My dad, just went on hospice today.

He has Lewy Body dementia. It’s a combo of Alzheimers AND Parkinsons, a double whammy. It accelerates faster that other dementias, and is one of the “worst” dementias, as its speed results in massive chaos physically and mentally over a short period of time. Leading, ultimately to his demise. Most diagnosed with Lewy body don’t live longer than 8 years.

And whoo-dang, it’s a doozie.

It often results in aggressive behavior and a scrambling of the brain that makes most who have it living as a main star in their own personal horror film.

They have hallucinations, live out their nightmares as if they are real, and decline quickly, into an isolated world filled with terror and dark, horrific thoughts. Robin Williams had this disease, and un-alived himself midway through his cycle with Lewy body, not being diagnosed with it properly until after his demise.

It tortures.

I have a blended role of care-taker and observer, of this tragic tale of decline, sadness, torture and pain.

This is sad, hard, bewildering, and is moving so fast, I barely have time to grieve.

My mom, who has cancer (slow growing thank god), and is ailing in many of her own health conditions is his care-taker (was his care-taker, I now share this responsibility).

They were married at 17, have been together 60 years, are the loves of each others lives. They have been through good, bad and really bad. But nothing like this. Watching her, watch my dad decline, is unbearable, yet it’s what I do. Daily. Watch her, listen to her, hold her, console her as she unravels from her own debilitating journey through watching her husband suffer to his demise.

He now lives permanently in a skilled facility which specializes in this particular disease. It’s $13,000k a month. Yes, you read that right. $13,000k a month. Insult to injury, literally.

My mom and dad were the care-takers for my dad’s 98 year old grandfather, who is still alive and thriving. But now, I have taken over that role too. I am caretaking 3 people, including my mom all with varying needs of oversight, love and decision making.

The speed that this all hit us, was even more incredible. He was diagnosed with Lewy body a few years ago, and the first five years or so, he has been on a slow, and steady decline. Still able to live at home with my mom, he was taking independent walks, working in the yard, helping my mom do dishes. He may have put two pairs of underwear on or had trouble tying his shoes, but for the most part, he was calm, independent yet increasingly forgetful.

Sadly, he a horrific experience with a non-dementia issue, and was hospitalized this past March. He went through with something else called Hospital delirium , which was horrific. They had to tie him down and have security gaurds over see him (it’s a common thing that I never knew existed that I wish hospitals would educate their patients about).

Sadly, after that, he escalated from what I would have considered a 2 on the scale of dementia to about an 8 literally, overnight.

So here we are, 10 weeks later in June. He is incontintent, can barely feed himself, falls every day because he has poor control of walking and his posture, he forgets how to sit down, how to lay down. How to live. He is in a tragic purgatory of not knowing enough to know what is going to knowing just enough to be confused and terrified.

His core emotion is sadness. HE IS SO VERY SAD. All he wants to do is come home and we have to look him in his eyes every day and through a variety of ways, try to explain he can’t come home.

We promise we will be back. And we do come back every day, but it’s never enough. Of course it’s never enough.

Sometimes he gets enraged, sometimes he just cries.

It is clear, all his heart wants, is to be home, with his arms around my mom.

When we leave he often comes chasing out after us, and has to be distracted by the nurses. And after what the nurses think is him being quiet and calm, he is really in his room packing all his belongings in a pillow case, and runs down the halls chasing us to find us. He has skinned knees and elbows from the constant falling, cracks on his head, torn skin on his hands and arms.

It is the saddest, most heart-breaking, tragic thing I have ever witnessed.

And I am just witnessing it! I can’t imagine the literally bowels-of-hell-on-earth my dad is living through day by day with this.

He still knows enough to know when we aren’t there. He still knows enough to know he doesn’t belong there, his heart yearns for his family and his old life, and he still knows enough to know, how much pain he is in.

He can’t articulate his pain and his torment. His words and his thoughts are too conflated. You can see where a word or an image sticks in his head and he scrambles one thought into the next to try and complete a thought, but it comes out incoherent.

Yet I don’t need to understand his words. I understand his pain. His terror, his energy is so clear and so raw and so strong. He is living in his own personal hell.

And there is NOT ONE THING WE CAN DO. We are there, my mom and I, every single day. We call the nurses at night, we corner the administration while we are there to assure he is getting every small detail (tracking his bowel movements, his sleep, noting his patterns, etc) taken care of. We hug him, cry with him, distract him, pray with him. But it does not scratch the surface of comforting his lost-ness.

My dad, is not coming back. He is dying, a slow, terrible, agonizing, withering and tortuous death that is playing out day by day, moment by moment. He is suffering, and in agony.

And we have to watch. We have to watch him suffer. I have to watch my mom, watch my dad. I have to watch my 98 year old grandpa, watch his son suffer. I have to be a witness to all of this.

I wish I could explain, how this felt.

I can’t. Its impossible.

And here we are.

Watching this chapter unfold.

My brain works well with putting puzzle pieces together. I thrive a little bit on the chaos of thinking things through, finding a solution and working towards that.

There is no solution. The only end is death, and even that is unknown to us right now. All that is known is that we all, get to sit by his side and watch pain and torture, clinging to every cell in his body, be ripped back, one tiny piece at a time. Death by a thousand cuts, comes to mind.

I do, find solace in three things I cling to right now:

1. He IS still alive, he is here with me. I can hug and kiss him, hold his hand and tell him I love him. That is a gift. He WON’T be here some day so I must remember this, and cherish this.
2. My own support system – my husband is my unified partner. He is my strength and support and we talk, every day and process all that is going on. He is, such a treasured gift to me, and I cherish him more than I ever have in my life. I also have a few, really supportive friends who I am drawing strength from. Leaning on others helps.
3. GOD. He is renewing my strength in Him. I look back over this all and I do see Him clearly. He has allowed things to happen in my life to be present for this. He wants me here. He also wants me to lean on Him and trust Him. He is reminding me, THIS IS LOVE. This is life. We have to go through this, there is no way around it. His love and light, have become part of my core, and He is giving me daily tools, to get through this. The strength I am getting from this, are all part of His universal plan for me here in this world. I have to trust that, and I do.

But damn, is it hard.

I am so, so very sorry for all my fellow humans friends who are going through this. I send my own prayer for your strength and fortitude, May you all somehow, find your own peace and comfort if you are going through a similar chapter. My heart is full for you.