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Expert Blog

Who Deserves This?

July 24, 2015

I love my husband. Right? I mean, we’ve been married for 18 years. We have two magical children. We are both good people. I must love him….he has been so accepting and caring for me. He has forgiven my shortcomings and still thought me beautiful.

Yet, I struggle daily to remember the love. The pure love. The kind that makes you catch your breath and rush home just to be in the same room. We had that once, didn’t we?

Yes, we did.

It is so easy to forget our love when I am bombarded daily with trying to make sure he has brushed his teeth and taken his medication and has his clothes on correctly. I sit and ponder how I am going to pay for his care and how his decline with Younger Onset Alzheimer’s Disease will affect our children and if it will stain their childhood or bring them an understanding and maturity few will ever achieve.

How can I see the man who swept me off my feet with love and happiness through the façade of the man who I struggle just to understand? How can I focus on taking care of Jim and loving him as he is today and will be tomorrow if I am constantly worried about the cost of care, the price our children are paying, and the toll all of this will take on each of us, individually and collectively?

There are times I am overcome with gratitude at the closeness and bond that has formed between the kids and I. Then, I understand how and why that bond has formed and it saddens me. And I suddenly feel as if my pleasure with this closeness with them is somehow a betrayal of the unattachment Jim now seems to have for them. Which wasn’t the case just a few short years ago.

The constant bittersweetness in various facets of our lives is not lost on me. I can appreciate the wonderful opportunities, friendships, growth and formed bonds his malady affords me. Yet, the cost he is paying is the ultimate one, and I can hardly fathom how he is able to have such grace and composure under such circumstances.

How can our universe be so cruel? What is the point? Why would someone who has been such a good citizen of this world have to face such a torturous demise?

That is just it. Jim is dying. Dying. I talk about it. I write about it. I think about it. The thought of his death is a permanent resident in my mind. I have mourned him many times over. Yet, when I think of him actually being gone, not just mentally, but physically, gone from this earth that we share, I am devastated all over again. As if the thought has just occurred to me for the first time. As if we haven’t been preparing for this for years. I become aware of the impending doom and the permanence his death will have on all of us. Not just witnessing the slow death that is complete torture. Not just wishing he would suddenly die quickly, in his sleep, with no pain, so he wouldn’t have to go through this agony any more. But to think about his disappearance completely from our lives… takes my breath away with the same force he once took it away when he called or touched me or smiled at me.

It is so rare I am able to focus on HIM. His side of all of this. I am so focused on his care, bills, the kids, the chores, what’s for dinner, what is next on the schedule. He deserves so much more. He deserves to have someone who can be patient and kind and loving to him 24/7, without distractions of everyday life. But how often do we really get what we deserve? I know he certainly isn’t getting it.

Thoughts and stories from others

  1. August 11, 2015 at 12:14 pm
    Posted by Mary

    I just became caregiver for my husband as he has finally come home after 6 months in hospitals recovering from 2 broken hips due to stroke and Alzheimers, dementia, delirium due to pain meds. I feel love for him and also some guilt when I get angry and frustrated with his anger and frustration. Reading about other caregivers and their days and nights help me to feel "normal" and gives me the strength I need to meet each day. God Bless all the caregivers in the world and all the patients who are being cared for. xxoo
  2. August 10, 2015 at 03:36 pm
    Posted by Marcy

    It helps to read of others thoughts. I was not going to write anything but just today I had some of the same thoughts that have been written here. My husband also has lung cancer. But he tells me it is nothing. I thought today how am i going to do this as he gets worse. What if I go before him. I hope not because than the kids will need to take care of him. And they would. We are both 80.but then I told myself that I can do this with the Lords help.He will give me strength. May God Bless each of you that have a loved one with this terrible disease.

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