JOAN’S BLOG – MON/TUE, APRIL 4/5, 2011 – EVOLUTION IS REAL

No, I am not talking about Darwin’s theory of Evolution. I am talking about the evolution of emotions we spouses go through when dealing with the Alzheimer’s Disease of our husbands/wives/partners. We have so many new members who are struggling to understand and cope with the changes the newly diagnosed Alzheimer’s Disease has brought to their marriage. They read the advice of veteran spouses who seem far more calm and accepting than they are and wonder – Will I ever get to that point? Do I want to get to that point? How does one get there?  I can see the evolution in my own blogs – although I fought this disease’s effects on my husband and marriage until I was bloodied and scarred, I eventually learned to adjust to most of the changes. I expect to continue to struggle and evolve as the changes keep coming.

I am writing this blog to assure our newbies that the Evolution of the Alzheimer Spouse is real, and to give you a bit of an education on what to expect. First, let me set your mind at ease by validating your confusing and conflicting emotions. They are normal for this journey you have been forced to take.

As you navigate the unexpected twists, ascents, deep descents, and whirlwinds that Alzheimer’s Disease throws at you, understand that your emotions will traverse the same convoluted path. They will continually change, but when you look at the beginning, and about 5 years later, you will come to understand how you have evolved.

Much is discussed concerning the stages of Alzheimer’s Disease, but more importantly (in my opinion) are the stages you will go through. You can expect:

• DENIAL – You may dismiss early symptoms as stress, normal aging – ANYTHING but the dreaded Alzheimer’s Disease.

• SHOCK – When my husband was first diagnosed, I looked at the doctor and sputtered. Nothing coherent came out of my mouth. When I was finally able to speak, I kept repeating, “But the other doctor said it wasn’t.”

• FEAR – This kicks in as soon as the shock wears off.  During this stage, my greatest fear was that I might have to live apart from the husband I had loved for over 3 decades. I could not imagine how I could survive if he were in a nursing home. I feared him forgetting me. Your fears may be similar to mine; you may have others, but you will have them.

• EDUCATION – The best way to combat fear is with education, so most of us immerse ourselves in books, seminars, conferences, support groups, Internet research – anything to learn about the disease and what to expect.

• FIGHT – All the education in the world will not stop you from fighting what the disease is doing to your spouse and your relationship. I nominate myself for the ‘black belt’ of Alzheimer fighters. When I joined my support group, I expected them to teach me how to put my husband and relationship back to the way they were. I fought his irrationality; I fought his personality changes; I fought his memory loss. I wanted my husband and my marriage back, and I fought for it until it almost literally killed me.

• ADJUST – Eventually your choice is adjust or die. You will have a stroke, heart attack, or something equally ominous if you do not stop fighting and adjust to the changes. You will HATE it, but you have no choice. Alzheimer’s Disease is going to advance. You cannot stop it, but you CAN live through it. It will not happen all at once. I continue to adjust in increments. When a change occurs, I still fight it, although nowhere near as long as I used to, and then I adjust to it.

• ACCEPT – When speaking of caregiver stages, most people do not list “adjustment”. They go right to “acceptance”. Being the stubborn fighter that I am, I prefer the term “adjust” to “accept”. I will NEVER accept the loss of the best, most secure, loving, trusting, passionate relationship I could ever have dreamed of having. I will never “accept” the loss of ‘US’. But I have and will continue to adjust to it. And you will too, although in the beginning, it seems as if it will never happen. 

I hope it has been helpful for the newbies who are struggling with the beginning of their journey to understand the evolution they will go through. Maybe it will also give our veterans a different perspective on the trials they have faced and will face in the future.

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