Sunday, December 1, 2019

What Day is It?

Living the quad life can get challenging at times. Weeks such as this last one emphasize it even further and add complications for those around me.

Last week, I posted about my grandfather getting into an accident and he was at the end of his life in hospice. It is a situation that many families have, or will, experienced. However, added challenge comes with my parents also taking care of me.

The morning after the accident, grandpa was in the hospital in Des Moines when my aunt called that dad and his siblings needed to to the hospital quickly. That same day, my day nurse called off sick and left me with only my parents for the day. While mom tried calling anyone that could possibly stay with me, dad got ready for an emergency trip to the city. My other day assistant agreed to come, but would have to finish what she was doing and drive half-an-hour to come. Therefore, dad had to leave on his own and mom find another way to get there. Since it was uncertain how long my parents would be gone, we also had to find help when the day person left.

Over the weekend, the scenario was similar with dad and mom coming and going, helping me, and all of us trying to spend some time with grandpa. On Monday, his condition worsened and both parents, with dad's siblings, went to be around grandpa. That is, until my day caregiver left and mom had to return home again. Wednesday included funeral planning and work at grandma's house with dad's entire family. Once again though, my parents had to leave the rest of the family early and also stay up with me overnight due to no night nurse. With lack of sleep and schedule changes, dad has frequently been wondering what do it was and what was happening when.

It's hard watching my parents try to help other family members in times of need, but unable to do as much as they would like in order to care for me. Also just laying in bed, unable to help my family, doesn't feel right either.

Friday evening was funeral visitation. My grandparents own a small grain elevator and know a lot of people. For over three hours straight, people I didn't know came up to offer their condolences. However, the majority weren't familiar with me living the quad life. A hand would be thrust in my direction expecting to be grasped for a shake or hug. The hand's owner would then usually notice my arms are strapped down and the awkwardness of how to shake, or pat, hands follows. My voice also got drowned out easily amidst everyone else talking in the crowded room.

At yesterday's funeral, I was thankful to be able to deliver part of the message and speak briefly about grandpa. Several people expressed appreciation afterwords that they enjoyed what I said and how it was presented.

Weeks like these show more awareness about people with significant disabilities is needed. Despite the challenges, I'm thankful for what my parents and I were able to do. Now with both of my grandfathers gone, funerals are becoming more familiar. It is part of living in a fallen world and will occur more until my own time comes.

Sunday, November 24, 2019

Time for Thanks

In a few days, the U.S. will be celebrating Thanksgiving. It's a day that's getting overshadowed by shopping for Christmas, but observes an activity that we need to do more than just once a year.

I'm thankful to have a nearly full caregiver schedule again. With the reallocated night nurse helping, November only has two nights scheduled open and one night in December. I'm thankful also that I have close family that helps so much when more care is needed. This week, I was reminded to always give thanks to those around you as well, because life can change rapidly.

Thursday evening, my dad's parents were working on removing carpet on their basement stairs. They both bumped into each other, fell down the stairs, and grandpa hit his head on the cement wall at the bottom. At the hospital, it was determined he had a fractured skull and hip. His brain was also bleeding and less than 24-hours after the accident, he was taken to hospice.

Grandpa and grandma with grand kids
As I write this, my family doesn't know if we have hours, days, or what amount of time left with him in this world. It has been a surprise to see the spry, active, 86-year-old go from running around a grain elevator to being at the end of life.

Living the quad life, I've seen families experience sudden changes when someone goes from being suddenly vent dependent and unable to move. These are times that remind us not to give thanks just one day a year, but every moment of each day.

I know life's circumstances can sometimes make it difficult to find reasons to be thankful. It's easy to want a change to make a situation easier, such as better finances, health, or any number of needs. However, hard times are especially important to look for reasons to give thanks. They can be something as simple as the ability to see, hear, or even take a breath independently. If we take the time, there are always reasons to give thanks.

Above everything, I am thankful for Jesus' sacrifice on the cross and resurrection. Anyone who has repented of their sins and trusts in Him alone, can be thankful for the gift of everlasting life. For Christians, death is just the next step to eternal glory and a time of unending thankfulness.

As you go throughout this week and month ahead, look at what you have to be thankful for already. Be sure that it is also directed to the one who gave up His all for us while we were still sinners.

Tuesday, November 19, 2019

Out of Touch

You never fully realize how much you use something until it's no longer available. Last week, I posted about my chair not working. Thankfully, dad was able to get it going again after working on it. This week, I lost something else I continually use.

Friday morning, I had done my regularly routine and was watching an online video while flat. It stopped partway through and I noticed my computer was no longer connected to the internet. Short down times happen, but it didn't return after a few minutes. I tried restarting my modem and router, but with no change. A call to my internet service provider didn't help either and they would send out a technician, on Tuesday.

I knew I relied on internet access for a lot, like most people today, but this weekend emphasized how much. Without connection to email, social media, and services like Pure Flix, it felt like living in my childhood again. Thankfully, my great friend John was able to access my email to let clients know their updates would be late. He had a busy schedule himself, but was thankful for his help.

During the down time, I watched movies and TV shows I have saved, but haven't seen in a few years. With no other distractions, I could also make good progress on writing my book and reading others for longer than I normally do.

With restored service today, I now have a backlog of work updates, reading, and more that need attention. While it's somewhat frustrating, I'm also glad that I did refocus on other projects.

I think it's good for everyone to concentrate how much time and energy is focused toward a single object. Living the quad life, it somewhat forces reliance on technology in order to connect with the world and stay active. I don't know how I can try to become less needy on things like the internet, but I realized there are areas I should adjust my time. For the next few days though, I'll likely still be catching up.

Sunday, November 10, 2019

Independence Week

Last week's entry was just prior to my parents' departure for the week. It has been an interesting time with both good, and bad, along the way.

With my caregivers changing, I had a few shifts with people that either don't come frequently or just started. One evening, with two of these helpers back to back, I started feeling uneasy and went through training situations in my head. I remembered having the same scenario frequently when I lived on my own in college. However, God saw me through those times as well as this week without trouble.

Thursday, I had my final college class for the year. It had been scheduled for the previous week, but got delayed due to snow. It was a cold morning, but the EMS students were great with excellent interaction and everything went well. All that was left were two appointments in the Des Moines area on Friday.

First, my regular checkup with  my pulmonalogist. My wheelchair has a feature that when I tilt the seat beyond a certain point, it locks out the drive option. When I go more upright again, the drive function is restored. It has been acting up a little the last few weeks, but nothing major. However, as I sat up in the van in the doctor's parking lot, the drive function on my chair wouldn't unlock. With cold breeze blowing in, I tilted again, sat, turned my chair on/off, but no luck. Finally, after several minutes of repeating the process, I was allowed to drive again.

The appointment went well, and I was soon at a library at another Des Moines suburb. I was selected to join a task force to check that people with disabilities in Iowa are living as independently as possible. I had joined one meeting by phone, but this was my first time in person, if I could get inside.

My chair once again wouldn't allow me to drive to exit the van. However, it eventually relented again and let me get into the building. I was joining late, but found a parking spot among the attendees. Lunch break finally came and I joined the line to the pizza. With one small bump, my drive option was again locked out and it wouldn't return. The other committee members with mobility aides navigated around me, but eventually my assistant had to push all my 500 lbs back to my place.

As I sat listening to the meeting, my helper stepped out to call the wheelchair company I use. All technicians were busy though, and won't be able to help until Wednesday. When the day was complete, I had to get pushed onto the van lift, into my spot, and then the reverse when we returned home.

Such is the quad life some days. I'm very thankful for having caregivers both new and experienced that are able to go with the flow. I was at least able to manage without my parents needing to assist. This week may primarily be from in bed, but I'll wait and see what comes.

Sunday, November 3, 2019

Late Vacation

My parents like to get away and go on trips to various locations around the U.S. and sometimes into Canada. They usually go out in early fall, but weren't able to due to my nursing shortage. However, they are planning to leave later today for a few days away.

With October having so many open nights, we didn't know what to expect for November. Mom was determined to take a trip though, so we planned ahead to get evenings covered with someone that could stay with me. If nothing else, my parents thought they could at least do multiple one-day trips around Iowa and be home for the night shift.

A few weeks ago, my nursing agency's scheduler contacted me. A nurse who helped a few times several years ago would be available just for November. He worked well to my memory, so he had a refresher night Friday and worked last night. That means I only have two nights with nobody scheduled and my parents can be gone most of this week.

I'm thankful they will be able to get away for a few days and explore new areas. However, I'm also wondering how the week will go. For the last year, I've noticed I'm becoming more reliant on caregivers that can easily move me around. My grandparents and aunt do very well when they're here, but moving me around in bed isn't an option.

Either the bed, me, or both have changed that I need to be in an exact position in order to do much. If I'm not, my neck, trach button, and mouth start hurting. I have been thinking of ways to minimize movement in the evening so I can stay properly planted. I believe I have a plan, but I'll only find out with testing it.

In any case, it should be an interesting week in the quad life. I'll be using my Amazon Echo to remind me of household chores and try to keep track of groceries. I'm not fond of getting out in the predicted temps, but I hope they will increase as days get closer. As always, only time will tell what God has in store for another week.

Sunday, October 27, 2019

File Finds

Once upon a time, I dreamed of having a large office. Part of it would have large file drawers filled with important information for clients that I would regularly need to retrieve (yes, I'm odd). When mom was getting rid of a two drawer file several years ago, I quickly snatched it. My parents wondered why I needed it, but I thought it would be handy.

In the years since, my two-drawer file has held my tax information (not that I make enough to pay taxes), prescription information (which is mostly the same each month), nurse's paperwork, and much more. The majority of the paperwork has gone into their various folders, with appropriate labels, never to be touched again. That is, until this month.

With multiple nights without a nurse, mom thought we needed a project to help stay awake on our late nights. She has been in a cleaning kick lately, so my file drawer sounded like a good project. Each drawer is maybe three feet deep and almost completely stuffed with valuable (or not) information. Mom's mantra has been that you eat an elephant one bite at a time, so we took on the project in small chunks.

Living the quad life, I can't physically go through my own mail and paperwork. Therefore, I direct my caregivers to what I want done and it works well. Thankfully, I've had many assistants that have stayed for several years and I trust them completely. Therefore, some routine items, like reports from social security 2-3 times a month, just get filed without my needing to direct. Somewhere along the way, this has resulted in some interesting finds during our late night project.

Around 2005, I was looking at returning to college for my next degree. We found several college information pamphlets, including one letter that had never been opened, but was nicely filed away for over a decade. In my stored camp information, one find included my name filling an entire sheet of paper, with nothing else on it. I'm not sure why a black and white name tag from an unknown year needed to be archived, but it has now been refiled under recycle. Other treasures, such as paperwork for researching my diaphragm pacemaker, bring back memories of time and experiences I have been given.

After nine nights, only a portion of one drawer is complete. Moving forward, I think I need to be more observant with my filing system. However, it has been an interesting trip of discovery and remembering the path God has taken me on. Snow and slush is predicted for tomorrow, so I'm guessing I'll have more organizing time. I never know what will be found next, and may not want to either.

Sunday, October 20, 2019

Reaping what is Sown

It has been a difficult year for farmers in Iowa, but harvest has slowly started. Not everyone was able to plant last spring, but they are now gathering fields that were sown. The last few weeks, I have been watching story time (the news) on TV, reading emails, and observing life around me. Through this, I see the world is now reaping what was sown.

Since abortion was legalized in the U.S., over 60 million children have been killed prior to birth. In the 40 years this has been going on, I wonder how many of these kids would have now been married and had children, and even grandchildren, of their own. I don't know what the statistics would say, but the total number of people that are missing is much higher than 60 million.

About the same time of Roe vs. Wade, China implemented a law that a family could only have one child. After more than a generation has passed, China realized they are now facing a shortage in workers for factories, caring for elderly, and more. The rule was changed in 2018 to allow two offspring, but now that is under advisement as well.

Thankfully, America didn't have such a law, but I believe we're still facing similar results. Iowa, and the country, is experiencing a low unemployment rate. As a result, there are more job openings than people available to fill them. In my small town alone I am getting used to seeing regular signs advertising work available. That also includes my on-going need of finding more nurses to help cover time.

Unfortunately, this country doesn't seem to learn or pay attention. With increasing political campaigning, one party continues to push expanding abortion and even making it a right. On the opposite end of life, some countries are also expanding euthanasia allowances. If an adult, or even child, has some type of disability or depression, then they legally be killed by a doctor. It's becoming a common part of socialized (government-controlled) healthcare and also something candidates want to implement.

I know that living the quad life sometimes gives a unique perspective on life. However, it isn't something that only I have noticed. I'm thankful that God is in control, but I keep wondering what life was like before Noah's flood or when Israel was taken captive by Babylon. I pray we don't go that far, but will need to be vigilant through the weeks, months, and years ahead.