Approximately one year ago, I realized but did not fully comprehend what I meant at the time, nor the ongoing and everchanging behaviours, and more importantly how living with a spouse with Alzheimer's would affect not only him, myself, and our relationship, but our entire extended and blended family.

When I chose to write about our ups and downs, I did so with caution and my husband's knowledge, at the time. Although I still don't include every single detail, out of deference to his dignity; HE NO LONGER CARES OR COMPREHENDS. In rare moments, I read to him what I've written and his response is fleeting. ("Does this help other people understand?")

Helping other people was always a value we shared...until he rapidly entered the world of Alzheimer's, which is now more awful and less of a wonderland. But it's our life and we do the best we can. This week I was assaulted by condescending and "what I've read about...." texts from the step-daughter who lives in Brooklyn.

Our last three weeks were upset enough by an in-home VNA evaluation for increased fatigue and shortness of breath on mild exertion, ordered by his internist. None of the three people, two nurses and one physical therapist seemed to be familiar with the stage of Alzheimer's he's in, despite my describing it in full detail prior to the visits.

My husband awoke more than normal, dressed and ready to please at 2am, 4am, 6am. In his disordered thinking, he thought he wasn't supposed to eat. When I'm sleep-deprived, my first reaction is primal; eat this and go back to sleep. Sometimes it works. For those of you with young children, you may know what I'm talking about.

Didn't help that the Adult Day Care Center where he spends 6-8 hours per day had a change in staff. He has taken to bringing home plastic spoons, stopped working on decorating bluebird boxes that are sold at farmstands with proceeds going to a local food bank.

I continue to attend Caregiver Support Groups, which honestly somedays I'd rather be home watering my meager garden. They are not uplifting and the nurse who is the facilitator eats her lunch and doesn't seem to know how to control inappropriate remarks. Spousal groups are smaller, yet only held every three months.

Periodically, I'm sent pages and pages of feedback forms, which I fill out, but nothing seems to change, except the cost of attendance, which has gone up. Like gas, like eggs, like milk. Currently, the structure the Day Center provides suits my husband's needs, while giving me a break.

When I ask him about his day, he cannot remember even what he ate for lunch. One day, he said, "Meatloaf and clouds, with one third of the plate full of spinach, industrial spinach."

Today, after a failed attempt to meet his schizophrenic sister halfway for a late lunch, he remarked, "You're the only one who understands I need to be told things inch by inch." That was the supreme understatement regarding the last month.

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