Saturday, June 25, 2016

Giving Back to Grandma Jan

On May 21, 2009 I made a tearful phone call to my mom as Shawn and I headed from the specialist's office to the hospital after an unnerving change of events. Due to heart complications, Benjamin was to be delivered right away at 35 weeks gestation. Could she please arrive as soon as possible? I was calling from Oklahoma, and she was responding from Whidbey Island, WA where she had moved the year prior to help care for her mother as she began the steady decline into Alzheimer's disease. It was a sudden change of plans and a taxing travel schedule, but she arrived in Tulsa and was by Benjamin's NICU crib less than 24 hours later. She remained with us for the next six weeks. She stayed with me in Tulsa for nearly the first month of that time as I recovered from the unexpected C-section and we waited for our sweet baby to be released from the NICU. Shawn had to return to work an hour away and could not be there all the time. I don't know how I would have made it through those long and lonely days (and nights) without my mom's company.

Upon Benjamin's homecoming, she returned with us to our hot, little, two-bedroom rental house. The Oklahoma heat was sweltering in June, and our small air conditioner did very little to keep the indoor temperatures bearable. She sat and sweat and cuddled tiny Benjamin while I would try to get some much needed sleep. One night in the wee hours of the morning she held a screaming baby and walked up and down the living room floor with him while Shawn rushed me to the ER. I was in unbearable pain and experienced my first (and only) panic attack, making it difficult for me to breath. It would be two more years we would learn that my pain was triggered by gallstones. She took the exhaustion of those weeks in stride, cherished the cuddles with her first grandchild, and eventually had to return home to Washington. During that time she also kept a written record of events, and soon after she mailed me a notebook entitled "Grandma Jan's Journal." I will always cherish her writings. She chronicled the first precious weeks of my son's life when I didn't have the energy to even think about writing. Her journal became the middle section of my book Reflections from Holland: A New Mother's Journey with Down Syndrome.

Once home in Washington, she expected to resume her routine of living with and assisting her mother. Her youngest brother owned land in the woods where he had built a house and the necessary caging for his unique hobby of raising cougars and other exotic cats. My mom and grandma lived together in a second house on his property. My grandma was still fairly independent at this point, but my mom had taken over all of the shopping and cooking. She was present to keep her mother company and to be a watchful eye for her overall well-being. However, within weeks of arriving home from her visit in Oklahoma, she received word that her elder sister Ann was dying. She went in for a stomach surgery, and was found to be full of ovarian cancer. Once again my mom boarded a plane and, instead of flying half-way across the country, she went coast to coast, arriving in North Carolina. Ann's final days ended up being stretched into 66 pain-filled final days as she was moved from facility to facility. My mom loyally stayed by her side during that time, advocating for her in some less than desirable conditions and being a presence of comfort. She loved her, suffered with her, and faced many lonely days and nights in unfamiliar settings. Upon Ann's death, she made another stop in Oklahoma again, this time for some healing cuddles with her grandson.

As she grieved the loss of her sister, my mom once again resumed her life in Washington, and keenly noticed the changes that took place her mother's memory and ability during the months she was away. Life regained a sense of normalcy, but she was always sure to plan visits to Oklahoma every three months or so. Spending time with her daughter, son-in-law, and especially her little grandson gave her the needed reprieve and refreshing from the strain of witnessing her mother's steady decline into memory loss. However, the beauty of Washington, her exceptional church family, and her mission of caring for her mother always drew her back again. However, I had a building inner sense that one day she would be coming to Oklahoma to stay.  

In the fall of 2011 I had some more visits to the emergency room, and I was finally correctly diagnosed with gallstones. An outpatient surgery to remove my gall bladder soon followed. Benjamin was a heavy two-year-old who was still only crawling and required the care of an infant. I had my surgery near the end of the week, and I was hopeful that I would be recovered enough after the weekend to resume Benjamin's care when Shawn had to return to work. However, the closer we got, the more I realized that I was hurting too much to be lifting him all the time. Once again I made a phone call to Washington and asked my mom if there was any way she could come. Once again she made arrangements and was soon on a plane headed our way. Her help that week was immeasurable!

The following February brought some major transition for her in Washington. The level of care my grandma needed had surpassed what my mom and uncle were able to provide. They made the difficult decision to move her to a professional facility for people with dementia called Home Place. It was an exceptional care home, but it was a hard change nonetheless, especially in the first weeks as my grandma pleaded to be brought home again. In time my grandma's memories of her house in the woods began to fade. The loss of memory was heart-breaking, but her contentment at Home Place was reassuring. My mom visited her on a regular basis as she processed her conflicting emotions of relief and guilt that she was not able to continue caring for her mother at home.

She continued to enjoy visits to Oklahoma and was delighted to receive the news that summer that we were expecting our second baby! Knowing that I would require a second C-section birth, she blocked out six weeks to stay with us when Joelle was born. She arrived the week before to help me in the midst of late-term pregnancy, and she stayed with us through my recovery. When the time came for Joelle to be born, my mom took care of Benjamin so that Shawn could be with me at the hospital. Of course, she was sure to come have some newborn cuddles too!


What I have not mentioned thus far is that my mom has lived for years with fibromyalgia, which affects her with chronic fatigue, muscle aches and pains, and a weakened immune system, among other things. The strain of travel, caring for Benjamin by herself, and the winter weather took it's toll, and she came down with a nasty virus shortly after we brought Joelle home. I felt so bad for her. Our house is small with no guest room. She was staying in Joelle's nursery on an air mattress, (we kept the baby in our room), and I knew she was both miserable and frustrated because it wasn't safe for her to hold her new granddaughter while she was still contagious. I was recovering from major surgery, and Shawn and I were both exhausted from our colicky, high maintenance little princess! We were all in need to someone to take care of us! Prescription medicine and lots of rest finally put her on the mend, and she was able to re-engage with the family. Once again, her help was so appreciated as she would spend the evenings after Benjamin went to bed holding a baby while Shawn and I caught a few hours of sleep before beginning our night time marathon. 

The return to Washington was again marked by rapid change and transition. During the six weeks my mom was with us, my grandma had taken a definite turn for the worse. She celebrated her 86th birthday on April 24, and she peacefully passed away in her sleep a few weeks later on May, 16 2013. Thankfully, she was still able to recognize her children up to the very end. A definite chapter in my mom's life had come to a close. In addition to caring for her mother over the last five years, she had also been chronicling the journey along the way. The next year she would compile her writing into book form and release her first self-published book Three Corner Has My Cat: Caregiving in Alzheimer's Time by Janis Lussmyer (available on Amazon). 

Though she loved her life on Whidbey Island, surrounded by natural beauty and the support of her church, my mom was feeling an increasing pull to Oklahoma and her two precious grandchildren. A few months after her mom's passing, she flew out to visit and to begin looking around for a possible home. In a timing of events that only God could orchestrate, the house across the street from us hit the market a few days before her arrival. To make a long story short, she was the only one to even view the home, and before she returned to Washington, she had already signed the contract! A few months later she arrived in Oklahoma once again, this time to stay, and began a brand new chapter of life. It was the first time we had lived in the same town since I graduated from high school. 

It has been a remarkable blessing for us all to have my mom so close these last two-and-a-half years! She jumped eagerly into her role of grandma and has given us immeasurable help with the kids. We have been able to enjoy casual family dinners as well as holiday celebrations. She has been company to me on some of my more taxing mommy days, and my children absolutely adore her. Regular visits from Grandma and trips across the street to her house are always a cause for celebration!

It was so special to have her close by through my entire pregnancy with Josiah, and she prepared herself to help with the older two while Shawn and I were at the hospital upon his arrival. None of us realized all that would end up requiring. Due to the inhalation of amniotic fluid right at birth, Josiah was immediately fighting for his life. He ended up being transferred to a NICU in Tulsa for his first few days. I was recovering from my Cesarean section in the local hospital, and Shawn was staying in Tulsa with our newborn son. Grandma Jan was beyond weary, but she stepped up and did what was necessary in caring for the other two. Some wonderful friends gave her a few hours of reprieve at times so she could get some necessary rest, and another friend stayed by my side in the hospital. It was a long three days, but finally we were able to bring little Josiah home and transition into life with three children. Grandma Jan quickly became on of our little guy's favorite people, and he joins his older siblings in demanding her attention as soon as she enters a room!

It feels so natural now to have my mom living so close. However, I have tried hard to not take this gift for granted. It's become very natural for her as well. Oklahoma is home, and she has established herself in the community, getting involved in a local church and related activities and even volunteering once a week at a Christian-based hospice home named The Journey Home. At times we've discussed ideas about the future, including the possibility of getting a large house all together if she reaches the point someday of not being able to maintain a home by herself. For the present, we've been enjoying our lives that are both deeply combined and uniquely separate. We've always known that God is the One who brought her here, and recently we have recognized with gratitude more of His purpose in doing so. 

On May 27 (my 34th birthday) I accompanied my mom to an appointment for a mammogram and ultrasound in order to test the lump in her breast she had recently discovered. We had both been experiencing a supernatural peace since she found the lump. I interpreted this to mean that it would end up being nothing more than a cyst. I found out later that she wasn't so sure. It was both shocking and sobering when we were told following the procedures that she more than likely has breast cancer. Biopsy testing and an MRI over the next few weeks have confirmed this. What we have learned thus far is that she has triple negative invasive ductal carcinoma (a common and aggressive form of breast cancer) and that there is some lymph node involvement. The recommended course of treatment right now includes chemotherapy, followed by surgery, and finally radiation. It has been a very emotional month, but the Lord has so graciously filled both of our hearts with His peace that truly passes understanding. My mom's prayer from the very beginning is that God would be glorified through this all.

Next week I will accompany my mom to her oncologist appointment and to the out-patient appointment to have a port inserted so that she will be ready to begin chemotherapy. I have already taken her to a handful of appointments and some wonderful friends have accompanied her as well when I have been unable to. We have no idea what the next several months will be like, but it could be a very long and trying road. Whatever it looks like, though, I know one thing--I am committed to being there for my mom. 

When we used to discuss the future, she would often lament that her greatest fear was that she would one day become a burden to Shawn and me. She knows first-hand the ups and downs of caring for an aging parent. I was relieved a week or so ago when she told me that her fears about this are dissipating now that she is faced with this present need for help and care. As I said, I don't know what things will look like, but I do know that, whether on good days or bad days, it is a privilege to serve her. I have witnessed my mom's Christ-like service to her family over the last several years--now it's our turn to give back to Grandma Jan! I love you, Mom.