Respite

My poor Dan is running himself ragged taking care of me and keeping my meds on schedule. My next dose is at 3:45am and I don't need food with these, so I am on the couch so I can take these on time and he can sleep until 6:15am when it's time for whatever comes next. I'm kind of like a new baby. He's trying to rest when I'm asleep. Problem is, I fall asleep at the drop of a hat and sleeping for an hour helps me. It takes him 20-30 minutes to fall asleep so this is really taking it out of him. My sleep schedule is already completely jacked up, but I have plenty of time to fix it. I'm trying to help him preserve what is left of his so he is ok to go back to work on Monday night. 

It's a hard place for me to be in that I know I am such a burden to him right now. When I knocked my glasses case on the floor, I couldn't pick it up. I mean, which is worse right now, squats? Or bending over? So I have to leave it for him. I can't get the tea pitcher off the bottom shelf when it's full. I got it when it was only a quarter full, but even that might have been a bad idea. I can't dig through the fridge to get food to make my own meal and I'll be worn out before I'm done cooking if I could. 

He can't go anywhere because he's afraid I'll need help and he won't be here. Livi is house sitting, but, even so, she realized how hard I am on him right now and came home for the evening to hang out and do dishes. 

I'm blessed that he loves me and doesn't think twice about doing what needs to be done so I can heal. He doesn't resent or begrudge my need for help. I love him for that. But less than 48 hours after my surgery, he already needs respite. 

This brings home two points for me in a way they haven't hit home before:

1. I need to think of a good way to thank him and show him what it means to me that I can count on him so completely. How much I appreciate the partner he is everyday, and not just when things get rough. I need to make sure he knows how much he means to me, all the time. I mean, I try not to take him for granted, but it is a reality of human nature that it happens. I need a plan to help me do better. 

2. Momma has been taking on more and more burden every day, for less and less of Daddy, and more of this new guy, over the last two years. She has had no respite. If I needed a reminder or proof of how strong she is, what a true bad ass she is, how far she will sacrifice herself for those she loves, I've gotten it. 

As hard as it was knowing that Daddy had to go to a nursing home, we had to support Momma to protect her, from the physical wear and tear on her body, as well as the emotional abuse he was putting her through. 

As much as Dan loves me and will take care of me as long as I need him to, two days is wearing him thin. It's amazing that there is anything left of Momma.

But as amazing as my Momma is, she is not alone. There are so many other men and women running themselves into the ground taking care of someone with either a chronic or deteriorating condition. Unable to afford staff to come into their home. Afraid that unknown staff would steal from them. Afraid of what a new person would do to the already unstable dynamic of the day to day. Not ready to let go of the loved one who is already gone in so many ways. 

The long term care sent pics of Daddy smiling and playing pool in his new home. That makes it easier, but really, there was no other choice. He was killing Momma. He would never have wanted to be the burden for her that he became. 

Alzheimer's has not only eroded my Daddy to a husk and then filled his body back up with some pod-version of the man who raised me, it tried to take Momma, too. It is a swirling vortex of negative energy, ready to swallow up as many of us as it can get. My sister, Shay-Shay, who has been to all the appointments with Momma & Daddy and helped get Daddy's meds at the lowest cost. Me, pre-planning funerals and working the KanCare process so Momma will still have enough money to get by before the LTC expenses suck her dry. My other siblings, missing those last glimpses of Daddy but unable to do more due to finances and physical distance. My kids, neices and nephews, knowing their grandpa is fading away. Their kids will never get to know him except in stories. 

Alzheimer's has devastated my family but it will not destroy it. This family pulls together. So many other families have not been so lucky. 

This is why I am Walking to End Alzheimer's. Far too many families are falling apart. Far too many caregivers are sacrificing themselves for a stranger in a loved one's body. There has to be a way to stop this. I'm going to fight the best way I know how. Please join me in whatever way you can. 

http://act.alz.org/goto/TeamSparky