This is long. But weighty.
The past two weeks have been a whirlwind. It’s hard for my mind to even process all of the ways things changed. And how very quickly. And sometimes, this disease just works like that. But I truly believe this was Mitzi’s last ability to have some say in a how this final chapter of her life’s story would be written.
I haven’t been very articulate in how things have looked because I know it’s hard for people to read. I want to honor Mitzi’s wishes to show the “It is what it is” reality of Alzheimer’s to help people gain a greater understanding of it, so eventually, I will try to put into words what this all looks like as you get to the end of the disease’s crooked, uphill road. We believe that if we hide it away because it’s too tough to talk about, that won’t bring the awareness the world needs to start fighting for treatments and a cure. That’s a bandwagon for another day, though.
Suffice it to say that the past two weeks have been incredibly, incredibly hard. Especially on Gary. But overwhelmingly on Mitzi. I’m fairly certain her brain has shifted into such a neutral position that she hasn’t been aware of most of the worst of things…until this week. There’s a tiny bit of mercy in Alzheimer’s.
She had been on a bit of another noticeable decline 2.5 weeks ago. The day her daughter left to return to college, we had to do a fairly significant increase in the anxiety meds that were helping to keep her brain calm. Looking back, even though Mitzi didn’t seem to know at all what was going on with her daughter leaving, I think she knew. Much like last year when she hit a big decline after her daughter left for her freshman year of college, it was like Mitzi could finally let her guard down and put down the mask she had been bravely holding up so we could see the battle that was really raging in her brain. This year, after a summer of her daughter choosing to stay home quite a bit and help talk care of her Mom, when she left, Mitzi took down another mask. And we didn’t even have time to buckle up before Alzheimer’s took us on a 2 week roller coaster of caregiving only to deposit us on the front lines of the disease’s own hideous D-Day battlefield. I kept reminding myself at every major step down we saw coming daily that as ugly as some of the moments are, though I (or Gary) would never forget, she would not remember. Thank God for that.
A week ago, it became obvious the disease had finally won the battle over her walking. It was hard for us to admit she wouldn’t be out of a bed again. She quit being interested in any kind of food and we had to progress to thick liquids since she wasn’t chewing. By Tuesday, she was in such distress and what seemed to be pain although we could find nothing obvious to be the culprit. Hospice advised we could now try morphine. And she was so distressed that it made the decision to try it easy. But it was still so hard to face the reality of it. It was also very weighty on both Gary and me. We all know the power in that blue liquid and it became a routine of checking and double and triple checking our measurements before administering them in the tiny syringe under her tongue.
Wednesday was the last day we were able to get liquids of any consequence in her. Even the raspberry sorbet that she seemed to enjoy so much in the days before couldn’t entice her to open her mouth much. The episodes of restlessness and obvious agitation as she pulled relentlessly at the covers and pillows and our arms and hands were gut-wrenching to watch. The meds would wear off quicker and quicker and once she’d get to the more frantic phase of agitation, it would take that much longer to get her calm. By Friday, she wasn’t even making it two hours between doses. We knew it wasn’t sustainable for us to keep her comfortable at home. Her dear friend Karen, a night nurse who does home calls for Hospice, just happened to be scheduled to work this week. Not a coincidence but a God-incidence that was obviously pre-arranged long before we knew it would be needed. After a very long day of her sister and me basically doing labor coaching with Mitzi through the contractions of intense agitation, Gary called the after-hours number and Karen was sent out to the house to evaluate the situation. Her conclusion was that Mitzi was appropriate for being moved to inpatient care.
I could write volumes about the feelings and emotions we all had in the 2.5 hours between Karen’s arrival and the moment they pushed Mitzi’s tiny body strapped onto the big gurney into the ambulance and closed the doors as we stood on the other side of them in the driveway. It was Friday the 13th, and the wind was blowing wildly through the palm trees as the giant full moon lit up the night. But the big takeaway for me that night was when Gary asked Karen what he should pack for Mitzi.
“Nothing.”
The word hung heavy in the air. At least it did to me. The stone cold reality that Alzheimer’s doesn’t care what you have was wrapped up in the weight of that word. Nothing. It doesn’t care whether you live near the beach. What your investments are or aren’t. If you drive a jalopy or a fancy car or if you have diamonds and gold galore or a macaroni necklace from your 4 year old. Alzheimer’s doesn’t care. And in the end, death doesn’t care. We all go out the same way we all come in. With the same amount of luggage. In the end, it’s the memories and the love that we leave behind that matters most. “Nothing” was a powerful one-word lesson for me that night.
So here we are. Sunday morning. I didn’t want to go to church. Too many questions. And I cherish this time in the stillness of Mitzi’s quiet room; sitting here writing this as she sleeps deeply in the bed next to my chair. Friends and family who can’t get here have called and left voicemails on our phones that we have played for her. The beauty of that is that we can play them multiple times. Those who can come and sit and talk. The heavy lifting is now done by the wonderful and caring staff. It is truly a blessing to be in this serene, beautiful place.
One of the pastors from my church came by yesterday afternoon. He has always been inspired by Mitzi’s courage and faith. He even showed a video of her story in a message once a few years ago. He prayed a beautiful prayer over her while Angela and I held Mitzi’s hands and she slept. I know she heard every word, though. The moment when he said, “And father, even now, we know you are preparing to welcome Mitzi home to your loving arms,” I instantly saw this movie in my mind that showed the banner her sister made once when Mitzi came home from college. In my mind, I could see God having the angels paint another one of those banners with the same words and hang it high on the home He has prepared for her. And I could see the Homecoming Queen, perfect and walking, with her tiara on, Jesus by her side, in these last few steps towards the Heaven she has so been waiting to get to…????
Please pray for Mitzi’s family and friends and especially for the comfort and peace of this beautiful soul…
