Do I start from 22 years ago when I first met my husband, and he shared that his dad had passed from early onset Alzheimer’s (incorrect diagnosis but the closest the doctors could get to the real disease at the time)?
Do I start from 10 years ago when my husband started exhibiting embarrassing child-like behaviors?
Do I start from 7 years ago when I gave birth to my third child and first admitted to myself that I’d likely be raising him alone?
Do I start from 4 1/2 years ago when I tried desperately to get an aging neurologist to believe me that something was not right with my husband?
Do I start from 3 years ago when my husband nearly lost his job, and I insisted a neuropsychologist give my husband a battery of tests to prove he had a rare dementia called FTD?
Or, do I start from last Sunday when our family of five had its last outing as a single unit living together under the same roof?
Yes, that’s where I’ll start . . . it’s the start of the latest crisis that will change the course of our family forever, again. It’s the start of the deepest hurt. Yet, it’s the start of where we all might begin to heal just a bit.
My husband had been gone all weekend to visit his mother and brother. He returned Sunday morning, and I could feel my own anxiety rising on the one hour drive home. Tensions had been high in the house for months (or really years). His childish behaviors were annoying to our children. His need to turn off the lights and lock the doors were annoying to me. He spent hours hiding in his room avoiding any responsibilities of parenting or maintaining the home. It sounds like little things that we should have been more tolerant of, but the sum total of a thousand little quirks wore on all of us.
Later Sunday, we attended the Alzheimer’s Walk. It was a two mile walk in 90 degree heat with a thousand other people. My husband struggled with too many directives to tone it down from myself and our children. He was “off the rails” as I often say. One of our sons was sick with a severe cold, so we cut the walk short. That irritated my husband even more that he didn’t get his way to finish the last half mile. His ability to empathize with others is gone.
Our family returned home hot and cranky. I left the house for 5 minutes to run an errand. It was no time at all. But, in that 5 minutes our entire world changed. Two of our children got into a scuffle. It was no more than a typical sibling scrap. One intentionally aggravated. One yelled. My husband ran from the bedroom and made the impulsive decision to be physical to stop the sibling argument. My phone immediately blew up with crying children expressing overwhelming fear towards their dad.
I broke local speeding laws to get to my family. First task was to console my distraught teenager. Just an hour earlier he had confided at the Walk that he was “crumbling.” What a profound way to describe his emotional state. It struck me. It killed me. It resonated with me. We were all crumbling. As hard as our family was individually and collectively trying to hold it together. . . we weren’t. I had felt in the last six months that I was losing not only my husband but also each of my three kids to this disease.
My husband gave me a goofy wave and smile as I approached the back door to talk to him. Huh? He had no idea that his aggression towards our child was profoundly wrong. He could have seriously hurt him. As I asked my husband about what happened, he lifted his right leg like a male dog might and farted loudly. Huh? No remorse. None.
Pack a bag. We’re going to the ER. It was the fastest triage ever. My mother in her 70’s with blood sugars out of control and a broken arm in three places didn’t get the same triage urgency as my husband on Sunday night.
Literally fifteen minutes after entering the ER, my husband was escorted to a psych ward holding cell. I was directed to an obscure waiting room. Three hours I sat completely alone to consider our next steps. A psych intake male nurse finally found me to discuss my husband’s case. The words came out with unwavering conviction, “My husband cannot come back to our house. Period.”
It is not safe. It is not safe for my husband. It is not safe for our kids. It is too much for me that has been holding everyone together with what has felt like sticky note glue, at times.
There. It is out. Please hear me ER man. I’m at the end of my rope. There are no more knots that will help me hold on. It’s just frayed ends.
My husband was in a manic state and struggled to calm himself. The hospital agreed to admit him. It took six hours.
One could look at this as the end. The end of our family of five under one roof. It’s not the end. It’s the beginning.
This past week has been spent looking for the best option going forward. We’ve found it. It’s a memory care facility for high functioning dementia patients. It’s a mile from our house. We can visit, the cats can say hi, our kids can spend the night, friends can take my husband to lunch. My husband will be cared for by professionals. Relief. Complete relief.
And so now where do I start? I start to heal. Our kids start to heal. Even my husband starts to heal in the ways he can. He will have a definitive routine. Dementia patients thrive on routine. He will have activities. My husband needs to be entertained. He will have his own space furnished with familiar things. It will be clean. It will be free of chaos. It will be void of responsibilities and other household stressors. He will have another NASA engineer in his 50’s next door.
In the seven days since my husband entered the hospital, there has been laughter. There have been tears. There has been love.
Today, my husband officially moves to the memory care facility. “And then there were four” as my oldest posted to SnapChat. My husband isn’t gone. He’s where he needs to be for his safety and ours. He’s where he needs to be for his emotional heath and ours. He’s where he needs to be because despite how he presents himself, he is very sick.
And, so, we start again. The steam is slowly being released from the pressure cooker. We can breathe. We can heal. We can put the crumbling pieces back together. We can love my husband through this transition. Even though we are no longer all under the same roof, we are still a family of five. It’s where our next chapter begins.