Very Scary Teacher

There are milestones, pitfalls and places of disconcerting uncertainties along the journey of Alzheimer’s caregiving.  The first one that dealt a blow to my heart was learning that Alzheimer’s is a fatal disease.  There is no recovery.  There is no improvement.  Accepting that was the first of many frightening lessons for me to learn.  It was not a sign for me to give up, but it was heartbreaking in a way that no other disease brings into your life.  Many terminal diseases cause distress, but with Alzheimer’s the final decisions and actions are always yours to bear alone, even if you have made end-of-life decisions earlier in your relationship.

As we speak of the “scary” aspects of caregiving with Alzheimer’s, I must say that one frightening phase that many caregivers face with a person who has Alzheimer’s is paranoia.  Your spouse accusing you of stealing is bad enough, but when there is the accusation of infidelity, it is almost overwhelming.  My husband waved a pair of pants from his closet in front of my face one morning and demanded angrily to know who they belonged to.  He was seriously angry, and his unrelenting demand made me weak with fright.  I fell into the habit of explaining that they were his, that everything in his closet was his, all to no avail.  He accused me of lying and demanding to know whose they were.  It was only when I remembered to stop explaining, that “explaining” was to him a lie and an excuse, and simply said “I don’t know,” that he stopped his threatening stance and just said, “Oh,” returning the pants to his closet.  I was terrified, I thought for a few moments that he would hit or beat me, and I was incredulous that he could possibly think some other man’s pants were even in the house, much less his closet.

This incident was followed by his thinking that people were coming to the house for a party every night, with my being in the middle of the merriment while he was trying to sleep in the bedroom.  There was no explanation or discernible cause for his thinking this, but it went on for weeks.  Every morning he would demand to know who “those people” were and did I enjoy the party, with ever-increasing anger.  It was the most uncomfortable phase of the disease we had encountered.  I knew from accounts of paranoia I had read that sometimes people with dementia will attack even members of the family who enter a room and are not recognized, that I was in danger of my husband seeing me at night and not recognizing me.  He had long since forgotten my name or that

I was his wife, but he had always at least seemed to know that I belonged there.  I don’t know to this day why he was obsessed with thinking that people were coming every night, but I feel very fortunate that he at least did not turn on me physically in his phase of paranoia.

It is only after it passes that you can go back, once again, to remembering the love that was there in the beginning of your relationship.  But go back you must, for that is where you will find the strength that will enable you to accept your journey through caregiving with peace.

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