Tag: dementia

Multiple Diseases of the Elderly

~ Kai Raines ~ Leave a comment

The cremation place called me this morning…maybe it’s a cremation facility…I’m not sure. Anyway, they called early this morning to let me know that they have my mom and they’re taking care of her. That seems strange because she’s dead so how much are they really taking care of her? I understand that they were telling me that her body is being handled respectfully. I do appreciate that. They also wanted to ask me if I wanted the cause of death on all the death certificates or just some, what about half and half? Of course, I ordered 7 so there you go. We’re getting 4 of one and 3 of the other. I’m not sure which way so it’ll be a surprise. 

Since I had them on the phone…and a side note here, these cremation people are really lovely. They speak softly and calmly…slowly. They are as relaxed as possible, I’m sure because they are dealing with some unstable people…like me. So, since I was talking to them, I asked what my mom’s cause of death was, because no one told me, and I didn’t think to ask. She said, “Multiple diseases of the elderly.” Multiple diseases of the elderly…what the fuck does that mean? I thought they’d say natural causes because being almost 92 is a natural cause of death. Multiple diseases of the elderly make it sound like no one really knows…she was old…elderly…so check the box that covers the most options. Like a big “I’m elderly” blanket. 

I do not agree with their cause of death. My mom did have heart failure and A-Fib. She had a damaged valve in her heart because of rheumatic fever as a child. She had Parkinson’s disease that was progressing. She had a harder time moving her legs to walk and she became so unstable that she had to use a wheelchair. Her hands were shaking worse, and eating was more difficult. She had a hard time keeping food on a spoon or a fork. I know that really frustrated her. I can only imagine. I don’t think any of those multiple diseases were the cause of her death. 

Multiple diseases of the elderly were not the cause of my mother’s death. Not eating, not drinking, and sleeping were her causes of death. Maybe loneliness because she really missed my dad. Maybe that was the heart failure…failing from sadness. The real cause of death was that she wanted to die. So, the official cause of death was a “strong will.”

Now I feel confident in saying that “strong will” is not a choice on a death certificate. That’s too bad because I think it’s one of the most common causes of death for the elderly…strong will. I think that was the same cause of death for my dad. He was ready. She was ready. My mom told me that she wanted to die, and then she’d add, “Not because of you.” I did appreciate the clarification. 

My mom felt like she had lost control over her life and that all her decisions were made for her. That really made her angry. I told her that there were 3 things she controlled: what she ate, what she drank, and whether she took medicine. She controlled those things, and no one was going to make her do anything she didn’t want to. Then I talked to the staff to make sure I wasn’t lying. It was difficult for the nurses and aides who really cared for her to let her go. They wanted to convince her to eat, just a little, or take a sip of water…but they stopped. They honored her wishes, and in that way honored her. 

I do believe my mom willed herself to die. She definitely had a strong enough will to make it happen. She shut everything down and died. Strong will is not a disease but is certainly a cause of death. What are the multiple diseases of the elderly? At first, I was thinking of the obvious…heart failure, cancer, kidney, heart, lung, or liver disease, an aneurism, dementia, a stroke, and the list could certainly go on and on. My Aunt died of COPD, my dads’ parents died young of heart problems, my mom’s mom lived until 96…96 and ½. She’s got the record for sure. Her great grandchildren called her the “energizer bunny” and said that she kept going and going. 

But what are really the multiple diseases of the elderly? A “disease” is defined as an “illness or sickness characterized by specific signs or symptoms.” Seems obvious. But what about the “dis-eases” of the elderly? “Dis” is a Latin prefix meaning, “apart, asunder, or away.” The slang “dis” means “to treat with disrespect or contempt.” “Ease” is the “absence of difficulty or effort, making something less severe, or moving carefully.” Another definition is “to free something that pains, disquiets, or burdens.” 

So…apart, away, disrespect, absence of effort, less severe, free what pains or burdens us….Hmmm. Perhaps the real dis-ease for the elderly in our society is being put away or apart, not being respected as a useful member of society or a family. Maybe it’s that we want to be free from the extra burden of caring for someone in their last years. I guess it’s not that surprising since we do glorify youth in the United States. No one wants gray hair or wrinkles, so people have cosmetic changes made to themselves in hopes of looking forever young. We treat aging as a curse, instead of a natural part of life. I’ve told my wife that I like the lines on her face because I see them as laugh lines, and how could lines from happiness be a bad thing? 

When we moved to Florida with my parents, I had a plan. The plan was that my parents would live with us until their deaths. That way they’d never need a nursing home because we would take care of them for the rest of their lives. Oh, the best laid plans of mice and men…and women. For whatever reason, my mom became adamant that she wanted to be in a nursing home. She wanted to be away from me and away from my dad. She’d tell me that I didn’t want her there and neither did my dad, although that was untrue. 

We both tried to make her happy, but we couldn’t. When her aggressive behavior was too much for me to handle and keep my dad safe, I agreed to find her a nursing home. Getting her into a nursing home was a giant cluster fuck, as I have written about in other blog posts. Once she was in the nursing home she didn’t want to be there. She didn’t want to be at home with my dad and I either…I don’t know exactly what she wanted. I think that maybe she didn’t know either. That was sad.

I know that the elderly are frequently overlooked in our country. Unlike other cultures, we don’t look to our elders for their wisdom and insights about life. We don’t ask about what life has been like for them. We don’t ask about the things they’ve learned or the experiences they’ve had. My dad could tell you about every place he ate when he was traveling. When we were driving from St. Louis to Florida it was a narration of all the places he drove and where he ate the best something. I told my wife I want to start looking for places to eat when we’re driving cross country…usually I just want to grab something and get right back in the car…but I could change, and it might be fun.

I think the multiple dis-eases of the elderly are loss, sadness, lack of control, and nothing to look forward to. The dis-ease is in watching everyone you love die. You may want to live a long life but along with that comes the loss of many people in your life. My mom said all the time that all of her friends were dead. Then she lost my dad. It’s hard to go from independence to complete dependence. My mom would tell people that I made her sell her car and that she could still drive fine. What she didn’t say was that one whole side of the car was scratched because she hit the side of the garage regularly pulling in. And she was completely blind in one eye. So, she could drive but it was dangerous for her, anyone on the road, and the garage. I understand selling the car represented a huge loss of independence for her.

It’s difficult to move somewhere knowing that you won’t move again. My wife and I talk about Florida as our last move, and we hope to stay where we are. But I’m 63 not 91. I know there’s still life ahead of me and many things I want to do. In a nursing home people only leave when they die. She felt like she was waiting to die. I would try and focus on everything she still had, a big family with grandchildren and great grandchildren, and the fact that she was very loved. I think my mom was sad and felt like I put her away, even though she’s the one who put herself away. It was hard to see her sad and angry.

We have a rapidly growing population of people over 65 in this country…I’m not, but that’s what I hear. We don’t have good answers about caring for an aging population. If you have the money, you can find a beautiful resort style place for independent or assisted living, with increasing levels of care as you need it. If you are not independently wealthy, it’s not as easy. The multiple diseases of the elderly are sadness, isolation, loneliness, loss. Those are the dis-ease’s of the elderly. Those are the causes of death in our elderly. 

I don’t know how to solve the problem except with awareness. We tried to give my mom and dad a full and happy life in Florida, some days were more successful than others. I’m not sure I was always as aware or attentive to my mom’s emotional needs as I could have been. I do know I was doing my best. The only way to discover what needs to be done is to lead with love. If I am leading with love, then I am seeing issues and people through a lens of love. When we love people what are we willing to do for them? If we love our neighbor as ourselves then what actions are we willing to take? Could we befriend a lonely neighbor or just say “hi” to someone? My mom used to love to sit on the patio and watch people walk their dogs. She was thrilled when someone stopped and talked to her. That’s all it took. Less than 5 minutes. Certainly, we all have 5 minutes to give. 

Let’s be real…Everyone wants to matter…to be seen…to be cared about. None of that changes just because you’re 70, 80, or 91. We never reach a place of not needing. We thrive in connection with others…in relationships. We are interdependent beings. We all need love, and we all have a tremendous capacity to love. Sometimes we hoard our love or reserve it for special people in our lives. But love is one of those things that the more you give it away, the more you have to give. 

So, let’s lead with love. If we use love as our guiding force, we will find the people and places that need our love the most. Let’s find them and let’s give all the love we can. We can meet people’s needs to matter and be seen by taking our focus off of ourselves and turning it towards others. We can find ways to be loving all day every day. Let’s do that. Because in the end all that matters is how we love people. Let’s love freely and generously. Our actions can ensure that love wins. Love must always win. 

What’s In A Name?

~ Kai Raines ~ Leave a comment

I remember when I was expecting my first baby…it was all very exciting. Everyone was asking if we had picked a name yet. Naming a human being is an interesting task…an important mission. So, we started looking at names. How do you pick a name from literally every name in the world for this little being you have not even met? No pressure there. And the possible list is a bit much. We didn’t even know if we were having a boy or a girl (more discussion on gender assigning at a later date). I suppose we weren’t picking from every name in the world. We were never big on Boris, Ivan, or Helga. Anyway, it was hard to even know where to start. I bought name books and spent days scouring them for the perfect name. 

Recently, my grandson, and his girlfriend, had a beautiful baby boy. My first question was whether the baby was healthy and the second was what’s his name? He told me they didn’t know yet. I’m way too type A to register “we don’t know yet” comfortably. How do you not know?! You’ve had nine months to decide. You only had two jobs…grow a healthy human and name him. Fifty percent completion rate is not that good…it’s a D. My great-grandson (and yes, I am way too young for that ancient title) deserves better than a D.

Of course, I did not say any of those things to my grandson or his girlfriend…those were just the musings of my mind…”musing” might be too gentle of a word…the roller coaster of my mind…the bumper car…that’s more accurate. I did ask when they were going to decide and my grandson said, “We don’t know. We’re going to get to know him a little and then decide.” When did my grandson become the Buddha or the Yoda? The simple wisdom in that answer did not escape me. Now my question was why doesn’t everyone do that? You give birth and then there’s a three-day waiting period before you can pick a name that child will have for the rest of their lives. That seems reasonable.

When I was pregnant, I spent a lot of time repeating names over and over, trying to see if I would like the name forever. We had a beautiful, healthy baby girl, and named her Jessica. It’s been almost forty years and I still love saying it…and Amy and Ben…can’t have anyone feeling left out. 

When I was born my parents wanted a boy, so the only name they picked was Kenneth, after my dad. That’s not really a pick because they didn’t have to come up with the name. For it to be a “pick” you gotta do the work. My family has a thing about names that begin with the letter K. My sister’s name is Kathy, well Kathleen. We only use the full name for dramatic effect. My parents decided on Karen for me. My two cousins are Kevin and Kelly. I’m not sure of the reason for the attachment to K…but there I was Karen Ann Morrison. 

You would need to live in a box to not have heard of all the bad press the name “Karen” has been getting. My summation is that some “Karen’s” have been complete assholes and managed to get themselves all over social media acting like the privileged fuckers they are. Now you can “be a Karen”… that’s a real thing…and it’s a really bad thing. It is bad to become a verb. WTF?!

The BBC gives this explanation. “‘Karen’ has, in recent years become a widespread meme referencing a specific type of middle-class white woman, who exhibits behaviors that stem from privilege. To give some examples, ‘Karen’ is associated with the kind of person who demands to ‘speak to the manager’ in order to belittle service industry workers, is anti-vaccination, and carries out racist micro aggressions, such as asking to touch a black person’s hair. But a predominant feature of the ‘Karen’ stereotype is that they weaponize their relative privilege against people of color – for example, when making police complaints against black people for minor or even – in numerous cases – fictitious infringements.” Now who wouldn’t want to be associated with that bullshit? Don’t be a “Karen.” But I am one. Thanks parents.

In the last two years, I’ve heard my mom say my name hundreds of times. The majority of the time she wasn’t saying it as much as screaming it…with much hostility. She used my name when she told me she hated my fucking guts. She used my name when she told me she was going to call the police, lie, and tell them I hit her. She used my name when she told me I had always been the bad seed of the family. She used my name when she told me the worst thing she ever did was move to Florida with me. I’ve heard my name a lot…too fucking much really.

My mom doesn’t actually say my name. She screams it, yells it, and spits it at me full of venom and animus. I can feel the hatred when she says it. She spews it at me as if it’s a curse she’s put on me. I have heard the name “Karen” more than I ever wanted to. I dread hearing my name now. I cringe when my mom says it because I never know what’s coming next. I have become so conditioned to the hostility in her voice that when she says it nicely, I don’t believe her.

Names are a strange thing. I’ve been thinking that parents should only be able to give a child a temporary name. You name the baby, after the three-day waiting period, and that name sticks until the child is old enough to pick their own name. What age would that be? I’m not sure. It can’t be too young. We don’t want a slew of Cinderella’s, Snow White’s, Spider-Men, or Thor’s. Someone might grow up and regret that choice…at least it was their choice. There’s power in naming something…power in naming yourself. You picked it, you own it.

I’ve read that the sound that people love to hear most is the sound of their own name. Personally, I’ve lost the enjoyment of hearing other people say my name. I used to love hearing my wife say it in her sweet Texas drawl. Family, friends, acquaintances, I don’t want to hear it at all. So, I have decided to pick my own name. I’m 63 so I should be old enough to pick a reasonable name…P!nk is tempting, but already taken.

When I was little my family called me KayKay. So, I thought maybe Kay. That might work. Then I heard my mom call me that and I understood something…I need a name my mother has never said. When I hear “Karen” I hear it from my mom, regardless of who’s speaking. It’s painful to hear it at times. The hate is all I hear now. I need a name that no one says around her, so she never hears it, so she can’t repeat it. Then I can get rid of “Karen” except with her. She’s the only voice I hear anyway. Then I will no longer be a “Karen.”

So, what do I want my name to be? One of the things about the name “Karen” is that it doesn’t mean anything to me. I wasn’t named after anyone…no best friend, favorite relative, or someone loved and admired by my parents. I’ve been pretty much the only “Karen” I’ve known. Well Karen Carpenter…I might have accepted being named after her. 

I realized that the name I pick has to mean something. It has to mean something to me. Meaning is very important to me. My tattoos were selected because of their meaning. All the jewelry I wear, and even my key chain has special meaning to me. Meaning is a big deal.

So…sticking with the “K” theme, my family seems fond of, I’ve decided on “Kai.” Why “Kai”? I’ll tell you. I like the sound of it, and I love what it means. “Kai” is a gender-neutral name that is Welch in origin and means “keeper of the keys and earth.” In Hawaiian, “Kai” means “ocean” or “sea.” In Japanese, “restoration” and “recovery” are included in the meaning. The ocean is my favorite place on earth, and I am restored when I am there. I am renewed and free in the ocean. I am not in pain in the ocean. I don’t have a disability either…I am restored. 

The Navajo say that “Kai” means “willow tree” whose spiritual properties include “protection” and “healing.” It’s also associated with “love” and “being lovable.” I think we all know love is an important theme to me…I do mention it on occasion. After a lifetime of negative messages, it took a long time to finally believe that I am lovable. Everything I talk about, everything I read about, everything I think about is focused on healing…my own, other peoples, and the worlds. “Divine is the task to ease pain.” I choose a name that means healing, lovable, and ocean. Kai. It’s perfect. It’s me in a name. Kai. It’s my name. It’s MY name. Kai Ann Raines…hmmm…I will not be using my middle name…lol.

Let’s be real…choosing a new name doesn’t necessarily solve anything. It does give me the joy of not being a “Karen” anymore. The name change moves me and creates a change of perspective…I’m not that person, I’m this person. The pain and damage caused by the misuse and weaponization of my name aren’t suddenly gone…although that would be awesome. The name change allows some space and fluidity in my thoughts and perspective. That movement allows me to see myself differently. It allows me to see myself through my-self…my own eyes…my own knowing. I see a bigger picture, not someone else’s narrow or biased view. I can be brand new, like a baby you get to know before you name him. I have gotten to know myself. I know who I am. I am a Kai, not a Karen.

Oh yeah…my great-grandson’s name is Zacary…it’s perfect just like he is. Good job mom and dad. I love that little baby. He reminds me that there is still hope and so much possibility in the world. So, I’m gonna love him the best I can. I want him to grow up feeling swaddled in love. And from that secure place he can see the possibilities and hope as well. I want him to see all he has to offer this world. I’m going to lead with love in all my interactions. I’m going to model love for him, the best I can.

Let’s love generously. Let’s be extravagant in our love…giving much and often…without conditions. Let loving actions take the place of empty words. Because in the end all that matters is how we love people. Love is a verb. That’s a verb I can get behind.

She was there and then she wasn’t….

~ Kai Raines ~ Leave a comment

Dementia is fucked up! I realize anyone reading this would probably respond with a “duh,” but I mean it is seriously fucked up. My mom has dementia. I’ve written about it before, more than once. It’s been hard, it’s been exhausting and cruel. She’s been cruel…hateful.

My mom had Covid in January. She was in the hospital and then a rehab facility, just until she was past being contagious. The assisted living home where she lives didn’t have the resources to keep her isolated for several days. They don’t need a bunch of 80- and 90-year-olds getting Covid. While she was in the hospital and rehab, she was mean as shit. She was rude to staff, which is unusual for her because she likes all the staff to love her. That way she can tell me how everybody, except me, thinks she’s sweet all the time. I tell her no one is sweet all the time…that may not have been the right response. One day at the rehab, when I was leaving, she told me not to bother coming back. She’s super sweet alright.

She was finally sent back to her assisted living home, and she settled back in. I purposely did not go see her the day she was transferred, so she could settle in, and I could have a break. I knew she might be mad at me, but I thought it was best…and she’s always mad anyway. The next day I went to see her, and she lit up smiling at me because she was so happy to see me. WTF!? She’s not ever that happy to see me. Then she said something she has NEVER said in her life…at least not in my 63 years. She said, and I quote, “I’m happy. I’m happy, happy, happy.” And I had no response. I just stared at her for a moment, making sure it really was my mom talking. All I could manage to say was “I’m glad.” 

The real question was where the fuck was my mother? My mom is never happy, let alone, happy, happy, happy. She actually told me once she didn’t want to be happy. So seriously, WTF? Hell, if I know. My mom is unpredictable emotionally. You never know what mood she’ll be in, and her moods change in a second. So, as I spent time with her, I was on guard waiting for her to turn back into herself. I’m always on guard around her. I’m afraid of her. But this version of her…not so scary.

We’ve had a month of visits that consisted of nothing but sitting and talking. One of my mother’s recurring complaints about me is that I never talked to her. I “never said a word” to her…that’s what she said. I did in fact utter words, but we did not have any kind of meaningful conversations. It’s hard to talk to her when she’s angry with me. And she always seemed angry with me. But now, now she seemed to like me. She’s never liked me.

My mom is disappointed in me, and she has always made sure that I am aware of that fact…I went to the wrong schools, got the wrong degrees, had the wrong jobs, got divorced, didn’t raise my kids right, you get the point. So, imagine my surprise when she told me what a talented writer I am and how much she loves reading my blogs. She said that they’re “very, very, very good.” I guess she likes to say things in threes. Just yesterday day she told me that she’s blessed to have three wonderful daughters. She counts my wife as a third daughter, which I am grateful for…she’s also never angry with my wife and I’m ecstatic about that. My mom even said that she feels like she’s gotten to know me better the past few weeks and that it has been “marvelous.” Talk about mind fucks!

Now you might think, “why aren’t you just happy she’s being nice?” and that’s a fair question. My mom is unpredictable and with dementia even more so. For almost two years, the dementia has taken the worst parts of her and magnified them exponentially. She’s been angry, verbally abusive, rude, threatening, insulting…she’s been fucking mean. Now it’s completely flipped and she’s all happy all the time. Could dementia do that? And I’m not saying that dementia made her nicer, I’m saying that dementia made her a different person. She was never like this…ever. If my dad was still alive, he’d be as freaked out as I am.

Its unnerving because it’s so different. It’s hard to know what to do or how to react. It’s been a few weeks now and I have finally allowed myself to enjoy her. Enjoy that she’s happy to see me. Enjoy that she thinks I’m talented. Enjoy that she loves talking to me…she tells me that now. Dementia is horrible…usually. But maybe dementia gave me a new mom. Gave me a mom more like the one I had always hoped for but didn’t have. Gave me a mom who might actually love me…and even like me. I don’t even know if it’s possible for dementia to do that.

My mom has been in the hospital the last few days because of a urinary tract infection. Since she’s been there, I was also told she had encephalopathy…try and say that fucker. It’s kind of a generic term for any brain disease that alters brain function. Encephalopathy can cause mood changes, confusion, personality changes…the symptoms are similar to dementia. Yesterday, on the way to the hospital, I was telling my wife that I was worried that maybe the encephalopathy was what made my mom nice and now that they’re treating it, she’ll change back. I told her I would be heartbroken if that happened. That would be a cruel fucking joke by the Universe. I laughed as I said it because it seemed pretty far fetched.

Now imagine that that speech bubble, from my conversation with Gayle, is still hanging in the air…The hospital called me this morning because my mom wanted to talk to me. She’s not great operating phones anymore. I said “hello,” and she started screaming at me. She was screaming that I needed to come and get her right away. And yelling at me for putting her in the hospital. I told her she was going back to her home, at Sweet Water, today. And she screamed at me for putting her there, in assisted living. She’s gone. Well really, she’s back. The nice mom was an illusion all along. My mom is back.

Turns out I am heartbroken. I just started allowing myself to relax with her and enjoy our time together. I allowed myself to open up to her…to be vulnerable. And she got me again. I feel like I’m in a whack a mole game and I just got cracked on the head hard…leaving me sort of dazed and spinning. I was not ready for this. I wasn’t prepared. This may sound awful, but I don’t want my old mom back. I want the new one. And not just for me, for her too. She was so relaxed and content when she was happy. She wasn’t worried about anything. All was right with the world. Now the world has righted itself and I am struggling to hang on. Dementia did this too. I had a moment, a tiny window of time in a life, when I had a real mom. A mom who was not my enemy. A mom who was not out to get me. A mom who wasn’t sad I was her daughter. A mom who was proud of me and told me so.

Dementia is cruel. She was there, and then she wasn’t. Now she isn’t. What a loss. That’s a devastating loss. A heartbreaking loss. Dementia did this. Taunted me with a glimpse of the mom I always wanted and then cruelly took her away in an instant. It may have only been an illusion but, right now, I’d take that illusion over reality. Any day.

Let’s be real…I’m pretty distressed right now. I’m not sure I’m going to go and see my mom today. I don’t think I can take it. Sometimes life feels cruel, and this is one of them. It’s cruel for me and my family but it’s also cruel for her. I’ve never seen my mom content, and she was. The dementia or encephalopathy allowed her to relax and be content. Maybe it was an unexplainable occurrence, but my mom was happy. That had to have felt good to her. I’m glad she had that, however briefly. It seems unnecessarily cruel for the Universe to take it back, like a bad April fool’s joke. I wonder if she can tell. I wonder if she feels the loss…feels the shift. I feel it. I wish I didn’t.

I suppose it would be easy, and understandable, if I wished she had never been happy. That we hadn’t had these few weeks of connection and understanding. Their loss sure hurts. I wonder if those brief weeks gave my mom something that she’d been without, her own happiness in herself. I think maybe she liked herself too. I hope she still feels it somehow or remembers it…that somehow it stays a part of her. She was at peace these weeks…she was peaceful. I have never seen her at peace either. So much to learn and experience, even when you’re almost 92.

And for me? For me, I had a glimpse of what other mothering could be…should be. I had a moment that I believed my mom loved me. That she thought I was talented. A moment where I really mattered. Right now, I’m not sure how to hold on to those experiences while I deal with the anger and rage directed at me. How do I go back to not being good enough? And the thing is, it’s the raging angry part of her that’s real to me, not the happy one. The happy part was like a beautiful dream that had to end. I can’t live in a dream. I had to wake up…maybe she did too.  And maybe dementia is the cruelest fucker around.

So, I am still, and I am listening…for a whisper. I’ve heard it before. It’s the whisper that moves me forward…calls me forward really. It’s the whisper that moves me forward and keeps me soft and real. The whisper inside me that reminds me that ultimately the only thing that matters is how we love people. So, I will continue to love. I will continue to love my mom. I will love her without an expectation of anything in return. I am not loving her to get something from her. I am just loving her. And I will love other people in my life and in the world the same way. I’ll love for love’s sake…not for recognition or a prize…but because in the end all that matters is how I love people…how we love people. That’s how love wins. And it must win…I really need it to win.

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.