Saturday, January 18, 2014

Hospice Journal

Below are my Facebook updates as I continue this journey with my Dad.

Thankful that I was able to get a good nights sleep. I think it was a combination of back pain, stress relief and sheer exhaustion and wow did I need that sleep. I got up early and returned to the hospice by 8:00. I wish I could say that ...Dad was happy and well rested too, but instead he began to complain as soon as I walked in. His eggs were cold, his coffee was cold, he didn't like it, he wanted out. I raised my voice a little and said "Dad, I am trying to do the very best I can for you. You are losing your strength and I can't take care of you and keep you safe on my own." He yelled back "I know that, you keep telling me the same thing over and over." But then in the next breath he wanted to get up and go to the bathroom. I explained he could not get out of bed on his own and he needed to call the nurse. And then I got wasn't about the cold coffee or cold eggs, it wasn't about being here...his anger was coming from having to ask for help and being at a point that he could no longer do anything on his own. I took a deep breath, spoke calmly and said "Dad, I know you have done everything on your own for the last 84 years and you did it well...and I now realize that you are not used to and don't like having to ask for help and I'm sorry that this is so hard for you." He began to cry and I could see that I was getting close to figuring out what was really going on. After he wiped his eyes, he pushed the button for the nurse and he asked to go to the bathroom. It took 3 nurses to get him out of bed and on the commode. They quickly decided they needed to bring in equipment to help assist them. Dad then asked if he could brush his teeth and the nurse helped him do that while in bed. A short time later he hit the button again and asked if he could shave. The nurse asked if he wanted to do it or would he like her to do it? Dad said she could and when she finished he said "She does as good a job as I do". We were beginning to turn the corner. He next hit the button and asked if he could change his shirt and wash up. The nurse who came in this time was also wonderful and talked him through everything she was going to do. They talked and laughed together and I began to breathe again. When he was finally set and satisfied I noticed he still looked tense and continued to sigh. I asked him "Dad, what's wrong?" He became terse again and said "I'm making the best of it that I can." And then he finally got to the real problem. "I'm only here for five days and then what happens to me?" And now I had the real problem. I explained to Dad that instead of just doing the 5 day respite stay he had come into acute care and as long as he wasn't doing cartwheels in his room next week he could stay here for as long as he needed to. You could see the sense of calm move over him and he simply said "Well okay..then". I'm sure he will still find things to complain about, I wouldn't expect everything to change...but he is adapting to his new surroundings and I am breathing and feeling blessed again. So much of this journey can bring out the very worst in people...pain, loss of movement, loss of independence, being moved out of your familiar home and surroundings, having people make decisions for you, having to rely on the care of others for things you have always done yourself...any of those can trigger a less than desired reaction. By the time I left him in the company of Dave I could leave knowing he was going to be okay, spunky but okay and I know he is safe and is being cared for by some of the most wonderful caregivers I have ever seen. Looking so forward to another night of sleep.

The last couple of days are kinda hard to describe. We all know or at least can imagine that the process of dying is often times difficult. Everyone reacts differently, from the person dying to those who are surrounding and supporting them.... My Dad's wishes were to die at home but his circumstances did not make that possible since he began to lose his strength and movement and he is not a little guy. More than likely the cancer bone spurs in his spine are causing his neurological decline. However, nothing could prepare my Dad for the quick decline of his physical function when his cognitive abilities remained in tact. So, he became angry, depressed, anxious and sad beyond anything I could have imagined. Although the Columbia St. Mary's Hospice is a beautiful place with amazing Dad just wants to die...and it is not happening quick enough for him. My mind knows that his anger is not at me or my siblings but is instead at his situation and he is so beyond ready to leave this earth and rejoin my Mom. Part of me is sad that he no longer wants to talk with us, that he will sob and cry out to my Mom and God but he can not carry on a conversation with us beyond what he currently wants or needs. I received a phone call yesterday morning from my Dad and he told me I needed to get him out of there, he hated it, the food was terrible, he didn't like the people and I needed to come get him. Dave and I decided to have a mini intervention but unfortunately my sister Wendy got there before us and got the brunt of the anger and when I walked in I got the sobbing and him asking repeatedly to die. As I tried to reason with him he told me "I don't know what you want from me, I just want to be miserable." As we explained that we were doing the best we could his only response was "I know that, I don't know why you keep telling me that". Today he is silent unless he needs or wants something. He rarely makes eye contact and spends most of his time looking at the church picture of my Mom and him.

I remember reading: Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence.

Actually...the silence is much easier than the anger or sobbing. At this point we know we just need to be there, not talking, quietly allowing him to focus on the process of dying. Tonight, my Dad required morphine to reduce his pain and hopefully he will sleep well. Tomorrow I will quietly read aloud the daily prayers Sam and I follow from the Lutheran Hymnal, maybe play music softly unless he tells me to stop and then I will and I will quietly sit by his side. We have all come to the realization that this is his journey, we love him, we will be there for him, we will support him in whatever way he needs us to and we will take comfort in knowing that soon he and Mom will be together again.

Sitting here with my Dad and struggling to put my thoughts into words. Today they decided to give Dad hourly doses of morphine which has made him more comfortable. They think he may have had a mini stroke or the cancer in his spine has and he no longer has any movement on the right side. They told us that he is steadily declining and while he still has cognitive function we should tell him anything important. We took turns letting him know that we love him and that we are okay and if it is his time to go it's okay. A lot of tears and each of us struggled to get through. We asked him to tell Mom how much we love and miss her and we assured him that we will love and miss him too. We promised him that everything was okay and that we were taking care of each other. As each of us spoke, he sobbed and it broke our hearts but we are hoping he can continue to let go of this world and move peacefully into the next. Tonight they added patches to help with the congestion and gurgling. We are listening to his and Mom's favorite song "Unforgettable" sung by Nat King Cole and Natalie Cole and he has fallen deeply asleep. I finished the day with the nightly prayer and the prayer for the dying and now struggle to finish this post through my tears. My strength and peace are gifts from God and my faith is strengthened knowing that soon Dad will be pain free, cancer free and back with my Mom. where do I start? Yesterday was really hard, Dad now receives morphine every 10 minutes with an additional blast available as needed for pain. He slept most of the day, had shallow breathing and at times would stop breathing for 30 to 40 seconds. We called my brother Steve and Martha to come and see Dad. As I held Dad's hand and told him that everything was alright and that I loved him ...he squeezed my hand and would not let go. I took this as a sign that I should stay, so Dave and I decided to spend the night. It is so very hard to watch Dad go through this but I felt so good about the wonderful care I saw him receive throughout the night. The people here are truly wonderful caregivers. Ben came in later at night and got to see a few sleepy Grandpa smiles.

Today Dad had a bath early and when I came into his room he was wide awake. His left arm came out from underneath his covers and he began to rub his face. I told him they did an excellent job shaving him and he was as handsome as ever...and he smiled! I was shocked because we have not seen any sign of movement for the last day and a half. I will save that moment in my mind and heart forever. His big baby blues wide open with a big ole grin as he rubbed his chin, he looked like the Dad I remember and not the one cancer has attacked. He was awake for quite some time and I decided to ask him if he would like to watch Mom's memorial video, something he has not been able to do since the funeral...but this time he nodded yes. He watched and he did not sob, I however was a different story and as soon as I saw the pictures of Mom with my children I fell apart. The challenge of losing both of my parents in a year...I can't begin to describe the hurt...but knowing they will be together again gives me great joy. We have had a lot of moments today. The doctor came in and Dad seemed to follow the conversation and when asked if he was comfortable, he said "Yes". We have not heard Dad speak for quite some time. He smiled as he watched Let's Make a Deal. In the late morning he drifted back to sleep but when Jeff was ready to leave and told Dad goodbye and that he needed to get home to watch Sammy, Dad smiled again. When Jeff told him the story about Sam watching the snow fall and that it was "bootiful", Dad smiled again. He always liked Jeff and enjoyed when he would visit.

Susan L. Mayer
January 17

The nurses had Dad on watch last night, coming in to check on him every 1/2 hour. Dave and I continue our nightly sleepovers because we don't want him to leave this life without having someone who loves him near. We had a lot of moments las...t night. We prayed the Lord's Prayer over him, I hummed one of his and Mom's favorite songs just like she used to do, I held his hand and I prayed that God would allow him to leave this earth in comfort and peace. Had a long talk with the chaplain today, such a nice, caring man. We laughed, cried and talked about life, my Dad, my Mom and Sammy. I went home to take a shower and get extra hugs and kisses from Sammy, he must have said "I lub you, Mama" 15 times while I was there. Oh how I love that little boy. Feeling blessed to have my family rallying around Dad. We love you Dad, we love and miss you Mom...soon you will be together again!

Jeff brought Sam to the entrance of the hospital so I could visit and give him a hug. Although there are a few people in hospice with infectious diseases we decided that a quick visit with Grandpa would be okay. I loaded him into the wheelchair, Jeff parked the truck and we headed up to see Papa. Everyone was greeted by Sam with a smile and "Hi Lady" "Hi Man". Sam's presence lifts your spirits, you can't help but smile at him. As we entered the hospice he continued to greet everyone and this little boy just emits sunshine. He came into Papa's room and in his normally loud voice, said "Hi Papa". He said "Papa sleeping" and then he said "Papa...Grandma". After that he was ready to go and he continued to spread his sunshine all the way back out to the truck. After a few more hugs and kisses he went off on another Sunday adventure with Daddy. Love that boy!

Last night while Dave and I said our final good byes and told Dad how much we loved him and will miss him he took his last breath and passed from this world into heaven. I know in my heart that he and Mom are finally reunited and his heart is no longer broken and as I put my head on my pillow last night I felt sad, my heart hurt as the realization of losing both of my parents in a year set in but I know he is in a better place. I am comforted knowing that he left this earth peacefully knowing how much his family loved him and will miss him. My Mom and Dad were amazing parents and I feel blessed having had them with me helping me to become the person I am today. I love you Mom and Dad, you will be forever missed. God be with you and our family as we celebrate your lives, grieve your loss and honor your memory!


  1. I think of you often, Sue, and continue to lift your whole family up in my prayers. The Lord is holding all of you in the palm of His hand.

  2. I am sorry for the painful time you have been going through. Your Dad is at peace at last. Jeanne