Late last night a local radio station posed the question, “if you could relive a past day of your life, any day of your choosing, what day would that be?”
A thought provoking question to be sure; depending on where you are in your life your answers could be endless or perhaps a certain day or two instantly comes to mind.
Due to my parents’ decline I’ve been looking back a lot lately, capturing and storing memories. The past few years have included a great deal of heartache to include the loss of several immediate and distant family members along with the death of our family pet. To answer the question of what I would live over it is tempting to want to leapfrog past more recent years to a relatively calmer period.
But, if I could relive any day of my life it would be… today.
Mind you, today wasn’t the easiest of days. It involved numerous home chores both physical and mental. I had to work through several of those “little” questions posed by my children. You know, the ones which sound innocent but carry enormous repercussions. I made preparations for my next visit with Mom and Dad. Dad recognizes almost no one anymore, including his wife of 66 years. He’s such a gentleman that he gives polite answers to questions but when pressed will admit doesn’t know who any of us are or he will just stare blankly. Mom recognizes relationships but no longer has the language skills to properly label them. That’s why I go from being her “son”, “brother”, “husband”, to “nephew”, all in a single conversation. She knows she’s connected to me, whatever that connection is called. She too, however, is experiencing more and more moments of total non-recognition.
So why repeat today?
Because today was the culmination of all that had occurred in my past. The lessons God had taught me, the experiences He allowed me to have and brought me through. I wouldn’t have been me today without all of the “todays” which preceded. My past had equipped me for the task at hand. While I could wish it had been easier or that there was another way (God knows I wish my wife, brother, niece and dog were still alive), if I were to change the past, today wouldn’t have happened.
Today I got to love on my family to the best of my ability. I was far less than perfect, the circumstances by no stretch of the imagination ideal. Today my family loved me, each in his or her own way. They were far less than perfect, the circumstances less than ideal…
… and I wouldn’t mind reliving the day all over again.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Sharon
Jo, I love your insights on how today and our yesterdays are used by God to make us whom we are. There is a certain sense in which we need to forget our past and move on, but in many ways we need to remember our past as in them we learned lessons that made us whom we are today and will be tomorrow.
G-J
Oh, Jo, WOW. You beautifully share insight on what makes “today” today. You are right that it is the culmination of every day we have lived and experienced that brings us to our abilities to handle and best face, today. If we went back in the past and relived it, we’d undoubtedly do something or say something differently and then who knows how we’d be today.
Jo, your postings are always thought provoking.
Denise
Jo, your writing takes my breath away and your viewpoint leaves me speechless. Thank you. We got here, today, and we get to be here, today. We live for today.
Tom
Why must I always be such a downer? I suppose because I come to this site when most in need. Groundhog Day is my wife’s birthday, 47 now, my cancer garegivee for the past 12 years. And it was like the day that is re-lived over and over. I was standing right behind her, when a wave of pain in her head almost knocked her down. Thankfully, she was only inches from the bed. Today is day 4 of a new kind of migraine, and all I can think of is brain metastases, to go along with the spinal and bone metastases. Like so many other days of these years, her special day was ruined by pain and illness. All the pills, so many pills, useless. Our daughter had made plans with her mom and I to go out for dinner and a movie – an event we can pull off extremely rarely. Plans cancelled, mom can’t go out, much less eat, because the headache is so bad she is throwing up. This seems to happen almost every time we make plans, so we just don’t do that much anymore. Lisa made it to one school play in all these years. I went to all the plays, and competitions, and practices, and lessons alone. So I took our daughter out for a quick dinner and a bad movie, just us two, again. Then, one more in an endless series of nights lying next to my beloved, unable to touch her, unable to be touched by her. Unable to do anything to make her feel better, but without knowing it, able to make her feel worse. I am crying like a baby inside, so incredibly lonely as I lay next to my wife, as she suffers. The inches that separate us feel like miles of burning desert or raging sea – uncrossable, yet right there in front of me. Again and again and again. What have I learned? I have learned what it feels like to be hit with an emotional sledge hammer that never stops. A perfect symbol, on her birthday, of what caregiving is for me, and what cancer is for her, and how it affects our children. Another day of torture.
Jo
Tom, my first response and advise would be regarding those tears you are crying inside… let them out. For yourself, for your wife, for what your life has become, cry openly, cry hard if necessary, cry long and then do it again. Trust me, Man-cards still work even when wet with tears.
Please know that I wrote my blog from a perspective of five years after the death of my wife. I could not have written it any sooner. When my wife was in a coma and I watched machines helping her breath in ICU and experienced one emergency code after another, I couldn’t have written this. When I visited my brother in hospice and watched him gasp and fight just to take a single breath; when my children and I sank into a suicidal depression after my wife’s death; when I was called Super Bowl Sunday several years ago and informed that my niece was dead; when I had to have my wife’s dog put down due to cancer right after her death; I would have been hard pressed to identified a single positive to my existence.
I don’t have a list of things that I have learned, but I know a Faith which as been forged by fire. I have a strength and perspective that is serving me well as I now support my Mother and Father even as they are dying in front of me. I know this but I wouldn’t want to be anywhere else but at their side. I’ve been able to support not only them but others in my family as well. Again, five years ago, I could barely climb out of the bed. I know that emotional sledgehammer well. I think an impression of my forehead is still stenciled on it.
It is awesome that you come to this site when you are at your worse. What an honor you’ve given us to stand beside you, arm in cyber arm, and walk this journey together. You’re not a downer, you’re a brother.
Bette
Hi Jo,
Thank you for sharing your thoughts and insights here – I always learn and am pushed a bit to reflect.
I love that you’re “storing memories” and that you are good, and right where you are suppose to be.
Hoping for many wonderful memories and the reminder that there are more to come…more that will keep us in a very special place.
Tom
Thanks, Jo. One million thanks!
I just wrote 5 paragraphs of additional venting, but it all disappeared when I tried to post it. Probably for the best.
Yeah, I cry a lot, too easily. Just not around her. I feel on the edge all the time.
I can’t tell you how good it feels to be called a brother, to be accepted at my very worst. words fail…
I beat myself up too much, as every single remaining friend has told me, because deep down I just want this to be over,and there is only one way for it to be over. I feel guilty about that, and that I don’t/can’t desire more time with her, because that time is just pain. I am not doing my jobs right, or well, which always used to be a source of pride and accomplishment. When my wife Lisa feels worse, I feel worse, because I hate to see her hurt so badly, hate to see all these new crazy awful problems. Then when she feels better, I feel worse because I know we have moved further away from it being over. What’s up with that? I get the feeling you understand this. I still don’t like it, and yet that has been the deal for so many years. My job makes me travel, but I don’t want to go, and I put off trips. Then I sit around the house and don’t work.
I am not getting the help I know I need. I am not understanding my own feelings. I guess this is a beginning, though – just finding a place to run to, where everyone understands.
All this negativitity is really a cry for lost love, hopes, dreams – and compassion for the one I love best, whose life has been unending pain for so long. Man, I feel drained.
OK- mind’s a blank now. But thanks and thanks and thanks to you. Any advice is so welcome. You made it. I will make it. But I need help.
Jo
“…I need help”
Tom, H-U-G-E step that you’ve already taken. I’m jumping up and down cheering right now, Tiger Wood’s fist pumps, the whole nine yards! So often us men fight admitting that simple but crucial fact, we can’t do “life” on our own.
I do understand the guilt of wanting this to be over. It is very common in fact, very normal and makes perfect sense. Being able to identify and list the things that are changing and that you feel you’re losing, “love”, “hopes”, “dreams”, “compassion” this is so important to processing and coping.
Something that has helped me a great deal and that this site will offer for you is the opportunity to look beyond yourself and see the pain others are also experiencing. It is so easy and perfectly natural to sink into ourselves when we’re under heavy emotional load. We start thinking we have it worse than anyone else. In reality there is always someone worse off than you. Hard as it is to imagine, someone wishes they were in your shoes right now. Just reading some of the posts on Caregiving.com will take your breath away and humble you. Doesn’t take away or minimize your very real circumstances but you probably won’t feel quite as bad about them.
I have this theory which in part is based on stereotypes, but it is my theory and I’m sticking with it
. Men are drawn to strength. Absolutely we benefit greatly from nurturing and relationships but often what pulls us in is seeing and challenging something/someone bigger and stronger than ourselves. Think of NASCAR, hockey, pro wrestling, and football. They’re loud, big, and represent struggle and force, most of us love that. Even though we can’t drive as fast as a track racer, or hit a 100 mph slap shot or stand in the Octagon and go toe-to-toe with the latest UFC champion, we love and admire those who are stronger than we are.
Even in men who are totally not into sports, I’ve observed that they too are drawn to strength in some fashion be it intellectual muscle or artistic might. No one has ever describe Michaelangelo as a big man but look at his sculpture of David or consider the scope and scale of the Sistine Chapel.
Caregiving can look like an 800lb gorilla and I sometimes find myself hungry to find someone, anyone who’s stood up to it, looked it in the eye and spit in it. This is an intense struggle which is bigger than me and while I NEED frequent encouragement, support, the occasional hug and definitely prayer, I WANT to see someone who’s managed to stand up, shoulder the load and stay the course.
Amazingly Denise has managed to gather many of them together on this site, fellow travelers who can offer both encouragement and strength. If I offer any, I’m humbled.
Tom
Nice, Jo. I like it. A great friend told me just before he died that I was the strongest person he knew. I didn’t know how to take that. I was surprised for sure, worried that maybe I am faking it, showing more cool and normality than I feel. But I think he meant that he was amazed that I am sticking with this, refusing to run, regardless of any of the crap that has come my way:
via work (getting fired, then taking 3 lame jobs to pay the bills until I got back into a decent gig in my industry)
via kids, (teenagers have some very special issues and challenges when their mom is this sick, and mine had plenty of serious ones – sounds like you know all about that)
via family (they don’t understand, and seem to forget the details unless I basically hit them in the face with them)
via friends ( who often just stop calling because they can’t bear to hear the bad news that I refuse to sugar coat anymore – applies to some family as well)
via my own self (who longs for the days of happiness, and adventure, and love, and sex, or just making out and feeling so close, I miss her so much, even though she is still here. I guess I miss what/who she was.)
No, no matter how much I have to take, I am not running, even though I want to. I will not. Maybe that’s what my buddy meant. When he died, I hit bottom, majorly messed up for about 6 months. But I came back. I will keep coming back, because I have a long way to go. I get knocked down, but I get up again, and I won’t ever, ever stop. Never. Keep hitting me, Life, I don’t care how bad it hurts, or how long it takes to get back up. I WILL get back up. I WILL keep staying and fighting AND dreaming.
Sometimes, I do let myself think positive thoughts about the future, the dreams have been deferred and altered, but not really lost. The hopes are still there, just pushed to the side, changed, but not really lost. The love is still there, even if it can’t be expressed the way it once was. The love is not lost.
I do admire strength, and developing my own was a lifelong pursuit until Lisa got sick. I had worked on my body, mind, and spirit my whole life. Then (and now) I suppose I am just using what I was previously developing, though it had not yet been seriously tested. Maybe that’s what my friend saw. But I felt stronger when I was noticing positive changes in myself. Now I just notice the frustration and depression. But I do see the endurance, too. But others don’t see much of my pain, because I only show it to a few rare souls. And I show it here, which is all rare souls. 100% : )
But maybe part of being kinder to myself (everyone’s advice for me),or using myself as one resource for the help I need, is allowing me to appreciate my own good qualities, and my own strength. Some positive self talk. I AM strong. I KNOW that I worked on that forever. And I KNOW that work produced all kinds of positive results. My faith has ALWAYS been real. There ARE people – friends, family, colleagues, and strangers who DO help, who want to help more, who are on my side. Yes, they are on my side.
Last night, I talked with Lisa about my pain, her pain, our pain, and the 12 years we have been suffering. I rarely/never talk to her about how much this hurts me. But I did. Just letting it out, in a nice way, with mega compassion for her, along with some for us, and some for me seemed to help. It made her cry, because she never wanted to put me through this. Finding a way and a time to express some painful truth was not easy. But pretending is worse. She has made a lot of good things happen in the one day a week (on average) that she can function a bit. Is that little bit worth everything else? I don’t know, yet. I think I will understand a lot more down the road. I do know that it is something, and not nothing.
OK Jo, I am feeling better. I know I can do this, I know I can keep on keeping on. And I can find some things to be happy about, too. I am SO grateful for your words, and your caring. This is why I come here. Not just to cry and vent and scream through a keyboard. I come for the strength of this community, which is powerful and amazing beyond belief. I do need to be reminded often that I am not alone, and that others truly understand. We understand. We WILL make it, no matter how hard life wants to make it for us. And if we ever wonder why we have to suffer, one beautiful reason is that we can help others with what we have learned. If we can lesson the load of the next person, just a little, when most needed, we are doing something way bigger than ourselves.
Thanks Jo, Denise, EVERYONE.
I’ll be back with more whining and venting later. Now, I am feeling strong.
Cheers, All !
Anne
Today is the day that the Lord has made. So agree. Today is the day I want to be in.
Little introduction. Our son is 32 , has severe cerebral palsy and lives with my husband and myself.
http://onegirlfriday.blogspot.com/2009/03/caregiver-prayer.html
Trish
Jo, You are an inspiration. Your beautiful post and then the follow up posts and help you’ve given here are a gift to us all. Thank you.