As I write this it has been ten days since my mother’s death. Time behaves oddly after something like this. At two days I couldn’t believe it was only two days and now at ten days it seems like it has been much less than that. I cannot say it was unexpected since she was suffering from both COPD and congestive heart failure but in the end, it went very fast. Just before New Year’s Day she was admitted to the hospital with an exacerbation of the COPD. She was unable to breathe and the facility was not able to bring her back to any kind of comfort level so off she went. While she was a DNR (do not resuscitate or re-sue-citate as she called it that day), that didn’t mean they wouldn’t embark on whatever other treatments they might deem necessary to help her. They put her on a Bi-PAP machine, similar to the CPAP used for sleep apnea. The difference is the CPAP is pressurized in just one direction (breathing in) while the Bi-PAP is pressurized in both directions (breathing in; breathing out). I’m told that the treatment is quite intense and difficult for anybody but particularly so for an elderly person. Unfortunately I wasn’t able to be there since I was in North Carolina at the time. What I was aware of two main things in mom while she was in the hospital – an incredible amount of confusion as well as a lot of chest discomfort and pain. The nurse assured me that the chest discomfort wasn’t a heart issue but rather from the treatment she received in the ER. I guess that makes sense if you understand that she was unable to take a breath either in or out and this machine forced that to happen. That would have to hurt.
It was at that time that I decided it would be more merciful to not have her undergo that treatment again and began to explore the option of hospice. From what I understood, hospice would be able to keep her far more comfortable, using morphine to help ease her breathing and Xanax to manage the anxiety that is so ubiquitous to COPD. Hospice was implemented prior to her return to the nursing home. By consenting to hospice I knew she would not go back to the emergency room but, instead, would have the opportunity to hopefully die with dignity and grace whenever that time would come. Admittedly, this was not an easy decision to have made especially without support. I just knew she didn’t want to go through what she had in the emergency room and ICU again. Nor did I. There had to be a better way and hospice gave us that option.
After returning to the nursing home, mom questioned me several times about why they didn’t let her die in the hospital. She was clear that she no longer wished to live this life as it was now presented to her. My brothers made arrangements to visit with her. I arrived in Florida the day they were leaving, our paths paralleling each other rather than crossing so we did not see each other. The day before I arrived she evidently had new issue. This time her blood pressure dropped to something like 70/30, a level that caused no small amount of concern to the nursing staff with one nurse calling me to confirm my decision not to send mom to the ER if it got worse. Again, that’s a very hard thing to affirm although I did. The finality of that statement hung over me, making me question my original decision to go forth into hospice. I stuck with hospice knowing that was what she wanted as well as the right thing to do overall. There were some who told me that with my brothers’ presence she totally overdid it and felt this drop in blood pressure was the result. I’m sure mom’s tiredness was not quite as visible as it would be to me since she was so excited to see the two of them. Her excitement would overcome her tiredness, at least while they were there. After they left for the day she was exhausted and fell into a deep sleep. It had been years (two and three years) since she had seen either of them. I was concerned since I was the one to see the tiredness between their visits on the three days they were there. I kept trying to tell her to bring it down a few levels since she was so tired but she wouldn’t listen since she was happy to finally see the two of them.
When I saw her that Tuesday evening after my arrival I have to admit to being shook to my core. She looked awful and sounded a whole lot worse. Her speech was slurred and she was more confused than I had ever seen or heard before. Mom had no idea if it was day or night even though it was obviously sunny outside. If it was really 3:30 in the afternoon, she told me, why was she still in bed? She kept telling me, “I’m so confoosed” which was how she pronounced it. I actually videoed our conversation since I was sure no one would believe how she sounded and was acting. I feared the mom I knew not that long ago was gone forever.
Picasso didn’t care how mom sounded, he loved her nonetheless and unconditionally. She always said it was Picasso who taught her how to laugh again!
That night I spoke with a friend, telling him I knew she was still terrified of death, something I had been trying to help her overcome. Now with death pounding at the door something had to be done to help her, but what? I knew words wouldn’t work since her mind, even if confused, would find a way to block my words and defend against them as has always been the case. I told him how I wished I had some of my crystal singing bowls to play for her knowing how well they worked with her in the past, going right past her cognitive objections and defenses and directly to her heart and soul. We went back and forth with various ideas when I remembered I knew someone, William, who played the crystal bowls as a Divine offering to others, even working with hospice patients in the past. I called him that night and he returned the call the following morning. William was available that very evening. The timing was perfect. Of course!
Mom was excited about having the bowl concert but forgot all about it almost immediately after I told her. We were allowed to use the conference room since it would not be occupied at that hour. Using the conference room and particularly the large conference table allowed William the room he needed to spread out all his sound therapy instruments. It also gave us privacy. Mom had again been in bed all day until 4 PM when they got her into her wheelchair as I had requested earlier that day. Even though I told her about the concert just moments before, when we arrived in the conference room mom was convinced we were there for a conference for her, one that already happened the day before, immediately after I arrived in Florida. I reminded her why we were there. When she and William first saw each other it was love at first sight! The two of them fell into a state of love that would have to be experienced to be understood. Their two souls met and recognized each other instantly. Oh, the love! It transcended everything. There are no words adequate to describe their experience nor mine as I watched. It was love personified.
Just after William and mom first met.
William and mom prior to the concert.
A conference table full of singing bowls and other sound therapy tools.
William walked over to her, hugged her and held her hands for what seemed like a very long time. Finally he began to play the bowls and mom was immediately transported into another world. Her face, previously contorted with pain and confusion, now showed what could best be described as ecstasy. The sounds of the bowls brought her into what she said was heaven. For the first time in her life she told me she was no longer afraid of dying. Mom told William how very long I had been working to help her get to this place and now she was finally here. Her gratitude for both William and me was deep and obvious. It was a very touching moment for me knowing all the work I had been doing finally reached its culmination. On top of that, mom was suddenly coherent again.
Mom during the concert while I prayed for her.
William and mom hugging it out after the bowl concert. Mom was so deeply grateful!
Upon reaching her room afterwards it was amazing to see how quickly she went back to complaining about how she was feeling. No longer in the spiritual realm, she went back into the physical which wasn’t feeling all that well. It almost seemed that she had been stockpiling those complaints which went unexpressed during the concert and now could not hold them back a moment longer. I feared the work done by William might have evaporated just like that! It was such a contrast from just a few moments ago. My heart nearly broke.
I needn’t have worried. The next day she was in much better spirits. She was happy, joyful and in full control of her thoughts. Later that afternoon, my son Kris arrived for a visit with her. He later told me he couldn’t believe she could possibly be that sick even though he knew on another level that she was. The intervention with the bowls clearly brought her to a very different place than she had been. I’d not seen her this well for quite some time. Of course seeing Kris also helped but the reality was that she wasn’t tiring out from our visits which was quite different.
Kris and his grandmother. Only a week after this photo was taken she’d be gone and you would never know it to look at her!
That Friday evening after Kris and I spent the day helping mom decide who would get what from her crystal collection, Kris and I went out to dinner. For three hours I told him about mom (at his behest) and what her life was like growing up and her experiences as an adult. Once learning just how difficult her life had been he experienced a new found respect for her. Up until this point they never really had a strong relationship but now it changed for him. The following morning, prior to his departure for home, he told her multiple times that he loved her, something he never remembered doing in the past.
Sunday morning came and it was time for me to start the journey back home to North Carolina after my visit with mom. The week had been well beyond anything I could’ve imagined. There was a closeness between mom and me that went beyond words. We also both knew this would be our last time seeing each other in this life.
I planned on being there for only about an hour or so but it ended up being over four hours before I could leave. When I arrived it was clear that mom’s body was not able to maintain that higher level of energy from the bowl concert and showed signs of deterioration, as I fully expected. She was also frightened again. I was leaving her and she expressed her disappointment that she hadn’t died while I was there, something we both hoped might have happened. With all the journeys we shared together, if felt right to both of us that we would share this, her last journey. It was obvious that she was afraid to die without me being present. She wanted my support. During those four hours I looked to calm her and support her again. Once I saw improvement, I left. Since we both knew that we would never see each other again my departure felt so much more difficult but everything that needed to be said and everything that needed to be done was taken care of. I left feeling peace in my heart. I felt sadness, too, but the peace really was the prevailing emotion. No matter what, I knew everything would be okay for both of us.
Before I even drove out of the parking lot of the nursing home she called me on the phone. The first leg of my journey was about 4.5 hours and we talked for probably 3.5 of those hours on the phone stopping only so she could eat dinner. She needed that contact from me and perhaps I needed it from her, too. We shared stories from our journeys together, again expressing disappointment that this final journey we would not do together. At one point I shared a story about her on our trip to Mt. Shasta, California. I made her laugh so hard that she started coughing and couldn’t breathe! I felt bad that I made her cough that badly but, on the other hand, hearing her laugh that hard and probably for the last time in her life, felt good. It was the last time I’d ever hear her laugh.
The following day, Sunday, she really started her downward descent. It was clear that things were different. We spent practically no time on the phone that day since she couldn’t maintain enough energy to do so. For the next few days she required morphine more often (used to help with her breathing) and more Xanax (to control the anxiety from not being able to breathe normally). When I was there she was having great difficulty swallowing her food or drink and would constantly spit it back up, a well known issue with those with COPD. Very little food or liquid actually made it into her stomach. Now, even though she was going downhill in most other areas, eating and drinking actually became a little easier.
By Thursday she found herself pretty much unable to stay awake the whole day. In spite of that, she still insisted on going to Bingo twice, her favorite activity, once in the morning and again in the evening. She slept through the two different sessions she attended but it didn’t matter to her – she still wanted to be there. Mom loved her bingo! Her roommate Emma, the first and only roommate mom ever got along with, tried to keep watch over mom but mom was still insistent on doing whatever she wanted to do. She was like that in life and so now, too, in the dying process. That night, mom and I were on the phone as was usually the case. I was in the habit of talking with her no less than three times a day most days so I could assess how she was doing. Depending on the outcome of those conversations I would then reach out to staff for help since I wasn’t there to do things myself. In those final days I’d also reached out to Emma, my eyes and ears, for her assessment. After determinating her physical state what became clear was how she wanted to talk and needed to have contact with me. As much as I thought we should hang up so she could rest she would not consider it, asking me to please talk longer. I remember thinking to myself that one never knows when the “last time” might be. Since something felt quite different about her request, I stayed on considerably longer. I’m so glad I listened to that quiet voice within since it turned out to be our last real conversation. She obviously knew on some level what was about to happen.
The following morning, Friday, I called her to find her not doing well at all. We talked for a little while but it was obvious to me that something was quite different. She barely responded to what I had to say, remaining caught up in what she was telling me. It was not what I would call a conversation although she could acknowledge my presence. I spoke with Emma to see how she thought mom was doing. Emma told me that it wasn’t good. I could always trust Emma to tell me the truth about what was happening and not sugar coat it to make it easier on me. I’m so grateful for her honesty and courage to always speak the truth to me. William and I were in contact earlier that morning and he told me he planned on visiting with her after lunch. I told him that mom had declined since the last time he saw her. By the time he got there, she had declined even further, becoming pretty much non-responsive.
Around 1 PM I made my second phone call to mom. She was able to pick up the phone but could no longer respond to me. Emma continued to keep me up to date as did the nursing staff and hospice team but Emma was much more helpful in general with painting a picture for me of what was happening. She told me that mom had been yelling for me to let her go, something I was praying for her to know just the day before. After Emma and I spoke I launched into another round of intense prayer for mom to know that I wasn’t holding on to her and that each of her children would be fine. It was sometime after all that when William arrived at mom’s bedside.
William later told me that he brought his bowls but mom no longer seemed to respond to them at all. So he sat with her while she mostly yelled the whole time as he looked to comfort her. She had a litany of yelling that she would do. The first yelling was for me – Deborah, help me – yelled over and over again. Eventually she then launched into the same pattern but this time for Eddie, her brother I assume (unless she knew another Eddie I didn’t know about). This was followed by calling for Mother and finally she called for Mother of Pearl. I’ve no specific idea what Mother of Pearl was about and have assumed perhaps it was the morphine making her mind a bit more wonky than it already was. Energetically, Mother of Pearl is a very comforting gemstone, exhibiting a mothering type of energy. Perhaps mom was actually calling for that energy but there is no way of knowing what her seriously addled brain was thinking. This went on for hours with just a few short breaks.
The nursing staff was concerned for William who was there for over four hours as mom continued in this manner. Whenever she would fall asleep for just a moment or two she would then wake up screaming how she didn’t want to die yet! I spoke to Emma several times during this period to make sure Emma was doing okay. I was worried about her. After all, she is a patient in rehab, not a staff member. Her training, however, while not medical was spiritual – her husband is a pastor at a local church. Between the church and the people I asked to pray though Facebook mom must have had well over two hundred people lifting her up in prayer during this time. I’m so grateful for their faithfulness.
William left only after a hospice vigil volunteer arrived to relieve him. He told me he would’ve stayed if no one else showed up to remain at mom’s side or if he wasn’t comfortable with the replacement. After four hours he was naturally exhausted. Emma, God bless her, remained in her room the whole time to watch over the process and offer support when needed. She was mom’s guardian angel, along with William, in human form.
With all the yelling and screaming mom was doing I felt certain that the end would be imminent. No way her body was going to recuperate from the energy expended by yelling like that. The last time I spoke with her was sometime after dinner, not that mom was capable of eating. At that time she was repeating what I think was “Aid, PLEASE!” over and over again. The “please” part was quite clear and emphatic; I was less sure about the first word. I joked with her that I didn’t think she could hear me with all that racket she was making. Briefly she stopped and then resumed again. This happened three different times. In talking with Emma, she felt sure mom was responding to my talking with her since she didn’t stop like that other times. I ended my talk to mom telling her how Picasso and I loved her and we were with her even if not physically. I said it several times hoping that she would be able to hear it over her noise. I never spoke to her again.
I got the call that evening around 10:15 PM. The nurse was hesitant and unsure of how to tell me that my mother had “expired” at 10 PM. My response was, “Oh, I’m so glad!” Probably a little unexpected but I quickly added how I was happy mom was no longer suffering. After we hung up I sat there for moment marking this momentous occasion in my mind before starting to call everyone, saving my west coast friends for later since they’d still be awake.
At 11 PM my phone rang again. This time it was Emma. She told me how she wanted to call me sooner but the aides wouldn’t allow her fearing her blood pressure could become problematic. As soon as the second shift ended she picked up her phone to call me. Oh, how I love this woman! In the end, even after all the noise mom was making, her passing was peaceful. Mom had been asleep for about 15 minutes when Emma heard mom take her last breath. Emma immediately knew this was it and called the nurses. In the end, it was just the two of them – Emma and my mom. I am so grateful it worked out that way. Emma kept reassuring mom, telling mom not to worry since God loved her. At some point during the day Mom told Emma she was ready to die but was still afraid of the process itself. Emma eased her into the transition.
At around 2 AM the man from the crematory came to get mom’s body. After doing what was needed, he pushed her past Emma’s bed and heard Emma tell mom, “Good bye, my friend”. I still cannot recount that without tears in my eyes. Mom never had a real friend in her life…until she absolutely needed one and God provided her with the perfect friend!
Goodbye my friend!
And so after 91 years of life, mom, probably for the first time in her life, finally surrendered. She was always the perennial fighter, even to the end. There is so much more I’d like to share with you about mom’s journey in life so you would be able to understand how amazing the end of her life truly was. For now, this is all I have in me. Picasso and I went back to Florida again only a week after getting home from the last trip to get everything of her’s in order and take care of her final arrangements. We are now home again to begin our mourning process.
Helen Gutowski Jones Weitz
May 29th, 1924 – January 22, 2016
When I think of mom, this is the song that comes to mind. The rose in the background image is one of 80 I gave to her for her 80th birthday. To hear the song performed by Coldplay, please click the photo.
Mom, Picasso and I love you and miss you very much. You are finally free to soar with the birds! Fly on!
© 2016 deborah kauffeld