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Caring Isn't Easy!

4/27/2015

1 Comment

 
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What I mean by the title is, taking care of someone like me is not easy. I need twenty-four hour care. I really can't be left alone for several reasons. I am virtually paralyzed, only able to move my head and make some micro-movements with my legs and arms.  

Since my breathing is compromised, I cannot shout and I am difficult to understand.  If there were an emergency, I could not call for help or get myself out of the house.  The most frightening reason I cannot be left alone is I choke frequently on my own saliva so I need someone to use a suction device (like you have experienced at the dentist) to clear my throat. Doesn't that sound delightful?

That is not even the worst of it. The real entertainment happens in the bathroom. Oh, the bathroom, I won't even go into the details. Suffice it to say, taking care of me in the bathroom tests your resolve both physically and mentally. It's not easy!

 If that was the extent of my care it might be difficult but doable. The real challenge is the continuous nature of my care. For instance if you had to take care of someone who had a broken leg it might be hard but you know it would be short-lived. My situation has gone on for four years and only God knows how long it will continue.

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This post is for my caregivers. My wife, who oversees and coordinates all my care, works long hours all week on her business then takes care of me all weekend without conveying her exhaustion and stress to me. Russell patiently takes care of my every need five days a week. 

Beyond my caregivers, this is for all of the caregivers out there who are dealing with a similar situation. This is a message to all of you speaking as the person you are caring for. Yes, I have nominated myself as the spokesperson for everyone who needs continuous care. I am going to provide a voice for you. Think of this as a very specialized Hallmark card! 


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First of all I want to say, “Thank you!” I might not say that enough, but know that's how I feel every day. Next, you need to know that I realize this is a difficult job and not one you signed up for. Sure, you knew it was going to be challenging but you did not know the depth of the care that would be required. That is especially the case if the caregiver is a family member.  You really didn't know what was going to happen. NEWS FLASH: Neither did I!

 About the nights, I know the nights are difficult because you have to turn me every couple of hours. I know you're not well- rested yet I demand your attention all day long. I know my wife copes by telling herself that this is just another chapter in her life. She knows everything that is temporary is livable.

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You might be wondering about the hostility that I rarely, okay, sometimes, okay, always display, WHATEVER! All joking aside, please understand the anger is not directed towards you. You just happen to be the nearest victim on whom I can vent my frustration. 

Don't take it personally. I am trapped inside a body that does not want to cooperate. I remember when I could do anything, now I can do nothing, so it is frustrating! Sometimes the frustration builds and overflows resulting in a downpour of tears; it is uncontrollable.

What are you going to do? Simply put your hand on my shoulder and tell me you understand. If you want, you can cry too. I get it. I really get it!

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Finally, I know you need a break. I also know you might feel guilty about wanting to get away. Don't feel that way, it is normal to want relief. I know you need a good night's rest - correction, a few good nights of rest! 

I also know the reason you are denying yourself this needed respite is because you are worried about me. I understand and I wish I had a solution. I'm not that fragile, perhaps someone else can fill your shoes, albeit not as well, but I will survive for a few days.

Remember, even God rested after six days of work!

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I love you and I know we are on this journey together. We are in it to win it. What are we winning you might be wondering? We are showing the world how we triumph over tragedy. We show everyone that winning is a continuous state of mind not a momentary victory.     

If you are a caregiver, I am confident the person you care for would voice these same sentiments to you.  Hang in there.  You are loved and appreciated for your sacrifices.  Rest is coming

Jesus said, "Come off by yourselves; let's take a break and get a little rest." For there was constant coming and going. They didn't even have time to eat.  
Mark 6:31 The Message

1 Comment
Sue Simons
4/28/2015 01:13:55 am

As I read your current update, tears filled my eyes! I thought of how God must feel a lot like you! He created us to be in His Image and wants for us to love Him and yet all we as humans do is disrespect Him and fight against His ways that were put there to help protect us! He wants only good for us and yet we fight Him at every angle! Dear Akhil, you are an amazing person but beyond that, you are bringing out the amazing in all of those who have any association with you! May God bless you and your family as they, like you, didn't really sign up for this. Yes, Laura promised to love you in sickness and in health, but come on - who in the world would even think that "sickness" part would have come to this! And yet, there she is - loving you, caring for you! Not necessarily because you are so deserving but because her Love for God is so great that she honors her Love for God and for YOU my dear friend by honoring that vow that she took to love you in sickness! I will send my hugs to you via the internet!

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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
    ​
    God continues to show his love for us through his people.  Thank you to everyone who has reached out to us, prayed for us, visited Akhil, brought us a meal and served us however God led you to serve.  Continue to follow those urgings from God in serving those who are struggling.

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    Akhil and Laura Jhaveri

    Applying the skills they've learned in over 20 years of marriage, this couple faces the challenges of ALS together. MND or motor neuron disease is deadly with no known cure.  The Jhaveri family has to endure this battle and show the world God's love!

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