The Flickering Light – When the Light Begins to Flicker Part 2

Posted on March 31, 2016 by Tanya

But the flickering in the life of GG was quite different than that in my father-in-law. Derl was well until at age 66 diagnosed with prostate cancer. Surgery revealed the cancer had broken out of his prostate. Because the cancer was in his body, we were told that he had, at best, two to five years and certainly not more than ten. He took the treatments we knew would render him unable to walk eventually, but that was so far down the road and was worth the calculated risk. He went from walking, to using a walker, a scooter, a wheelchair and finally he was unable to move on his own and simply went from his recliner to his bed and nowhere else any more.

This process took place over two decades. Well past the time frame we were provided, he continued on and on and on. It was made all the more difficult for him and my mother-in-law and husband to watch because he had been a mailman and walked his route for 26 years. Now, he could not get out of a chair on his own.

When it was finally determined that there was nothing more that could be done and he had fought a good fight and it was time to stop tormenting him with hospital visits and needles, he was moved into hospice care. At this point, we were told he had weeks to months. Of course, given his history, we knew already that he would likely be the longest living hospice patient.

While we were hoping for this longevity and more time with him, his continued health challenges were wearing on my mother-in-law the most. For her, too, there was no end. But after almost sixty years of marriage and total devotion, she was simply doing what she had promised to do. And she did it with quiet grace and compassion.

As the first weeks and months passed, he did begin to come and go differently. Knowing that he no longer needed extraordinary care allowed us to give him what he wanted to eat, when he wanted it, and it provided us with a bit more of a time frame in which to be certain to visit with him as he wanted. Derl never did like a lot of noise or activity and simply enjoyed watching sports and old Westerns on television. Or, he would read the local community and state newspapers for hours on end. (And none of us could ever figure out how he unfolded those papers in the way he did!)

At first there was no real difference in his demeanor, color, life, or light. Derl had good days and bad days, but not unlike most of us every day of our own lives. And in the previous years, this had been his pattern – though he was increasingly less independent and eventually nearly immobile, he had times when he his spirits were more engaging balanced with time when he would not say anything. He had already endured bouts of fevers and infections that would be followed by a sudden state of wellbeing. We were accustomed to this up and down, in and out, good and bad health, attitude, and prognosis.

There were, however, little things that we all began to notice about him and realized they were reflective of a real and true decline in his health. Such a hearty soul, Derl was also accustomed to a bout of something, he would be admitted to the hospital and after a tune-up, he would be good to go again. The periods of these upticks became shorter and they were more frequently occurring. He also did not bounce back as completely as he had the previous time. His progression was slow, steady, and ever so faintly downward.

What really struck us all is that he, like Fred, was never a conversationalist and certainly never offered reciprocal feedback to what others shared with him. Not once before this time did he ever thank any one for any thing. It’s not that he did not care or that he was not appreciative, he just had never learned these social skills. But, he began to say “thank you”. And quite often. He told people thank you for visiting, for cooking meals, for being there and caring for him. We believe this is his way of finally beginning the process of saying good-bye.

For two men from about the same generation but who led completely different lives and did not communicate, to begin expressing their appreciation for little things was fascinating. We never expected to hear such words and were grateful for them. The relationships began to change and there was more intimacy. But this too would come and go. There were glimmers of the people they once were sprinkled among the times when they were more in tune with their daily experiences. It was a flickering of the light of life – off and on, coming and going, dim and bright – a process.

The Flickering Light – When the Light Begins to Flicker

Posted on March 22, 2016 by Tanya

It is incredibly challenging to care for someone who is dying, much less to be the person dying. Neither is an ideal way to live and none of us know how long the process will take for us. It is the unknown that often makes the caring more difficult. Since we do not know what will happen and how long it will take, we are in a perpetual state of waiting.

My GG, Fred, was 93 when he died and yet he had been ready to go for at least a year before that, and likely much longer. Upon turning 89, he chose to not renew his driver’s license, turned his truck keys over to my Dad, and said simply he was done. That was it. No discussion, no explanation, no tears, no nothing. He knew my parents would transport him as he needed and would get what he wanted and needed when he was not up to going out. But what began to happen after that was where the struggle began.

Fred no longer had a will to live and said as much. He was tired, uncomfortable, and missed my Grandmother. Later in life he had an old World War II injury received in combat that began to cause him more pain. It was a physical reminder of the terror he endured in the Pacific. Though he wanted to forget that experience and enjoy his memories of my Grandmother, it was ever-present and truly a throbbing alert to his past.

He began to sleep a lot and no longer had any interest in watching the NASCAR races on TV or completing the NY Times crossword puzzle or reading books and magazines. This is a man who while he lived in California for most of his adult life, he planned his annual vacations based on the NASCAR races and would drive East to see the ones he wanted. For him to hold no interest in these events was significant.

GG became incredibly compliant with activities he had not previously cared to engage in – bathing, hair cuts and shaves, changing clothes, and eating. Months before he was clear when he did not want to participate in any and there was little we could do other than encourage him. Then, he began to seemingly just give up and give in. He did not fight us or resist or complain. He just participated as he could.

Though never one for much conversation, GG could not do much of it any more. His hearing had been going for some time and he never felt he needed to get hearing aids. He was not inclined to spend the money nor did he see a need for them. It did not matter that the rest of us had to yell for him to hear us; he did not feel he needed them, so he did not get new ones when the old ones no longer worked. We resorted to a notebook to ensure we were still communicating. We wrote him simple notes he could verbally respond to since he could no longer write well.

This note process worked well. We would ask his preference for meals or if he felt warm enough. Sometimes we would tell him that his great grandkids were there and would come see him. Other times we had to share with him the news of his daughter-in-law’s death from cancer and his neighbor friend’s sudden death. These are not the sorts of things you want to dialogue with via a notebook, but it was the only way to ensure he was still engaged in his life – the good and the bad, the ups and the downs, the pleasant and the difficult.

Physically we noticed that GG began to “shrivel up”, was cold all the time, needed less food and water, and was tremendously unsteady walking around his little apartment. He was simply tired. It was more difficult for him to sit up for a haircut or he would fall asleep at the dining table. He wanted only to stay in bed or in his recliner and sleep. Having been a very astute, intelligent, active man, it was clear that his light was flickering less brightly and less frequently. The light was fading for him.

Emotionally, he began to tell us how much he appreciated what our family was doing to take care of him. This is something GG never would have done in his prime. He rarely offered compliments or gratitude. In fact, he was often an unpleasant little man to be around. I described him as a “tightly wrapped little German man” – at just over five feet tall and with an intense, technical, directed kind of mind, he was not one for banal chit chat or for time with others who were not as bright as he was. He had no tolerance for those around him he did not approve of and lived on his terms regardless of the others in his life and their needs.

GG was not an easy man to love. Early memories were not pleasant and he was never the warm, engaging granddad we all want and some have. However, as he aged and had few people willing to tend to him as he dictated, he became a shell of who he had been. Seeing someone age so profoundly was striking and humbling.

He became and old man who was sad, limited in his abilities, and quite simply in need of help. GG missed my grandmother and I think he missed the opportunities he’d had to better connect with others. He was no longer the defiant, self-assured, strong-willed individual he had once been and was dependent on others for the most minor of human needs. It was a remarkable transformation and one deserving of good care and love as he was willing to accept it.

The process was slow. Once he began to fail, it was just a few years until he died. But for my parents, GG’s primary caregivers, there was no end in sight. Not that they wanted him to die, but that there was simply no end in sight. They were in their late 70’s by the time he died and they too were tired. GG did not suffer from any certain ailment that would offer some phantom timeline. He was not afflicted with any acute bouts of illness we could better anticipate his future health. GG just kept going and though he was flickering out a little at a time, he did continue to have some light in him.

The days and weeks were not difficult with him as he was gracious and accepting of whatever my parent’s needed of him. He ate what my Mom cooked (which he always liked) and never complained about any meals or had issues with his living arrangements. But, there was never any end date. My parents had simply NO clue how long this was going to last and were fearful that it would wear them down too much too fast. My sisters and I helped as we could and were also concerned about our parents, but we were simply the “fill in”. Our parents were those with the day-to-day 24/7/365 care with no end in sight. They were the ones who did not feel comfortable leaving their own home for a short trip away, even when we were there with GG. Our parents were truly dedicated and did the right thing by GG for the end of his life. And he knew it was a gift.

GG had moments when we felt he was doing well and seemed to perk up a bit. His light would flicker on and even at times it was bright and clear. Then he would go back into himself and we wondered how much longer he would live. It was this flickering that made things challenging for those around him and no doubt for him as well. He had good days and bad days, up days and down days, happy days and sad days. He too did not see an end in sight.

The Flickering Light – The Power of the Light Part 2

Posted on March 17, 2016 by Tanya

As the light flickers out – whether it is gradual or sudden – it offers us all opportunities. For the living we can accept and hear things we longed to know from days past. It is a tremendous opportunity to ask questions about their childhood, when they first fell in love, how they found their first job, any war experiences, stories of pets they loved, places they lived and travelled to, and even what they want their legacy to be. For the dying, they can share these experiences with us and in a way that they could never have done before. Why this happens during the dying process and not during the living time is not a question for the mortal. But, it does often happen and when it does we must take it for all the glory and joy and peace it provides.

The power of the light – we have it in us to envelope this power, to harness it and to help us with the process. Sheldon from The Big Bang Theory stated, “Mourning the inevitable is a complete waste of time”. While intellectually this makes sense, emotionally it does not work. Even he, who by all standards has no social skills and lacks empathy, realized that when someone dies, those left behind need to grieve.

The Flickering Light – The Power of the Light

Posted on March 8, 2016 by Tanya

As the light flickers in someone who is dying, those of us still living look for those days and moments when the light is strong – when the dying is present, vocal, involved, and responsive. The light in their eyes tells us they are still with us. It is the light that gives us hope that the inevitable will not happen after all. Or, at least, it is the light that gives us those last moments to engage with the dying. These are precious and priceless moments to treasure.

It is amazing how some people just seem to “know” their time is up. One lady who traveled frequently one day told her neighbor where her and her husband’s important documents were should anything happen to them. She had never done this in the past before multiple trips. This time, however, their plane crashed killing her, her husband, their daughter, their best friends and their daughter. Tragic? Absolutely. It was a devastating experience for all those who knew both families. But, why on this last trip did she tell her neighbor about her documents and not the many other trips? Did she have some idea that it would be necessary or did she also not have any idea why she felt compelled to do that on that occasion? We will never know.

Others begin to say and do things they never did when they were “well”. They suddenly begin to articulate and express their appreciation and gratitude, and even love for those around them. This is not a maudlin or dramatic thing so much as simply a few words shared that otherwise would never have been uttered. It offers peace to those who needed to hear them and maybe some release to those who are finally able to say them. Either way, they are words and actions the living treasure. They are memories we like to share with others to help deal with all the unknowns. At least we know where the dying stood.

How we Die – Part 2

Posted on March 1, 2016 by Tanya

We all hope that we, and our loved ones, will die peacefully and without pain. We all hope this is what actually occurs and find peace when we have said good-bye after a long life or a long fight or when we simply know it is time. Death is truly for the living. Those left behind are here to process the process and understand the indiscernible.

How we die physically is generally left to the doctors, nurses and hospice providers. How we die spiritually or emotionally is left to the rest of us. It is here that we often find our greatest struggles within ourselves and with others. Some people want to talk about it while others simply cannot. Some want to hear and ask questions and be present while others cannot. It is all OK. We cannot all be in the same place at the same time or see things the same way with the same understanding. We are all different in other aspects of life, why not in death as well?

Remembering that we all have a role to play is helpful and incredibly relieving. Some have the ability to be strong early on and step in and step up to make decisions, coordinate meals, and articulate plans and needs. Others may be incapable of this but once the person dies, they have already grieved and can then step in and step up. This tango of responsibility is why it is so important that we have others around us when we are going through such struggles. This allows others to be strong when we cannot. And it allows us to lead when others are barely able to follow.