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.”

Good.

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.”

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.

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.

Discharge

Well, Andy’s dad is coming home on Saturday from the rehab facility.  Now the fun begins.  He got around the apartment okay with his walker; only a few minor furniture placements need to be addressed. 

It wasn’t until yesterday that it really hit me how much this whole situation affects my children.  They are struggling to be normal kids in this world with all the activities and friends and stuff that goes with that.  They deserve to have fun and don’t worry about the grown ups in their life…only that’s not what’s happening.  I spent the long weekend at home with all three of them and still can’t get over how irritable they are.  Erin wants to sleep all the time and needs to be prodded to go to her friend’s house.  Colin won’t let go of my leg when I’m here and Liam wants out.  None of that is good and none of that is the way it used to be.  They have two working parents who also have the responsibility of taking care of their aging grandparents.

While I was supposed to be home yesterday with my kids I spent the morning (two hours of it) helping to balance the checkbook next door.  Unplanned, unannounced and without thought to how it would affect others.  It just happened that way and so when my kids looked at me and said “I thought you were going to be HERE today” I nearly cried.  They miss their mom and dad cause when we are here; we aren’t here.

Something’s gotta give. I just don’t know what.  And, it’s gotta give soon. 

Trial Run

     Four and a half years ago, Andy and I made a decision that has greatly affected our lives in ways we weren’t prepared for. We bought a property with an in-law quarters so that his parents could move in. At the time, the decision was made because his mother was having some mobility issues. That has resolved. But, in the meantime, his dad’s Parkinson’s Disease has taken hold and crippled him and is beginning to suffocate those around him.

Over a month ago, Andy’s dad was admitted to the hospital with severe dehydration. He had been sick for weeks and neither he nor his wife were taking care of it.  They are fiercely independent and wouldn’t seek medical care for what they thought was a minor illness. He became sicker while hospitalized and then transferred to a skilled care facility for rehabilitation.  The goal of rehab is to get him home again. 

During his absence, we have begun to learn more and more about Andy’s parents.  The facade they have constructed during 60 years of marriage is crumbling and the picture isn’t so pretty anymore. So much energy has been spent on doing the “right” things in public and being the “right” person and not enough energy spent on developing relationships or being at all real.  There seems to be no one around them except us.  Even their church has no idea what their real struggles are and there are no friends in the congregation at all.  The pastor shows up on occasion to visit at the nursing home, but that’s it.

Today the therapist from the nursing home is coming here to see the apartment.  Andy’s dad will be here too to try and show her how well he can care for himself at home. Hopefully it involves a walker and a wheelchair. It’s his trial run. I’m sure he’ll put on a great show; I’m not sure she’ll get the real picture.

We’re frustrated and irritated and sometimes angry.  We’re sad and confused and often stressed out. We are at a loss for what to do; what would truly be the best thing to do.  We know they need more physical on-site care.  We also know they won’t allow that yet from anyone outside.  So, that leaves us to either drop everything and be here or just go about our lives and watch them struggle with their day because they’re too proud or independent to ask for help. Much of his physical care falls on Andy’s mom.  She can’t handle it.  She doesn’t want to handle it and she’s made that very clear to her kids but she won’t tell her husband that. So, instead, she does whatever he wants at her own risk. 

I struggle with being home for them more. It wouldn’t hurt my kids either if I was here more than at work.  But, we’d be financially incapable of maintaining our property or anything else.  So, that’s not a choice.  Andy has even considered quitting his job to be here; that’s not a viable option either.

So…we’ll see how today’s trial goes. Then we’ll know more about what will happen in the near future.  The only thing for sure is that it just won’t be easy. For anyone.