Ego anyone- My Beautiful Messy Self

Jim and I, circa 1998.

Jim and I, circa 1998.

There is a selfish and seldom discussed side of being an Alzheimer’s caregiver that is rarely examined. But, this blog is a “confessional” so I am going to try to put into words something that is extremely difficult to convey accurately through writing. I believe this is something that you really can’t understand, comprehend or feel unless you are living this life. Especially Younger Onset Alzheimer’s.

Along the way you lose the person who has stood beside you and made you feel good about yourself. I don’t just mean a compliment thrown out every now and again. I mean that one person who always thinks you are beautiful, even when you are not and understands you just need to be held and shielded from whatever horrible thing your world is throwing at you right at that moment. They would be who you would normally seek shelter with in the circumstances they are forcing you to face.

I have been trying to write this piece for a while. I was walking home from dinner the other night with a good friend and I was explaining to her I was trying to choose the right words and it was perplexing me to be able to get it just right. She agreed with how touchy a subject this can be, but also threw out to me, “but any lengthy marriage has the same issues. How can you make it stand out from a typical problem in any relationship?”

She was right. Don’t we all fall into cycles and get complacent with each other at some point?

I turned to her and said, ”Doesn’t Shawn still tell you how nice you look when you get dolled up?”

“Yes.”

My sexy black dress, Feb. 2014

My sexy black dress, Feb. 2014

Well, Jim doesn’t. Recently, I was invited to attend a gala. I took a girlfriend of mine as my date and put on a sexy black lace dress. Got my hair done. Put on a little extra mascara and even a little eyeliner. It wasn’t until she and I were standing in line for a drink that she leaned over and whispered to me how beautiful I looked. I literally (no exaggeration) caught my breath. Not because I was surprised she told me this, but because in that moment, I realized Jim hadn’t.

I think what I wish to convey is not only how lonely it is as a caregiving spouse, but how it affects your own vanity. Not that I have ever considered myself a particularly vain person, I leave the house more often without makeup than with and just have a lot of confidence in myself regardless (I think all athletes have this trait. After all, you have to believe in yourself if you are going to be able to make that free throw with no time left on the clock.) But I have come to realize just recently how much I relied on the compliments and consistent underlying belief in me from Jim.

Now that those are no longer, how am I to know if I am looking good or not? Who is supposed to remind me that I am capable and I am smart and I am still beautiful with those unflattering pants on?

How egocentric of me to ponder the loss of praises when Jim is losing so much more and our children are losing so much more and I am losing so much more. The plain and simple fact is I am human. We are all human. Even in the midst of large catastrophes there are small stories of pain, heartache and even joy and blessings.

Jim was by no means a perfect husband, but he definitely had many redeeming qualities that made me a very lucky bride. One of the best was his support of me, no matter what crazy idea I had or organization I was becoming involved with, Jim became involved too and would always lend a hand, an ear or just silently stood by at the ready. Jim never shortchanged me with compliments and letting me know how much I meant to him. I know I still do and I know he still finds me attractive, but it really sucks not hearing it any more.

During our whole relationship, every time I would speak to Jim on the phone, he would tell me he loved me before hanging up. That is very sweet and I always appreciated this, but you know how a conversation goes. You think you are going to hang up, you say your good byes, your “I love you’s” and then remember something else you were going to say. So you have a few more minutes of conversation, only to have to go through the good bye’s and “I love you’s” again. After a while and after A LOT of repeated “I love you’s”, I was annoyed. Annoyed that our “I love you’s” were becoming so mundane and said without much meaning behind the words. I began to resent the monotonous sound of those words each and every time we would speak by phone, which at times could be five or six times a day. I certainly didn’t feel a lot of love each time they were said. It was more of a habitual ritual that has disappeared. Now, Jim tells me he loves me every week or so. There are so few of them, I wonder if I had known that one day Jim would stop telling me he loved me would I have cherished hearing them as much?

Isn’t one of the reasons a woman gets married because she always wants someone there to make her feel beautiful, desired and loved? Isn’t it part of the deal that when a spouse gets cleaned up and dressed up you tell them how nice they look and possibly even flirt a little? When you have a partner for life, don’t you expect to have arms to wrap around you to feel protected and guarded from the rest of the world?

I miss that. I miss getting fancied up and having Jim take notice. I miss feeling that someone had my back, no matter what.

This is such a lonely journey on so many levels and there are times that being surrounded by good friends helps. There are times that being hugged and snuggling with the kids helps. But I am a woman of 44. We have been dealing with this for 5 years now. Only recently has it started to bother me that I don’t have my own personal cheerleader anymore. I miss the hugs and comfort from my husband. I miss his ability to tell me that a dress does not look flattering on me or that I look amazing. Either way, knowing he was going to tell me the truth and was my own personal judge and jury is a loss I feel on top of all the other emotions I run through each day.

When I look in the mirror now, I see an aging woman. I see gray hairs that were never there a year ago. I see deep wrinkles underneath discolored skin. I see sadness and loneliness and a bit of regret. I see a body that is losing tone due to lack of exercise. I see arms that are getting flabby and thighs that are spreading. There was a time in my life that my husband would be able to reassure me I was still beautiful and still sexy and still worthy. Now he doesn’t notice if I change my hair or I have on a new outfit. He doesn’t seem to care and he doesn’t seem interested.

I miss that emotionally supportive side of Jim. Compliments on the dinner I have fixed. Doors held open. Noticing I have a cold or don’t seem myself. Telling me how beautiful I am, no matter what I am wearing or how good I actually do look at that particular moment.  Making me feel loved and desired even though I haven’t worked out much lately and when I look in the mirror I see an aging person with places getting softer and wider. A caregiver is known to be strong; we have to be. But there are ways we must become independent and self sufficient that aren’t discussed and seem trivial compared to the daunting tasks of financial decisions, housework, and overwhelming burdens of family life. I must now be able to tell myself that meal was indeed delicious and hold my own doors and believe myself to be beautiful without hearing those words said. Yes, I am becoming stronger and more independent than I ever thought possible, but I am not sure the trade off is worth the pain and loss.

 

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

I don’t wanna

Brad, Frances and me. May 2013.

Brad, Frances and me. May 2013.

I am tired of this shitty, sad life. And we are just in the beginning stages. Nooooo. I don’t want to do this. (Yes, I realize this sounds like a 3 year old. Right now,that is how I feel.)

I sometimes take a few moments to read “our story”. To go back and re- read my entries or read interviews and stories written about us. Damn. Our story is touching, jarring, sad and REAL. Actually, surreal. To live something and then to read about it is just so surreal.

I don’t want to be REAL. I mention “I don’t want to” a lot.  I don’t want to do this. I don’t want to feel so defenseless. I don’t want to speak. I don’t want to cry. I don’t want to yell. I don’t want to hold. I don’t want to watch. I don’t want to be defined by something I have no control over.

How to release yourself from an agony that is worse than prison? At least prison has a definite end date. How to protect someone you care so deeply about from a future of embarrassing moments? Moments they might not even realize are embarrassing?

What do you do to help someone that took so much pride in their dress and demeanor when they are no longer able to look put together on their own?

NO. I don’t want to do this. But I don’t have a choice. I feel trapped. Trapped in a time warp that I have no control over. No control over my own life for how many years to come?  No control over our families’ future or my future. No control over my childrens’ childhood.

I didn’t sign up for this; yet I am forced to partake and to make the best of it. What could be the best of it? I can’t see past the negative connotations at this point. I am hoping one day I can look back and find something positive.

Something positive for my children in watching their father become a person they can’t possibly understand or recognize.

Something positive for me being left alone to navigate mid -life and beyond.

Something positive in wanting to change an outcome that you see coming and falling terribly short.

Will I feel positive about writing this blog, speaking to groups, doing interviews and sharing our story with the world? Will I feel I made a difference in something? to somebody?

How to stay positive when all I want to do is run away and let someone else deal with this huge mess? This huge debacle that I don’t want to define me as a person. My children deserve more than to witness the slow demise of the person that personifies character to them. NO. I don’t want to participate in this unyielding tragedy.

But, I wasn’t given a choice. I wasn’t consulted and given an out. There was no picking what is behind door number 1, 2 or 3.  I had an out several years ago when Jim and I went to marriage counseling. He was driving me crazy. We were arguing a lot. I could have left. He could have left. We stayed.  I realized what he had before the doctors did. I could have bolted then and used the excuse “I didn’t know. I left before he was diagnosed.”  But I did know. Thankfully my parents raised me to take the high road, not the easy road. I am better than that. Being better than that really isn’t all it is cracked up to be in day to day life.

I am lonely. I am scared. I am frustrated. I am tired. I am helpless. I am….. so many things. Yet I can’t figure out that magic fix. That magic carrot dangling in front of me that allows me to figure out what to do to make this easier or better. Maybe there isn’t a carrot. Maybe it is just going to completely suck for the foreseeable future. How do you wake up each day with this thought and put a smile on your face and put your best foot forward?

It is the kids are the closest thing to a carrot I have. They give me the ability to get out of bed each morning and work all day and do it again the next day and the next.  They keep me focused on many things much more important than my own personal issues. They are losing something that can never be replaced. They are witness to their own childhood drama story to tell at neighborhood socials and gatherings with friends and colleagues. How this all plays out will define them as adults. How I help them and manage this situation will determine how their story will be told over cocktails, barbeques and in counseling sessions.

How I handle all of this will define me as a mom, a wife, an advocate; as a person.

No pressure. No pressure at all.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)