JOAN’S BLOG – MON/TUE, AUGUST 15/16, 2011 – A LEARNING EXPERIENCE

This blog, although written for the benefit of our many new members, is a good reminder to all of us veterans in the AD Spousal Caregiving Club. In reading the Message Boards lately, I have noticed many new members who are frustrated and confused. That is to be expected when one’s spouse is in the early stages of Alzheimer’s Disease. It is before they have learned the multitude of rules required of an Alzheimer Spouse. Don’t argue. Live in their reality. Answer their repetitive questions as if it was the first time you heard it. Learn everything about AD. Read everything about AD. Accept that you cannot change their condition. Change your methods of handling situations because they cannot change theirs. Ignore the verbal abuse – it is the disease talking, not them. The rules can spin your head around.

But in the beginning, our new members are discovering what almost destroyed me when I first encountered it – the personality change and irrationality. It is very important for the sanity of the “newbie” Alzheimer spouse to understand what is happening and how to deal with it.

As is happening with those of you who are new to this, I was stunned when my loving husband, who had taught ME the art of compromise in a marriage, suddenly became unyielding, irrational, uncompromising, and in my mind, just plain crazy.

The example I always use when explaining the changes that were occurring in him is the “fix my computer” episode. For almost two years prior to this incident, I had been noticing that he could not learn how to use e-mail, no matter how many times I explained it. That should have given me a clue that something was “off” with him. In any case, one night, Internet Explorer would not work on his laptop. Since we were moving to Florida in a couple of months, I did not see the need to call the cable company. AOL worked fine, and he could get onto the Internet that way. Every night after that, he yelled at me that I needed to fix his computer, and I explained how he could get onto the Internet via AOL, which he did.

One particular night, I was in my office writing reports for my job. The office was next to the den, where he worked on his laptop. He said nothing about the computer all evening, and at 10:30, I was exhausted, and went to bed. At 11:30, he woke me out of a sound sleep, screaming at me that I didn’t fix his computer. I groggily repeated what I had been telling him for weeks – that he could get onto the Internet via AOL. He yelled and screamed that I should have fixed it THAT NIGHT. I tried to reason with him that he did not say a thing to me that night while I was in my office. He screamed that I should have fixed it later. I rationally pointed out to him that I was SLEEPING “later”. Nothing I said made any difference to him. He continued screaming that I never did anything for him; that he was last on the list; and on and on. Then he went to bed and fell sound asleep. Guess who was up tossing and turning all night, wondering what on earth was going on with her husband?

There were many more such incidents to come before I learned the most important lesson of all. You cannot, under any circumstances, treat them, and expect them to react, the way it was BEFORE Alzheimer’s Disease. Their brain is damaged. The person you knew is gone and is not going to return. Believe me, I know how difficult that loss is to accept. I went into my first support group meeting expecting them to tell me how to make my husband return to who and how he was. I fought for years trying to react to him, and expect him to react to me, as we had for the first 35 years of our marriage. It accomplished nothing but make things worse.

To those of you who are writing for our help and support, I can tell you that you cannot talk to your spouse as you used to. You cannot expect them to respond as they used to. Reasoning will not work. The reasoning section of their brain is broken and cannot be fixed.

For now, my best advice is STOP ARGUING WITH THEM. Remember – it takes two to argue. As difficult, stressful, and frustrating as it will be, your best option is to stop arguing and stop trying to reason with them. When anyone, whether they have Alzheimer’s Disease or not, is faced with someone who will not argue back, the wind is taken out of their sails, and they stop.

This Alzheimer journey is an arduous one. It will kill us before it kills them if we allow it. You cannot tackle everything at once. Read the “previous blog” section on the left side of this website (there is a search feature, so you can type in the subject you are seeking); use the search feature on the message boards; write on the message boards for support and help. I highly suggest reading “Understanding the Dementia Experience” on the left side of this website. Take one step at a time. Learn one rule at a time. Take one day at a time.

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The Alzheimer Spouse LLC
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