What It Was Like To Finally Say Goodbye

clouds

Superman Has Finally Returned to Krypton

Last Saturday, I visited dad, as I have every weekend since he moved here in 2015. When I arrived, he was sitting in his wheelchair with his head slumped over as if he was fast asleep. I have found him like this before but usually, I am able to awaken him. I tried everything – I took him outside where it was cool weather, assuming he would wake up and complain…I placed his dog, Coco on his lap….nothing. No response at all.

As I left him at lunchtime, I learned from the staff that he had been this way all morning and that they couldn’t get him to eat breakfast. I assumed he would wake up and eat lunch, so I left. I called later and learned that he also didn’t eat lunch, so they put him in bed. From that point on, he never left the bed. He essentially went to sleep and never awoke again.

He went 4 days without food or water before he passed. He was sleeping comfortably, so no morphine was administered until the very last day, when his breathing started to look a bit labored. So at 4 pm they started him on morphine. By 9:30 pm, he had passed away.

My brother visited him at around noon and reported no response at that time. He tried playing Frank Sinatra in his ear…nothing. When I arrived at 6 pm, I saw his breathing had become a little “weird” meaning he was breathing short breaths strictly from his belly. That was when I was told that they had started morphine. At that point, I decided to have “the talk.”

The Talk

I leaned over to him and said “Ya know, you’ve lived a long and happy life. It’s time for you to go. It’s okay. We’ll all be okay. No need for you to suffer any longer. You have my permission to go.” And then 3 1/2 hours later, he passed away. I had heard of others who had tried this approach, so I figured I had nothing to lose. It has been torturous to watch his decline, knowing that I could do nothing to stop this train wreck.  I was happy that he didn’t seem to suffer in the end. He literally appeared as if he just went to sleep and never awoke again.

I was happy that I was the last person to be with him. He and I were a team. I don’t even know what I will do without him in my life. Even though we haven’t been able to communicate in the traditional way for about 1 1/2 years, I knew he knew who I was and appreciated everything I had done for him. I was his cheerleader just as he had been mine my entire life. It was time for him to go.

How Did I feel?

Relieved. Happy. Satisfied. Sad. Elated. Depressed. Anxious.

A mixture of emotions. The truth is, I mourned for my dad with every visit. Every step down in his capabilities, I mourned. I cried countless times after I left him. So many tears over so many years. When the time finally came for him to really pass on, my first emotion was “THANK GOD, HE IS NOW FREE.” It’s ok to have mixed emotions. This has been the hardest thing I have ever undertaken. The most time consuming, the most emotional and the most labor intensive. It really was a full-time job. But I did it. And although I probably complained throughout the entire time, I wouldn’t have changed places with anyone. To have witnessed the full circle of life not only prepares me for what is to come but also was such an honor to have been able to give back to my father, who gave so much to me. R.I.P Dad. Mom has been waiting a long time for you to arrive.

Advertisements

Reflections on John McCain’s Funeral

Senator John McCain lies in state at US Capitol, Washington, USA - 31 Aug 2018 How Lucky Senator McCain Was

I listened to Meghan McCain’s eulogy for her father on my drive over to visit dad today and cried the entire way. What an incredible eulogy! It got me thinking how lucky John McCain was both in how he chose to live his life after enduring such tragedy in the Vietnam War, but also how he chose to and was able to live his last days. He could have come home from his POW experience and had it eat him up inside with anger and revenge, but instead, he channeled it towards helping to make the world a better place for all of us. Now, I don’t agree with everything McCain stood for but I definitely came to appreciate his forthrightness and his ability to acknowledge when he was wrong. I, like the Senator, stand up when I see something wrong and do not worry about what others think. I am, like McCain, a direct communicator. I am proud of that as much as I am frustrated by it when others do not communicate with me as directly as I would like them to.

Senator McCain was so lucky because he got advance notice that his days were ending so he could choose how he wanted to live out his last days. My mother was not so lucky, succumbing to a heart attack in her sleep at the young age of 57. The Senator was able to spend time with all who meant something to him so that he could communicate his love for them as well as how he wished to be remembered. He could communicate his wish for how he envisioned his funeral. He could communicate a strong call to arms for the nation to stand up to fascism and tribalism that is enveloping his beloved nation. In short, he could communicate.

Communication

To be able to communicate is so integral to our identity and self-worth. What happens when you can no longer communicate, as my dad has? Since his fall in May of 2015, his ability to express himself has deteriorated to the point where now he not only cannot express himself at all, but I do not believe he understands what I say either. How must that feel to him? He is alive, his body is still working, but he is trapped inside his own skin, unable to ask for help, unable thank anyone, unable to say he loves me or anyone. I believe he still knows who I am as when I arrive, as sometimes I still see that twinkle in his eye and when I leave, sometimes I get a kiss goodbye, But in between, I get nothing. I think about the McCain family and how they got to say goodbye to John, and how John got to say goodbye to them. It was a full circle moment and as sad as I am sure it was, I have to think the family was at peace. Being able to communicate is so central. To have that stolen from you is no different than solitary confinement, only you are relegated to confinement inside your own body. Senator McCain – how lucky you were. R.I.P

 

Teach Your Children Well

father_and_kid

Throughout our lives, we learn from our parents and I hope that I am always teaching my children, despite them not really being children anymore. Although my father is no longer really able to express his needs or really communicate anything clearly to me anymore, I am still learning from him.

Grace and Gratitude.

My father continues to show everyone he meets that he has a sense of humor about the world and that he accepts what is because he cannot change it. As a result, he doesn’t fight having people help him. He accepts all help with grace and gratitude.

How to Grow Old.

He is old. There is no denying that. At the ripe old age of 91, he has outlived his entire family. He is the last living relic of his generation. Yet, he is okay with that. Even grateful. Whenever I say goodbye after a visit and I say “I’ll see ya later,” he always responds with “I hope so.” He doesn’t take anything for granted. I know he hates bingo and some of the activities they offer in his facility but he participates anyway because, why not?

How to Live The Last Chapter of Your Life With Dignity.

He never complains. He generally is happy. And he appreciates all the help he is given. He loves getting attention, but doesn’t demand it and is grateful when he gets it. He continues to smile and treat people with respect, just as he has always done.

Never Stop Trying.

Despite his body being riddled with Parkinson’s and despite the difficulty he has in getting out of a chair, he continues to be willing to get up and take a walk (assisted) daily. I can tell it isn’t enjoyable for him, but he continues to do it because he knows that once he stops, he will lose the ability to walk. So he keeps at it.

Keep Singing.

In a memory care unit, music is playing much of the time because the brain never loses the ability to retain a song. He will often start singing along with a tune that he hears. It’s wonderful because it is often one of the few times I hear a coherent sentence come out of his mouth.

Here is my hope.

I hope that the example I am giving my own children will resonate with them. I hope they will understand the importance of taking care of family, no matter what happens, no matter the inconvenience. I hope they will understand that it is a privilate that I am able to do this for my father. Sharing these last few years with him, although a huge disruption to my life, will be something I will cherish the rest of my days.

 

 

Who Do I save?

I Cannot Save Him

Caregiving is a marathon, not a sprint. I learned this first-hand, because for the first two years after I moved my father here, I visited him literally every day. I mean EVERY day. For TWO years. I was convinced that if I didn’t visit him and show my presence at the facility where he was living, that he wouldn’t receive the kind of care I felt he deserved. After all, we all know that the squeaky wheel gets the attention. When I started my business, however, I could no longer keep up that schedule and, frankly, it had worn me down. I had no life. I couldn’t go away, Go on vacation without worrying about him. Weekends were never about me or my family, it was always about making sure I got my visit in. It was only when I was forced to curtail my time, that it dawned on me. There was nothing I could do, no matter how many hours I put in.

I wasn’t going to save him.

He has a degenerative disease called Progressive Supra Nuclear Palsy (PSP) and because it is degenerative, every time I see him, I see a little less of him. This disease, when combined with Parkinson’s Dementia (which he also has) has robbed him of his language skills and physically walking has become very challenging. I haven’t had a coherent conversation with him in about 18 months. He is walking less, sitting in his wheelchair more, sleeping more during the day. This is the progression of his disease. It will march on, no matter how many days I visit him.

I am not going to save him.

He still lights up when he sees me. He still knows I am someone who loves him. Sometimes I am his wife, other times I am still his daughter. But I am certain he appreciates my visits. And I am now sure that he appreciates them even more, now that I am visiting less. It’s better for both of us because now when I come, even though we still struggle to communicate, at least I have something to tell him. Even if I am no longer certain that he understands me.

Now I visit him roughly 3 days a week. It seems like the right number. I’m not able to walk him every day like I had been or make sure that he is getting outside when the weather was nice or make sure he is being stimulated with activities. No. I cannot do that anymore. I have to trust that the facility is filling in those gaps. And I am still a very large presence there, even when I’m not there. They hear from me by phone, email and text when I need to tell them something. I am much better off and I know he would want it that way if he could communicate that to me.

I cannot save him. But I think I am saving myself.