As I was showering this morning memories of the week Linda died were vivid. I'll never forget taking a shower and wondering if that was the last time I would shower as a married woman- would the next one be as a widow? (It wasn't- the next one was). Then there was the climb up the stairs after Linda died in our living room. The sudden realization that I was never going to see her in our room again. That I was going to sleep alone in our bed. That I wasn't going to hear her call me "Jillie" as I walked in. Small realizations as you come to terms with such an immense loss.
And so this week I am having those thoughts once again. This time I will not be walking back into our room from downstairs- Casper is in a hospital bed in our room. I'm remembering things I wished hadn't happened the last time, and taking steps to make sure they don't this time. This time nobody is going to change the sheets on our bed. I'll do that when I am ready. This time I am double checking all the ideas for a service so I do not upset anyone this time around. I have backup plans to take care of our oldest daughter, who is hurting tremendously with Casper's sudden and phenomenal decline.
One month ago next week Casper was able to walk down the aisle at our wedding. Her face lit up as I walked toward her. She was weak but she was determined, and her smile was unbelievable. Today, and all this week, she has been essentially bedbound. She would very much like to be up, but the last time she fell, and she no longer has the ability to stand or pivot. When I helped with her bedbath on Monday she could not stand long enough to be washed bedside, even with my arms around her. The last night in our shared bed was Sunday, when she asked her brother to get her there because she knew she would not be able to move much longer. She was completely accurate. That night she and I talked, and in a lucid moment she told me she didn't think she had much longer. She could tell her body was changing.
How does this happen? Why now? The answer really is- why not? Lewy Bodies take over the brain, and go after all the major systems. Respirations; temperature regulation; bowel and bladder; appetite; taste; GI; movement; vision; blood pressure. They leave nothing intact in their path. Their path is different in every person taken over by Lewies. Casper is no longer breathing normally. Her temp is off the wall- up, down, in zones on her body. She's not hungry. She's rarely willing to drink. She's been so unconscious she didn't feel a catheter going in or recognize it was there for days. Lewies wreak havoc everywhere they go. They create delusions and hallucinations; they make your memory fail. The picture on this blog has some of our wedding pictures on our wall- and they have names attached. Casper told me she can't recognize anyone- even herself.
This week it has been our turn to experience a full scale Lewy attack. I am watching my wife fade as she battles for her sanity. Yesterday she was trying to remember the names of her best friends and begging them to join her with the nurse in a prayer to make her remember them and be able to breathe. She was frantic. Did I mention Casper never, ever prays openly? (And yes, for the skeptics, she does have a strong faith. She is just very private about it. She has never believed in publicly announcing her beliefs and mistrusts those who do.) Friday night when I returned to our room after a break she held her fingers to her lips and frantically motioned for me to be quiet. She mouthed the word "COPS!" and pointed to our office opening. Then she tried to secretly motion that there was a problem behind her. She finally whispered in my ear as I leaned over the hospital bed rail "There are bad guys behind me. They came in through the secret door. The cops want to get them. I need to keep you safe. We could get caught in the gunfire." The wall behind her is our second floor bedroom wall. There is no door. Later her catheter became attached to the TV and was making it select channels against her will, and her oxygen line was producing urine. Who wants to make those ideas go away with someone who is utterly convinced, afraid, and knows it to be true and not true at the same time?
In the midst of the craziness Thursday I called our nurse. She's no longer Casper's nurse, because I think I need her more now than Casper does. As I was trying to explain what was occurring I finally handed Casper the phone. She'd been tugging at it trying to understand who was there. Suddenly-"You know I love Jill, right? I'm afraid she's going to stop loving me. I'm so afraid I am too much. I'm afraid she's going to walk away. That I'm too much for her." Take one Jill heart and tear it in half. There are no words. The Lewy Body literature says over and over that caregivers of patients with this horrendous disease are frequently afraid of what they are facing. I think if you ask one of us you will find we are afraid of what our loved ones are experiencing. It's awful to watch. To hear. To feel as Casper holds my hand so tight that it hurts.
And then there is the sudden change in personality. I'm told Casper used to be quite the fighter back in the day. I've never seen that. For her it was always in defense of others, for good cause, but she was strong enough to throw a grown man to the floor. Now, despite the ravages of Lewies, she's back there now at times. My gentle Casper, who held doors open for me and fought battles for me, is now hitting me and being aggressive. Then she's loving and cuddly. She smiles- then can swing when frustrated or in pain. Our doctor described the Lewies as "reorganizing her brain." Apparently the reorganization includes aggression, no longer wanting her beloved Fuzzy near her, and using language previously reserved for the worst of times. I know it's not my Casper- but I miss my Casper desperately.
And then there are the moments- increasingly infrequent moments now- when she is my Casper once again. When what she wants is to share our bed again, to be held, to know we are still "us." Fingers crossed that as she fades, as she is surely doing, we will have a few more of those, that the Lewies will allow us to hold hands safely and let her recognize we are as they take her from this world to the next.
http://dana.org/news/cerebrum/detail.aspx?id=44538
This was so raw and complex and candid. I can say I know what you are feeling because my husband has Lewy Body and the pain you feel is what I feel. I can say however, that I would not have been able to put into words the ungodly feeling of being the steel ball in a pin ball machine and the dread of worry of just what horror my husband must be going through. Sometimes, that's just more than I can handle.
ReplyDeletePlease, take care of yourself so you can be there for Casper.