The Long Good-bye
Good-byes are bittersweet. If you have had a good time with your loved one then you are sad to have it end. If the time has been less than good then you can be relieved that the time is over. Either way, you hold the hope that the next time will be a good time! The actual period of saying good-bye is relatively short … a hug, a kiss, a handshake, a pat on the back with an “I’llseeyalater!” and the deed is done. With people who have Alzheimer’s, “good-bye” takes on a whole different significance.
When you come to see your loved one, you are faced with not knowing whom you will really be greeted by. Will she remember who you are? Will he remember who he is? Will they remember where they are? Will they be relaxed or agitated by however they answer those questions? This uncertainty is what keeps many from coming to visit because they do not know how to handle the person who ends up showing up that day.
I recently met a woman who was going to see her aunt at the nursing home. Her aunt would be quite agitated and was always asking why had they left her here and saying that she wanted to leave. When she wasn’t agitated, she would talk about how she had had an affair when she had been a seemingly happily married woman for many years. The woman going for the visit was having anxiety about what to talk about with her aunt. I encouraged the visiting niece to calm down and to realize that the best thing she could do for her aunt was to not try to rationalize with her because her anxiety was not logical. The best approach is one of reassurance. “Auntie, no one has left you here. I am here with you! You are safe and there is nothing to worry about. All is well.”
The next step is to distract her. Can you take her for a walk or a roll? Get her a cookie or some water. Take her to the window and talk about what you see out there. Tell her a simple story about someone you know. Put on some music. Do something that is calming and light hearted. Let her talk about the affair or whatever she wants to talk about and do not become agitated yourself because it might seem like nonsense. Maybe she had a secret affair or maybe she is confusing life with a movie she saw. You may never know the truth. Take whatever joy that there is in the moment and relish it. It may not be there the next time you come.
The niece was shocked by this advice. She felt she needed to keep her grounded in ‘reality’ at whatever cost – the cost being that the aunt was more agitated by the time she left then when first came. This sucked the joy out of the being together. It can be great fun if you can “play” along with your loved ones. You have to remember that they are not who you remember them or want them to be. They are who they are right now. That is why it is sometimes easier for caretakers who come in at the later stages: They don’t have an expectation of who that person was; they just accept them for who they are now.
This is why Alzheimer’s is often referred to as ‘the long good-bye.’ Because each day you may feel like you are saying “good-bye” to one more part of your loved one that you may never see again. The hope for the next time being better is dashed. So we must be careful to keep our expectations in check. Enjoy our time together as much as possible. Remember the past; yet be not handcuffed to the past. Accept your loved ones for who they are today. Tell them you love them. Hug them and kiss them. I believe this is understood through the last moments of life. Love always penetrates the confusion.
And when you say “good-bye” … whether the time has been good or not-so … your connection to that person can never be said good-bye to because it lives and breathes inside of you. Cherish and hold on to that … that which can never be said good-bye to.
Rev. Arlene Butler, L.C.S.W.
April 2008
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