My Facade…

This is me attending a recent work event. Don't I look like I have no care in the world?

This is me attending a recent work event. Don’t I look like I have no care in the world?

I am a facade. Standing in front of the world with my hair curled, makeup on and put together outfit. I look like a woman with a career. A woman with the perfect life. I can see it sometimes…how envious those that don’t know are of me. How ironic. But I am a liar. It is a farce to everyone I meet….

I feel I am constantly on the verge of a nervous breakdown. I am one tiny slip up away from letting it all crumble down around me. I am one brick removed away from my protective wall from running into a dark forest and never returning.

I am not who I purport to be in my work get-up and my strong presence in meetings and networking events and school events and gatherings of any kind. I seem so together and strong and unbreakable. It is funny how putting on the right outfit, sliding on the right bracelet and earrings and necklace and heels can almost make it seem as if you don’t have this second life you are surrounded by. It is so surreal; as I am being one person, I can feel the other person that is desperate and scared and lonely watching and shaking her head in amazement.

I am not just one person. I am not really two people. I am multiple people. I am the Karen that shows up for work each day, trying desperately to keep her job.

I am Mom. (and that my friends entails a whole other list of who I am)  I am a researcher for new drugs, clinical trials and articles for Jim. I am an advocate for more research funding and awareness. I am a friend. I am a neighbor. I am a softball and baseball Mom (this is different than just being a Mom). I am a daughter. I am a sister. I am an aunt. I am a housekeeper, cook, accountant, decision maker, fundraiser, jogger, schedule keeper and blogger. I know many of you assume these roles on a daily basis. Some of you may be single parents and you are just shaking your head at me. Silly girl. You ain’t seen nothing yet…..

I know. I know and what can I do?

Yesterday we were driving to my nephew’s high school graduation. There was a storm blowing through and it would have been so easy to just not go.It was a 4 hour drive to my parents and then another hour to the ceremony. No one would blame us for not showing up, right?

I don’t want to be that person. I don’t want to be the person that takes any excuse to get out of something that might be a little demanding or a little extra effort. I have an awesome nephew and I am glad we were there to help him celebrate such a momentous occasion. I have every hope and desire to keep that commitment to other things that are important in my life. But I have noticed as Jim progresses, my list of things that are important seem to change. Almost daily.

As I was driving down, I looked over at Jim for the first time. We had been busy packing and getting things in order before leaving and I hadn’t REALLY looked at him. So, I looked over and noticed that he hadn’t shaved. Hmmmm. Please remember, Senior Master Sergeant in the Air Force……

“Jim, did you shave this morning?”

“Yes.”

“Hmmmm. Ok.”

Then I look again and I see that he has shaven. But he has missed most of his chin and parts above his lip and most of one side. My heart breaks. I have read enough articles. I know what is coming. I know one day I will have to shave for him. I know I will have to put the toothpaste on his toothbrush and I will have to dress him and bathe him.

Looking over and seeing his sporadically shaven face reminded me of what is to come. On our way to such a joyous, exciting occasion, I am forced to remember what is really going on. There it is.

So many come up to me and tell me how good Jim looks. I don’t think so. I think he has aged exponentially. He has lost weight and doesn’t look like MY JIM.

Alzheimer’s doesn’t affect your physical presence for quite a while. It only messes up the mind. So, someone can look “normal” and at the same time be anything but.

So, I think I look normal but inside I am falling apart. The same for Jim. He looks like a guy in shape and ready to take on the world. If he could only figure out where his glasses are to read that book that he put somewhere…

 

posted by Karen in Uncategorized and have Comments (11)

11 Responses to “My Facade…”

  1. diana hull says:

    I so agree. I would go down my basement and have my mini nervous breakdown while I was doing laundry. Straighten myself up then go back and pose as everything was ok. I didn’t want Ron to see me upset. My heart is with you.

  2. Angela says:

    I felt the same as you about my husband. As more time goes by, the faster new symptoms appear. You will have to watch for wandering and behavioral changes which may be aggressive like it was in my case with my husband that led to his death in a short rapidly progressive disease. From the start to the end, it was only 3 years. He passed away last week.

  3. Deborah says:

    This is so heart-breaking to read. On the plus side, I don’t have a husband in my life who would be caring for me, so there is one heartbreak saved. On the minus side, I think of my son and his wife, and my brother and sister, who are all going to be stuck caring for me, and it just hurts my heart to think I will be a burden to the people I love the most. I just pray that if it happens, I will be sweet to them and leave them with happy memories of me.

  4. Lee Ann says:

    If you remember, I had a husband that came down with a severe mental illness when he was in his early 30s. I can remember going into the bathroom and just sobbing and screeching. And what was worse? He couldn’t get together enough to actually walk down the hall to comfort me. I don’t know if he paid any attention, but I was quite loud. When he was entering the mental hospital for the 5th time in that 5 years, his therapist asked me “How long do you think you can do this?” “About as long as I have to.” I eventually moved him to an apartment in the city, where he lived close to his therapies (he was on a medical probation and ordered to see these therapist weekly). He had been upsetting the entire family day after day, and I couldn’t sacrifice the rest of us for his mental illness.
    The first time he shaves his head, you’ll know its time to help him. But you need to remember that its very unlikely you can keep him home until the end. There are wonderful places for the people with dementia. Then you can still be the wife , instead of the nurse. You’re doing very well. And I know well about the facade. You have many steps to walk before you are done.

  5. Amy says:

    Karen, you are allowed to have mini breakdowns, and your façade is perfectly normal. People looked at me, with my handsome airline pilot husband, and would remark, “You can just feel the love between you.” I learned early on that Routine was important, but while I tried to carry on with the status quo, holidays & bdays w/ family, BBQ’s for neighbors, parties, concerts, movies, etc., it was VERY uncomfortable for my husband. He was uncomfortable w/ his inability to communicate intelligently, easily agitated by overstimulation & all the chatter, and more than once I would find him in our walk-in closet, curled up in the fetal position, sound asleep. I guess what I am trying to say is…continue to be yourself, but embrace the changes you and your husband and family are going through, and be willing to say “enough is enough” and stop putting yourself thru so much stress. People will be more than understanding, esp. when plans change because Jim is just having “one of those days”… I spent 10 years giving of myself and giving up things for my husband’s sake, and finally succumbed to other’s admonishments to care for myself. You have to care for yourself because if you become ill or incapacitated, who will care for your children? There are many options to help you with caring for Jim in your home, as well as for respite care for your sanity. Now that my husband is in a small 8 people residential care home 10 min. from our home, I can again be his wife, the fun gal that brings him strawberries, smoothies, and takes him out for sushi now and then. Just take care of yourself…mentally, physically, spiritually. You may have been his model wife, but once Alz. breaks into the mix, there is no way (or need!) to try to be superwoman! Hang in there!

  6. ((Karen)), my heart and prayers go out to you and your family. I follow your blog and my heart breaks with each post I read. I wish we were friends so I could help you in some way. Just know there are people who are holding you up in prayer. Just wish I could do more.

  7. rona altschuler says:

    Thank you for letting us know your pain. You are real and what you are going through is real. I am here to listen and care. Call on me for help or go for a run.

  8. Diane Chadwick says:

    I know your pain…my mom has AD and just recently my dad (her 24/7 caregiver) was hospitalized over 3 weeks ago. My sister & I are now the caregivers, dad will never be able to care for her again. I chuckled about putting toothpaste on his toothbrush…..we have to do that for mom. I caught her trying to put the pump style hand soap on her toothbrush. She said she used that but it tasted bad. You have to laugh to keep from crying. Blessing to you and your family.

  9. Michelle Fox says:

    Karen, have you ever thought of moving closer to family? I really feel that you need their help and support. I hate to see you falling into this deep, dark despair. You just can’t seem to kick it and that is not a defeat, it is just reality. You need help. Unfortunarely, Jim is going to decline and you have to plan for the future. Best to do it now while he is still functioning as well as he is. My heart hurts for you. I so wish I could help, be there for you, somebody needs to be hon, so you stay healthy for your babes. God Bless….

  10. Joanne says:

    I too feel like a facade — if only people knew how sad and fragile I am on the inside as I slowly lose my mother to dementia. As time goes on and the disease progresses, things will fall away. Let them, but keep what’s important. Keep what gives you energy rather than takes it away. Do what feels good and what fills your cup — everything else is extra right now. Friends will understand.

  11. Pamela says:

    Thank you for your blog and your honest writing. I’m sending this link to a good friend whose husband was diagnosed with early onset Alzheimer three years ago. Your honest and truthful writing will help her – and many others.

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