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.

Please Throw Stuff Away!!!

I am pleading with you…do NOT hoarde decades worth of financial documents, illegible scribblings intended to log all your medical expenses, little calendars with your mileage to doctor appointments on them, paystubs, cancelled checks, benevolent gifts and other useless tax write offs.

As a daughter-in-law of someone who never throws things away…I implore you to look beyond yourself and realize that someday, one of your children or one of your children’s spouses will spend hours and hours going through all that crap and then pitching it!

I am now surrounded by boxes of papers ready for the Shred-It people who will charge me by the pound to obliterate any traces of personal information contained therein. They charge by the pound. I have at least 90 pounds of papers.

The IRS and Medicare are tricky. You can claim expenses, itemize deductions, under certain circumstances. Most people don’t fit those circumstances. So…stop with the obsessive record keeping.

Don’t go to funerals, give a donation to the memorial fund and then write on the pretty little service program you received the amount of your “charitable donation” and the date you used it as a tax write off. That’s just sick.

Don’t paperclip or rubber band all these things together. I have to remove each and every one of those before the shredder can eat the paper inside.

Don’t keep everything in it’s original envelope with little notes on the outside referring me to the date, hour, minute and second that you spent the money or claimed the deduction. It just makes the whole process of going through your stuff even more aggravating.

If you had spent half the time, money and energy on playing with your children and grandchildren or having fun with your wife that you did keeping, sorting, filing, documenting and storing all these papers….I can’t imagine how different it would be.

The Love of the Father

In early October, 2006, a man walked into an Amish school armed with rifles, pistols and deep pain. No one will ever understand why he chose to execute a group of young Amish girls; we don’t need to. It is the aftermath of that day that will live forever in the lives of so many people all over the world and the consequences of his deeds are far reaching in ways that no one expected.

Three nights ago, Andy and I witnessed God’s healing and grace in action. We were invited to visit with a little 8 year old girl who bears the scars of that day in October. I will call her Miss S. Andy was one of the people who treated her that day. I remember the evening after the shooting, he was telling me how feisty she was. With the extent of her injuries, he tried to intubate her to help her to breathe and she kept pushing him away. He desperately hoped that meant she would make it through. She did. And when we walked into her kitchen she ran up to him and laughingly said, “I look better than I did the last time you saw me!”

As we sat in their living room, we heard her father’s stories of how brave she was, how miraculous her healing and what an impact she had on the staff at the hospital who worked with her. He told of daily visits to the hospital, relying on others to drive them. Only on Sundays were they unable to be with her. Aunts, grandfather and parents; someone was always with her. As he spoke, tears threatened to fall, but he had a never ending smile on his face as he watched his daughter. Their family also lost a daughter to a bullet, but they do not dwell on her pain or death. They focus on the miracle walking around their house.

While we were there, two other families stopped by to visit. They didn’t know we would be there, it was just their normal visiting night. God planned it though, I am sure. One couple lost their daughter that day. Another man was a first responder and a member of their church and knew the girls. He had been the first to aid the little one Andy took care of.

The living room was crowded with chairs for the 8 adults and we counted nearly 12 children from age 12 to 4 weeks running in and out of the room. Listening to the Amish men speak of their experiences that day and reliving their roles was so healing for us. They asked questions of each other. “Where were you?”  “What happened next?” and “When did you find out who passed away?”.  They discussed helicopters, the speed of the police cars responding and the dynamics of the whole event in very factual terms. I felt as though I was sitting in a group therapy session. Nearly six months later, and these parents still pour out their memories and questions to eachother in order to unload their grief.

The most incredible moment for me was a conversation between the first responder and a mother whose daughter had died. He said he had been struggling with the fact that he could have identified each of the girls and let their parents know which hospital their child was sent to or what their physical condition was. But he didn’t, and it wasn’t until much later that night that parents knew the fate of their children.  The mother of the slain girl looked at him and said, “If I had known what had happend to (her), that she had passed away, I would have left the school and gone home. Instead, I stayed with my friends and waited. I am glad you didn’t tell me or I would have been alone all day.”

In our Sunday School class we are studying what Mennonites believe. Woven into all that discussion is the idea of community as a place to study scripture, learn and work together. These Amish families that night embodied that perfectly. They relied on each other to hold them up each day and listening to them talk together for hours about thier experiences was healing for them and for Andy and I.

Miss S never stopped smiling or kissing me after she opened the gift we brought her. Her father noted that the hospital wasn’t able to take the “silly” out of her when they removed part of her brain! His obvious love for her was palpable.

Both of her parents repeatedly stated that without God carrying them through they would have cracked up. They have received hundreds of letters and cards from around the world from people who want to live their lives differently and with less anger now that they have witnessed forgiveness and grace from the Amish parents. To them, that makes it all worthwhile. They even received word of a country closed to the Bible that was allowed to view footage of the event and send their condolences through their government controlled mail system. The idea that the murder of little Amish girls in rural Lancaster county touched the lives of people behind a communist curtain was amazing to their parents and made God so much more evident in the aftermath.

Miss S’s father asked me if I thought the effect of this would continue or if it was just a short lived “one day” ripple of grace. I told him that I think that his children and the children in his community will be testament to Christ for the rest of their lives. I believe that.

The love of a father for his children so close to the love of The Father for us. Amazing grace and peace where there could be so much anger and fear.

The new school building is nearly ready and the kids are excited to use it. That building itself is a testament to faith and trust.

We healed that night a little, I know Andy did. So did the parents we met with and the children playing around us. Miss S has a brand new baby sister to love and 6 brothers to take care of her. She is a little bit of a celebrity and a very happy little girl. Her scars are hidden with a new head of hair and her vision is returning to normal. She bears little outward scars of the fearful events of that day in October and inwardly, I think she’s just fine.