Mishaps and Miracles in Caregiving

 We have so many wonderful visitors.  And honestly many days they keep me going.  They remind me that there is a world out there I used to know.  One not full of wheelchairs, adult bibs, lifts, and meds.  Days you can plan to go and do. Just go and do.  Schedules that don't include 20 extra minutes to get wheelchairs in and out of the van.  Picking restaurants based on everything besides handicap friendliness.  Some days I wake up and I think of my family and friends and I suddenly realize that they are living normal lives.  They are deciding whether or not to get up or spend more time in bed.  They are relaxing with a cup of tea or coffee. Maybe scrolling through the news.  Or just gazing out the window at their birdfeeders.  Later they'll go shopping, or for a ride. Watch some tv or go out to lunch with friends.  Choices. They have choices.  I am having a hard time remembering waking up and having choices. 

 I wonder... My husband is always doing things that make me worry. Things that send me running to my computer and seeking assurance from Dr. Google that he is not regressing, getting sicker, hitting a wall he is not going to be able to climb over. Having a lethargic day after a stellar day, seeming confused about something, having a difficult time standing in his lift.  I have tried so hard not to allow anyone around us to believe anything short of his recovery. No negative Nellies. No setting the bar low. No using poor expectations as an excuse for poor outcomes.  But in my darkest moments I worry. Am I fooling myself? Is this our life now? Are my days never going to return to anything resembling my old life?  Or am I now to spend my days managing medications, emptying commodes, and fetching the endless array of things he needs but but can't get up and get himself.  Is my life set to be jammed with request after request to stop what I have just begun to assist ...

 The Many Faces of Progress Most of us imagine progress as a linear line that goes straight up. In algebra class y= x+b was a 45 degree slope. Beautifully moving straight up to the right. No dips, no regressions.  But in real life, certainly in rehabilitation for a person recovering from extreme deconditioning and heart failure, there is no straight line.  Rather the line is one of promising ups and frustrating downturns. Peaks and valleys.  In the CICU the watchword was two steps forward, one step back. But I thought I left those days behind. We've been home just over a month. In the first few weeks it seemed like the best possible move. Magic set in; improvements in mood and alertness were automatic. My husband seemed to bloom. Everything seemed possible.  Now we are in real life land.  A new medication is making him drowsy all day and I worry that it is not the meds but his heart worsening. Even if it is the meds the end result is that he is less availab...

 As we walk through life we travel many roads. Love, loss, change of many types. We grow and change. If we're lucky we have people around us who share our love, celebrate our successes, and support us through our grief.  But the basic truth of life is you walk your path on your own. All of those people make it sweeter, easier, and some days possible, to make it through the day. But at the end of the day you have to have self-love to celebrate your own wins, and you bare your burdens in the darkness of night alone as well.  I have found this year that  every person who emails me, offers a kind word, comes to spell me for a few hours, or makes my husband smile, makes my life a bit sweeter. There days these gestures reduce me to tears. Other days they make me smile.  I am learning to live with gratitude. To take.  I have never said yes to offers of help. I've always fashioned myself as a helper. Maybe it's a middle child thing. I don't know. But two weeks ago ...

  When Company Comes Let's face it.  There's company. And then, there's company. My sister came for four days. And she was company.  Not the fancy kind for whom I had to plan three course meals and days full of interesting things to do. Let's face it. Those two things are so far beyond me right now that it is laughable.  But she was company.  The kind that quietly let's you know someone else is there.  The kind that gets up and gets what they want to eat without asking. That empties the dishwasher when it's clean and changes the bed when she leaves.  The kind of company that giggles with you when you make seriously stupid errors because you are so tired from being up all night caregiving.  This sister has a way of honoring your troubles without being saccharine. She listens and nods. She doesn't offer advice at every turn. I have plenty of advice. What I need is someone to hear me.  She schelped 50 miles with me to get my husband to...

 Blessings  Today I focus on my blessings.  Today I have had a relatively full night of sleep. I am groggy, not from lack of sleep, but from being well-rested. It feels delicious.  I know I am lucky. That some caregivers never get this respite. But I am selfish and I will take it.  Every night my husband and I write in a journal my daughter and granddaughter made for him in which his lists the things he is grateful for, looking forward to, and goals he has.  Today I am grateful for so much.  The home healthcare worker that is here is wonderful. A young nursing student. Gentle, yet persistent. She does dishes and prompts my husband through his exercises. One of the few people outside of family I feel comfortable leaving my husband with if I want to leave the house. Such a gift.  My husband is making slow but discernable progress. People who haven't seen him in a while notice improvement in his speech and strength. He stands up in the lift faster an...