wars I would be faced with. How hard it is to fold up an adaptive stroller in the rain. The impossible task of managing therapies, schedules, and life-maintaining equipment every day, 24 hours a day.

I did not appreciate or realize the emotions many of the caregivers I dealt with professionally until I lived them myself. I look back on many of the families I have been fortunate to have cared for. They have helped me become the parent caregiver, not just the nurse for my daughter. I can look back at the confidence of the mom standing up to the physician and telling him something was wrong with her child or what her child needed. I remember the enthusiasm of parents when their child had a "good day," or the optimistic parent who hopes the next drug, surgery, or equipment may make life easier for her child.

But I have also seen the pain and helplessness of the parent whose child will not get better. That the best thing they can do is give their child a quality life full of love. The anxious mom waiting for a CT scan, lab results, or the long wait for their child in surgery.

Many times we try to hide the feelings of jealousy, hopelessness, and resentment. What kind of person would feel jealous or resentful of another person's child who has accomplished something that we wish for our child? We grieve, we are human and it is acceptable to feel like this, because we will appreciate and be overjoyed by our own child's accomplishments, no matter how small.

I am that mom now; I am still learning how to balance being my daughter's caregiver instead of her nurse whose shift ends in twelve hours. She is not just my patient who is on oxygen, tube feedings, parental nutrition, and catheterizations. In my nursing world, my daughter as the patient would scare me.

Many say that I am lucky I am a nurse, that it must come easy. The answer is no. No matter how many procedures, therapies, or medical decisions you make professionally, it does not make it easier when it is your own child. My biggest struggle is the world of palliative care we have entered. No nursing school prepared you for this journey with your own child.

I go to work after caring for my daughter during the day. By choice we do not have a home nurse. This is a personal decision and maybe one of the few decisions we can truly control. I continue to work with infants and children who are medically fragile, so I am on the 24-hour caregiver rollercoaster.

I can say truly I can relate to my families better since I am now a rollercoaster rider. At the end of the day, you have periods of accomplishment no matter how big or small. Getting AFO's on without breaking a sweat, winning an appeal with an insurance company, or just making it through the day.

The motivation comes when you look at your loved one in the brief moment of peacefulness knowing you did all you could do that day. The way he or she may look or respond to you is all you need to get back on the caregiver rollercoaster.

So next time you are at the doctor's office, hospital, or out in the real world, if you see a fellow rider on the rollercoaster, maybe smile and nod because we are all on this ride together.

Inspiration


Caregiver Tips
Take a StayCation
Source:  Caregiving.com

It's one more thing to give up because of caregiving: A vacation.   Just because you stay home, though, doesn't mean you can't still have some fun. And, just think, the fun comes without having to pack, unpack, organize, schedule, fret, worry, cajole and leave. T ake a staycation, even if it only lasts for five minutes. Think you can't? We've got some ideas to help you:
  • buy a lounge chair and sit in your backyard in your bathing suit (or perhaps just buy a lounge chair and sit in your backyard)
  • stay in a local hotel for one night
  • make Coppertone SPF 15 your favorite new perfume
  • soak your feet in the inflatable kiddy pool you resurrect in your backyard
  • visit a tourist attraction in your hometown
  • have a barbeque
  • light up the Smokey Joe and make S'mores
  • pitch a tent in the backyard, decorate the inside with your favorite photos and knick knacks, and then hide there whenever you want
  • have a Happy Hour in your backyard with a special summer-time cocktail (or mocktail) and fancy snacks
  • add sparkling lights to your backyard, transforming it into a magical space
  • join the neighborhood kids in a game of Ghosts in the Graveyard
  • order in dinner and then go out for ice cream.
Do something you would normally do on vacation. Just do it when you're at home or close to home.   Have fun on your StayCation!

Do you have a caregiving tip you would like to share? 
 Perhaps you would like to share your caregiving journey with our subscribers.  
Email your tips & stories to Jessica at jevans@booneseniors.org

Support Group


2nd Tuesday of each month
6:00pm-8:00pm
Old National B ank Zionsville


Special Caregiver Support Group
August 9
Hands-on Caregiving Skills
6:00-8:00pm
Zionsville Meadows 
675 S Ford Road
Zionsville, IN  
Caregivers will have an opportunity to learn everyday skills such as; how to safely transfer, lift, bathe and help their loved one when using an assistive device like a cane or walker. 

Community Support Groups       
     

Share, Learn & Support with BCSSI & Zionsville Meadows
Caregiver Support Group
2nd Wednesday of every month 

Alzheimer's Association 
24/7 Helpline 1-800-272-3900

Early-Stage Social Engagement-Alz. Assoc.
If you or a loved one has been recently diagnosed with Alzheimer's disease or another 
dementia, the early stage social engagement may be the ideal way for you to stay socially engaged with your community.  The program is designed for individuals to engage with a friendly network of families who are experiencing a similar journey, in a safe and positive environment. Programs include Meet Me at IMA (Indianapolis Museum of Art), Community Theatre, Indianapolis Symphony Orchestra and more....

Alzheimer's/Dementia Support Group
Copper Trace-Westfield

Lewy Body Dementia Support Group
2nd Thursday of each month from 2-3 p.m. 
Amore restaurant in Boone Village, Zionsville (Come early to have a late lunch and socialize) MetroIndyLewy1@gmail.com. (The two co-facilitators have been trained by the Lewy Body Dementia Association  LBDA.org )
                                                        
Caregiver's Crossing
A radio program for family caregivers.
Saturdays 7-8am on WIBC 93.1 FM.

Cancer Support Community

Vision Loss Support Group
    
BCSSI Special Events

Alzheimer's Assoc. Education Series
Understanding & Responding to Dementia Related Behaviors
Aug. 15 6:00pm-8:00pm
BCSSI-Lebanon
Dinner provided by:  CrownPointe Assisted Living
Call BCSSI to register

BCSSI Book Club
The Invention of Wings by Sue Monk Kidd
Copies of the book are still available..
July 11 1:00pm BCSSI-Lebanon
Other books for this year are...
The Creole Princess, Leaving TIme & The Other Story

Boone County Polo Charity
A fun-filled family event benefiting BCSSI
July 8 Gates open 11:00am Match Time 1:00pm

3rd Annual BCSSI Olympics
12 events throughout Boone County for those 60+
Aug. 28-31
More details

For a complete listing of BCSSI calendar of events visit