Where do I begin on this journey that seems to have no end, no conclusion? Kris is still at Heritage Creek, the beautiful facility where we moved her in August, 2014. Leaving her to come home to Florida in mid October was extremely difficult, but I left with a sense that it was time and we were ready. We simply had to come home and I felt a peace about Kris’s surroundings and good staff. Kris was now in assisted living, not rehab. It was new and clean with great care. She would be okay.
From the start after she went to Heritage Creek, the hope of giving her pureed and toddler food began, although I was the only one permitted to feed her by mouth. A swallow study was conducted on October 1, and she passed it with flying colors! That meant others could now feed her, and we started buying toddler food and juice. Kris was eating and learning very slowly to drink as well. But there were issues.
Once she was at Heritage Creek, we immediately worked to get Kris off some of the horrible medication she had been on for so long. I won’t begin to try to explain the problems with psychiatrists at the former facility, and now we faced even greater problems: no one would take the responsibility at the VA to remove the drug Lamotrigine. Bursts of uncontrolled laughter at anytime, anywhere would erupt from Kris, then uncontrolled crying. It was the worst of side effects and it both frightened and embarrassed her. She endured for months and begged everyone to help remove the drug, even her husband. Eating soon became an issue for fear of choking. Sadly, it took until my visit in January and a meeting with a special neurological team. They made the decision, then we met with a neurologist intern at the VA who gave approval to remove the drug.
Since she still would require some maintenance therapy at least, especially after we left for Florida, we partnered with the VA’s Home Base Care program, which provided Kris with a personal care physician, a visiting nurse, and eventually OT and PT and speech. It started as a good idea, since therapy would be coming to her at the facility, and any needs she had would be addressed there by the visiting nurse. Things have changed since my last visit and I find that I am no longer permitted to have information about Kris from the Home Base Care folks.
Her son, Joshua, is out of the Air Force now, but is able to come and visit at least once a week. That helps to brighten her spirits. There are others who come regularly; many who take her to the beautiful Catholic Church where Kris enjoys going. While we are not Catholic, we have so thoroughly appreciated the homilies and the moving Masses we have attended with Kris. However, it was always sad to watch Kris simply receive a blessing, and not be able to take the Eucharist at Communion since she cannot eat. I will tell you, however, that just a few weeks ago, Kris received a small piece of the wafer, and was able to take it in her mouth. She received Communion, and we were overjoyed for her. What’s more, the priest came to visit Kris at Joanne Kirschbaum’s request, and Kris was able to give confession. It has meant so much to our daughter, and I believe God is blessing her in so many ways in spite of the trials she yet faces.
Col. Kirschbaum, Ret., you might remember, visited Kris often when she was yet at Dripping Springs, as did Col. Rick Reusch, Head of Nursing at the VA’s Polytrauma Rehab Center, another long time friend. Of course, there is the faithfulness of Manuel, a trusted friend since Kris first joined the Air Force in 1984 and served at the Wilford Hall Hospital with him. Manuel makes sure Kris walks and rides the stationery bike every time he visits, he keeps her supplied with applesauce, and he now takes a turn at feeding Kris when he’s there. It has given him joy, I believe, to be able to help her now.
When I returned to see Kris at Thanksgiving time, she and I went to Mass on Saturday evening, as is her custom. But we were able to visit the huge University United Methodist Church together again on Sunday morning, and the new friends we had found before we left in October were bringing us together with yet other dear ladies. It is a very special group of “angels” who call themselves the JOY Group. (Just Older Youth.) I will tell you that, as of this writing, these ladies have taken it upon themselves to visit Kris as often as possible, which means multiple visitors during a week’s time. They have mounted the effort to make certain she is kept stocked with toddler meals and applesauce, too, and now two dear ladies have, at separate multiple outings,taken her shopping.
Kris is now riding the motorized carts at Walmart and, recently, at a Target store, and she is maneuvering with great skill. She’s doing so well, and is able to carry all her supplies in her basket, and the delight on her face I know must be fantastic to see. Kris loves to be outside, whether at a park or the Walmart. She loves to visit with folks and they have opened doors to her in so many ways to take her here and there. With cold weather, it’s been difficult, but I keep telling Kris spring is just around the corner.
Several of the ladies have now taken it upon themselves, at different times, to join with Kris in a Bible study there at Heritage Creek, lead by a Catholic deacon. So loving are all the JOY ladies, they saw immediately Kris did not have a Bible. One went to a Catholic bookstore and promptly bought her one on behalf of all of them. Yet another is helping Kris to re-learn the Rosary and sits with her as often as she can to do so. One of the ladies brings her granddaughter to see Kris, which delights her and the little one. They have bonded and when Kris was riding the cart recently at Target, little Cassie kept looking back to make certain Kris was right there.
With it all, however, the cold days and a frightening issue with sleeplessness just now is plaguing Kris. Efforts to change the sleep med are in the works, I understand, only because the visiting nurse slipped and told me “it’s (the sleeplessness) being worked on.” Beyond that, Kris has also fallen into some serious depression, as noticed by one of the dear JOY angels. I emailed the Home Base Care director, but received no reply. They did, however, set an appointment with her Home Base Care psychiatrist for April 1st. My first thought, however, was why would she go back to see the man she knows would not remove the terrible drug which made her laugh uncontrollably? Surely, the trusted doctor who gave her the competency evaluation in January would make her more at ease, and she could feel a closeness to him since she passed that evaluation with flying colors as well.
This has been quite an overview and likely sounds a bit different from the past ones wherein I extol the great job Kris is doing, and how wonderful she looks. And, believe me, every bit of that is still true today. Kris is pushing and trying just as hard as possible to speak, and is learning to eat more and more in an effort to slowly work off the PEG tube feedings. She is walking everywhere and seldom does anything or goes anywhere without her walker. The wheelchair is left behind. Kris is doing her very best to make it, to accomplish it, and she is doing it with the help and constant support of the JOY ladies and all the other friends who know and understand. She is doing it on her own.
George and I are working now; he part-time as transport driver at the same facility where I work full time as transportation and front desk coordinator. It’s a fast-paced, hectic job, but it’s what I need to keep my mind busy and full. Kris and I Skype just as often as we can and always, always, we pray for the outcome she wants most of all one day: to come home.
Our son, John, is doing remarkably well, with no new spots and less problems with the oral chemo than before. Good days now seem to outnumber the bad ones, and we are so extremely grateful for that.
God is listening! And He is answering. As we approach Easter, the celebration of the death and resurrection of Jesus, He who died for all of us, I pray with all my heart for the prayers of our heart to be heard, and we turn both Kris and John over to God’s faithfulness. Be blessed during this time of deep emotions and healing.
We are ambassadors for Christ, as though God were pleading through us: we implore you on Christ's behalf, be reconciled to God. For He made Him who knew no sin to be sin for us, that we might become the righteousness of God in Him (2 Corinthians 5:20-21).