Day #11:
I’ve spoken briefly about caregiving and ALS. For the most part, Amber has been my sole caregiver. Our children sometimes help to feed me, or empty my catheter bag, but they don’t like it. It’s not natural for a young child to have to take care of their father. And, as far as eating goes, it takes a long time…like 90 minutes if I eat a full meal. Fortunately, I had a feeding tube placed a year and a half ago, so I get most of my food through that route. But if we are having something really tasty, and if I have the stamina, I still enjoy tasting my food. (Who doesn’t, right?!?)
Last fall we hired someone to come in during the week to help me in the mornings by feeding me breakfast, and then helping me to shower and get dressed. This would allow Amber time to help our children get off to school in the morning. That was working out fairly well until the quarantine started. Now we’re back to Amber doing everything. In the future, I will require more assistance with transferring, bathing, and positioning. Eventually I will require 24 hour care as I will need a ventilator for respiratory support.
Needing a caregiver is interesting to say the least. It is quite humbling! You are required to open up your home to individuals to come into your most personal of spaces to provide care. It is certainly an adjustment to go from entirely independent to entirely dependent. Think for a moment about what you do in the morning to get ready for the day. Now imagine not being able to do any of it. You have to rely on someone to do it for you.
Ready to get out of bed? You have to wait for someone to help you (sometimes this requires lying awake for hours until either someone wakes up to help you, or the pain in your shoulders/hips/lower back becomes intolerable from lying in one position for hours that you can’t tolerate it anymore and you wake someone up). Feeling hungry? You have to wait for someone to feed you – and you chew so slowly that most everything you eat is room temperature anyway. Ready to shower, brush your teeth, or shave? Well, get use to having someone else do it for you. As an experiment, you might try having someone else brush your teeth just to see how that goes. Chances are it will be an unusual experience. Needless to say, having someone attend to your every need is nothing short of a life adjustment.
We have had an enormous amount of help over the past few years with people just stopping by to bring dinner, groceries, helping to babysit our kids, cleaning our home, running carpool, and pretty much anything you could think of. Amber’s sister, Cindi, has been flying in to spend a few days each month to help out around the house and to make fun things with our kids. Our parents have also been a big help with each of them coming to stay for extended periods to lighten our load. These seemingly small acts of service have been a HUGE blessing! Anything that has been done to lighten Amber’s load is a big help. I couldn’t possibly list every one who has helped our family because there are so many.
Two individuals stand out though. Last Fall, Melanie Anderson started taking our two youngest kids in the mornings twice a week. She has helped our family before by watching our kids, but this was different. This was a regularly scheduled act of service. This was her idea. This was a way for one redhead to show love to our little redhead. She did this to allow time for Amber to feed me breakfast and shower me in the mornings. Then we hired a bath aide to help me, but she continued to take the kids to allow Amber to have to time to do other responsibilities or to simply rest. The kids would always come home happy and with some kind of “treasure” from Melanie’s treasure chest. It has been a huge help, and I am extremely grateful for her service.
The other individual started helping our family about 6 months after my diagnosis and hasn’t stopped. Initially, Cambrie Nelson would take the youngest kids one or two days a week for a few hours, or she would randomly show up with a meal and then do our dishes or clean our bathroom just to help out. She helped to coordinate meals when our family was in particular need. After about a year of helping our family, she started doing physical therapy to help me passively stretch my arms and legs three days a week. She developed a routine of stretches that she would do just to move my limbs and help prevent my joints from becoming stiff or frozen (permanently unable to move). She came every week and continued until last fall, when she started coming 5 days a week. In addition, she also took our two youngest kids one morning a week to allow time for Amber to help me, or to just be able to do whatever she needed to do. Outside of my family, she has given me more help than I could ever thank her for. I honestly believe that I don’t have more pain in my shoulders and hips because of the consistent care she has given to me and my family.
The other day I said that until there is a cure, technology is the cure. I honestly believe that! However, it has also been said that until there’s a cure, there’s care. I have also found this to be true, and I’m grateful for all of those individuals that have so lovingly given of themselves. Thank You!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #NoWhiteFlags #ItsCoolToCare
I’ve spoken briefly about caregiving and ALS. For the most part, Amber has been my sole caregiver. Our children sometimes help to feed me, or empty my catheter bag, but they don’t like it. It’s not natural for a young child to have to take care of their father. And, as far as eating goes, it takes a long time…like 90 minutes if I eat a full meal. Fortunately, I had a feeding tube placed a year and a half ago, so I get most of my food through that route. But if we are having something really tasty, and if I have the stamina, I still enjoy tasting my food. (Who doesn’t, right?!?)
Last fall we hired someone to come in during the week to help me in the mornings by feeding me breakfast, and then helping me to shower and get dressed. This would allow Amber time to help our children get off to school in the morning. That was working out fairly well until the quarantine started. Now we’re back to Amber doing everything. In the future, I will require more assistance with transferring, bathing, and positioning. Eventually I will require 24 hour care as I will need a ventilator for respiratory support.
Needing a caregiver is interesting to say the least. It is quite humbling! You are required to open up your home to individuals to come into your most personal of spaces to provide care. It is certainly an adjustment to go from entirely independent to entirely dependent. Think for a moment about what you do in the morning to get ready for the day. Now imagine not being able to do any of it. You have to rely on someone to do it for you.
Ready to get out of bed? You have to wait for someone to help you (sometimes this requires lying awake for hours until either someone wakes up to help you, or the pain in your shoulders/hips/lower back becomes intolerable from lying in one position for hours that you can’t tolerate it anymore and you wake someone up). Feeling hungry? You have to wait for someone to feed you – and you chew so slowly that most everything you eat is room temperature anyway. Ready to shower, brush your teeth, or shave? Well, get use to having someone else do it for you. As an experiment, you might try having someone else brush your teeth just to see how that goes. Chances are it will be an unusual experience. Needless to say, having someone attend to your every need is nothing short of a life adjustment.
We have had an enormous amount of help over the past few years with people just stopping by to bring dinner, groceries, helping to babysit our kids, cleaning our home, running carpool, and pretty much anything you could think of. Amber’s sister, Cindi, has been flying in to spend a few days each month to help out around the house and to make fun things with our kids. Our parents have also been a big help with each of them coming to stay for extended periods to lighten our load. These seemingly small acts of service have been a HUGE blessing! Anything that has been done to lighten Amber’s load is a big help. I couldn’t possibly list every one who has helped our family because there are so many.
Two individuals stand out though. Last Fall, Melanie Anderson started taking our two youngest kids in the mornings twice a week. She has helped our family before by watching our kids, but this was different. This was a regularly scheduled act of service. This was her idea. This was a way for one redhead to show love to our little redhead. She did this to allow time for Amber to feed me breakfast and shower me in the mornings. Then we hired a bath aide to help me, but she continued to take the kids to allow Amber to have to time to do other responsibilities or to simply rest. The kids would always come home happy and with some kind of “treasure” from Melanie’s treasure chest. It has been a huge help, and I am extremely grateful for her service.
The other individual started helping our family about 6 months after my diagnosis and hasn’t stopped. Initially, Cambrie Nelson would take the youngest kids one or two days a week for a few hours, or she would randomly show up with a meal and then do our dishes or clean our bathroom just to help out. She helped to coordinate meals when our family was in particular need. After about a year of helping our family, she started doing physical therapy to help me passively stretch my arms and legs three days a week. She developed a routine of stretches that she would do just to move my limbs and help prevent my joints from becoming stiff or frozen (permanently unable to move). She came every week and continued until last fall, when she started coming 5 days a week. In addition, she also took our two youngest kids one morning a week to allow time for Amber to help me, or to just be able to do whatever she needed to do. Outside of my family, she has given me more help than I could ever thank her for. I honestly believe that I don’t have more pain in my shoulders and hips because of the consistent care she has given to me and my family.
The other day I said that until there is a cure, technology is the cure. I honestly believe that! However, it has also been said that until there’s a cure, there’s care. I have also found this to be true, and I’m grateful for all of those individuals that have so lovingly given of themselves. Thank You!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #NoWhiteFlags #ItsCoolToCare
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