From Wife To Caretaker

After my husband's brain surgery in June 2017, he was doing great for the few months post surgery. He was working out, driving, walking Asher, and teaching his wrestling class up until November, even while doing chemotherapy.

In December he came down with the flu, and that's when things took a turn for the worse. He was admitted to the hospital for 5 days, and then it took him weeks to get over the flu. Since then, he is no longer able to walk and needs 24/7 care. He is always tired, so tired. The doctors think the reason for this is a combination of the parkinsonism progressing, as well as the brain tumor.

For the past few weeks, he has been having a physical therapist come to the house, but they felt limited in what they could do, so they suggested admitting him Frazier Rehab for inpatient therapy. He stayed there for two weeks and was just discharged Tuesday. Everyone was great there, but I didn't see as much progress as I had hoped for. At this point, he is most likely not going to be walking again unless God works a miracle.

With the help of my in-laws who are living with us, I am now my husband's caretaker. My days consist of getting him up in the morning, getting him dressed, helping him brush his teeth, cook and feed him his food, and help him to the bathroom. I then usually try to squeeze in a meal for myself, go to work for a few hours and try to get in a workout in, and then I come home and repeat the process in the evening: help him eat, undress, use the bathroom, brush teeth, etc.

It's taken some time to get used to this new "norm", the norm of being more his caretaker than his wife. It has been hard watching my husband deteriorate, watching him go from being strong, athletic, and fit to barely being able to sit up in bed or even lift up his hand. But I know it's even harder on him. He is dependant on me and his parents for almost everything, and I know that has got to be super frustrating. I hate seeing him go through this, and I wish I could just take it all away from him. I worry about his mindset, and I just hope and pray that he is not miserable and that he has joy.

I will admit, I do miss "us" sometimes. I miss the life we used to have. I miss going out to dinner or just walking through the park. I miss our rides in the Jeep and our walks with Asher. I miss laying on the couch and watching TV with him for more than 10 minutes without having to do something for him. I miss just being his wife and his friend...

But... I try not to focus on what we no longer have and instead be thankful for what we DO have. I'm thankful that he is still here with me. I'm thankful that I am able to be here for him and care for him. I'm thankful for the help that I have from his parents. I'm thankful that God has prepared me for this very moment in time, both physically and mentally. I'm thankful for Jesus and His grace.

Most days are good, but I do have my bad days. I have days where I am just exhausted from lack of sleep and from going non-stop. I have days where I get impatient and irritable and when I can't control my emotions...and on those days, I feel like a total failure.  I constantly feel rushed, like there isn't enough time in the day, and I feel guilty if I have to leave him for too long. Some days I feel like I don't even have a second to myself, to just breathe. I squeeze in workouts when I can, but I feel like I have to speed through those, too. Taking a trip the grocery store is now like a mini vacation. I rarely get a night of uninterrupted sleep anymore.

I don't want to sound like I'm ungrateful or that I'm complaining or feeling sorry for myself-I just want to share with you all the reality of being a caretaker. I never realized how hard it is. I have so much respect for caretakers and even just people with kids! It's hard work. I know people say you have to take care of yourself and all that, and I do try to take time for myself to recharge when I can... but those times are few and far between. I want to be here as much as I can if he needs me, and I want to spend as much time with him as I can, but at the same time, there are times when I feel like I have to just get away....

I guess one of the good things about staying busy is that I don't have as much time to think about the future...or envision one without him. As I've said since the beginning, I try my best to just live in the moment and take it one day at a time. I want to cherish the time that I have with my husband, because I don't know how much longer we have. Each day, I have to rely on God's grace and strength to get me through, because I definitely don't have the strength to this on my own.


Comments

  1. I have been following you for a few years now... your story is incredible. My heart goes out to you, your husband and your entire family. Take care.

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  2. You are so strong in so many ways, but I know being strong isn't easy. Keep your focus on Jesus and keep hanging in there. Jesus demonstrated true and selfless service to others and that's exactly what you are doing right now. You are serving as Christ in the flesh to your husband. I will be praying for a miracle for Matt and praying that you can find rejuvenation and refreshment in small everyday moments and the energy and strength to keep going one day at a time. I cannot imagine what you are going through, and I don't want to come off as though I do. I just want to encourage you as a sister in Christ and let you know I will be praying for you. Thanks for being open about your challenges and struggles as well as your victories and successes. I appreciate you and admire your faith, determination, resilience, and strength. ((Hugs))

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  3. I haven't checked in on your blog in a while...I am a runner so my interest is mostly your Christian perspective. It's always encouraging. I am so sorry to hear how things are progressing for Matt, and you. As I read I could feel the saddness. We live in a broken, fallen world, things happen we don't understand. I turn to Jesus..His words "in this world you will have trouble, but be of good cheer: I have overcome the world" Jn 16:33. Ultimately our final hope is looking to the time when "all things will be restored". It seems that time is not to far off. God's blessings. Hope and prayers as often as you and Matt cross my mind.

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  4. You are amazing and are sustaining such a great attitude, realism and strength. I am so sorry Matt is not doing well. I love following you and will keep you both in my thoughts.

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