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Expert Blog

Sink or Soar

March 19, 2015

Dealing with a husband with Alzheimer’s Disease has got to be the most difficult process of my life. It isn’t something that happens and then we move on, somehow, trudging ahead and working on letting go of the pain and the sadness.

With this torturous affair, it drags out, for us we are going into our sixth year now. Six years of worry. Six years of waiting and watching. Six years of reading articles and searching in vain for something to help. Six years of planning for death.

Death. Always somewhere in my mind, in my thought process. There is constantly death looming over me, over us, over our family and friends.

There are two ways I am dealing with our situation: at times I am an emotional blob. A mess. Erratic, unpredictable and unable to function at a normal pace or with a normal process of functionality. Fortunately, this happens less and less frequently.

The rest of the time, I am focused and force myself to remain “normal” for the sake of survival. I live each day as if I am a mom of two kids and a wife of someone who needs help. I deal with everything that comes our way to the best of my ability.

To do this last bit, I cannot remain in the state of option number one long. I must find a way out of whatever fog I am in at that point and tackle whatever crisis is at hand. I often hear comments such as, “I don’t know how you do it.” “You are amazing.” “You are a hero.” “You inspire me.” As grateful as I am for such accolades and acknowledgment, I am not sure they are deserved.

So many people struggle as single parents and are dealing with some sort of predicament that forces them to rise to the occasion. I am just one of many, and I am definitely not doing anything extraordinary. I am doing what I agreed to do the day I had a child: protect them, nurture them, love them, and help them become the best person they can be. That is what sustains me and what allows me to move forward.

Yes, having two children at home while Jim declines adds a certain sorrow factor to our story. But let me be clear and make no mistake: our children are what save me every day from wallowing in self-pity. They force me to get out of bed and focus on something other than myself. My life would look so dreary without the need to take care of them. So while their care is more for me to take on during this juncture, they are also part of the process of salvation for my soul.

Jim and I had many conversations early on after his diagnosis and he made it perfectly clear that the children would always come first. Whatever we needed to do, do it. He trusts me to work hard to make a difference. He trusts me to take care of him and the kids. He trusts that I will take care of myself along the way. He married me and stayed with me because he knew I was a strong woman.

Strength comes in many forms and fashions. I have learned through this journey that caregivers of dementia patients are some of the strongest people on the face of this earth. There is nothing that tests a person’s resolve like watching someone they love succumb in tiny steps each day to a disease that turns them into a perfect stranger.

With no conversation or emotional support to solidify the sacrifices and the loneliness and the heartache and the pain and the sadness a caregiver goes through each day…it is one thing to remain a good spouse when you have a partner who thanks you and shows appreciation, love, and acknowledgment. But to continue to be the same, if not an even more caring and supportive partner, when there is no reciprocation—that is strength, my friends. That is resolve, and that is something a weak person could not do. That takes guts and determination…without any glory. Every caregiver is a hero. Every caregiver deserves accolades and awards and support and a helping hand. It is a burden that can either sink you or help you soar with eagles. Which are you doing?

Thoughts and stories from others

  1. April 19, 2015 at 11:36 am
    Posted by Jeri Moss

    Jane, I totally agree that not having our husband's at home presents new things to deal with. I get calls from the care home on a regular basis telling me of some issue they are having.........they keep me informed for sure......which is good, but at the same time.....hard to hear about at times.
  2. April 12, 2015 at 07:43 pm
    Posted by Jane Allen

    Karen, I read every word of every blog you post and identify with so much of it. It is extremely helpful to read the exact things I am feeling but can't (and don't dare) put into words. My husband who also has early onset dementia has been in long-term care now going on 3 years; the decision to move him there was heart wrenching but unavoidable. It relieved alot of stress for all involved--him, me and our two kids-- but at the same time presented a whole new situation and environment which is also a struggle to deal with. Thank you so much for sharing

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