It all started with a light bulb burning out in the upstairs bathroom. My husband asked for my help in replacing a new one, since the last light bulb he replaced was the wrong wattage and immediately shattered, leaving him in the new basement and totally in the dark, alone.

Several years ago, for Christmas, he gave me a sturdy folding red step stool with a 300 pound capacity sticker in bright yellow and a red ONE SIZE FITS ALL surplus reject knock-off Snuggie, that is somewhat like a backwards bathrobe, but could easily have fit six or seven people with very long arms inside the robe. I was about 15 lbs. heavier at the time and not happy about it, however the combination of the two gifts still makes me laugh.

So, back to replacing the light bulb: I grabbed the step stool, a 60 watt light bulb and between the two of us we changed the bulb. Unfortunately, I had to tilt my head backward which triggered an episode of vertigo, that I still have. Royal pain. Upside, light fixture from the 1930's is clean and there's light. In the midst of this, we got a phone call, letting it go to the answering machine. I listened to the message later and it was from my husband's schizophrenic sister, canceling meeting halfway for lunch for the third time. We were both relieved.

He and I ate dinner, watching reruns of Family Feud, even though the weather was gorgeous. My husband has lost his ability to understand the feeling of hot and cold. To him, it is always too cold, wearing multiple shirts, woolen long underwear, flannel-lined pants, and sometimes several pairs of socks. I tried to rearrange his clothes, but he got upset, so I chalked it up to "pick your battles."

While he was eating ice cream and cookies, I told him his sister called again, wanting to talk with him instead of visit AND she said he needed to call the other sister in California. He didn't want to, but it has been implied by his daughters and his sisters that I am isolating him, so I said, "Let's just get the phone calls over with and then you can sleep."

I dialed the numbers for him and then got on another extension of the landline. Usually, I let the other person know, then get off. I'm way beyond that courtesy. My own family of origin has some issues, but his are off the fucking charts. Both sisters were asking him how my mother was, if her house was being sold, and then said they would like him to fly to Colorado and California to be with "his first family." I could feel my blood pressure going up, some primal protective streak, which morphed into rage. I said nothing.

They all have no clue as to his changes, his vulnerability, his fears or obsessions. Initially, I would send emails or get on the phone to keep them updated. Totally backfired, to the point that I am the cause of his disease, in their version of reality. They criticize everything, yet offer no appropriate help. Oddly, my husband understands this dynamic and really doesn't want to see or hear from them.

From my perspective, I find the situation sad and discouraging, but know I tried. Legally, I've made sure he is protected and I have support from our two sons, my daughter and her extended family through marriage, plus my one sister who is helpful. Because he is 14 years older than I am, I do worry about finances, house repairs, and if it comes to the point where I cannot care for him at home.

His nightime wandering and sundowning have worsened. The medications he's on are all that the neurologist has in his arsenal. Despite this, last Saturday we visited my mother at the assisted living Mothers' Day Brunch that started out well, but ended up badly. I won't even get into that, suffice it to say, my husband and I went back the next day to make sure my mother was physically and emotionally alright.

I'm omitting numerous details but to end on a positive note, there was a tornado warning and we lost power for 6 hours. Good thing I still had Christmas candles around the house and an IKEA solar lamp. Both sons were off to my daughter's to play Tetris and Counter-Strike. No tornado, but a deluge of rain. I cooked dinner with my old gas oven then he and I played cooperative Scrabble by candlelight. He remembered the rules somewhat, but had trouble with words.

The bag the old Scrabble game was in had free newspapers and tide charts from our last vacation on Long Beach Island, before Hurricane Sandy, before his diagnosis of Alzheimer's. August 2012. The really positive ending is that my daughter and both sons found a new place and we'll be renting the entire house for one week at the end of June. I've missed the ocean so much and cannot wait!