Patricia is someone whose life is centered around family. Each day is one more opportunity to show my loved ones how much they mean to me.
Mini garden outside of Ruth's tiny house
This article is personal and very close to my heart. However I hope that relating my experience will offer some solace or food for thought and maybe even some comfort to others who have walked this walk. As a caregiver on a day to day basis, life changes dramatically and a certain type of rhythm evolves. Without realizing what is happening to the caregiver, stress creeps in and guilt at times. But it is wondrous and a privilege and honor to spend the last weeks of life with someone that one has loved seemingly 'forever.'
Due to privacy considerations for those who may read this I am not going to be entirely forthcoming about whom I write. But I feel a deep need to write about this person and the time I spent with individuals included in this article. The loved one about whom I will write will be identified as "Ruth" in this article.
Photos will not be of the persons involved either in order to retain their privacy.
The journey began
At the end of June this summer of 2019, a phone call came that began a journey that would be life-changing. The caller informed me that Ruth, a loved one very close to both of us, had received a diagnosis that was ominous. The caller had been informed that Ruth had cancer and that the prognosis was grim--possibly only a matter of months remained. (The surgeon had told Ruth this possible diagnosis but had not put it into a time frame because even though it appeared to be a worse case scenario, he did not want to share that until he was absolutely positive. He had shared suspicions with her daughter as a way of giving her a ''heads up". By this point my sister had already lost a lot of weight and was fragile.)
With no thought of how I could make it happen, I knew then I would travel to Austin, Texas to spend as long as I could with the lovely person who was suffering.
This tiny petunia became a symbol of hope during those days with my loved one
Sprung from the hospital
As quickly as I could get it done, preparations were made to make the trip in my trusty little Honda Civic across several states to be with Ruth who was now gravely ill.
Upon arrival in Austin, I found she was in the hospital with an infection which was being treated. She was not happy about being there...she had spent so much time in and out of the hospital in the last few years that a HOSPITAL was the last place she would like to be. It was not that the care was not good....not that at all. She just wanted to be home and with her familiar surroundings.
Four days later she was released from the hospital..
Hearing the unwanted news
On the afternoon of her release from the hospital, her daughter and I traveled with this precious lady to see a surgeon. He had news for her about a biopsy that she had had weeks earlier. She was in the hospital when her first appointment with him was scheduled which is the reason she had been unable to follow-up. When we went in he made usual greetings and we all had a seat. The doctor began by saying that he had found abnormalities. He continued gently and apologetically by saying, "I am so sorry to have to tell you this. I wish I had better news. But you have cancer and it has metastasized. There is nothing that can be done."
This precious lady took it all in and was so appreciative to this amazing surgeon who was so sensitive but so candid. None of us wanted a rosy picture painted if such was not the case. We wanted to know what had been found and how to proceed. Without mincing words but calmly and in such a sensitive manner, he told our loved one to go home and live her life. He said he would see to it that she had medications that would keep her comfortable. The elephant in the room was the "how long" question which as we know is really not determined by someone on this planet. Based on cases such as this he was thinking probably three to six months. So as we left we were already making plans to go on a cruise before she left the planet. That cruise would never happen.
A routine, of sorts, was established
Our day to day life was pretty much focused around Ruth's home. From time to time during about the first ten days we would go to a nearby quilting shop where my loved one conferred with the owner who was also her friend about future quilting projects.
Most of our forays out of the home were to medical facilities to see one doctor or the other.
And I was often squawking about such trips. Here I was in a new town where I knew where nothing was and it was necessary for me to drive hither, thither, and yon. I am one of those who likes to KNOW exactly how to travel to and fro from a spot and found this traveling to places unknown not my favorite thing. I did thank my little lady on my Google maps who got me to everywhere with no trouble.
Ruth's youngest daughter was a breath of fresh air
As I walked this walk with my loved one, Ruth's daughter walked it with her Mother and with me as well. She was 'on' 24/7 as was I even though she was not physically with her Mother all of those moments. She was available to her precious Mother and to me any time of the day or night. She worked long hours which began early but she was in touch throughout each day and thoughts of her Mother were always present.
She came to visit any time she had free minutes sometimes during the day when she could steal a few minutes from her work to stop in. When she entered the room, it was that proverbial breath of fresh air that entered. The joy at her presence shone in Ruth's face at the sight of this precious daughter. And it was re-energizing for me when she visited as well. She is a vivacious and compassionate loved one who helps me every day to come to terms with this loved one's death. Even though we do not text daily or even weekly, contact is there and thoughts of her Mother and of the time I spent there are always very near. She treated me so amazingly kind while I was there---so aware that while she was being torn inside out by the knowledge that her darling Mother was leaving the planet too soon, that I too was feeling much the same as she was.
A daughter such as Ruth's is an amazing gift indeed.
Nights filled with tears and laughter
How was this life-changing? The answer will evolve as this article continues to unfold.
Usually I can find just the proper term to describe how something affects me but to describe this experience seems impossible.
It has been my privilege to spend final moments with other loved ones. But this time was different. This time I would spend four weeks with someone I loved (and still love) very much. Basically for the first about ten days I was 'on' 24/7.
Medication and trips to the potty went on all night long. I slept beside my dear Ruth which meant each time she moved even a bit, my eyes popped open. One of our greatest concerns was her falling as she was not sure-footed at this point. She had a cane and the distance to the bathroom was short but the possibility of a fall was real. So we were up together many times during the night. Often when we awoke in the middle of the night, we would not go back to sleep. We would chat and laugh and, yes, cry about things of the day or of the past. We would hold hands or stroke each others face with no words at times. The words I LOVE YOU were spoken often and carried so much joy with them. We chatted and laughed and cried till the sun rose and then it was time to begin the day. Obviously there was not a lot of sleeping going on during these weeks.
Food became an issue before I understood
The day would begin with one medication and then usually with an Ensure shake. The Ensure would be placed in a tiny blender and Carnation Instant powder would be added with a splash of whole milk. Usually this mixture was placed in the freezer until it was frosty cold. Often this would be the most that our loved one would consume during the day because by this time nothing really was appetizing.
Food that was requested would be prepared and then when she began to eat she would find it just was not something she really wanted. So I would try to find something else she would possibly enjoy.
Sometimes nothing would be something she would care for. Almost nothing appealed to her. Food just did not have any flavor or the right flavor for her. And something she may have relished just a few days before, she had NO desire for the next time it was offered.
A time to walk
Ruth's daughter was amazing throughout this whole time. She realized I needed to be able to walk so she began to come over at six in the morning so I could go out. I had to walk then because it was H-O-T in Texas this summer of 2019.
It gave Ruth's daughter the opportunity to visit with her Momma and her Momma thoroughly enjoyed it. After about a week though we switched to evening walks as it was too much for her daughter to come at six in the morning as she often was working till one in the morning. I usually would go to HEB and walk as it was just still sizzling outside and the walk in the store was nice and cool.
Exploring new food options
One evening I suggested to Ruth's daughter that perhaps she could take over the evening food for her. It was the hardest. After having been up most of every night and 'on' most of the day, it was too much to cook food and have it not be something Ruth could enjoy. So Ruth's daughter began to be responsible for evening food. Sometimes Ruth would eat a bit and sometimes not.
We began to adopt the attitude that whatever she ate was a good thing. So throughout the day different suggestions were made and sometimes Ruth would have a bite or two of something. When that happened we thought it was a good day.
Hospice care began
We were supposed to have home health care come to help oversee the care of Ruth just after her dismissal from the hospital. However for one reason or another their services never began.
We were able to begin Hospice care about 10 days after coming home from the hospital. The person who came from Hospice explained how it worked and reassured each of us that individuals went in and out of Hospice care depending on how well they are. She wanted us to know that it did not mean imminent death and that if Ruth made remarkable progress, she would be released from care. And if and when she needed it again, their services would once again be available.
And so their services began. A nurse came to check on her every day. The visit was not hurried but was rather a time for Ruth to share her thoughts and feelings and for the nurse to answer any questions or either of us had.
The particular nurse that came to see our dear Ruth was a most compassionate and caring individual.
She left a folder with a little blue leaflet in it. The leaflet held information on what to expect when someone is dying. One of the bits of information that struck me right between the eyes was : "fluid and food decrease...may want little or no food or drink. Do not force them to eat or drink if they do not want to." Now it was making sense. Now I understood.
Hospice was available 24/7
It was so important to have a nurse who was available any time of the day or night. Things would happen outside of usual office hours but we were told to call with any need or question.
Anything we needed was provided the very next day. It was incredible. It was not a case of hurry up and wait....it was ask and we will deliver. That in and of itself relieved a huge amount of stress.
Vibrant, enchanting blossoms one highlight of my morning walk
A social worker also came who would offer suggestions and ask how she could help. A chaplain also came even though Ruth had her own minister from her church. And both of these ladies listened attentively while Ruth recounted a story that was important to her. And both returned and were welcome.
It was so important to Ruth to share her thoughts and experiences not only with her daughter and me but also with those who visited.
One thing she repeatedly shared was: "I am not afraid. I know where I am going."
And that was true....she never expressed fear. She had said to me the day after she came home from the hospital stay: "Is it wrong to pray to die?" (She was profoundly tired and pain had become more evident.) And I thought for a moment and said: "No but....how will you feel in a week? in two weeks? in a month?"
Even though I could see she was slipping away, she was not at her worst at that point and I guess I was trying help her refocus her energies. She had a very close connection to the Lord and was ready to go sooner than we were ready for her to go.
After asking me that on an early Saturday July 13, she seemed to have a renewed energy within her spirit. Her fragile little body now was down to 122 pounds having lost over 40 pounds since February.
There were many very emotional moments. One morning I took her hand and said:
"We walked through the valley of the shadow of death when you lost your two children too soon. And now we are walking through it together for you." And she simply replied, "I know and I am so thankful that you are here." And we wept.
Sometimes we held hands and just cried. How could it be ending? We had been best friends all of lives and had so many plans of more fun times to come.
One especially poignant moment was about mid-morning one day. Ruth began to cry...weeping mournful tears.
"I can't remember the words," she cried.
"What words?" I asked.
"The words to the 23rd Psalm," she managed to say through her tears.
I could have said them to her. But I wanted her to be able to see the words and say them aloud. It was her favorite Psalm. So I pulled it up on my phone and she read the words aloud, tears streaming down her face.
Psalm 23 King James Version (KJV)
"23 The Lord is my shepherd; I shall not want.
2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever."
A Song Ruth Wanted Sung at her Celebration of Life
A time to live and a time to die
Life-changing? Yes. I will never be the same again.
I was there and had the honor of helping to usher someone that I loved for so many years through the last days of her life
How humbling was that for me. It changed me at the very core of who I am. It made me realize how very precious each and every moment is. And even though my mantra and the mantra of my daughter has been....do not miss one single minute of any day...this gave a greater depth of meaning to those words.
I also understood what a dear friend of mine had gone through as he spent the last two years of his wife's life being her 24/7 caregiver. I had NO idea what that meant even though I had been there often we he cared for her. Until you walk in those moccasins it is truly impossible to understand.
And I mentioned feeling guilty. I felt guilty because I was praying for the strength to be able to get through another day. How could I be so selfish? Thinking about myself when this precious loved one was struggling to survive??
One of the most difficult parts was sleep deprivation. There were no periods of true rest as I felt responsible every moment.
But I must reiterate. As hard as the journey was I would not have missed one minute of it. I replay often those days and sometimes it is very difficult. I am on my way to recovery.
About six days after I returned home another precious loved one died. It was shattering but she had been ill for years and now is no longer in pain and feels no sadness. It just shook me because I was losing two loved ones so close together.
I know the cycle of life is that we are born, we live a bit, and we die. And some of us believe that after death of this physical body, our spirit lives on...
Ruth's decline was very evident and then she was gone.
About three days before I was to leave, Ruth got up to try to go to the bathroom just as she had done so many times. But her legs would not move. So I carried her to the bathroom and back to bed.
And with a broken heart, I said to her:
"We can't do this any more. There is too much danger of you falling."
Within four hours a hospital bed was delivered and set up. And that was the beginning of her real decline.
I had to leave a few short days later. Another daughter had come from her home out of state to fill in for me.
Leaving was one of the most difficult things I had to do. I knew that I would never see her alive again. So as I headed out the door, I turned back and said to her: "I will see you on the other side."
There is much more to this story but alas I do think I have told more than enough.
A story of true friendship came out of this after I left Austin but that is a story for another day.
My precious Ruth died six days later with her daughters and granddaughters and a niece by her side. She is now at peace and out of pain. My heart aches for her every day. I wait for a text or a phone call and they do not come.
Enchanting little mini-tunnel at Bee Cave Park in Austin, Texas
I Love you more decor on fence at B and B in Austin
I Love You More
Our precious Ruth would often end her conversations with us by saying:
"I love you the moriest" and that is why I shared the photo at the entrance to a B and B in Austin.
© 2019 Patricia Scott