I woke this morning feeling the cavernous hole my husband was supposed to fill. The quick kiss and hug first thing in the morning, making his coffee, the idle chatter. My soulmate.
So I cried.
Granted, I am very blessed. My kids and dogs love me unconditionally. I have a safe home, and I’m financially secure. But I miss Dave’s warm body next to mine. I miss the time before that evil beast entered our lives: Alzheimer’s.
Missing that level of deep, daily human connection isn’t a sign that I’m ungrateful for my current blessings. It simply means we loved deeply, and the loss is still monumental.
I’m not willing to fill that cavern with breadcrumbs from opportunists or manipulators, however. I’d rather be alone.
I’ve closed many doors this year—for my own sanity and protection. Some belonged to Dave’s acquaintances, or so-called friends, and some were mine. That’s okay. No more people showing up to mooch money, satisfy their curiosity, or tell me how to run my life. Gone!
The friends I still have are scattered across Alaska, the Lower 48, and even other countries. So yes, life is quieter now. I was blessed to reconnect with one dear friend, and once she’s back from out of state, hopefully we’ll finally get together.
Maybe that’s why I still wake up aching for the life we had before Alzheimer’s. It’s impossible to separate missing Dave from remembering what Alzheimer’s put us through.
I’ve probably said this before, but Alzheimer’s is evil. It destroys not only the person who has it, but the caregivers and families who love them. It’s hell. Pure and simple. Hell on earth.
And the healthcare system, at least here in Alaska, leaves Alzheimer’s families largely on their own.
Thank God for Hospice.
We had no access to Alzheimer’s specialists. There may have been some in Anchorage, but Dave couldn’t fly. It was hard enough just getting him into the car.
The doctor we did have had such an ego that he wouldn’t reach out to colleagues or Alzheimer’s experts to discuss Dave’s case. For years I listened to him tell me he didn’t think Dave had Alzheimer’s because Dave didn’t fit what he’d seen in his other patients. Blah, blah, blah.
Finally, I got Dave in to see the local neurologist—after paying $200 just for a referral letter. Don’t get me wrong, I’m grateful for the referral, but $200? Wow. The neurologist examined him and said, yes, Dave had severe Alzheimer’s. He couldn’t believe I’d managed as long as I had without specialized care.
Well, you do what you have to do. That’s the bottom line.
Getting the doctor to approve Hospice was another battle. He insisted Dave wasn’t going to die anytime soon. He pointed out that I was already providing hospice care and that Hospice itself didn’t do much of anything.
Dave couldn’t walk. He was bedbound and rapidly losing every function. He became bedbound three days after his birthday, November 13. He died on January 7.
I finally called Hospice myself.
They contacted the doctor and sent over the paperwork. Once again, there was another tantrum. Eventually, he signed it.
The doctor’s opinion of Hospice was wrong! So very wrong!
The nurse who came to evaluate Dave was incredible. That same night he was admitted to Hospice. The next day medications arrived to help ease his anxiety.
Hospice was a godsend. They provided pain and anxiety medication, training, supplies, and a CNA who came once a week to help me bathe Dave and teach me what I needed to know. Most importantly, I no longer felt like I was going through this alone.
Even with medication, rolling him over and cleaning him was often a battle. I got cursed at more than once. Looking back, I can even smile a little about it. That’s okay. I still had to care for him. I wasn’t about to let his skin break down.
It was exhausting, physical work, and I will always be grateful to my kids, who came before and after work to help care for him during those last few weeks.
Eventually, I started sleeping on the couch because his sundowning kept me awake all night.
Then one day… it stopped.
I moved back into our bedroom, but it was bittersweet. The sundowning had stopped because Alzheimer’s had entered another stage. It was shutting down his brain, little by little. I could see the changes every single day.
He became like a little boy. My baby.
He played with toys for a while.
Then he stopped playing.
Then he became silent.
Then his body began shutting down.
To my horror, he started passing blood.
I was terrified I’d caused it by increasing his pain medication. (Yes, Alzheimer’s causes pain too. Things that once would have been comforting or pleasurable had become unbearable for him.)
I called Hospice sobbing.
They reassured me I’d done nothing wrong. They wouldn’t tell me he was dying. They simply told me to keep him comfortable.
The smell of blood mixed with excrement was horrendous.
I cleaned him as gently and as often as I could. But the blood and excrement kept coming.
Then the moment arrived.
I was lying in bed beside him, snuggled close, with our children and my son-in-law there too. We had already begun quietly sharing memories before he took his last breath.
My son later told me he saw Dave standing in the kitchen doorway, looking toward the living room. Then he turned and walked away.
Dave had left this life for another.
