Preface: There has been a mandatory hiatus from this. Sorry/not sorry. I know it was abrupt. I know it was unexplained. I’ll try to explain now.
As for finally breaking my silence? This is partly my own therapy because the grief/anger/fear/horror/grief/anger/fear/horror/fatigue/grief/anger/fear…just sometimes gets to be bigger than rationality.
My father is in a lockdown unit.
He’s restrained to a bed because at this point he is a danger to himself and others.
He is racing from one stage of Alzheimer’s to the next, over and over again until it seems that there are too many stages to list. I’ve railed at the world, I’ve retreated, I’ve not yet cried. I’m still waiting for that.
He told me yesterday that he lost the keys to the apple strudel.
And while I had a private chuckle for that brief second, the day more or less consisted of a loop from hell in which he’d struggle against the restraints telling me he had to get to work and me telling him he didn’t have to go to work but needed to rest.
I have to go to work
No Dad, just rest. I’m here
No Dad, you need to rest. You weren’t feeling well last night. Please just rest.
What am I stuck on? I can’t get going.
You’re in the hospital Dad.
What the hell is going on here?
Good question. What the hell is going on here?
I had to be escorted by a guard into the wing of the hospital where he’s being kept. I had to leave everything in a locker; my purse, my coat, my phone, my kindle…everything. I had to be checked for anything that could be construed as a weapon. They wanded me. Like I was walking into a prison. Like he was dangerous. Like he was violent. Like he was a crazy. Like hell….
What the hell is going on here? I walked to the nurses station to hand over legal documents and living wills and it was all clinical and tidy. I didn’t even notice the restraints at first. My first thought was “Are you frigging serious?” His joy at seeing me faded within less than thirty seconds. His face was covered in patches of red, irritated skin; a sure sign of stress. He smelled of sweat. His eyes were unfocused.
24 hours earlier, he was calm and smiling and happy. 16 hours earlier he was removed from his nursing home and brought to the hospital because he attacked someone. 10 hours earlier I was finally leaving the hospital to drive in a torrential downpour and heavily weighed the option for a moment of driving to California. 4 hours earlier I woke from about 2 hours of sleep to face the facts that we are rushing towards the last stage of Alzheimer’s like a freight train and I can’t stop it. We don’t have a timeframe because physically he’s probably the healthiest he’s ever been.
I feel like some hapless, helpless heroine. Like Jenny from Forrest Gump. Dear God, make me a bird…so I can fly…far, far away.
Alzheimer’s is like the party guest that you never really liked anyway but they happen to be married to your friend. They’ve eaten all the hor d’ourves and drank all the martinis and tell the most inappropriate stories and is staying at the party until well after you’ve hit your limits of patience, kindness, rationality, endurance and civility. Kind of like leaving the hospital at two AM. It’s just not conducive to reason. Alzheimer’s outstays it’s welcome.
It robs you of your loved ones. It slowly and methodically kills their thoughts and abilities with no signs of remorse. At one moment after I told him he should rest yesterday, I saw the violence there. It lasted for less than a second, but it was there. It was pure anger. What I suggested was not part of whatever narrative was in his mind. I saw it lurking under the haze of confusion and I realized that even though my mother and I know this man better than anyone, we don’t know Alzheimer’s and that’s the bastard that’s taking over.
And he would hurt me.
And that’s why he’s restrained on the bed. And the violence is explosive and sudden and without warning.
Last Sunday I was at the nursing home at 11:30 at night because there had been another incident. They tested his competency the following day.
John, I’m going to say three words and you repeat them, okay? Soap. Blue. Bed. (Pause 15 seconds) What were those words?
I don’t know.
What day is it?
I don’t know.
What year is it?
I don’t know
What month is it?
I don’t know
Who are these people sitting with you?
My wife and daughter
What are their names?
I don’t know.
I wanted to scream. Stop. Stop asking him because he doesn’t know and if he doesn’t know any of the answers then that make this bullshit real and I can’t fix it and I fix everything so stop. Shut your damn mouth and stop. I wanted to scream that in his day…lady…he could’ve answered every one of those questions and then tied her in a pretzel knot with the weight and breadth of his knowledge. He was smart! Damn it! Who the hell do you think you are?
What I did instead was reach over and hold his hand and smile like this was the most normal thing in the world that he couldn’t remember my name. And who she is has no bearing on this situation. She’s a lady who is simply doing her job, but that’s the level of horror we carry daily in this family now. That somehow I felt that I needed to defend him against the reality that a disease with no conscience is killing him slowly and taking with it the one thing he prized. His intellect. I’m usually the warrior. Now I’m an observer and a passenger.
Soap. Blue. Bed.
Last Tuesday I was there walking him up and down the hallways until he collapsed in exhaustion in a chair and I could finally get him to agree to take his medicine after refusing it for hours.
I don’t know what will happen after this.
I don’t know how we’re going to keep going. We will, but I just don’t know how. I don’t know how much longer he will last in this hellish in-between world. I find myself rushing through the stages with him because he’s dictating the pace in which we run in this downward spiral. And the really horrendous part of this? The finish line is something I actually welcome at this point, simply because he would hate this. I do know that I miss my Dad. I want him back. I want my Daddy. I miss his advice. I miss his wit. I miss his quiet bravery. I miss that smile that told me it was time to pull one over on Mom. I miss his mind, his humor and strength. I miss him. I’m scared and torn and angry and I always leaned on him to tell me what was right. I always trusted him to tell me the truth, even if I didn’t want to hear it. So tell me Dad, is it wrong to wish you peace? Because the truth of that is unutterable.
I would like to give a shout out to the nurses and staff who care for him. You will never know how deep my gratitude for you goes. Even the bitchy one in the red shirt who looked at me like I had six heads when I asked if the doctor had evaluated him yet. You too. You snot.