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Let’s face it – we all married our spouses for particular REASONS. We didn’t just spin a wheel with names on it and choose one. We chose them for their special characteristics that we loved. In that person we chose as a life partner; maybe we saw strength, humor, intelligence, warmth, and kindness. Maybe you liked the rebel, the outsider, the wild one. It doesn’t matter. You had reasons for your choice.

But what happens when the person you married no longer exhibits those characteristics? At this point, I am not talking about the later stages of the disease when your spouse no longer recognizes you. I am talking about the early stages when they actually appear “normal” to the outside world, and can, with your notes, reminders, and guidance, still function. But they are slowly losing the characteristics you fell in love with. What happens when you look across the breakfast table at a stranger? You are no longer eating with your husband/wife, your partner, the person you chose because they were ambitious, intelligent, sexy, fun to be with, kind and supportive. In their place is a whiny, special needs child, who cannot function unless you write down what they need to do for the day in detail, one step at a time. If they were outgoing and friendly, maybe now they are withdrawn and quiet. Or if they were the strong, silent type, maybe now they are prone to unpredictable public outbursts. If they were loving and supportive, maybe now they appear distant and uncaring, wrapped up in their own obsessions. What good is conversation?  Tomorrow they will remember none of what you discussed today.

The person you fell in love with and married is disappearing. Ambition replaced by lethargy; humor replaced by anxiety and anger; intelligence replaced by cognition so slow and so impaired that they cannot follow a conversation; a memory so wrecked that they cannot remember what you said to them  five minutes ago. Control replaced by verbal impulsiveness so unexpected and random that you hold your breath in the presence of others, praying they won’t blurt out something offensive and inappropriate. Furtive, knowing, private, sexual glances replaced by eye and hand signals to stop talking- you’ve told that story to these people twice before; stop rambling- there is an end to a story.

They are losing the characteristics you loved, and you are coming to the horrifying realization that you do not like the person who took your loved one’s place; you are coming to the realization that the relationship you had is gone. Although my husband is not yet as advanced as some of the above descriptions, our relationship has been forever altered. I tried for so long to make things be the way they were, to recapture the “team” we had been for so many years. The man with whom I had shared so many memories and future dreams was disappearing. The man with whom I laughed, cried, and leaned on when I was down, whom I held up when he was down, the man who was truly the “other half” of our team was disappearing.

Then the pain comes; then the sadness; then the acceptance. My advice to all of you is to accept the pain and sadness – it is real, and it hurts like Hell, but if you don’t let yourself feel it and acknowledge it, you will never be able to move on. Have I moved on? I don’t know. I guess so – I’ll never stop feeling sad over what I lost, but what my good friends in my support group made me realize is that we need to focus on what we still have rather than what we have lost.  



What I still have:

  1. Understanding - With careful, slow, step by step explanation, my husband is able to understand my feelings. We have been able to acknowledge together that our relationship is different - he knows he is different, and how hard it is for me to have to do all the thinking, planning, organizing; he knows that I, too, am different. My role has morphed into mother and therapist, and he is able to verbalize that he feels I treat him like a child, and he hates it. I really try not to, but I guess it doesn’t appear that way to him, and he’s probably correct in some instances. I’m working to change it.
  1. Respect - We try to respect and change what bothers each other most – With great effort, he is still cognitively able to control many of his impulses, so he holds his temper when he feels a tantrum coming on. I recognize that he is trying as hard as he can, so I no longer lose my temper when he forgets what I said 5 minutes ago. I just repeat it.
  1. Some Normalcy and Freedom – Because Sid is still able to drive LOCALLY AND IN THE DAYTIME (per permission of his neurologist, based on his mini-mental scores, but he is evaluated every 3 months) – I am free to work at private tutoring and this website. I am only able to work from home, and go to my tutoring clients’ homes,  because I need the flexibility to go with him to his doctor appointments, and be available if he needs anything or needs to be driven out of town. He does all the local errands and shopping for me – with detailed, step by step lists and instructions, of course. He also does a lot of house chores – he empties the dishwasher; makes the salad; folds the laundry. These activities make him feel useful and needed, keep his brain active, and help take the burden off of me, so I can do my work. I know there will come a time when he will be unable to do these things, but for now, I am grateful for what he can do.
  1. Love - Maybe it’s not the passionate partnership it was for the first 34 years of a 37 year marriage, but the love is still there. I will always love who he was and what we had, and I love this man who is trying so hard to hold on to the cognition and memory he has. It breaks my heart to see him struggle so.
  1. Date Night – This is good idea, which I thought I had brilliantly devised on my own. Not so. When I mentioned it to my two mentors in our support group, they told me they had been doing it for awhile, and it is a positive, effective tool for re-connection. We take one night a week for just us to go out together. Dinner and a movie; dinner and dancing, dinner and an outdoor concert. If you are retired, make it a daytime thing – since we live in Florida, we can do outside activities all year round, like beach, zoo, nature cruises. But those of you who have cold winters can find indoor activities like movies, theater, concerts. Whatever your interests are and your spouse is still able to enjoy, do them together one night or day a week. Let your spouse in on the planning. It will make him/her feel more “normal”.

©Copyright 2007 Joan Gershman



The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

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