A = AWARENESS – Self Care Part 3

Written by Jodee Kulp

Intense Caregiving – My Story

When my daughter’s medical challenges increased; and more of her body systems failed. There was no feeling in her arms or legs and her 3 words were hhh (help), mmm (mom), and iii (ice). Her body’s heart still beat. Her lungs still breathed. FASD became the easy piece. Prenatal alcohol exposure was a set up.

My daughter was only 34 when she faced End Stage Renal Disease with dialysis, stacked on top of Type1 diabetes, Celiac, and a long list of other things that could have been prevented—if only…

Liz Kulp is a strong warrior and she is determined to live. TeamLiz is determined to walk with her. That determination does not come without cost. Her hope for a miracle or a dual organ transplant began.

It is costly to choose life!

My caregiving rose by hours and days, as did her husband’s. Days added up to weeks and then months. Many nights were sleepless and what a 30 year old body could handle a 66 year body could not. I had believed the care partnering system I set up was ENOUGH to keep me safe and healthy. I had cut my client base to four clients and set up strategies for self-care and supportive income. I took fun and supporting classes. I taught fun and supportive classes for other caregivers safely through the pandemic. It was not enough.

For six months TeamLiz weathered intense care requirements in unchartered territory with complex medical and mental health support needs – compounded with misunderstandings of prenatal alcohol exposure by professionals intending to avoid harm. My life and her husband’s life stopped as she regained her personhood – learning to roll over, think, talk, stand, and finally walk.

The process for all of us was life changing and traumatic.

After 30 months, I crashed as I still tried to keep on care giving. My heart beat too fast, my hands trembled, I had lost 25 pounds I did not need to lose, my vision decreased, and as I lay down to sleep the aching pain of anxiety in between my ribs was very real. I no longer knew who I was, my life was so enmeshed in her consuming minute-by-minute needs. My patience had withered and my emotions were heightened. When I was not with her, I was researching for her, care coordinating appointments, fetching supplies. I experienced a part of me that was new and unrecognizable. Five minute breaks became mere minutes, a shower felt like a vacation. Eating breakfast was a blessing. Sleeping without middle of the night crisis awakenings was bliss. I did not have the energy to read or write or think—only to care. Flashing red and blue lights and sirens heightened my response, where I faced crisis strongly.

Yet, this strong warrior woman continued to strive to grow and gain strength and to live. As our daughter regained her life, it was time to discover myself, our family, and most of all my daughter as the incredible human she truly is. And to do that well, I had to be well. I have to learn to really love me.

I needed to discover a plan of recovery that was in one minute increments, afterall, 1% is bigger than 9. In Italics I share my REALITY!

1. Take breaks: Make sure to take regular breaks throughout the day to rest and recharge. This can include taking a walk outside, reading a book, or doing a hobby you enjoy. LOL – going to the bathroom was a luxury as was brushing my teeth! Any moment could be interupted in crisis.
2. Get enough sleep: Adequate sleep is important for physical and emotional health. Try to establish a consistent sleep schedule and create a calming bedtime routine. LOL – collapsing onto a pillow was no longer memorable, to change my sheets was a luxury.
3. Exercise: Physical activity can help reduce stress and improve mood. Even a short walk or stretching can make a difference. LOL – walking up and down stairs, down hospital hallways, and between our homes was aerobics, deep knee bends and floor sitting meditation. As a certified PraiseMoves® instructor I was unable to think, or even take time for a video class.
4. Ask for help: Don’t hesitate to ask for help from family, friends, or community resources. Consider hiring a respite caregiver to provide temporary relief. LOL – I will be forever grateful to my sisters and friends who joined us to clean and organize and change a home into a care facility, to those who provided cleaning supplies, and paper towels, medical supplies, and all those millions of things we did not know we needed. To those who dropped off soup and Thanksgiving dinner. I do not even remember any of the holidays or birthdays during that time.
5. Practice self-care: Make time for activities that you enjoy and that help you relax, such as listening to music, meditating, or taking a bath. LOL – books on tape as I hit the pillow, Hello Fresh food delivery allowed me to cook, a quick jump into the shower.
6. Seek support: Connect with other caregivers or support groups to share experiences, advice, and emotional support. LOL – with the pandemic on in full force and an immune compromised situation, I sought online Bible Study groups one with the elders I so needed and one with business owners in Africa to keep my mind fresh – those two hours a week allowed me to access the world.
7. Manage stress: Practice stress-management techniques such as deep breathing, visualization, or progressive muscle relaxation. LOL – It was only by abiding in my faith that my sense of calm continued through ambulance sirens, and ICU, and medical trauma and mistakes. All the stress-management techniques in the world, regardless how good, were broken with screams.

Could this intensity have been prevented – we were all fatigued.
The common strategies above I had used previously were not SMALL ENOUGH.

• I hired a transformation counselor and shared my stuckness at 15 months into this intense caregiving. Little did I know we were barely at the peak of cares we would face in the coming months. The vision board remains posted in my office, it was a start.

• I journal as I am able – keeping a medical journal for notes to help our daughter, a schedule to do journal which has gaps of 3 months, and a drawing journal. I try to keep these in the same place in my home, carry one to hospitals and appointments, and doodled when my mind was floating and empty. I learned that online notes (Evernote) also can work well when you are on the go and have your smart phone.

How journals benefited me:

1. Clarified my thoughts and emotions: Writing down my thoughts and feelings helped me process and make sense of the moment, allowed to gain clarity and connect dots to issues I had not seen before.
2. Reduced my stress and anxiety: Since my life was so fragmented, once it was written down I did not have to worry or think about it. By putting my concerns down on paper, I could reduce the chaotic burden on my mind and leave it on my desk or table, available when I needed it again.
3. Track our progress: Growth in health was minute, and writing it down allowed us to stay motivated with seeing the success.
4. Improve self-awareness: Are we dealing with patterns? What are our strengths and weaknesses? Sometimes my note was just one word.
5. Boost creativity: Allows for my fleeting ideas and thoughts to be documented to help me think outside the box to generate new ideas and solutions to problems.

Journals can be a powerful tool for self-reflection, personal growth, and improved mental health.

I have shared a small part of our story, and I learned to “Love my neighbor” more importantly I needed to also “Love myself” wholy and carefully during such an intense time.

Let’s begin with FUN
– 1% effort is bigger than 0%

In the next blog – I share ideas in small steps to take to help you regain your self-care, I share them from a deeper sense of understanding now. Caring for yourself is just as important as caring for the person with special needs.

Taking steps to prevent fatigue can improve your own well-being and enhance the quality of care you provide. You are THAT IMPORTANT. Spring is coming as Liz and her Team slowly step back out.