A changing Journey

My special friends,

Our journey has changed dramatically since I last wrote. I am heartbroken to report that Richard has declined tremendously. These past few days have been a blur. They have also been very painful for us all. But we are supporting one another. I believe things are progressing as best as they can at this point of our experience with brain cancer. I am sad and frightened for us all. But with Richard as our teacher and model I have faith that we will make it through this horribly difficult time with strength and courage.

In the wee hours of Monday morning, my once robust husband, took his first fall getting out of bed to use the restroom. Up until that time he was moving with stability (although his gait had changed to a shuffle) and requiring no help to do anything. Sunday morning he had gone out to breakfast with my Mom and all of our children. He walked into and out of the restaurant without assistance. We all were amazed as he ate six pancakes scrambled eggs and hash browns (no, his appetite has not changed!)!!!! The previous evening he had gotten himself ready for bed and climbed in as if it was another day.

Needless to say, this fall took he and I by total surprise. As I have written before, there were significant changes in gate and speech…also sleeping more…..and lots of cognitive decline…but something changed in those early hours that seemed to make everything drastically different.

We had to get up early on Monday morning because it was a chemo day and we have to drive an hour to get to the cancer center. My friend, Sheryl, was arriving at nine. When the alarm went off Richard stayed in bed which is very unusual. Up until that morning he had always gotten up to made the coffee while I fed our dogs…but that morning he didn’t move and I did the morning “get up routine” on my own. When I went back into the room he said that he was going to need help getting up but that then he thought he could take care of the showering himself. In getting him out of bed…his legs buckled and he fell again. He needed lots of assistance getting to a standing position. My arthritis has left my arms, neck and back so weak….but somehow the strength came and I was able to get him standing and with a considerable amount of help he got into the shower. After I got him dressed he wanted to lay back down in bed as I showered and got dressed.

When Sheryl arrived to drive us to Everett she helped me pack up our bags and I took care of the dogs. It took both her and I to get Richard out to the car, using his walker (Thank God I had gotten one as requested by the doctor during the week before). After a Starbucks stop we were on the road. Richard ate the breakfast I had packed and half of a scone and then he immediately feel sound asleep on our way to Everett. It was a difficult drive….knowing in my gut that everything had changed. I texted my sister-in-law angel, Pam, and she met us in the garage with a wheelchair. We unloaded Richard and got him upstairs to his appointment.

They put us in a private room, drew blood and then they wheeled him over for his appointment to see the doctor. Dr. Congdon met us with a very sad look on his face. After talking for a while, answering questions etc., the doctor told us that he feared that a small part of this sudden leg weakness may be due to the steroid increase, but that decreasing the steroids would put Rick at a higher risk for seizure. We decided to lower the dose to see if that had any significant change. He then told us that his biggest fear was that these symptoms were related to a sudden surge of tumor growth and once again he explained his on-going worry about continuing a round of chemo when he felt we were seeing tumor progression. Richard asked how we could tell if these symptoms were due to tumor growth and the doctor explained that we would need a new MRI. Rick stated that he wanted to continue with this chemo treatment. So we decided to proceed and then scheduled an MRI for the following week with a plan to go down to Everett on his next scheduled chemo day (Monday, January 26th) to hear the results of the
MRI.

After his treatment Pam and her husband, Scott, drove us back to Bellingham. When we arrived home, we put Rick to bed, Pam started dinner and Scott and I went to a medical supply store to pick up a wheelchair, a urinal and a shower seat that the doctor had ordered. It was obvious that I couldn’t take care of Richard by myself and so Dana (his son) came home from Seattle and has been by Richard’s and my side ever since. Our daughter and her boyfriend have also been here when she wasn’t working. They also have been an immense help.

During that night Richard fell again, even with using the walker and with me holding him up. His gate suddenly changed. He and the walker went flying in different directions and Rick landed on his face, hitting his left eye on our scale. I screamed for Dana and he came running, Richard is now sporting a frightening black eye.

The next morning I called our local doctor (Dr. Gittle Goodman-Wilson) and brought her up to date with what was happening. I told her my “take” on our meeting with our oncologist and Richard’s desire to continue chemo. but that I suspected that we were looking at tumor progression. That day she contacted the oncologist, called me back and we made an appointment to see her on the following day. The sweet woman called me again that evening, asking me about how things were going and offered to come to our house to check Richard out…but I felt like we could wait until the following day to see her.

That same day I also called Richard’s old place of employment (a wonderful care facility where Rick was a nurse and then the medical record’s director) and asked for some help. When I explained our situation the angel I spoke to (one of Rick’s dearest friends) said not to worry she would get on this and see us after work. That afternoon three angels arrived, one with a variety of medical supplies that filled our dining room table, one with a huge box of food and a physical therapist with more equipment. She taught Dana and I how to do safe bed adjustments and transfers. She asked Richard’s permission to bring in a commode to make toileting easier and he agreed (She later dropped one off), and made some adjustments to our current set up so that caring for Richard would be easier. It was an amazing hour and after they all left the three of us cried with appreciation and total love for these women and all the people at Mt. Baker. They totally embraced us and helped us all immensely.

Since we arrived home from Everett I have watched my husband weaken and change minute by minute. When we tried to get him up for the doctor's appointment it became obvious that he was way too weak to go and I called the doctor’s office and told them. Gittle called me back and said she would come to our home that evening. Pam came up so that she could be part of that appointment.

Richard fell again when I went to let the dogs in. I had left him on the commode and he fell trying to empty his own commode pan. He did get to the toilet (a total miracle) but then fell into our closet. When I found him his was laying flat on his back in our walk-in closet holding the pan proudly in the air. When I saw him I burst out laughing, went and got Dana and after the three of us got over our hysterics, we got Rick up, scolded him and put him back in bed. He spent the entire day sleeping in bed and begged us not to make him get up. It was so painful to watch.

When the doctor came she examined Rick and then sat on the bed with all of us and talked to Rick about our options. In the end Richard agreed to bringing hospice in so that they could help us. It was a heart breaking conversation but we all agreed that we needed help. I was already experiencing significant arthritis pain. Even with our strong 26 year old son helping me, lifting a two hundred pound man has been really hard.

I am so sad…heartbroken. I am watching my husband change right before my eyes. I know that tomorrow a hospital bed will arrive. Last night was so painful because I sensed that it may be my last night of sleeping with my husband and our comfy big bed. He was so restless and uncomfortable throughout the night that now, I can’t wait until we get the hospital bed. It will be so much easier to help him get comfortable and to move him safely.

My grief is immense for all of us. Watching our children (my son will join us soon) and both of our families as they slowly accept where we are headed has been excruciating. Feeling Richard’s deterioration has been awful.

I also know that this is a blessed, holy time for Richard, myself and our families and friends….and want to honor it with as much grace as possible. We have all become witnesses to a holy transition and we are assisting Richard by caring for him, loving him and just being with him. I know he is constantly surrounded by angels....actually I feel them all around us. If you listen real carefully you can hear their soft voices, their melodies, their on-going rituals as they help Richard face this part of the journey.

I keep thanking him for letting us care and love him. I keep assuring him that he has done well....we are all doing O.K. by using his example. He has helped us gain wisdom and courage to do our holy work in tending to him. We are all touching him, holding him, spending time with him in bed. I believe we are all being intuitive as to what exactly needs to be done as the time passes. Tonight we all got in bed with him, including all three dogs....and held him as he snoozed and we all got silly. It was wonderful and Richard was so peaceful and happy.
Please pray for Richard...that he may remain peaceful and protected at this time. Please pray for all of us as we love him and care for him.

This has been a difficult post. but probably one of the most important. I love all of you. I feel you all embracing us...I can feel your warmth. Thank you for continuing to hold us close.

Blessings,

Sherri