Recently I Was Really Tired Out

Colin crawled into my lap this evening. He had a rough day at school today. During Library, he got “in trouble” and had his name moved from the Green to the Yellow light on the traffic sign. That’s a bad thing. When you get to Red, you are in deep doo-doo. It took him nearly an hour to let me in on what he had done to result in his traffic light changing. Library days are wonderful and he didn’t come home with a book…what gives?

HIM: “I was sword fighting with my book-finder.  Me and Chorea were swordfighting and got in trouble and we got our books taken from us and we had our names moved to yellow and, and…..and I DON’T WANT TO TELL YOU!!!!!”

ME: “Thank you for telling me what happened. I’m sorry you didn’t get a library book, but I’ll bet you won’t sword fight with rulers again.”

HIM: “NOOOOO!!!! I’ll NEVER EVER do it again.”


Someone asked me this morning if I was ready to get back into the swing of things. I bit my tongue and smiled rather than telling them that my swing had swung far away many weeks ago.

 I’m looking for it.

Three months ago I was working full time, swimming with my kids, admiring my husband as a stay-at-home caregiver.

 Two months ago, hubby was starting a job and I was ready to be home to care for everyone.

 Six weeks ago I was at the beach.

 One month ago, we were asking Hospice to come care for Charlie as he prepared himself to take his final journey.

Three weeks ago I was managing medicines, phone calls, dr. visits, meals, bedtime, baths for young and old.

Two weeks ago, I was beginning to sit vigil.

One week ago I was planning for a funeral and sharing my home with extended family who rallied around to get through this.

Today, I said goodbye to the last of visiting family. I made calls to Social Security and insurance companies informing them of a death. I mowed the yard. I said goodbye to my husband as he left for a week away. I wiped tears, fed bellies, made beds, washed towels and felt very very lonely.

If this is the new swing….it’ll take some getting used to.

HIM: (On my lap) “Mommy…recently, I was really tired out.”
ME: “Yeah, why?”
HIM: “Cause I ate a whole green apple for supper.”
ME: “Good! I’m tired too.”
HIM: “Why?”
ME: “Cause I’m looking for my swing and I can’t find it.”
HIM: “Well, you can borrow mine.”


The Art of Dying

The art of dying requires a certain finesse. There are prescribed and predicted symptoms that each terminal person may go through, but each of us our own way of ending the journey.

Charlie died less than 2 hours ago. We knew he’d be going soon, but the nurses told us we had hours left. My gut said, it’s time…but we began to talk about taking mom home for an hour or so.

Twenty minutes later, Sue, Fay and I stroked him and talked to him as he took his last breath.

He died well.

He died quietly with no pomp. 

He died with the sunlight and beautiful warm breeze blowing in on him from the open French doors in his room. The nurses had faced his bed to the door and pushed him close to the outdoors.  He hadn’t been outside in weeks…it was perfect.

A Root Canal Would be Easier

Sometimes we fight with every ounce of strength against a thing that we do not want to do.  Control is a hard thing to let go of.

Charlie slept through Monday and Tuesday. I say “Slept” because he snored a lot and wouldn’t respond much unless someone moved him and then he moaned a little. The doctors said it will be a matter of days…but it could be many, many days.

Liam spent some time alone in the room with him crying and talking to him. He wouldn’t tell me what he said to Poppy. His only comment was that “Poppy’s breathing sounds like Darth Vader.”  Every day, Liam’s first question when he gets home from school “Is Poppy dead yet?”  His heartache is anxiety over seeing all of the sad people to come.

This morning, Poppy was awake with his eyes shut and talked to Fay and I for about an hour. He seemed to have a few things to resolve. We told him that everything was taken care of and that he didn’t have to worry anymore. Then, he began to fight against the delusions and confusion that started. He was in line somewhere in New York waiting for his turn to get a role in a play.  He wanted the lid of the jar in his hands opened.  He wanted to know who I was. He said I looked like Santa Claus or something.

“Here’s our escape route….we turn left.”  Really? GREAT!!! Let’s go babe!

He’s fighting this every step of the way. It’s hurting him, it’s hurting her and all of us who wish is wouldn’t be this hard. A root canal would be easier than watching him sometimes. I guess people’s personalities follow them through the death journey too. Always in control, he’s controlling this one too.

Your Chariot Awaits

An ambulance took Charlie to Hospice about 10 hours ago. The goal is to regulate his medications and make him comfortable so he can safely come home.

 He fell twice last night, injuring his wife on the second fall. He hasn’t slept in two days…just cat naps.  Like he said, “No point in living if I have to stay in this bed.”

He couldn’t rest at all this morning.  Can’t get in bed….can’t sit in a chair…gotta pee…gotta sleep…need a snack…need a break.

Nothing is comfortable. Everything’s lousy.

He started throwing ice packs, pillows and water glasses at me this morning when I wouldn’t “get me the hell out of this bed!”

Within an hour of calling Hospice, they had the social worker here to facilitate his admission. Thirty minutes later, the ambulance was on the way to transport him. When they pulled in the driveway I said, “Dad, your Chariot has arrived.”

He grinned, then winked.

“Please make sure you have the right one this time.”

I’m hoping I did that. The Chariot to heaven is the one he wanted.

We Can’t Fix This.

Listening to the Hospice doctor speaking to Fay and I today, I was reminded how serious the job of helping someone die really is. We had our first Hospice consult on Friday last week. Six days later, we’ve had 4 scheduled RN visits and one highly unscheduled visit when Charlie fell. We’ve had two social work visits. Today, Dr. Playfoot came here and stayed until we were ready for him to leave. Nearly 90 minutes.

He cared, he talked, he asked, he questioned, he looked, he examined and observed. But most of all, he was a human treating a human. Not a clinician treating a symptom.

So often in the medical field, we want to fix the thing that bothers our patient by throwing medication or therapy or tests at them. For nearly 30 years, Charlie has been rescued and sustained by an ever-increasing number of medicines. New surgeries, fake heart valves and blood tests. He has a neurologist, cardiologist, urologist, endocrinologist, podiatrist, internist, gastroenterologist and a family doctor who shall remain nameless because he’s the most incompetent physician to walk the earth.

Now, he has a hospice team who will save him from blood tests, unnesecary pills, and stupid ideas of physical therapy. He has a team of people who care about all of us and are willing to help him live comfortably as long as he wants. They are also willing to help him die comfortably when he decides to give that a try.

They are the first people to ask Andy and I how WE are doing.  The social worker stopped by unannounced with information on how the kids can deal with this.

We can’t fix this.  Fay wants to try, but we can’t.

Today she found out that no one can fix it.  Dr. Playfoot told her that he can’t fix each symptom…we’ve lost part of this fight to PD. 

Maybe she’ll get it.

What are You Waiting For?

Three months ago I wrote my last blog post. Things are certainly different now.

Over a decade ago, Andy’s dad was diagnosed with Parkinson’s Disease. Until three years ago, he was working and driving 40 miles to work. Until one year ago, Andy’s mom was still driving him around but having a hard time. Now, no one drives.  No one leaves the house. Charlie is bedbound most of the time and his wife just counts the minutes until she can sleep.

This is not a post about what it’s like to live with Parkinson’s. This isn’t mushy commentary on how it must feel to watch a spouse die. I’ll get to those things some day I’m sure. Tonight, the post is more of a venting of my own feelings.

If you will be offended by humor in light of death…don’t read. If you will be bothered with the crass reality of this disease…hit the “back” button.

Some abbreviations to know:
PD=Parkinson’s Disease
PWP=People/Person With Parkinson’s
PC=Personal Caregiver

Did you know that the mortality rate for people that care for a spouse or close relative who has Parkinson’s Disease is 60% higher than those who care for any other type of chronic debilitating condition. The majority of nursing home admissions for people with PD are the result of a caregiver’s illness or death.  Reaffirms my feeling that if we didn’t have Hospice care for Charlie….we’d soon need it for me and Fay.

Today I am just trying to find the humor in all of this. Six weeks ago, Charlie’s PD began to seriously kick his ass. Blood pressure changes uncontrolled by medication. Serious agitation which caused him to ask to die. I mean, crawling out of his skin and unable to function kind of irritability. Blood sugars generally run high since he’s diabetic…suddenly…he’s really low…really really really low.  Can’t walk without leaning sideways.  Pain in places he forgot about.  Seeing people and talking to people that aren’t there. Hallucinations.  Forgetting things like what he had for breakfast or where he was.

Two days ago he fell over while out of bed without help because he was cold.   He forgot he can’t walk anymore.

Ten days ago he knew who I was. Today he thought I was a patient in his nursing home.  Trouble is..he’s not in a nursing home.  He wants to know “Who’s in charge of this place. I need to make some changes here and I want to know who’s in charge.”

No one is in charge, dear. Only Parkinson’s. He’s in charge.

Sunday afternoon he visited an amusement park. He was helping the Merry-Go-Round operator fix the machine. It sounded like fun. Later that day he was at a football game in Williamsport listening to Dragnet on the radio.  He had a great time.

Yesterday he wanted me to water the flowers in his room. After that “please tell that guy in the other room that my legs don’t work, otherwise I’d do it myself.”

So, I cried while I laughed.

It sucks. It really really sucks.

He’s smart and intelligent and educated. It’s not fair.

But he’s also still 140 pounds of dead weight and my arms, legs and back can’t handle much more!!!

Thank God for Hospice and home aides.

Just can’t figure out what he’s waiting for. Nothing left to live for here.

I’ll have to find out who’s in charge of this place to let him know it’s okay to go.