Spiritual Practices Save the Day

Without a cadre of spiritual practices and the support of friends, I would never be able to handle with any kind of integrity and equanimity the ups and downs on my life’s challenging path. What about you?

Here’s what helped me get through my most recent challenge.

SP#1: Pray Without Ceasing

Since 1978, for 44 years, I’ve faced numerous obstacles in my search for resources for my children who were born with a hard-to-diagnose disease. For 22 of those 44 years, we were in the dark. However, the challenges didn’t disappear once we knew their source.

Now, in 2022, I faced what may be my final hurdle … helping my daughter find an appropriate assisted living placement … taking the next big step in her life. And seeing to it that she is cared for when I am no longer able or around to be her advocate and caregiver.

My every movement toward this goal is a prayer.

SP#2: Seek Support

When Nicole’s visiting physician mentioned a social worker in their service, I asked to be connected. She became our first-ever advocate. She offered to be with us for Nicole’s Medicaid waiver evaluation.

Many requests for prayer were made.

SP#3: Light a Candle

That day I lit a candle and called in Divine presence … a gentle, loving supportive presence. The evaluator arrived. The social worker did not. To quell my let down, I looked at the candle and reminded myself, “Trust the process. What is meant to be will be.”

The social worker came through. She arrived a half hour late …  just in time for the beginning of questioning.

The evaluator approved Nicole for assisted living … pending her supervisor’s consent. She said we would probably know the outcome the next day.

SP#4: Accept Support

I woke up feeling teary with the grief and sorrow of a lifetime washing over me. “I have been through so much with my children. A mother shouldn’t have to do this for a child … for parents … yes … but not your child.”

The evaluator called. Her supervisor approved. Relief joined but could not lessen the grief and sorrow.

The positive news was sent to those praying. A few responded with understanding about how hard it is to take this step. One was clear: “Despite the difficulty, you are doing the right thing.”

SP#5: Take the Next Right Step

I clung to that sentiment and continued taking the next step before me … scheduling a tour of the one full-service facility in our area accepting Medicaid for assisted living. My thought was that if I’m no longer able to facilitate a transfer to long-term care when Nicole needs it, the process would be simple. Additionally, I was told about other younger residents with disabilities living there.

Nicole was familiar with the facility. Both my parents lived there for a time and both died there. Also, when she first moved in with me in 2016, Nicole and I toured their independent living apartments. We both hoped she would one day be able to live independently again.

She said, “It won’t be a problem for me to live there.”

SP#6: Let Go

Because of an experience with my dad, I felt uncomfortable with that facility. But if it was no problem for her, I would not make it a problem.

In the executive director’s office following the tour, I asked Nicole, “Will this work for you?” Her response, “I guess it will have to” was my first clue she had reservations.

Once in the car, she explained. “I thought I’d have an apartment.” Thrown by seeing one room, she faced the reality of being incapable of ever living independently again. Her denial of the progression of her disease began to disintegrate. A bitter pill.

She sobbed, and said, “I guess I don’t have a choice.”

It tore my heart out. And thus began my descent into the depths of despair.

SP#7: The Welcoming Practice

The Steps in the Welcoming Practice involve

1. Sink into the feelings … welcoming your bodily sensations and thanking them for alerting you. Just be with the feelings without a story or judgment attached to them.
2. Welcome the feelings … not the circumstances producing them. Allow an inner hospitality and unconditional presence to develop.
3. Don’t rush to let the feelings go. Just observe and welcome. Avoid attaching a story to the feeling and wait until the emotional spike passes making a space for heart-centered awareness … an inner freedom needed for conscious action. Welcome the Turning Point.
4. Call on the power of the Divine Indwelling active within to unconditionally embrace the moment. Once inner wholeness is restored, freedom to choose how to deal with the situation emerges … whether accepting it or resisting it with spirit.

Sometimes, it’s a real bummer being a strong “feeler-type.” Sometimes it’s an advantage being emotionally blunted, as Nicole’s disease renders her. I was too worked up to systematically enter into this practice. But I tried. I knew enough not to foist my tumultuous feelings and insane thoughts onto my daughter. I knew equanimity was the end goal and I kept my sights on that.  

We came home, ate dinner, and watched TV, our usual nightly routine. We didn’t talk about it. I knew I needed to wait until calm and clarity emerged.

As the evening progressed, every fiber in my being felt under assault. Darker thoughts than I’d ever experienced assailed me. Hopelessness and despair joined grief and sorrow. At times these overwhelmed me.

I failed at Step 3. In my mind’s eye, a memory played over and over. I saw myself arriving home from the hospital, carrying my newborn daughter in my arms, looking at her with so much love, hope, and desire. I wanted a different relationship with her, a closeness my mother and I never had. So many factors killed that dream.  

I couldn’t imagine walking away and leaving her in that facility. Unsure if I could go through with taking this step, I argued with myself. The reality of our living situation would not disappear. At some point I would not be available to continue being her caregiver. She needed a safe space and I needed to help her find it and adjust to living there.

Hopeless, dark thoughts tormented me … darker than ever before. I failed at welcoming them. They frightened me. I prayed for equanimity and waited them out with white knuckles and clenched fists, refusing to act on them. I recognized the insanity of my thoughts.

I pray to let go of my desire to change the situation.

After a fitful night, I arose calmer the next morning. I welcomed the difference and hoped it meant a turning point had been reached.

Later I asked Nicole, “What thoughts have you had about our visit yesterday?”

She explained how she would arrange her furniture in the room. I took that as a step toward acceptance.

SP#8: Accept Spiritual Direction

At the suggestion of my Spiritual Director, I paused. Over the weekend, I spent time with a friend visiting the new tulip display at Cox Arboretum. Another friend came to visit and Nicole joined us for pizza and a flop-at-the-box-office George Clooney movie. We celebrated the profound message hidden among science fiction shenanigans.

SP#7II: Embrace Freedom (Welcome Practice: Step 4)

I had initially resisted an assisted living facility with no LTC. But now I calmly told Nicole about one that takes Medicaid. “It doesn’t have long-term care, but I’m told there are other ways to handle that. Would you like to check it out?”

“Yes.”

SP: 4II: Accept Support

Monday morning, I made several calls – one to an Eldercare specialist for recommendations. Then appointments were scheduled for two facilities. Diana would accompany us to both. She pays attention to the bigger picture while Nicole and I zero in on her priorities. Having been through this several times, she understands the system and knows questions to ask for clarification when I’m confused.

SP#1II: Pray

O Grace Bestowing God, I pray to be in surrender … to be attuned to your guidance … to trust your Spirit at work in our circumstances … to see with the eye of my heart. Help me make decisions with Wisdom. In Christ’s Spirit, Amen.

On Tuesday we arrived at the Assisted Living facility located just 7 minutes from my home. Invited into the intake coordinator’s office, questions were answered and information given while a nurse assessed Nicole. I was especially interested to know how guardianship/payee arrangements could be made. Liz told me about an attorney who went out of his way to help a resident in an inappropriate placement get what he needed. She was impressed with his heart. That gave me hope.

In the course of the conversation, Nicole’s love of the “General Hospital” soap opera came up. Liz used to watch it before she started working. A spirited conversation between the two of them ensued as Nicole brought her up-to-date. The tour followed.

Diana noticed that the staff appeared happy and observed them making a fuss over a resident and her fresh haircut. I observed how respectfully they interacted with each other.

We were all enthralled to learn that this facility fosters kittens. We spent several minutes ogling over two little black and white cuties.

After the tour, we went back to Liz’s office for any final questions. Liz asked Nicole, “Would you like to be put on the waiting list?”

“YES!” came her enthusiastic response.

Diana asked about availability. An opening could occur within two-three months.

We all teared up. This is a BIG step!

As we headed for the car, Diana asked, “Is this facility better than the other one?”

“Oh my God, YES!” Nicole exclaimed.

SP#7III: Notice tension leaving body & heart opening

Later, Liz emailed the contact information for the attorney. She added, “I hope Nicole is doing ok… I hated to see her upset as she left today.”

I wrote her back, “Her tears were tears of relief. She wasn’t upset. She sobbed after we visited the first place. It was pretty depressing. So the tears were relief. She was animated on the way home.” I told her their General Hospital conversation and those kittens contributed to that enthusiastic “Yes.”

Liz responded, “That just gave me some happy tears, so thank you for that! I’m so happy they were tears of relief and she may feel like she found her next home. I truly look forward to watching her participate in all the activities here and maybe I’ll even catch an episode of GH with her one day! Maybe once she’s settled in, she can volunteer with the kittens and we can get her a key to the kitty room!”

My heart rejoiced. She cares! My daughter will be living in a place where at least one person knows and cares for her. That means more to me than Liz will ever know!

SP10: An Attitude of Gratitude

On Thursday we visited a third recommended facility. While not appropriate for Nicole, it was nice, has great amenities, and is a good placement for those facing their last days.

Thankfully, we feel grateful to have found a placement Nicole can feel enthusiastic about.

Nicole continues to come to terms with her losses … a plethora of cable channels and streaming programs … a kitchen nearby. With no kitchen in her room, she won’t be able to make French fries whenever she hankers for them. Even a toaster is not allowed. She may have to venture out of her room and go to the dining area for cinnamon toast.

Lack of motivation to extend herself socially is one of the characteristics of her disease though she can be quite social when it’s easy for her. She may find that, if she’s willing to venture out of her room, the full range of daily activities will be more to her liking than watching TV and playing games on her iPad in isolation. It may be a whole lot more interesting than living with Mom. We’ll see.

SP5II: Take the Next Right Step

An appointment with that young attorney with heart is on the schedule.