Life does not end when Alzheimer’s begin. That was the gist of the #Still Here campaign launched by the Canadian Alzheimer’s Society in 2016. The truth of that cannot be denied but the necessity to make a campaign about it attests to the fact that Alzheimer’s disease culminates in life’s end.
Bert is definitely still here. I have empirical evidence.
A few days ago I woke with an excruciating pain radiating from behind my left ear down to my shoulder. It was perhaps the worst pain I have ever had, and that is coming from someone who has given birth. It was horrendous. I could hardly get out of bed and having succeeded could not get back in. My Bert woke and was immediately concerned that I was in pain. I got the pain medication Bert got the glass. To take it I had to fill the glass to the brim and sip carefully as Bert held the glass as I could not move my neck in any direction. No relief. Bert kept fussing wanting to know what he could do so I sent him back to bed.
As I could not sit, stand or lie down I knew I had to get some help. As a caution I chewed two baby aspirins and decided to call for an ambulance as it was 2:15 a.m. in the morning.
Bert had fallen asleep. Of course, he has to go with me. He cannot be left alone and we would be fast forwarded into World War three if that was even suggested. I must give thanks for small mercies however, as my Bert can still dress himself. Instantly awake his first concern was for me. He did as told then said: “I am ready but I did not shave.” I told him that was OK and he could shave when we came back.
I got my Emergency Information Vial from the fridge and handed it to the Paramedics. They were pleased and went through the twenty questions routine while checking all my vitals. Having ascertained that it was muscular-skeletal in origin and not cardiac related I was placed carefully in the ambulance while Bert sat up front with the driver. He kept asking them if they were going to make his wife ‘right’. By now they were aware that my Bert had dementia from the vial information and from me. I just wanted the ride to be over. We were travelling on streets I travel almost every day but had never realized how rough they were as every jolt was another stab of pain.
At the hospital we went through the formalities very quickly and my Bert, clutching my purse, was with me every step of the way. He had just one statement and question to anyone who came to see me: “My wife is not right. You can make her right?” As my Bert said this over and over I noticed he was picking his nails, a sure sign of anxiety.
So picture this. Here is a woman whose head is slightly bent forward who cannot move her neck so only the eyes move as each person comes to get information. Seated beside her, clutching a woman’s purse is a man who keeps telling them to make his wife ‘right’. If it did not hurt I would have laughed. This could be a Monty Python skit, I thought. Others in the waiting room looked on curiously but kindly.
A doctor saw me after about an hour and a half, took one look uttered some medical jargon which translated to ‘all the muscles in your neck are in spasm. It must really hurt but I am going to fix you up right away’.
The doctor left and fifteen minutes later a nurse came in and injected me with Valium, enough for a horse it seemed to me. I also got two different pills and prescriptions for them and for a liquid rub.
As we left I heard two people talking:
“It’s a good thing she did not have to stay here. It would take a crowbar to get him to leave her. They held hands all the time. That’s love.”
“He looked sorta cute with the purse too. “ I smiled but I was a bit sad too. My Bert before Alzheimer’s would be just as loving, caring, protective and watchful over me, but he would have been also the proverbial bull in a China shop, ranting and raving and calling on all the powers that be to make his wife better and NOW!
The Meander: We know that emotional attachments go very deep in dementia patients. Caregivers relish those moments of sudden unexpected lucidity, those moments when old narratives play out and love reigns. The Bert wanting to make his wife ‘right’ is my Bert. He is still here.