My maternal grandmother lived 102 years and my maternal great grand-parents were each in their late 90’s when they passed away from natural causes. As my mother, a 19-year colon cancer survivor, approached her 83rd birthday she seemed to be in incredible health. She had mowed her almost two-acre yard all summer with a little push mower. When I tried to hire someone to take care of it for her she scoffed that she needed the exercise. I didn’t expect that she would not be alive to see her hundreds of flowers bloom in 2018. I thought I had time. She did too.
Few people like to think about end of life, the less severe term for death. Call it what you will, we all know it will happen, even one day to us. Unlike most, my mother was a realist and she tried very hard to have her documents in order. She talked frequently to me about her requests for the end of her life and her estate. I had the original forms of her Last Will and Testament, Power of Attorney and Living Will. I had keys to her house and safe deposit box. She often emphasized how these had to be kept in a secure place where they would not be forgotten. Fortunately, I had them tucked away in my own safe deposit box.
My mother was a very private person but I think she would approve of what I am about to share because it may help you when you face some of life’s most difficult decisions. I hope I am right.
My mother and I had always shared a good relationship, but it grew much stronger after dad was gone. She became my best friend and we talked daily, often for over an hour. I tried relentlessly to convince her to move in with me. She insisted that she was quite capable of taking care of herself. She was very strong and active but lived in a remote location. I knew that if she fell or got hurt and couldn’t reach the phone there would be no one to hear her calls for help. She lived well over an hour away, so even if she would have accepted my offers to drive her to appointments and such it would have been difficult. She was too independent and insisted on staying put in her little country home. I understood, after all, that was where she had friends, and a house and yard she could tend the way she pleased. It was home. She enjoyed doing things her way on a schedule that she monitored herself.
As I said, Mom (and Dad too when he was alive), tried very hard to have documents in order to make things as easy as possible for me. Both had gone through the process to donate their bodies to U.K. Medical Center for research purposes. They always looked for ways to help others. It turned out that neither of them had their body accepted due to various factors. They would have been disappointed to know that.
Both had made it known they preferred cremation to being buried and neither wanted any kind of funeral or memorial service. I am told this is becoming a more common practice. When Dad passed away my mother seemed fine with there being no service but I found it difficult. I needed closure and to be reminded by friends and family that he was loved. Months later Mom told me she was hurt that so few people sent sympathy cards. I explained that I suspected people didn’t know what to do since there was no visitation or service to attend. I appreciate that sentiment even more now since only a few cards of sympathy came to me after Mom’s passing. I have made a mental note to myself to be sure to send a card to the families of those that I love even if there is no service for me to attend where people sign a book or send flowers. I have told my son that I don’t feel the need for there to be a funeral for me either, but if he wants me to have one that is ok too. Like my parents, I want to make that time as easy for him as I can.
They probably put more thought into their Last Will and Testaments than most people who have wealth. My parents were simple, honest people. They worked very hard for what little they had and were proud to be debt free. I think that is why it was important to them to be specific and fair in how their estate would be settled. I have one child so along with my niece and nephew we would be the four heirs (my sister had passed away 7 years prior). My parents talked openly with all of us about how things would be handled because they didn’t want anyone to be angry or surprised. They would be very proud at how the four of us are took care of things in the manner we know they wanted.
My mother was diagnosed with cecum colon cancer on December 5th, 2017 and surgery was scheduled for the 7th. This was a different type of cancer than what she had previously battled 19 years prior. We were relieved when the surgeon told us that it had been caught early and that the surgery to remove the cancer would be the treatment. We were told that cecum cancer does not respond to chemo or radiation, which I think Mom would have refused anyway having had such a hard time with it during her first battle. The plan was that she would spend about a week in the hospital and then another week at my house for recovery. Her surgeon assured us she would be ready to push her lawn mower again by spring.
Plans. The surgeon reported everything during surgery went as planned and that she felt certain that all the cancer had been removed. I like plans, they let me know what is coming and I can prepare. Nothing could have prepared me for what was coming. Complications started in less than 48 hours. Mom spent almost 2 weeks in the ICU of the small hospital she had selected. It was not close to either of our homes, but she felt confident in the facility and staff from previous her experience. Even after she had left the ICU, for what is called a swing bed, her health seemed to take one step forward two steps back. My routine became spending two days and nights with her then going home for clean clothes and a night’s sleep in my own bed.
I gave them a copy of her living will and was thankful that it was easy to find. Besides taking care of Mom my house was under contract to sell and I was packing boxes any time I could find a few minutes. If she hadn’t hounded me to keep her documents in a safe, easy to access place they might have been in no particular box.
She had made decisions ahead of time and her Living Will dictated there was to be no life support or feeding tubes and included an order for Do Not Resuscitate, DNR. I was not in any kind of emotional state to make these decisions and her cognitive abilities seemed to come and go effected by both her pain and the medications. I am so grateful that she had already made these decisions.
On Christmas morning my plans, (Crazy, but I was still trying to plan.) were to go for a quick run then shower and go spend the day with my mother in the hospital. I forgot to take my phone with me while running and when I realized that fact I cut the course short. I hurried home to find that my intuition was right. My phone flashed announcing two missed calls from the hospital. When I picked it up it started ringing again. “Your mother has taken a sudden turn for the worse, you need to get here. Drive carefully but come immediately.” All of her vital signs were quickly dropping. I was afraid she would be gone before I could get there.
I arrived to find 4 nurses and 3 doctors in the room with my mother. They seemed to all be talking to me at once, some asking questions others asking for information. She needed to be transported to a Lexington hospital where she could receive a higher level of care, but they were also doubtful that she could survive the trip. I was the one named in her durable Power of Attorney, P.O.A. so I was the one who had to make the call on if she would stay or go.
Because of her pain, my mother thought she was hooked up to life support. In reality all she had was a blood pressure cuff, heart rate monitor and I.V. nutrition. I know this is what she thought because in the midst of all the chaos she mustered the energy to lightly pat the side of her bed motioning me to sit by her. She begged me in a weak whisper to make them turn off everything and to let her die. In that moment I understood and if that had been possible I would have granted her wish.
They found an open bed and arranged for the transport while I signed papers as P.O.A. One of the papers I signed was an ambulance DNR. Even though they had her living will I didn’t question signing because I didn’t want to waste precious minutes. I would learn much later that a regular Living Will does not cover measures that may be used in an ambulance. If you or your loved one wants assurance that there will be no CPR, shocks or intubation in an ambulance then an additional document must be signed. As difficult as it was to sign the form I was so appreciative that Mom had already had conversations with me about this and I knew I was following her wishes. I can’t emphasize enough the importance of conversations. Even the best made plans encounter unanticipated circumstances.
She was approaching a month in the hospital so it was also time to activate her P.O.A. at her bank so that I could pay her bills and handle financial matters. I was surprised that as P.O.A. I could write checks or close accounts but I could not add my name to them to make them joint accounts.
Mom had set up almost every payment as an auto-draft. I learned that I couldn’t just tell the bank to stop such payments, rather, I would have to contact every biller. Some were easy to work with and others were beyond difficult. To make things easier for my own child in the future I will not have payments auto-drafted from my checking account.
Taking care of her bills was surprisingly emotional. For the first time in my life I knew everything about my parent’s finances and assumed control. Uncomfortable is too mild of a word to describe how I felt. My parents had never been ones to share information about finances, it just wasn’t done in our family. I imagine that having P.O.A. documents ready was a hard decision for Mom but taking care of bills and banking would have been ten times more difficult had she not trusted and cared enough for me to have this in place.
I’m sure everyone finds different things to be the most difficult. When my mom was first admitted to the hospital I took her purse home with me to keep it secure. Even then, when I thought I would be returning it to her in a week, it felt odd to have her most personal possession in my care. I sat it on the bed in the guest room where it would be ready for her when she arrived. Her purse, with it’s contents, is still on a shelf in my closet. I am just not ready to completely empty it.
There is much that could be told about how I hope you or your loved ones never find yourself in a hospital in need of critical care during the week between Christmas and New Year’s, but that is its own story. On January 5th additional scans were conducted to determine why Mom was not getting better. The next day, while I had stepped out of the room to stretch my legs, Mom was informed that the cancer had metastasized and that she would probably live one to two months.
She took the news much better than I did. Before I got back to her room she had already talked to Joyce, her favorite cousin and told her, “I have good news and bad news, which do you want to hear first?” When told to share the good news first Mom replied, “The good news is that I get to go to heaven soon. The bad news is that I am dying.”
When her pain was at a 7 or higher, and it often was, she would think that she saw cats or dogs in the room. Sometimes she would think she had conversations with her mother or my father. I tried to prepare myself mentally for the time she would not recognize me or talk in harsh tones. Fortunately, that didn’t happen. I learned to assess her pain level by the look on her face. When it was a 9 or ten she would not respond to questions and I would give the nurses the number.
Her weight dropped well below 100 pounds. She was no longer able to get out of bed without assistance from at least one, often two, nurses or assistants. Morphine was given every 12 hours and oxycodone every two hours. One of her many complications was a fistula, a non-surgical colostomy, the bag had to be changed daily. Most of the time she was unable to turn herself in her bed. Still yet, I was informed that she would be released from the hospital into my care.
There was no other family that lived close or was able to help with care so we had to select a care facility. It’s easier for me to call it a care facility instead of a nursing home, even though I know, a rose is a rose is a rose. It was a small blessing that when we were asked to select our top 3 choices for a facility that she was having a day where she could think clearly. The reason we couldn’t pick just one facility was because they might not have an open bed. They would not be able to delay her discharge so we would have to go with which ever one of the three had an opening. We studied Medicare and Health Department ratings for the facilities that could provide the care she needed.
I wish I could tell you that they were able to make her comfortable, but her disease was spreading at such a wildfire pace that by the time her medications were increased to lower her pain the intensity of the pain had multiplied too. I believe they tried, medications were increased about every other day.
In mid-February the social worker asked me if I wanted to consider Hospice. I knew that was my “hint”. They had told me during admission that they were not allowed to make a Hospice recommendation. I told them that I wanted any and all measures that might help take away some of her pain. A meeting was set up for the next day and Hospice took charge of her medical treatment after I signed what felt like dozens more forms.
She hadn’t eaten in a long time and eventually reached the point that she couldn’t swallow to drink. I gave her drops of water from the end of a straw and even with that she sometimes couldn’t get it down. The slightest touch caused pain and I had to remind well-meaning friends to not touch her. During her final 2-3 days it seemed her pain was more under control and I could again hold her hand. She was too weak to talk and only opened her eyes for a second or two when I first came in the room and spoke to her. The nurses said that hearing was the last sense to stop working so I talked to her. I talked about anything I could think of. At one point I laughed and told her that I bet she wished she could tell me to hush. When I ran out of things to say I would either read aloud from her devotion book or just hold her hand. Every time I walked into her room the changes in her appearance were shocking. I took a final picture of her less than 48 hours before she passed, I can’t share that one.
The Social Worker told me during the admission process that once Hospice took control of her care that Medicare and her supplemental insurance would no longer pay for her room and board or therapy. I was glad they had gone over that ahead of time. I am sure it varies from place to place, but for us the out of pocket cost to the care facility was about $230 per day not including therapy. They had also explained that if the combination of her personal finances and the value of her land went below $2000 that we would be able to apply for Medicaid to cover expenses. When it comes to care for your family you don’t want to have to think about cost, yet for many families, it is another source of great stress when life is already extremely difficult. Mom lived 15 days after Hospice took over her care. The out of pocket cost for those days was about $6000 even though Medicare and her private insurance were still paying for the medical part of her care. Various bills continued to filter in for payment for the next 8 months.
My parents had decided that they wanted their estate divided equally among their 3 grand-children and me. They had stated that my niece and nephew would split what would have been my sister’s share and that instead of giving me the other half they would split it giving my only child a fourth. All of us were 100% fine with their decision and agreed it really was their decision anyway. The Last Will and Testament named the four of us and used the words, “share and share alike”. The only problem is that my parents must have thought that their wills would override names on deeds, which of course it didn’t. My name was the only one listed on the deed to my mother’s property where she lived with a life estate. If I wanted to be greedy I could claim it for myself. I won’t be doing that. The deed to another property that was given to my mother by my grand- mother lists me, my niece and nephew as heirs without any mention of my son, the youngest child. I think my grand-mother gave the land to my mother before my son was born and that is why he wasn’t named. Again, they must have thought the Last Will and Testament would prevail. Because of their open conversations we know they wanted each of us to have an equal share. We will honor their wishes, that is simply how it will be.
Again, my parents led a simple life and their modest home was not full of expensive furnishings. The antiques were family items that had been handed down through generations. Their value was more sentimental than it was monetary. Still yet, I already knew from things they had said who was to get many of these items. For example, the old communion table that my sister had rescued from the family church before it was demolished was to go to my nephew, the butter-churn that my great grandmother had used was for my niece. There was not a comprehensive list of every household item but as I packed up the contents of the house there were several items that either on the back or the bottom of the object I found a little paper with one of our names on it.
Even though Mom didn’t have everything perfectly in order she had tried and her efforts made things much easier for me to make decisions and take care of her finances and estate. If she had put this off until it was needed she would have been too ill and unable to do so. I am also glad that she verbally made her wishes known to me and her grandchildren while she was still healthy and there was no doubt that she was thinking clearly.
Getting you documents in order doesn’t have to be a daunting task. Hospice has forms for power of attorney and living will. They are easy to complete but must be notarized. Notary service is typically available at your local public library among other places.
Many people opt to create their Last Will and Testament from online sources such as Legal Zoom or Office Depot if their wishes are not complex. If you are more comfortable or your estate is complex using an attorney is always an option.
As for me, I am trying to pay Mom’s gift forward by sharing this information and encouraging you to take care of preparing these documents and making your family members aware of your wishes for end of life. Regarding my personal documents, I used the forms from Hospice for my P.O.A. and Living Will. I used an online service for my Last Will and Testament. I only have one child so it is very basic. I had these forms notarized and appropriately filed. The originals are in a large envelope that I keep at the top of the stack in my safe deposit box at the bank, my son knows this. He is listed on the card so that he can have access when he needs it. Now I must give him the key, he will need it at some point. I want to think I have time; but none of us know that for certain.
Photo credits Bence Boros, Alex Smyntyna, Artem Maltsev and piron guillaume on unsplash
This is a shorter version of my story originally published in Southern Kentucky Health and Family Journal, May 2018. Copyright Suzanne Pogue, 2018.