Week of rest again

My family and I have made it through another week of long nights. On Friday, we rejoiced at the news that my main night nurse was released to return to work. Friday and Saturday night were covered by my other night caregiver which means that part of my schedule should now be filled.

It was nice to get to sleep all night Friday. Saturday morning, my caregiver reported to dad that she didn't hear a word from me all night. This stretch has again let my family grow in appreciation for the blessings God has given us in nurses.

Tuesday was 2-22-22, and I had planned on getting some pictures of my clocks showings all two's for the time and date. I forgot, but did a substitute of taking a screen shot while watching trains in Flagstaff, AZ through Virtual Railfan. At 11:22 PM Central time, I took the picture while a train was passing. To note the event (yes, I'm easily entertained and don't get out much), I posted the prize photo on Facebook and said why I was awake.

My purpose was to show the unique time stamp, but my friends picked up on the lack of nursing and commented on the situation. One friend, who is a fellow vent-dependent quad nearing 39 years post injury, said he hasn't had night care for seven years. His aunts help him with night needs instead and he's able to stay living independently. Two weeks was very hard on us, I can't imagine going for years. However, I'm thankful for the support system he has in place.

Finding caregivers has been hard for years, but is now extremely difficult with government mandates and fewer people in healthcare. Another friend said that a hospital close to them has started hiring people with no formal medical training and teaching them what to do. I can see this becoming more common, especially for those in the quad life trying to stay home. Paying these caregivers is another issue, but it's at least a good start to find someone.

It looks like the start of March will be a week more toward normal. As my busy time of year resumes, I trust in God's timing to continue to provide all I need.

Zombie Week

In my last entry, I said my night nurse would be off and I didn't know what would be covered. Unfortunately, my other caregiver has not been able to take anything extra. It has been a long week of many short nights.

Last weekend was covered, Friday-Sunday, but that was it until Friday. Now, we're in a six night stretch with no help again until next Friday. Thankfully, days were basically covered last week and my parents and I could get a bit of a rest. Tomorrow is the last shift for my day-time assistant until she gets back from vacation in March. Therefore, I'll only have my new student nurse that can only do 1.5 days a week.

We adjusted some of my care schedules so dad can get to bed by 9:00 every evening. Mom and I stay up until around 1:30 in the morning when he gets up and takes over. When he and I finish my bed-time routine, it's a little after 2:00 when I get turned and can attempt to sleep. On days with a nurse, dad goes to work at 7:00 and my morning routine starts at 7:30-8:00.

When it's only a single day, or maybe two, we can manage pretty well. This has been a long stretch to not have anyone though and this coming week will be worse. From around 9:00-11:00, I feel like I'm in a daze and start to doze off if I'm not doing something active. I have tried to nap in the afternoon, but I am usually thinking about everything I should be doing and can't rest very much. My parents are also starting to look like the same daze and also keep working and managing the house.

Times like this really make you appreciate the gifts you have. I know other families that only have a few hours per day of coverage, if even that. These two weeks, if not longer, have given us a small taste of what they experience. Today marks 37 years since entering the quad life and, looking back, I am very thankful for everything God has allowed me to do and the abundance of blessings He has given.

As you go through this coming week, be extra mindful of what blessings you have been given and be sure to give thanks. Even what we take for granted, like vision, hearing, and breathing, can be taken away in an instant. Even short reminders make us appreciate what we have.

Work a Month in a Week

Have you ever neglected to thank God for some of the gifts He has given? It's easy to do when everything is going well, but I try to remember to consider the blessings I have and give thanks. One of those things I can easily forget is work. Most months, I have about 3-4 hours of paid work for web development with the majority of the time from one client. It isn't much, but it is at least something and I've been trying to remember to be thankful for it as I calculate my time each month.

Sometimes, as you give adoration for what you have, more is given. For a couple of my clients, I have been urging them to make some major improvements for a few years. Two finally agreed to make the big updates I've been encouraging, but both came this week. In addition to that, I also interviewed to start with another volunteer site. Therefore, I have worked more this past week than I typically do in a month.

I would much rather be doing something productive than have an idle stick. However, my schedule of sitting upright for 45 minutes 3-4 times a day hasn't changed. It has been a balance of prioritizing time to what project, but everything has gone well. One site is nearing completion and the other two won't take much longer. I am very thankful for the increase in responsibility, but would need to adjust other projects if it happened for a longer period.

With trouble having my day caregiver hours covered, I've been thankful nights have mostly been filled. Unfortunately, my main night nurse missed Thursday evening due to medical concerns. Now, he will be off for up to two weeks. My other night assistant normally just does 1-2 nights a week with me and has other clients. With February already scheduled, I don't know how many more she could do for me.

Living the quad life can mean circumstances change quickly. Just when I thought my parents could start getting a break from always helping me, it will go back to needing further assistance again. As the Bible says in a number of places, "It came to pass." That means the good and the bad times will not be permanent. I pray this week goes well with no more major changes, but God is in control whatever comes.

Full First week for February

Much of the time, it seems like one week is a repeat of the previous. However, they do change every so often, sometimes for better or worse. This past week did have quieter laundry, but that wasn't the only thing to report.

Brenda, my new assistant, had her first days of working with me on her own. My parents were also around, but they primarily ignored us and were only around if needed. Brenda is a college Sophomore that will soon celebrate a birthday to be out of her teens. For experience, she has worked in a nursing home for a few months as a CNA.

I have reminded myself a few times that Brenda is the right age to be my daughter if I had gotten married shortly after high school and had kids by age 21. Every time she has been here, I've been extremely impressed by her ability to learn and jump into her role. Multiple times, Brenda has been shown a procedure she hasn't even seen before, and is doing it on her own after 1-2 demonstrations. God has blessed my family tremendously with her and I look forward to helping her gain experience. When Brenda starts to actually learn hands-on care in three years, she will be very far ahead of her peers.

With Brenda working a day and a half and my other day nurse volunteering to work extra, I had 4.5 out my regular five days covered. This was another blessing in disguise as Wednesday, my maternal grandmother had some medical difficulties and had to go to the hospital. My parents were thankfully able to help and not need to stay home with me. Grandma is still being observed and waiting to decide on what's next, but is improving.

I didn't have a nurse part of Friday night or at all last night, but those will hopefully be the only open night shifts this month. The last few months have been a struggle in the quad life, but I'm always thankful to look back on God's timing and how He has arranged everything. This week looks to be a welcome warming trend for a few days and I'll be busy with a project. I'll wait and see what comes after another seven days have gone.

Less Noise or More?

In 1993, my parents built the house where we now live. Our first home had steps to every floor and laundry in the basement. When they planned our new house, it would have all level entrances with the laundry room next to mine for easy access. That means, the washer and dryer are just an insulated wall away from me.

After over 25 years of hearing laundry almost six-days a week, I've become very familiar with the sounds and cycles of the machines. Sometime around the late '90's, mom got a new matching pair washer and dryer. Unfortunately, the machines made by Maytag were very problematic and quietly were replaced by the company. We must have missed that notification, because ours are still running. A very large part of that is due to dad working on them and replacing parts.

For about a year, the washing machine has been getting much noisier than usual. After ordering some gears, dad determined to work on the washer and try to get it to last longer and be a nice neighbor. Yesterday, he was able to start on his project and see what was going on inside. Before starting though, mom did a couple quick laundry loads just in case.

In the room next door, I could easily hear a lot of loud banging and clanging as dad worked to get old, rusty gears off and new ones on. The pounding echoed off the laundry room's tile floor and started making my ears hurt. I imagined the sound would be worse for dad and wondered if some ear protection might be good for working in a confined space. I guess I was too late as the suggestion went in one ear and out the other and he said it was fine. Unfortunately, the laundry revitalization project didn't always go quite as planned and required frequent consultation from YouTube.

I'm thankful God has blessed me with parents that have the skills for helping me live the quad life. Dad's mechanical abilities have prolonged my equipment much longer than expected and enabled me to be active and serving God in various roles. I'm not sure if the hammer noise will result in less laundry sounds, but that will be determined in the week ahead! Have a great start to February and getting closer to spring.

Progress to Come?

A lot can change in a week, and this one made progress toward getting more help. I won't have every open shift filled, but anything helps.

One of the schools I contacted had a student reply that she was interested in helping me. I looked at her resume and gave a few of my quad life videos that show some of what I do. I liked what I saw and watching my cares online didn't scare her off, I interviewed the student last week. Now, she is scheduled to come in a few days to start training.

It has been over two years since I last trained anyone, and that was a different situation. The new caregiver was a home care nurse already and had several year's experience. He was also trained by my other night nurse who has worked with me for nearly two decades. Sara is the one who usually trains day and evening caregivers, but she is still out on leave.

Any nurse with experience will say home care is much different than working in a facility. For example, I reuse equipment that hospitals normally use once and throw away. One common item are med cups. I'm the only one using them and I take the same medications almost every time. Therefore, I use a cup, it goes through my cleaning solution, and then back on the shelf for another round.

When teaching how I do everything, I'll need to remember to emphasize school will say to do some things completely opposite of what I do. However, this will hopefully be an excellent learning opportunity to gain experience and work with different technology. To my knowledge, their are only a handful of people in Iowa that use a diaphragm pacemaker. I'm excited to have the opportunity to teach and get more help, but also pray I don't lead her astray somehow.

Due to class schedules, the future nurse can only do one full day and one afternoon a week and only until school finishes in May. That will be another 15 hours per week covered out of the 30 that's missing and will be a big help in the quad life. I'm thankful for God's blessings and pray everything goes well with showing my care routine. I also pray her paperwork with the state will also be complete before summer break. I will see what comes for the next few months and give thanks for what I have.

More snow that must go

It's winter and I'm in Iowa, that means cold temperatures and snow. We have not had record amounts like some areas, but we are still receiving a good amount.

As predicted, snow started falling early Friday morning and continued for most of the day into Saturday morning. My Friday night nurse called off early in the day due to projected snow totals and road conditions. Since she drives quite a distance, so my parents and I expected that would happen.

Therefore, after nobody to help during the day, mom and I stayed up until about 2:30 Saturday morning. Dad then took over after getting a good five hours of sleep and got me ready for bed. He then started my morning routine a little after 8:00 and immediately went to clear snow after he was finished with me. Dad spent all of Saturday morning, and more, taking care of snow around the house and then at work.

It is nice watching snow through webcams in other areas, and even out my window, but I don't like when dad gets stuck with continues work. While I was up Friday night into Saturday morning, I watched a documentary called "The forgotten children of Ukraine." It covered children with a wide variety of disabilities that were given up by their parents and put into orphanages.

The conditions and medical "care" they received were horrible, even with an orphanage director that worked to help them. When children became adults, if they survived that long, they just went to other institutions and never out in society. One wealthy individual was trying to help a few people escape the system who appeared to not have any physical or cognitive challenges.

I'm very thankful for the parents God has given me as well as living in a country that does help people with disabilities, even if not as we would always prefer. I pray for these children in the video and saw a few comments that some of them had been adopted and were doing better.

Whatever challenges come this week in the quad life, I will remember try to always remember to give thanks in all circumstances. I am also looking forward to spring, which comes closer every passing second.