JOAN’S BLOG – AUGUST 1, 2014 – UNPREPARED

It was October, 2006. “He has Alzheimer’s Disease.” From the moment the neurologist specializing in memory disorders uttered those words to me, after 3 years of frustration and misdiagnoses, I prepared myself for what was ahead. Sid and I had just moved to Florida to “semi-retire”. Instead of planning travel adventures and seeking part time jobs, we went to a Certified Elder Law Attorney to plan our “advance directives”. In normal speak, that means that we had living wills, health care powers of attorney, durable powers of attorney, and our wills drawn up and signed.

I then went about learning everything I could about Alzheimer’s Disease.  I read all of the books that described what was ahead for Sid, how to handle the behaviors that the books said he may or may not exhibit.  I immersed myself in the Alzheimer World, advocating, learning, teaching, starting this website, joining a support group, and becoming part of a social group of Alzheimer couples.

For years, as an Alzheimer Spouse, I endured the unimaginable – the gentle, loving, kind man I married turning into a violent, rage filled stranger. I was dumbfounded. Alzheimer’s Disease was all about memory loss, wasn’t it? That is what TV ads and articles had led me to believe.

There was cognitive decline – the electronics whiz on whom I depended to hook up, fix, understand, and explain every piece of equipment in our house was having difficulty working the TV remote control. The man with whom I had discussed and debated politics for 40 years could not explain why he did not like a particular politician’s stand on issues – he simply said – “He’s an idiot”. When queried as to why, he answered, “He’s an idiot.”

Violent mood swings became the new normal in our house. In the early stages of the disease, he often recognized, 12-24 hours after an irrational rage filled rant, that he had been unreasonable, and he sadly and quietly apologized, only to erupt in another irrational outburst minutes later. I felt like a battering ram for the Alzheimer Devil. What was this coming at me from all angles? Alzheimer’s Disease was all about memory loss, wasn’t it? That is what the TV ads and articles had led me to believe.

The worst part of trying to deal with this monstrous disease that had taken over my beloved husband was the advice I was given by my social worker. Do not discuss or argue with him. Divert his attention, distract him, and handle all situations on your own. What? Not discuss and compromise as we always had? But, I argued with her, if I did as she asked, I was destroying the very foundation of my marriage. She informed me that I either learned to deal with him differently than I had for the last 3 decades of our life together, or I was destined for constant battles, stress, and anxiety. The disease, she told me in what I thought was rather harsh terms, was going to take my marriage and my husband as I had known them, and I was going to become more and more a caregiver and less a wife. ????????  What was she talking about? I could not accept it. As those of you who have followed my blogs know, I fought against her advice; I fought for my marriage and husband; I fought until I almost died, and finally, Alzheimer’s Disease won. It did take my marriage and husband, and I did become a caregiver rather than a wife.

Still, through it all, including his placement in a nursing home one year ago, I continued to assume that his decline would be slow and steady, and when the end was near, I would be prepared.

Ah, but Alzheimer’s Disease is sneaky and cruel. One day last month, he was as “healthy” as could be described under his circumstances. He was wheelchair bound, physically disabled; was being treated for diabetes, high blood pressure, severe knee and back pain, and a host of other ailments. But he was still considered “stable”. The next day he was rushed to the hospital for an uncontrollable high heart rate, where he remained for 3 days. On the fourth day, he was sent back to the nursing home on medication to control his heart rate, and on the next day, he was under Hospice care.

Suddenly, I am being told by the Hospice nurse that he has entered the end stage of Alzheimer’s Disease, is declining quickly, may remain in that stage for 6 months to a year, or a sudden heart issue could take him at any time. I am being asked the name of the funeral home to call when the time comes. I could not have been more shocked or unprepared if I had been hit by a bolt of lightening.

My Sid could die at any moment. NO! That could not be possible. NO! I was shaking from head to toe. I could not think or function. How could this have happened so fast? How could I face his death? I could not. I was paralyzed with fear and grief, a condition in which I remained for the entire month of July.

The next day, my dearest friend drove two hours from her home in Miami to be with me. I was close to hysterical, and barely functioning. Two days later, my sister arrived from Chicago to spend 4 days with me to help me make arrangements. I never could have done it alone.

He is perpetually tired and confused. He often wakes up in the morning not knowing where he is or why he is there. Although he usually snaps back to understanding his routine, one night last week, he had no idea that he slept there, and told the nurse to call me to tell me that he was coming home. He did not know, until she showed him, that he had a room and bed there.
 
Overwhelming sadness and disbelief permeates every cell of my being as I hold his hand while he nods off in his wheelchair or when he tells me how confused he is. At this point, I have to question whether he would be better off if he slipped into the oblivion of Alzheimer’s Disease.

I have told my friends and relatives – I understand that I am not the first spouse to go through this; I will not be the last. But when it is happening to me, I do not know how to handle it. I feel as unprepared as if I had never studied a word about Alzheimer’s Disease.

This explains why there have been no blogs, and very little of my presence on the website in July. I have been enveloped in a fog of disbelief and grief. The woman who, for the last 7 years, has tried to educate, inform, and support others on this Alzheimer Journey, fell apart when it was her turn to face the approaching end of her Alzheimer journey.

I am going to call the Hospice social worker for counseling, but I am turning to you, the wisest and most knowledgeable group I know for advice on how to get through this period.

Feedback to joan@thealzheimerspouse.com
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