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We have talked often on this site about the loneliness we feel because the spouse we loved, although not dead, is no longer with us. From the earliest stages, when we start to lose the essence of the person who was our lover and friend, to the end stages, when their personality has long ago left them, we feel lonely. We are lonely because we miss their conversations, their playfulness, their lovemaking, their helpfulness, their partnership.

Recently, I have begun to feel something different. Aloneness. It’s not the same as loneliness. It is what happens when your spouse is either no longer able (for physical or mental reasons), or refuses, to participate in activities you once enjoyed together . It is the realization that I must answer the question - Do I engage in these activities by myself – activities I once shared with my husband, my life partner, or do I sit here cut off from the world  and join in his isolation?  It hurts. It is another in a long series of hurts , but I had to make a decision.

I chose to participate in life . I don’t want to go by myself or with girlfriends out to dinner; on shore excursions when we are on a cruise ; to movies; to walk around and enjoy the weather and holiday lights in our Town Square ; to eat lunch on my patio in 80 degree weather in December. I want my husband with me, as he has always been with me. I want to watch the sunset together . I want to hold hands and talk. I want to take a ride to the beach and watch the waves. But if he needs a wheelchair , as he sometimes does, and refuses to let me push him in it; if he is in a childish, whining mood, and refuses to go out,  I am not going to sit in the house, and allow him to bring me down with him. As I have quoted one of our readers before, “I am not going to let this disease claim two victims.”

That is not to say that I do not, or will ever stop, trying to engage him in activities he enjoys; that is not to say I will not hold his hand when he is sad; try to cheer him up when he is down; give him as much love and understanding as I can. It is to say, I have learned not to argue. When he is determined to sit in front of the TV all day and do nothing else, I now realize that I cannot persuade him otherwise .  I will get up and go out for a few hours by myself or with a friend. When he is no longer able to stay by himself, I will get someone to stay with him.

It is not the same as engaging in activities and watching the world through each other’s eyes. It is so sad; so painful; but is a necessity for my life and my sanity.

How do you feel about it? I know there are those who disagree with me. Those who feel they will stay in their spouse’s world until the end; they will give up their activities to be them and only them until the end. But I cannot live that way. I will be there for him; I will live in his world for periods of time, but I must also get out and live in the outside world.


Tommorrow: Gifts for the AD patient - Controversy among the experts.

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