The End of the Dance

It is my turn to take care of Daddy this Sunday. We have to be there essentially all day now. I come at 10 am and Daddy is up, and in the kitchen when I walk in and yell to him that I am there.   He is terse. It hits me right when I walk in. I say “hi Daddy, how are you feeling today?” He lets me know, in his angry tone, that he is not well and he starts with the “why are you here?” I get my back up as it dawns on me, that all the times when he is so nasty to us, we are willingly taking this abuse in order to keep him in his home, and not in a home. I understand the cause, because I understand his confusion. But it hits me hard this particular morning. “I’m here to take your blood pressure Daddy and give you your meds.” He is feeling very weak, as this is the norm more than it is not, and so those have become our pat answers to him as he tells us, again and again, that he’s certain that what he has, is the flu.

What he has is congestive heart failure and COPD, and at 92 has a healthy case of dementia. But in his current state, it is just too much to try to give any details. So, the flu it is. It’s just easier. On those days where he seems to be more in tuned, he’ll ask us why we are checking his ankles. I tell him that if his ankles are swollen then there is probably fluid build up in his lungs and we need to adjust his meds. This is a simple enough answer and one that the Colonel will buy and be contented with. Many times, we end up in dangerous territory if the answers get too complicated and the memory isn’t in lock step with the explanation. That happens more often than not as well, and so we keep the answers simple, while keeping us safe from his reprimands.

As he is not feeling well and as I am not up for taking a lot of his nasty lip this early Sunday morning, I push back a little with him and tell him that I am only here to take his blood pressure and then I will get out of his hair. This too, has become my pat response to him when he is being a bully. A dementia bully, that is. It happens. It certainly isn’t exclusive to our family. Today, though, I am pushing back a little bit more, mostly because I just don’t want to hear it. I too, have a few problems. So as I give it back to him he drops his head and looks down at his hands and he softly says: “I’m sorry you kids don’t understand, that I just can’t get up and dance all the time.” This hits me hard and I hold his hand and say “I know Daddy, you don’t have to dance for any of us if you don’t want to.” As I go about the business of meds and nebulizers and breakfast, he changes his attitude and we have a nice visit, as this seems to be our standard course of business of brushing off his insults and the nastiness as we first come in and encounter him. He is often too weak and often too discombobulated to understand why we are there and why we have just walked into his house without his prior knowledge. This is a dance that all of us must play under these current circumstances. He is the Colonel after all and we don’t like to get into trouble with him especially in our 50’s and 60’s, but yet somehow, we still feel like we are twelve. We try to understand, and we try to reason it away, but the 4 years of constant care and the 4 years of dementia bullying are taking it’s toll on all of us, and even on him.

As we get over the initial hurdle of coming into his house unannounced and catching him off guard, his mind and temperament are in a different place. He is Daddy again and he wants to make sure that I am going to eat some breakfast. “Be sure to make yourself some breakfast also Sharon,” or “are you going to eat with me also?” It is hard to watch the strong man that has been my father for 54 years, be so weak and unable to recollect the hour before. As I go to leave, I have a million pangs of sadness, as I witness the shell of the man I knew as a child, as he tries desperately to hang onto his sanity, and to his relevance. As I am leaving, his words sit in my head and my heart as they hit me harder still as I am in the car driving home. The tears come now as I am alone to contemplate the magnitude of his message and because I wish that I could say to him and I wish that he would understand: “Daddy, you don’t have to dance for me anymore, I just want to help take care of you.”

As life has starts and stops and beginnings and ends, we are constantly navigating these ups and downs and fits and starts. It isn’t always easy. Not by a long shot. We celebrate the birth of beautiful babies, as we should, and mourn the loss of our loved ones, also as we should, as so many of them leave this world, long before their rightful time, but also those that have lived a long life, fully realized.

But even when we are adults and have our own lives and, or families, the loss of our parents can often leave us feeling lost and disjointed, and where in the heck is the order in our world – where did it go? As adults, we are always the child as long as our parents are still alive. There is an order in that, and not always a bad one either. As my father died this past January at the age of 92, I still said “yes sir” to him. He was the Colonel, and I never lost the respect for him, as I always knew what the order was in our family. Parents came first – period.

As my father had a heart attack and was put into ICU the same day as Wes died, he was in and out of the hospital for a couple of months. At one point they gave him a month to live, but he lived for 4 more years and graduated from Hospice, but even so, his body and his mind continued to fail. The Colonel’s ability to put controls in place on a daily basis to ensure he was still in control was truly an amazing phenomenon to watch. The years of military training and discipline were never lost on him, as he was ingrained to survive. It seemed to be a condition in all of that generation. They lived in some of the harshest conditions, through the Great Depression, World Wars, The Holocaust, and familial abuse, all while surviving without the luxury of being coddled. They grew up in an era that didn’t make excuses for themselves, an era that knew no other way than to keep taking those proverbial steps and working as hard as humanly possible to make a living, or to just stay alive.

My friend Sandy, just lost her father on the 4th of July of this year. He was 88 years old. He lost his beloved wife 8 years before. She died of Lymphoma. It took her quickly. Sandy’s dad died of Lymphoma also. It took him quicker. As they got the news of her dad’s cancer, there was the opportunity to do chemo. He said no. But he was scared. Of course he was. Was he ready to die – probably not, but maybe so. They think he was ready to see his wife – the love of his life. Her parents had a song that they both loved – “Tennessee Waltz.” True for that era. True for them. As he pondered the diagnosis and pondered the impending meaning of that diagnosis, he asked Sandy, “Do you believe I will see your mother again?” Sandy believed he would, she absolutely did, and believes he has. As Sandy’s dad was scared, his process was starting, but he couldn’t quite let go. Sandy wasn’t ready to tell him it was ok to go – she too was scared. But the nurses told the family that many times our loved ones don’t want to let go in front of us. It is too hard for them to pain their family in that way. He passed on his own and he did it his way. As Sandy grieves for the loss of both her parents now, as the death of one parent can bring up the death and grief of the other, she finds comfort in knowing they are together.

As my father was going through his process, we too, had to tell him it was ok to go. Well, actually, it was my sister Patty. She did it. It was her fault. But I knew the hospital was going to make us move him to a nursing home, and it was the one thing he never wanted. Who does? We kept him at home for those 4 years, but in the very end – he needed the attention of the professionals. While in the hospital for 5 days, they told us we had to move him, that it was time. He was being moved to the dreaded nursing home. I sat by the side of his bed saying silent prayers “Daddy, go now – go be with Mommy. Please don’t make us take you to the nursing home.” He really didn’t listen. No one did – jeez, here we go again. Does anybody listen to me?? He was transported by ambulance, as we all followed him down to this new dwelling. The process was grim. Very grim. I was still saying those prayers – mostly to my mom, because we all know, God hasn’t listened to a single prayer of mine for a really long time. As we got him settled, he was on a lot of pain medicine and was fairly out of it, but not before telling all of us he loved us – with the most genuine smile on his face. I will never forget it – ever.

As Patty went over to see him early the next morning, he was weak – very weak. As she was holding him, she told him that it was ok to go – that we would be ok, and that he could go and see Mommy. As Patty and Daddy were tough companions in the early years, as the formidable Colonel raised his formidable eldest, it was just the two of them in the end. He died in Patty’s arms. But as my son Sean texted Patty after he died, he told her Granddad knew she was the only one that could handle it. “AP (Aunt Patty), I love you. Sorry you had to be there yourself, but you were the right person to be there. I don’t think he would have been at peace with anyone else.” The tough child protecting the tough father as he surrendered for the only time in his life – and for good.

With Patty is where he felt confident to let go and with whom. I think Sean was right. I know he was, in fact. As Patty called to tell me he had passed, the all too familiar tears started rolling down my face. Here we go again – or still. More like still. More grief, more sadness, but then I literally got a picture in my head of both my mother and father together, cheek to cheek and smiling and it made me smile – a lot. My father had missed my mother for the last 35 years, as she too, left this world long before her rightful time. Finally he had peace in his heart. I believe they are together. With everything in me, I do. More magical thinking perhaps, but in my heart it’s what I believe. What I loved more than anything is that the Colonel never wanted to be in a nursing home – ever. He spent exactly 14 hours there and said “no way,” He too, did it his way. As a person with immense faith, it was difficult for him to surrender, much like Sandy’s dad – it’s not in their nature, to be sure, but once in the hospital, my dad was able to let his guard down. He was able to relax and let the process happen. Maybe the same is for Sandy’s dad. But while my dad was at home – he was still our father, still the head of the household and always the Colonel. Born in the era of the survivor. Rest in peace Daddy. I love you and miss you.

As my friend Andi B. lost her brother to addiction, within just a few years, she also lost her parents. Both her mom and dad died within 5 weeks of each other. While her mother had suffered from dementia for 10 years, her father came to visit her everyday. He remained devoted, of course he did. Andi said her mom didn’t always know who he was and would often tell him she “wasn’t going to give him a kiss, because she didn’t even know him – why would she?” Andi said her dad was pragmatic about her mom’s situation, but he missed her terribly, even while she was still living and breathing. Dementia is a tough beast as it robs everything from our loved one’s. As she lost her ability to remember and maybe even reason – her body was fine. Sometimes her mom would eat tuna fish salad on a blueberry muffin. Maybe sometimes we are thankful for a lack of memory. As Andi collaborated the funerals for both of her parents with her older brother, both services were held in the summer. Her mother’s favorite song was “Silver Bells,” a Christmas Carol of course, but was the song they picked in celebration of a mom, long since gone, in an emotional sense, but one that was still in their hearts and souls and memories of what she once was and what she always meant to them. As her father passed 5 weeks later, they paid homage to him with his favorite song “When the Saints Come Marching In,” with bagpipes fitting for the Scottsman that he was. I love the tributes Andi gave to her parents, as I love the sentiments of the kids left behind to honor and love what all their parents stood for.

As my father passed, we too had bagpipes, but the song was “Danny Boy,” for the Irishman that he was. As Sandy’s family played “Tennessee Waltz” to honor both her parents at her father’s funeral, it was fitting for a father that gave them a life of love and laughter and one that would have brought joy to his heart.

As we say goodbye to our parents, we are acutely aware that our navigational pull has just changed. That we are no longer the child. And as Andi said, “when our parents die, we are officially a grown up, we are nobody’s child.” It is hard to adjust to. But when our parent’s bodies are slowing down and ailing, we tend to start the detachment process, because we have a pretty good idea of how this story ends. This anticipatory grief isn’t easy when it gets here, to be sure, as we white knuckle what will certainly be the outcome. But the process can be long and drawn out and often times draining on family that are the caregivers. Waiting for the “hurt” to hit when they die, undermines the hurt we feel as they are dying. The impact is monumental even as we can reason out that there has been a long life lived. As Andi’s, Sandy’s and my dad were all so painfully lonely without the love of their lives, and by individual degrees, when they are not living but merely existing, we can adjust to the goodbyes a little bit easier. For me, I started grieving for my father the same day I started grieving for Wes. It’s been a long road, baby. I think I’ve said that before. I’m pretty sure I have.

As we say goodbye to our parents and as we navigate the new normal of being a parentless child, we try to find new ways of coping but always drawing upon the lessons learned by our living examples. That never ends, it just doesn’t. As we try to facilitate all the competing emotions in the long goodbye, we understand that this is truly the end of the dance, and we comfort ourselves by hoping, beyond hope, that the dance continues elsewhere as they are reunited with those they loved and longed for so much.

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