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Expert Blog

I am Silent

April 30, 2015

Being a caregiver at such a young age seems to draw a lot of sympathy. I understand this phenomenon, but I am not really all that crazy about it. Even though I have become entrenched in learning every facet there is about letting go of someone as they live and breathe in front of you, I don’t feel the need for sympathy. Or help. Or any adjective that describes feelings of weakness and need.

But the truth is; I am in a battle for my life and for my children’s lives and for Jim’s life. Well, I guess it really isn’t for Jim’s life, now is it? I am programed to say that. But the reality is I can’t help him. I can help him with his clothes and make sure he eats and gets a shower and I can include him in as much as possible, but I can’t HELP him. I can’t cure him and I can’t make him better. I can only watch from the sidelines as his memory fades, his body grows leaner, his shoulders slump and his communication falters. I can only love him and make him feel safe and understood (even if we don’t really understand what it is he is trying to say).

As a mom, I must put the children first. As a wife, I want to put Jim first. As a woman, I am inclined to think I can do both and somehow come out of all of this unscathed.

I am so eternally thankful to my parents for somehow raising me to be such a strong person. I know I am only able to withstand the daily torture of watching Jim decline because of my inner strength. There is nothing pretty about this journey. Yes, I can find happy moments and ways to celebrate joyous occasions, but when you get down to it, there is not much to be elated about. I am not happy about having to help him with personal hygiene before our twentieth wedding anniversary.

I am not pleased about the fact he barely acknowledges anyone, let alone have a conversation that includes some form of connection. I regret the times I yelled, but they seem to be in the past and all seems to have been forgotten. The real question still remains: can I forgive myself?

We have moved on to so much more and therefore, I am immersed in learning to think about his needs before making any plans. Who will watch him? Can he stay alone? Has he brushed his teeth? Did he wear that yesterday? Is he drinking enough water? Where is he? Can he still walk the dog? Can he fix his own lunch? Will he remember to tell the kids goodnight before going to bed?

Letting the little things go. So not my forté, yet so my normal now. It is amazing what you can do when you have no other choice. I have learned that those who criticize really have not been in that situation before. Maybe they have been a caregiver, but have they lived with the one they took care of? Did they have young children at home at the same time? Were they able to hire help? There are always so many facets of each situation in this world…

So I have come to realize that while this whole situation with Jim has caused me the most heartache and stress I have ever endured, it has also taught me so many life lessons and has changed who I am. I can’t say I will never be the same, but I can say that my priorities, my thought process, my dignity, my empathy, and my strength are unparalleled before and after.

I am a changed woman…for the better? I hope so. With more resolve and self awareness? Without a doubt. My identification of being a spouse and caregiver and mom and woman have evolved into something that seems to change daily as Jim changes. Where I end up, I do no know yet, but I am resolved to survive this journey and make it through to the other side.

There are times I doubt myself, but I am forced to dig deep, to take a gut check and remember all the others who have travelled this road before me and done a better job and come out with less wear and tear. I draw inspiration and resolve from others who have accomplished more than I seem to be able. I am indebted to their drive and their determination to pave the way for the rest of us.

Thank you. Thank you for giving the rest of us someone to look to for inspiration and to help set the course for our successes. Without you, I am nothing. I am lost. I am silent.

Thoughts and stories from others

  1. May 4, 2015 at 08:13 pm
    Posted by Daphne demaine

    Thank you for sharing. I'm caring for my husband and fighting a losing battle trying to hold down a very demanding full-time job. Our children are still young, with our youngest being 8 & very busy! We have a new grand daughter that I find very little time to spend time with. Your comments are inspiring & hopefully will help to keep me sane.

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