Tag: Chronic Pain

I Am Fucking Exhausted…The 6th Stage of Grief

~ Kai Raines ~ Leave a comment

I did a 5-part blog and podcast on grief last year. I’m sure you know the stages: denial, anger, bargaining, depression, and acceptance. I think there should be a 6th stage of grief…EXHAUSTION. Because grief is fucking exhausting! 

My whole body hurts with how exhausted it is from pain. This 6th stage is for any loss, any grief. I’ve written about chronic pain because I know chronic pain…and it is exhausting. I’m exhausted. I woke up this morning because I was in pain, and after a full night’s sleep I am still exhausted. Every ounce of me is exhausted. 

My dad died two months ago, and I’m exhausted. Exhausted and frustrated because I don’t think I’ve even begun to grieve his loss because I don’t have the time or the energy. I boxed up all of his clothes and donated them to hospice. It’s strange packing up someone’s life and giving it away. I don’t want all traces of him to be gone. My sister and I kept things that were important to us and things we thought would be meaningful to our kids. I had a dream that my dad’s baseball cap, which has been hanging on the kitchen chair for the past year, had moved to another chair. In the dream that was my dad letting me know he’s still around. And so, his hat hangs on the kitchen chair, waiting for him to move it. I’m really tired.

My mom has dementia and lives in a skilled nursing facility. She has good days and bad days – and they are either REALLY good or REALLY bad. Today is bad. I am the enemy she fights against. She says mean and hateful things to me. She hangs up on me several times a day…and, although it’s pitiful, I’ve tried to beat her to hanging up…although I won’t just hang up on her. I try and end a negative conversation first but she’s always faster than I am. It’s exhausting. I’m tired of trying to calm her and placate her. It’s exhausting. She’s exhausting. I found myself on the couch crying and telling my wife that I try to do everything for her but it’s never enough and it’s never right. I’m so fucking exhausted. I can’t even touch any of the grief I feel about her or my dad. It would require way more energy than I have – maybe more than I’m willing to give at this moment.

This week I found out that besides a separated AC joint in my shoulder I also have a torn rotator cuff. That helped explain the length of time it’s taking for my shoulder to heal and the amount of pain I’m still experiencing. I packed up my dad’s clothes, as I mentioned, and am in the middle of taking care of the financial stuff for both of them. We’ve also been trying to move my mom to a different facility where she would have more people she could interact with. I had the move all set up until the administrator, of the current facility, decided he knew what was best for my mom and told her she should go to assisted living. Of course, he didn’t tell her she can’t afford it and he didn’t consider her safety or needs because he doesn’t know her. He won’t do the paperwork for the transfer and now she only wants to go to assisted living. So, I’m having a pointless fight with this administrator, who is overstepping his position, and my mom is refusing to move…so that’s all fucked. I don’t really know what to do, what I do know is I’m exhausted. 

I think exhaustion is the 6th stage of grief. If you’ve ever experienced grief, it’s obvious, right? Exhaustion is the overlooked stage. Maybe exhaustion is the last stage coming after acceptance…you’ve come to terms with the loss but are so wiped out. You probably didn’t even realize how exhausted you were. I think exhaustion is woven in between all the other stages. There’s denial, exhaustion, anger, exhaustion, bargaining, exhaustion, depression, exhaustion, acceptance, exhaustion. It’s exhausting just reading all of that. And all those stages come and go as they please. I’m not sure how long it takes to feel like you are on the other side of grief…maybe there is no other side. Maybe we just adapt to the loss, and it becomes incorporated into who we are.

I am learning that exhaustion does not go away just because I accept a situation. Accepting chronic pain doesn’t stop me from waking up in pain. It doesn’t end the days where I am in so much pain, I’m afraid to take a step, because I’m scared of falling. It doesn’t stop the frustration of not being able to lift one leg to step into shorts because it’s agony…the lifting and the standing on one leg. It’s relentless. Its fucking exhausting. 

Accepting that my dad died doesn’t end the work that needs to be done. There are details to take care of…I didn’t realize how many details. And acceptance doesn’t help me deal with my mom’s emotions and grief. She was exhausting before my dad died. And accepting my mom’s dementia doesn’t stop the constant phone calls and complaints. It’s 10 am and I have already been hung up on 3 times. Acceptance doesn’t change that. I am exhausted. And in that exhaustion, I am trying to do the right thing all the time. But I don’t even know the right thing all the time. I am doing the best I can, although it never seems to be quite good enough. There’s always more – more to do, more to fix, more to appease, more to be responsible for…even if I’m not.

So, I’m exhausted, big damn deal. You may even be thinking, “Go take a nap!” This is not exhaustion that a nap helps or resolves. This is exhaustion in every cell of my being. Exhaustion to the bone. Now my natural reaction to all of this is to shut down emotionally…pull myself up by the bootstraps and march on. I don’t even own boots, but on I march. I’ll keep going because I don’t feel like I have any other choice. I’ll be responsible and keep moving forward…that’s what I do. As I write this I realize, I have totally shut down my emotions. I haven’t been feeling much of anything except pain and pressure. Pain in my body and pressure to keep doing…whatever needs doing.

I shut down inadvertently. I didn’t even realize it until now, writing about grief. A grief that I know I have not even touched…yet. So, what does shutting down do for me? It definitely does not end the exhaustion. It might even add to it because I waste so much energy trying not to feel. It cuts me off from myself and from caring for myself. I can’t care for what I refuse to see or feel. It creates a barrier between me and the people I love. It keeps them at a distance so that even if they could help, I’m not allowing them to. It causes doubts and confusion. It makes problems seem bigger than they are…it can make grief seem bigger than it is…or maybe more unmanageable is a better way to put it. I am fighting what already is…everything I’ve written about is already reality. I waste my time and energy longing for things to be different than they are. Now that’s exhausting…a waste of energy and exhausting.

So, let’s be real…sometimes I feel hopeless. I look out in front of me and fear that I’ll always feel as exhausted, sad, confused, and in the same pain as I am right now. But here’s the thing, I have no idea what the future holds…not 10 years from now, not even 10 minutes from now. There’s a line in the Indigo Girls song, “Closer to Fine,” that says, “And the less I seek my source for some definitive, the closer I am to fine.” I long for things to be stable and solid…something I can hang on to, solid ground to steady myself. But everything is changing all the time. If I can release this longing. Release this need for certainty. If I can lean into what scares me, then I can allow what is to be…as it already is…without all the kicking, screaming, and fighting. And I am closer to fine.

If I can stop looking for an answer, stop thinking I need an answer to save me…stop looking for the definitive…then I am fine. I am fine because I am here in this moment, just being in this moment, and I’m fine. When I try to change the past or arrange the future, then I’m really fucked. I’m fucked because I can’t but I’m still trying to convince myself that I can. I think maybe the answer is that there is no answer. There’s not one definite answer that works for the world. One answer that everyone is looking for. I don’t need an answer. I need a moment-to-moment strategy to live my life. And here it is…Stay. Just stay. Stay where I am. Stay with whatever feeling or situation I have in that moment. Just be where I am. Just be who I am. Just fucking stay. 

I need to release myself from the idea that I can take care of everything and everyone…I actually try to do that. Release myself and stay with whatever is there. I might feel scared or relieved, possibly pissed off, frustrated, discouraged, envious, abandoned, used, manipulated…you name it and stay with it…right where you are. Acknowledge whatever is there and stay with it. Look at it. Be curious about it. Be prepared to learn from it. We learn when we stay. We learn because we stay. Stay until you don’t need to anymore. And then, as Dharma used to say on “Dharma and Greg,” put it in a bubble and blow it away. Let go.

There you have it…my 2 strategies for life…Stay and Let Go. I knew I could be brief…too bad I didn’t start here; you could have been done in one minute. Seriously, it’s not bad advice. I’m learning to follow it myself. And behind the staying and letting go, always be guided by love…and some gentleness. It takes time to learn, and grow, and change. Love yourself through it. Love those close to you through it. Love those you’re not that crazy about through it. And people you don’t know or don’t think you care about…love them too. The only thing that will change the world is love. So, get to it. The world needs love. Desperately. 

Love must win…always.

Happy New Birthday Year

~ Kai Raines ~ Leave a comment

I recently celebrated my 63rd birthday. I have been thinking for a while now that each person’s birthday should be their own personal New Years Day. Instead of some forced midnight tradition on January 1st it should be an individual occasion, shared with people of your choosing. Certainly, when we’re born that’s the original new year, new day, new moment. Every single thing is brand new. You may have a muffled recognition of some voices or sounds, like people talking under water, but everything else is new. Every thing, every person, every experience brand new…that’s exhausting. No wonder babies sleep so much. 

Seriously though, on my Happy New Birthday Year I like to think about the past year and what I’ve learned and to think about where I’m headed, what I want to learn, what I want to change, what I want to be (if I ever grow up), not so much “what” as “who” and “how” I want to be.

What did I learn? That I can’t control everything and everyone, although sometimes I really want to. I don’t know what is best for everyone in every situation, although I often think I do. Other people’s choices don’t define me or make me good or bad. Sometimes things just are how they are, and everyone is doing the best they can, even if it’s not what I want. I continue to learn about loving, forgiving, and letting go. I learned more about being honest without being mean. Sometimes the truth is painful, but it doesn’t need to be intentionally mean or hurtful. I learned that people are allowed to have their own feelings and to feel them, even if I don’t like it or am uncomfortable with it. People having feelings is not an attempt to hurt me. Turns out I really am not the center of the universe…damn it. 

Continuing on…I’m learning that I can’t force people to have relationships they don’t want or to love people just because it makes me more comfortable, and I want them to. I get to have feelings too…all of them, even if my feelings make other people uncomfortable. It’s not my job to make people feel good, although I really like to. And people make mistakes and fuck up sometimes intentionally and more often accidentally. Either way they are still good people. And I don’t think it’s so much intentionally as it is unconsciously. Most people don’t set out to intentionally cause another person pain, but we do it all the time. That doesn’t make anyone a bad person. It makes us people who lack awareness. Awareness of what we are doing, why we’re doing it, and how it may impact other people. So much of what we do is habitual, and we don’t take the time to investigate why we do what we do. Everyone wants to be happy, sometimes we look for happiness in fucked up ways.

This next year I need to continue learning all the same things, in different configurations, but the same general ideas. I need to understand and change some of my habits, for example shutting down when I experience conflict. I do not like conflict, but it happens, and I need to be present with it. I need to feel my feelings even when they scare me. I need to worry less about my own comfort and more about my ability to be honest with myself and others. I don’t like other people to be uncomfortable, but I need to be honest and then allow people to manage their own emotions. Other people’s emotions are not my responsibility, regardless of what they think, or how guilty I feel…thank you Catholicism.

I need to stop allowing other people’s needs or wants to push my needs aside. I am allowed to need. I am allowed to meet my needs. I can be a priority to myself. It isn’t selfish to take care of myself. It’s selfish to expect other people to meet my needs, especially if I haven’t voiced them. People who love me do not need to read my mind. I can be open and honest about how I feel and what I need.

Here’s something real…I have 10 tattoos. I once had someone tell me I was the last person they ever thought would have tattoos, not sure what that meant. Anyway, I love when people explain their tattoos to me…why they picked them, what they mean. Now it turns out that these tattoos of mine cover everything I’ve learned, am learning, and need to learn. I watched a movie once that talked about our bodies being primarily water. A Japanese scientist,Masaru Emoto did an experiment by taping a word on the outside of a container of water to see how that word or intention might affect the molecular structure of water. He found that positive words, like love and kindness, formed beautiful, symmetrical crystalline structures when the water was frozen. When the words were negative, like hate and anger, the molecules formed disorganized, asymmetrical molecular structures.

So, what are the messages I put on my watery body to affect my molecules? In no particular order, they are the divine feminine or ground of being, endless possibilities, wealth, fearlessness, courage, the present, a lotus, equality, and my own symbol for integrity. It turns out I’ve put permanent symbols on my body of all the things I want to learn and be. So isn’t it serendipitous that any time I need a reminder I just have to look at myself. And don’t we always need to look at ourselves? The answer is right in front of me, well in front of me, or behind me. That was clever of me, and kind of coincidental.

Now the meaning of all those messages…Prajnaparamita, the great mother or ground of being, tattooed close to my heart…my ground of being. Not a white man with a beard, as God is often depicted, but a great mother, a divine feminine energy, a spiritual grounding. The courage to be present. Fearlessness, not having no fear but moving forward regardless of fear. And I am capable of so much…there are endless possibilities for me. Integrity meaning to be intact and whole. Wealth, not just physical wealth but spiritual and relationship wealth. A lotus, because it reminds me that out of shit something beautiful can grow…it doesn’t have to, but it can. That brings me to allowing. Letting go of my desire to control everything and allowing what is to be. Not fighting reality…a frequent pastime of mine. And equality…of course equality for all people, always. We should all have equality tattoos because that should be the ground under everyone everywhere always.

Let’s be real, I need to be more courageous. I think we all need more courage. I need to be courageous enough to be present in my life and the lives of those around me. I want to live fearlessly allowing what is to be. I have two more tattoos I want to permanently be a part of me, generosity and love wins. Wealth in any area of my life means so much less if I cling to it instead of spreading it around, generously. 

Love, integrity, allowing, spiritual grounding, generosity, courage, and more love. Love should the beginning and ending of everything we do, think, and are. Now stop, rewind, pause, and repeat, repeat, repeat. For love to win it has to be on continuous repeat, forever. In the end, all that matters is how we love people. May our ability to love, growbigger and deeper each Happy New Birthday Year…because love must win…that’s what’s real.

Only If You Let It

~ Kai Raines ~ Leave a comment

We’ve all heard the saying

What doesn’t kill you makes you stronger

You can wear it as a badge of honor

For all you’ve survived

But only if you let it

 

I prefer the saying

What doesn’t kill you makes you kinder

Taking difficulties and transforming them

Into kindness, compassion, gentleness

Growing softer instead of harder

But only if you let it

 

Circumstances don’t sweep into our lives

Bend and twist us

In ways not natural to us

Contorting our form

Forcing us to be remade

Or maybe they do…

You were married, now you’re not

You could walk, now you can’t

You used to remember, now you don’t

You had a house, now it’s gone

Change happens

Whether we like it or not

We don’t control change

It’s as certain as death and taxes, right?

 

Change happens with or without us

We don’t have to be ready

Or agree

Give our permission

When it’s done, it’s done

You can fight it

But it already happened

You’re fighting reality

Shadow boxing as if you see a foe

But it’s just air

We’re the fighter and the opponent

You against you

But only if you let it

 

To become stronger, kinder, anything “er”

We have to allow it

Surrender to a process we’re unsure of

Submit to transformation

Lean into the sharp edges

The places that scare us

The unknown and unwanted

The uninvited guest

The pain in all its forms

 

Now all the possibilities

All the adjectives aren’t helpful

We can become meaner

Nastier

A complainer

Unforgiving

Self-centered

Withholding

Miserly

Detached

Ungrateful

Philophobic

Not stronger or kinder at all

Quite the opposite

But…only if we let it

 

We don’t control change

We do control transformation

When something hurts

We can harden in response

Or we can soften

Become curious about the pain

Invite it in to teach us

Strength and kindness

Whatever else it has to offer

Lean in and allow

There’s so much to learn

So much to transform

But only if we let it

 

We decide

We can become so much more

Or so much less

Whatever we allow

We must let it

Broken and Beautiful

~ Kai Raines ~ 1 Comment

This morning I woke up in pain, actually I woke up because of pain. I hate waking up in pain and I wake up in pain every day. The degree of pain differs but not the fact of the pain. It makes me want to move and not move at the same time…because I’m not sure which one will help…maybe neither will. The amount of pain can’t be predicted. There’s the regular pain that getting up and moving might loosen up and help. Then there’s the wake me up pain from my elbow that goes from my shoulder to my fingers and from my back, that moves from my neck to my tailbone and shoots into my legs. It’s scary to start your day that way. Sometimes I just want to scream when I wake up.

I don’t always wake up because of pain but I do always have pain when I’m awake. Sometimes I wake up angry and sad. Pain is a hard way to start a day. Some days are better than others.There are definitely days I find myself wondering how I am going to manage this excruciating pain for the rest of my life. Now, I do tell myself to slow the fuck down and remember that I don’t have to live the rest of my life today. I just need to manage today…moment by moment…and sometimes that is hard enough. 

I found this shell on the beach one day. I fell in love with it because it’s broken but it’s beautiful. The break has healed, although the scar remains. It’s amazing really. The shell is still a shell, but it’s scarred. I am like that shell. We are all broken in one way or another. The world is hard, living is hard, and we all break, or get broken. I don’t think I’m the only person who feels this way. We all have things that feel bigger than us at work in our lives that we aren’t sure we can manage. Like the shell I found, we are all scarred physically, emotionally, mentally, spiritually…maybe in multiple ways. And like the shell that broke, we heal. We have scars but we heal. The scars help us remember where we’ve been and how we got to where we are today. We are broken and beautiful.

Now before anyone freaks out, please hear me when I tell you I am NOT saying that I need to be fixed. I am NOT saying that you or anyone else needs to be fixed. Being broken is part of being a human being on this planet. There’s a million ways to be broken…chronic pain, physical illness, mental illness, divorce, death, loss, a destructive relationship, a dying relationship, problems with children, health problems or mental health problems of someone you love or care for, aging parents, end of life issues, just being alive issues…the list goes on forever because we are individuals with unique challenges in our lives. Even if the challenges look similar, we are unique people who handle circumstances, and brokenness differently.

I love the musical, “Dear Evan Hansen.” It deals with the suicide of a high school student, the attempt by another student, mental health issues, depression, grief, loneliness, isolation, belonging…it’s got it all, because it’s fucking high school…and high school has it all. At one point in the movie, Evan Hanson’s mom talks to him about when his dad left them and how overwhelmed she felt. She says, well, she sings, it is a musical, “and the house felt so big, and I felt so small….” I feel that way with pain sometimes. The pain feels so big, and I feel so small…but it isn’t just physical pain, it’s the pain of human existence…when it all feels so big, and I feel so small…what’s a human being to do?

When I share my brokenness with you I’m allowing you into my core… the scariest, most sad, hopeless, vulnerable places inside of me…the places where I am me, really me, unfiltered. Exposing my most delicate places, is not an easy position to be in or tolerate for very long. We are broken and beautiful…I am broken and beautiful. When we can share ourselves honestly, the brokenness isn’t so scary…because I am not there alone. Our brokenness makes us human; it makes us real. I think we are perfect in our brokenness…our scarred selves. We are more perfect when we can share our brokenness with someone else. We have he potential to ease each other’s pain. Hippocrates said, “Divine is the task to ease pain.” Maybe we become more divine when we help someone by talking about our vulnerable, broken, scarred places. You see, I’m real, just like you…and the velveteen rabbit.

Kelly Clarkson wrote a song called “Broken and Beautiful.” I’m guessing she wrote it following her divorce. Anyway, in the song it says, 

“I never held my hand out and asked for something free

I got pride I could roll out for miles in front of me

I don’t need your help, and I don’t need sympathy

I don’t need you to lower the bar for me.

I know I’m Superwoman, I know I’m strong

I know I’ve got this ‘cause I’ve had it all along

I’m phenomenal and I’m enough

I don’t need you to tell me who to be.

Can someone just hold me?

Don’t fix me, don’t try and change a thing

Can someone just know me?

‘Cause underneath, I’m broken and it’s beautiful.”

Can someone just know me…just know me. That’s what I want. It’s what we all want. To be known…the good, the bad, and the ugly. But how can we know each other? We have to be still. Be still and know….there is no knowing without being still.  We can’t know something moving past us at 100 mph.  We have to stop and be still…be still to know…to know ourselves, our spouse, our children, family, friends, co-workers, people in this country or in this world…there is no knowing until we’re still. We have to be willing to stop…because if you know me then you can love me…but not before. And I’m worth stopping for…and so are you.

I have lots of scars on my body…stretch marks from having babies, knee, elbow, back, shoulder, and foot scars from many surgeries. And I have a lot of other scars that you can’t see, unless I show you. All those scars help to tell the story of me…how I became who I am today.  I don’t need to be fixed but I do need to be known. We’re all broken and we’re all beautiful. We are all worth the time investment it takes to get to know each other.  Those scars quilt together the fabric of who I am and what has shaped and influenced me…past pains and triumphs…current pains and triumphs. 

I do not need you to tell me what I need to do to get “better.” “Better” isn’t in the cards for me…management is. I’m not your project and don’t need to be told how to be me. I’ve got this. I’ve had it all along. I need you to know me. I need you to love me without trying to fix me. Allow me to show you the most tender and vulnerable parts of me, safely. Let me be tried, scared, hurt, disappointed, frustrated. Let me feel my feelings. Don’t create a situation where I need to say “I’m okay” for your benefit…so you won’t be uncomfortable. I don’t need your sympathy or for you to feel sorry for me. After all I’m fucking Superwoman.

Please don’t judge me, label me, and put me in a neat little box built to ease your own discomfort. Know me without the filter of what you think about my pain, your interpretation of my pain, or what you think you know about me? Be still. For the love of God, please, be still. You can’t find me if I don’t let you, and I won’t let you until you’re still. Your stillness allows space for me to trust you and for you to see me. Really see me.

Let’s be real…it can be lonely being in pain, being broken. But it doesn’t need to be because we’re all broken and we all have pain. We don’t need to feel alone. We need to allow ourselves to be seen…to be known. For that to happen, we have to do two things: be still so that we can know and then, allow ourselves to be seen. We have to be vulnerable and willing to take the risk of knowing and being known. “Divine is the task to ease pain.” Let’s do that for each other…ease each other’s pain. When we know someone we can love them…really love them. And in the end, all that matters is how we love people. Let’s make sure love always wins.

A Lesson in Letting Go

~ Kai Raines ~ Leave a comment

When I think of what makes up who I am, a large portion of that is my memories. My memories prove that I existed…I walked in this world. And hopefully I had an impact. We often think our mind is really who we are. Our ability to think, reason, remember, hold memories, have rational conversations, communicate our feelings or ideas, or just having ideas at all. Now my Buddhist studies teach me that there is no solid, permanent self…that’s a conversation for another day.

Memories give life meaning. Memories help us to feel like we’ve lived a good life…or maybe a tragic life. Memories stitch together the fabric of our lives…the up and downs, joys and sorrows, pain and trauma. Memories, in large part, tell us who we are. I know who I was born to, where I was raised, schools I went to, friends I made, people I’ve loved, marriages, divorces. We remember the births of our own children and watching them grow and mature into adulthood, maybe even have their own children. The framework of my life holds the people and events that I possess as memories. 

And why is this on my mind, you wonder? Because there is a tremendous growth in all forms of dementia in this country. We hear about Alzheimer’s most frequently but that is only one form of dementia. Dementia scares me. Losing my memory scares me. I have told my children (they are all adults…most of the time 😏) that as I age, if I reach a time when I don’t remember them then I want them to help me die. I can’t imagine anything sadder than not remembering them, or my wife, my grandchildren, friends…all the associations that create my life as I know it. Maybe I won’t remember that I don’t remember but still I don’t want to be around…I can’t imagine life having less meaning for me than being alone even in the midst’s of people I’ve known and loved my whole life.

Sometimes as people age, they become depressed or angry…sad maybe. Full of regrets about what did or did not happen in their lives. Dreams never realized, opportunities lost, failures of one kind or another…disappointments. I think we feel those things more keenly as we move through the latter portion of our lives. I guess that can make people mad. I get that.

My own observation of people is that as they age, they become more intensely who they already were. If you were unhappy your whole life you won’t suddenly be filled with joy. If you loved your life, you’ll love it until the end. Buddha said that we are what we think and that with our minds we create the world. I’m not sure I’ve ever read anything truer in my life. We will continue to live the life we created in our minds. So, what happens when you start to lose your mind, your memory?

The movie, “The Notebook”, is a story about the romance between two young people. These characters, Noah and Allie, marry and then in their later years find themselves living through the experience of Allie’s dementia. When Allie found our she had dementia she started a notebook. In that notebook she wrote the stories of their lives together. She asked Noah to read it to her when she couldn’t remember, and she would come back to him. The movie takes place in a nursing home with flashbacks of their love affair. Noah visited Allie every day, even though she had no idea who he was, and he read to her from the notebook. She loved hearing about the love story of Noah and Allie. Noah hoped the notebook would jog her memory and that she would come back to him, even for just a moment. It’s a beautiful movie…a real tearjerker. I won’t spoil the story in case there’s anyone on the planet who hasn’t seen “The Notebook” yet.

The thing that is so difficult to believe is that she really didn’t remember. People lose their memories. They don’t remember anything. Really? That boggles my mind. How can that be? How can I still be me without any memory of who I am or how I got to where I am? How is that real? Where do all these memories go…somewhere in “the cloud,”I guess. It’s such a mystery to me and so heartbreaking.

My wife and I moved to Florida almost a year ago and we brought my parents to live with us. Our hope was that they wouldn’t ever need a nursing home because they could be with us, and we’d care for them. My mom has dementia. That’s a rough diagnosis to take in. Perhaps harder for the people in your life because frankly, you don’t remember…every time we talk about the dementia it’s new information for my mom. New information that infuriates her. She’ll tell me her memory is getting better and ask why can’t I give her good news sometime…or why does she need to know all that depressing information? Why does she? Maybe she doesn’t. There is the saying, “ignorance is bliss.” Not sure that’s true. I tell her about the dementia so she can make sense of some of her behavior and her forgetfulness. Maybe I need that more than she does…the making sense part.

Now I am disabled, so I have some understanding of loss…needing assistive devices, chronic pain, loss of abilities, etcetera, etcetera, etcetera. But I can only imagine the loss of my memory. I’m old enough that I get the “what did I come in here to get?” moments…but they’re moments…they come and, more importantly, they go. A couple years ago when I had an infection in my elbow replacement and had to have it removed, I had some problems. Maybe they were side effects of three surgeries in six months and months of IV antibiotics, I don’t know. All I knew was I couldn’t remember things I was told, my balance was off, and I felt like my processing of information was seriously delayed. I was so scared. I was terrified that I my mind and memory would be stuck in that awful place. Fortunately, I wasn’t stuck, but if I had dementia, I would be, and it would continue to get worse. I can only imagine what that fear would be like…panic and terror I suppose.

All of that would make for a seriously bad mood…people telling you what to do, giving you bad news repeatedly. You can’t drive, can’t go out alone…most of the freedoms we take for granted, gone. My mom wants to be dropped off at a shopping mall by herself. She wants to use Uber and be on her own for a few hours. But I can’t let her. It’s not safe. She can’t use Uber because she doesn’t know her address or the name of the apartment complex where she lives. She can’t be at a mall alone because she’ll get lost. She’s 90 and exhaustion can hit her suddenly and she needs help walking or the use of a wheelchair. All of that really pisses her off and I understand that. Even though I understand, I can’t let her do things or go places where she isn’t safe…that pisses her off too. And all of that makes for a volatile environment. 

Moods for people with dementia, for my mom, can change very quickly…and it always surprises me. In the movie “Pretty Woman” there’s a scene where Richard Gere, who plays Edward, thinks that Julia Roberts, Vivian, is doing cocaine in his bathroom. It turns out she’s flossing her teeth…strawberry seeds, go figure.  Edward shakes his head at his mistaken assumption and says, “Very few people surprise me” and Vivian replies, “You’re lucky. Most of them shock the hell out of me.” That’s me. I am frequently surprised…especially by the mood changes. Sunday was one of those days. My mom woke up fighting mad…literally. Nothing happened, she just came out of the bedroom all piss and vinegar. It was a full day of complaints, accusations, verbal assaults, name calling, and being told to “fuck off.” Needless to say, it was a long, exhausting, painful day. Now I imagine that Sunday was awful for my mom as well, except that Monday morning she didn’t remember anything. WTF!? Are you kidding me? How can anyone be a 4’10” hurricane of vitriol and not remember? I found myself wondering if it was true and how could it be true? How could you be that hurtful, go to sleep, and wake up with no memory of your behavior? No memory of how much you hurt people?

And there’s the rub…she can’t remember but can I let it go? I read a quote in a book once that said something to the effect of, “I’ve never let go of anything that didn’t have claw marks on it.” That is also me. Letting go is not my strong suit. I wish it was. I also wish being relaxed, easy going and patient were, but wishes do not always come true…even if you wish really, really hard.

Now let’s be real, letting go sounds easy…just let go. Duh! Open your clenched fist and LET IT GO…for the love of God, pry it out of your hand. I guess I’ve got movies and television on my mind today…in the television show “Reba,” her son-in-law, Van tells Reba, “I have one word for you, letitgo.” Reba says, “That’s three words.” And Van says, “Not the way I say it, Letitgo.” But how? How do I, how do we letitgo? I believe I come from a long line of grudge holders…people who remember every way you have hurt, offended or slighted them for your entire life. Letting go does not come naturally to us…my Irish Catholic people…and not to me…although I’m still wishing.

Why not let it go? What benefit would I get from hanging on? Holding on to the hurt, pain, mistreatment, abuse, nastiness? It must serve me in some way, or I’d fucking let it go already! I suppose that hanging on to the pain could make me look all noble. “Look at her? Even with all the mistreatment, she keeps caring for her mom?” A little inflating of the ego…everyone likes that at times. My sister jokes that she can’t tell if I’m a saint or really stupid taking this on. I’m gonna vote for neither. You do not have to know me well to know I am no saint. I swear to fucking much for that consideration. And I am not a stupid person, although in this instance I might have been a smidge naïve…just a smidge. I certainly did not anticipate being accused of elder abuse because I don’t make enough vegetables or taking care of them because I want their money or hating her…apparently, I brought her here with me because I hate her and want to make her miserable. She would rather “live in the gutter than in this hell” which we call Florida. I definitely did not expect all of that and it shocked the shit out of me.

So, then she forgets, and everything goes back to normal…for her. But I am slow to engage, slow to warm back up…very cautious and tentative…defended even. Perhaps slow to forgive. Definitely slow to letitgo. Letting go involves such vulnerability. Exposing my underbelly again even though it’s all ripped up. Vulnerable enough to open up again and try. Try to connect with her. Try to enjoy her and this time we have together. Try to laugh at some of the irony…or just try to laugh at all.

When something upsets our dog, Abby, she has to stop and literally shake it off before she can keep walking. Abby is the smartest dog I’ve ever known and maybe she has the answer. Perhaps the answer to letting go is taking a moment to shake it off. Recognize something scary or painful happened, acknowledge the impact, allow myself to feel it, then shake it off and let it go. Don’t hang on or wonder “what if” just let that shit go. Shake it off and keep walking…keep engaging and try again. That’s what Abby does…she keeps going. She may move more slowly or cautiously at first, but pretty soon she’s prancing along again…like nothing ever happened. She is not a grudge holder. Abby knows how to let go. Maybe I can learn a lesson about letting go from her…I’m shaking already.

Because let’s be real, all that really matters is how we love people…because love wins…always.