Holding on as it gets worse

I had time out today. First church, surrounded by church family on All Saints Day, and then lunch with my girlfriends from childhood, all of us deciding when to get our AARP cards and asking to be carded for our mimosas over Indian food. I don't know what people do who don't have best friends and girlfriends and best girlfriends and church family. My life would be unimaginable without them. People who have watched you and your kids grow up, attend your (multiple) weddings, who remember the details you forget and who you get to remind of old and sometimes naughty times. Who know your family and love you anyway.

 

When I first started spending time with Casper it was my girlfriends I told first. Their  positive and supportive reaction made it possible to brave the reactions of others who were not so sure I should have been dating quite so soon. If the girls you loosened the tent stakes of your leader with with on Camp Fire Girl camping trips were open to my growing love for Casper, and her strong arms supporting me as I grieved Linda's death, then I could handle the rest. The same girlfriends helped me evacuate the camping trip we do early the last time Linda went, when her heart began to fail and we had to suddenly pull out at something like 6am on a Sunday morning. What do people do without friends they used to count to ten with to use the swings who now help you pack up your wife to get her out of harm's way, and then help you celebrate her life, and then your remarriage?

 

And so today was time out. Indian food (gluten free for our Wendy), gelato (divine), walking around Eve's chosen city of Long Beach, and time to catch up. The whole time Jay and I were texting. Casper was sleeping (still); she took some fluids and her meds (yay!). Things were okay. I headed home when I just knew I was away too long and was too far away for my comfort. I have a way of attracting stupid drivers and big rig wrecks when I am on the road. "Mayhem" is my weekday middle name. I was sure things were looking up when I made it from Long Beach to Riverside in a record 47 minutes. Especially when it's 56 miles door to door. Casper says I have a lead foot. I think Titanium is probably more correct.

 

And then I was in line at the grocery store. It's dog food cooking night for our aged Lab/Cocker, and I needed supplies. Casper was on Jay's phone. She couldn't figure hers out. She wanted me home. She sounded awful. I would say "awfuler" but my GF Wendy would do a smack down. I was home in more record time. And my heart broke.

 

It's been a bad week at home. The worst since Casper first got sick. She spiked a high temp. She developed both an upper respiratory and a kidney infection. She slept 95% of the time and battled Jay and me the rest of it. Kidney infections create chemical imbalances that cause havoc in your brain, and with dementia already on board there was more. Casper did not hear a hospital bed arriving. She didn't notice me moving furniture out of our room. She was unaware she was even in the hospital bed for a long time, and thought we were at a hotel. One night she asked me to order cereal from room service. When I brought it in she thought I was the waiter. She lost the ability to feed her herself and for a time to drink. We resorted to syringes to get fluids into her mouth (no, there was no needle involved!) Every noise caused more confusion as she tried to sort it all out. Nurse friends who Casper loves came to spend Friday with her and were taken aback by her condition. She knew them, and actually enjoyed her time- but even two hours with them wore her out, and she slept through much of it.

 

And so I arrived home today. Casper was back in our bed. Jay helped her get there at her request. She told him she knew she would not be able to move much longer, and that she would have to be in the hospital bed. There simply isn't going to be an option soon. The nurse in her knows that. But she wanted a night or two back in our bed. With me. I curled up with her. She didn't have the energy to put her arms around me, and her arm under me had so much neuropathy that she had to ask me, gently, to be careful. She hurts everywhere now. All the time. I lifted her other arm up, and placed it over us, and we snuggled for a bit. Casper's head rested where it used to. Our hands closed around each other. And yet she was so short of breath even a kiss was an effort.  There were tears. Because this was my Casper. The same Casper who, early into our "getting to know each other" phase, sent me a text that said "How long has it been since you had strong arms that wrapped you up and held you, and made you feel safe?" The Casper who was so butch I never held a door open; I was met at my car door when I arrived home or at work; who woke me with coffee made exactly right and my clothes pressed and ready for the day. The Casper who cooked for us and made sure sheets were changed and who truly made me feel enveloped in caring. After years of illness and coping and working too much as Linda got sicker and sicker, Casper made it all okay. Until she couldn't anymore herself.

 

And so today our arms are carefully holding each other. Our hands can still hold tight, mine over hers now. She no longer has strength in her hands to even hold a cup. And as we face "a reality we did not agree to" (I think that quote is brilliant in it's simplicity and clarity, credit to Jenni Papp, RN), we will hold onto each other. There is more talking to do in good moments. There is grieving to do, together and alone and with our village. It was All Saints Day today. I shed tears for Linda, and for Casper. I will again next year.