Tag: Death

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. 

I’m An Orphan…Right?

~ Kai Raines ~ Leave a comment

Can you be an orphan at 63? Well, 63 and ¾’s to be accurate. Personally, I’m not sure but my sister says that we’re orphans now. My mother died March 17th. St. Patrick’s Day. My sister and I think she did that on purpose. Now no one will ever forget the day she died and it’s a national holiday for us Irish folks. What more could you ask for…green beer and toasts to you all night…toasts lengthening with each Guinness consumed. Omg! She would be so pleased. I’m happy for her about that. We did many toasts Sunday. My favorite was, “May heaven know you’re dead a full half hour before the devil finds out.” She wouldn’t like that one for herself, but my dad was probably laughing his ass off. Hopefully I didn’t create a conflict there…I wouldn’t want them to fight on her first day in heaven.

My mother died peacefully in her sleep Sunday morning. The rehab center called to tell me. It was a call I had been expecting at any time, but I was still surprised when it came. My mother wanted to die. She was ready. In her good weeks, she told me she had a great life but that she had lived longer than she wanted to. She missed my dad. She had stopped eating and drinking. She curled up in bed and went to sleep. She stayed asleep several days before she died. My dad passed away exactly the same way. I’m sure after 70 years it was hard to be apart. 

My first phone call was to my sister. I told her and then we just stared at each other silently for a minute or two on FaceTime, and then she said, “Well we’re orphans now.” I would have been surprised by that except she had been practicing this idea on me with “We’re gonna be orphans soon” or “We’re gonna be orphans when mom dies” and “We’ll be orphans. That’s what it’s called when both of your parents are dead.” That’s what it’s called alright…kind of.

An orphan is defined as, “A child under the age of 18.” This definition made my sister super sad, so I told her I’ll adopt her, and then she won’t be an orphan. I can be her “sister mother” kind of like “sister wife” only legal…at least I think it would be legal…super creepy but legal. And I won’t make her wear a long dress and braids…well maybe braids. I’m thinking Pippi Longstocking’ish. I need some red hair dye.

When I hear the word “orphan” I think of “Little Orphan Annie” the title of which became “Annie” probably because you don’t address a child as a “little orphan” or any kind of orphan. It’s not a title. The movie “Annie” reminds me of, “It’s a hard knock life for us” and “Tomorrow, tomorrow, I love you tomorrow….” And of course, Carol Burnett as Ms. Hannigan. She was some bitch.

For my sister’s sake, I also read that adults who have lost their parents can (and do) identify themselves as orphans. Merriam-Webster says, “A child whose parents have died, are unknown or have permanently abandoned them” are orphans. By that definition my mom was an orphan from a young age. Her father left my grandmother when my mom was 6, I believe. She told me that he was crazy about her and loved to take her places with him. She said that he loved her so much, but he still left, and she never saw him again. And she doesn’t know why. My mom was devastated by the loss of her dad. She had a double loss, her dad and being left with her mother, who she told us, never loved her. My grandmother’s brother, my Mom’s Uncle Mike, lived in the apartment with them. I’ve heard horror stories of how my grandma and great uncle would scare my mom and how they were mean to her. She was traumatized as a child. And I guess no one really cared. I know she felt abandoned and unloved.

It’s no surprise my mom had a lot of phobias…claustrophobia, acrophobia, and hydrophobia are the ones I remember. Not understanding why she was treated so harshly she came to believe that she was “bad” somehow and everything that happened was her fault. When children don’t understand what’s happening around them, they make up a story that solves the riddle for them. Our brains cannot manage the stress of not knowing or understanding what happened, so our brain creates a solution…even if the solution is hurtful to us…or untrue.

I was also an orphan, way before this St. Patrick’s Day. I was abandoned by my mother almost from birth. Not technically, not physically, but emotionally. My mom and I had a complicated relationship. I’m not sure exactly why.  I think many of our issues stemmed from her own childhood. They were hers but projected onto me, so what was hers became mine. Her mother favored her brother, 4 years younger than her, I believe. My mom used to say, as if she was joking, that her brother was “the sun, moon, and stars” to her mom and that “he could do no wrong.” She felt unloved and unwanted. I felt the same way. My mom and I had years that we were estranged from each other and that led to my estrangement from my dad, my sister, and all my extended family. I’m sorry for the lost years, at the time I was doing what I thought was best for me, and my own mental health. Would I do it differently now? I honestly don’t know.

I’ve used this blog to write about my mom and I will continue to write about her, probably a lot. I’m going to write about her because she was my mom. She was a very influential person in my life. The ways she loved and hated, was pleased or disappointed, what she accepted and what was just tolerated shaped who she was and who I am. Now with awareness, I want to choose my shape…I will shape who I will become…or am becoming. We are always becoming.

My mom had mental health issues. My primary caretaker had mental health issues. Issues that were never fully addressed and definitely not talked about. It was perhaps the biggest elephant in the room growing up…and there was a small herd. I’m going to free the poor elephant, actually, all the elephants. They’ve been chained up for too fucking long. I’m going to write about, and talk about, the issues in my family, with my mom, my dad, my parents (because they were different together than individually), maybe my sister, extended family…I’m gonna talk about patterns and habitual behaviors, familial and personal. I’m going to talk about the legacy of abuse, mental illness (in different forms), abandonment, grudges, withholding, and I’m going to talk about forgiveness, mental health, insight and change…I hope lots of change, for myself. I’ll leave other people to determine their own path through whatever life brings to them. Life brings a lot…a hell of a lot. 

If you’re reading this and you loved my mom, you might be offended when I talk about her…so this blog may not be for you. Remember though, I loved her too. I loved her and she was my model for motherhood and womanhood. I was sculpted out of my responses and reactions to her. In order to understand me I need to understand her. I need to develop my compassion for her. She was just a woman doing the best she could. It didn’t always feel that way. I’m sure it doesn’t always seem like I’m doing my best either. I’m gonna do my best with this. I’m gonna do my best for my wife, kids, and family. I’m gonna do my best for her and for me…so I keep moving forward.

Let’s be real…losing a parent is hard. Losing both in less than a year feels like a lot. That’s my official assessment of myself…it’s a lot. Sorting through baggage, that we’ve carried for years is hard work. The starting point is to put it down. Set the baggage down. It may feel like you can’t because it’s such a part of you and after all it’s part of a matched set. Do it anyway. Set it down and look around it. Finding a new perspective can get you started on a new path, and intentional path…a path for you and your health, both emotional and physical. I am choosing an intentional path. I am choosing my path. No one is making me do anything. I’m taking the path that leads me through all the shit I’ve been avoiding for such a long time. No more serpentining…constantly running in a zigzag line because I’m afraid of what will happen if I stop. What happens if I stop? If I stop and set down the baggage…I guess it’s time to find out.

So I’m headed on to a path of transformation. My transformation. I am way the fuck too old to be blaming my mom for anything. It’s time I take charge of my own life. My own life and my own behavior. In order to love someone, you have to know them. And to know them you have to listen, deeply. Its time for me to know, listen to, and understand myself. To give myself the same consideration I’d give a friend. And of course, it all starts with love. Love is the greatest gift we can give someone, including ourselves. I’m going to lead with love, in the world and with myself. I’m gonna try some tenderness. In the end, all that matters is how we love people, and that includes ourselves. I want love to win in my life, and in yours. Let’s be love warriors…starting now. I’ll go first….

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.

A Letter to My Dad

~ Kai Raines ~ 1 Comment

Eulogy…that’s such a funny sounding word. Merriam-Webster says it comes from the Greek and means literally “good speech” and it is a “speech or piece of writing that praises someone highly, typically someone who has just died.” So that would be my dad. My dad died Friday, August 4th at 10:25 pm. It’s interesting that 10/25 was also his birthday. I’m not sure it means anything but it’s interesting.

My dad died. He died. I keep using that word, died, because the words we usually use, “passed away,” “gone,” “lost,” seem to understate what happened. Although I have to say, I used “gone” when I told my mom. Dads gone. That’s all that needed to be said. We use those other words as a way to somehow soften the impact of death or serpentine around reality. Now I’m a serpentiner (I feel certain that’s a word) for sure. I try to be gentle with people when I’m sharing difficult information.

My sister, my wife, and I had a meeting with my dad’s hospice nurse a few weeks ago. After we finished talking the nurse suggested that we tell my dad what we had been talking about, even though we were right next to his bed. He’d always close his eyes when we were talking as if that made him invisible. So, I started telling him that we were talking about how we needed more help caring for him and that things were progressing so nurses would be coming every day and…I don’t know what else. I was stumbling around. I stopped talking and my dad’s nurse looked at him and said, “You’re coming to the end of your life. It won’t be much longer now.” Or there’s that. Sometimes direct is better…shorter for sure. There is no good way to tell someone they’re about to die. It was hard to discuss my dad’s death with him. I felt like I would offend him by thinking he was going to die. As if dying was a sign of weakness.

I feel as though I am still in shock, or maybe denial, and that my dad’s death hasn’t really sunk in for me yet. That seems weird since I was with him when he died…can’t be much more real than that. Now my dad wanted no funeral or memorial service. He wanted to be cremated and then he said he didn’t care what we did with the ashes, we could just throw them away. I told him that I would follow his wishes but that I was going to spread his ashes in the ocean. I would never just throw his ashes away. I could make some inappropriate jokes now, and my dad would laugh his ass off, but I won’t.

So then does he need a eulogy? No service so no need for a speech, right? I don’t know. Writing always helps me and my eulogy to my dad could help me face life without him now…at least that’s what I think.

Now in a eulogy, the giver of the eulogy, usually talks about the person who died, but instead of talking about my dad, I’d rather talk to him. So, instead of a eulogy, I’m writing my last letter to my dad.

Dad,

I can’t believe you’re gone. The apartment seems empty without you. I still expect to sit in the family room with you and watch old movies. I kept a list of the movies we watched and ones I still wanted to watch with you. When I’m in bed, I swear I still hear you breathing in the next room. When I wake up during the night, I have to stop myself from going to check on you. For the last couple weeks, I was always checking to see if you were breathing. I knew at some point you wouldn’t be but I’m still not sure I was ready. Maybe I was as ready as I could be. Thinking about death is a lot different than experiencing it.

You were the person I went to when I needed help. You seemed to handle any news in stride. Remember when I hurt my knee and needed surgery? I called you from college to tell you. Now I told you and I expected you to tell mom. That’s how this was supposed to work. I wanted you to tell her because she did not take news as calmly as you. My system failed because although I expected you to tell mom…sometimes you did and sometimes not so much. This time fell under the “not so much” category and boy did the shit hit the fan then…holy hell. I’m smiling at the memory now, but I sure wasn’t then.

It’s funny now to think that I went to you for help or with difficult information because I was always afraid of you growing up. In my memory you were usually pretty laid back and easy going but when you got mad watch out. You got MAD! Scary mad. Remember when you ripped a post out of the desk in our kitchen in Wisconsin? You were so tall and had such a big voice. It was intimidating. You were intimidating. As you were dying your voice became really soft and for the last week or so you couldn’t talk at all. It took too much energy, or maybe you had said everything you wanted to say. The last words I heard you say were “toast and coffee,” which you said every night when you went to bed. Only we can’t meet in the morning for toast and coffee anymore.

I think you wanted us to be afraid of you. The old school thinking of “if you’re afraid of me then you respect me.” Now pardon me but you know I have to tell you that’s total bullshit. I didn’t respect you when you scared me, I avoided you. I got mad at you, and I held on to that anger for a long time. It’s hard to share yourself or be vulnerable with someone you’re afraid of or angry at. You told Gayle, (my wife), that you had Kathy (my sister) and I bring you the brush or belt when you were going to spank us to “humiliate” us. She was pretty shocked by that, and I was too. It worked. I was humiliated and unfortunately that created an almost insurmountable distance between us. I say almost because I think we managed to bridge the gap, especially this past year in Florida.

You would never say you were sorry for anything. You’d say that stupid ass line from the movie “Love Story,” like it was ideal advice. “Love means you never have to say you’re sorry.” What kind of bullshit was that? I think there are a lot of things and relationships that would have been easier if you had never seen that movie. Even though you softened as you got older, I don’t remember you ever apologizing. A couple weeks before you died you wanted to watch “Brian’s Song” with Gayle an I. You said we could watch together and cry together. And we did.

As we’ve moved through this past year, mom’s dementia got worse. She has horrible mood swings. It was hard to listen to all her angry words and accusations. Sometimes I think she says stuff that she knows will hurt me, like something about our relationship. I think she was jealous of our relationship. She told me that you always called me the “bad seed.” I wish I had asked you if that was true, but I thought there’d be no good answer, so I didn’t. I guess I didn’t really want to know. That would be soul crushing if you did. Who wants their soul crushed? I don’t think we would have gotten along as well as we did if you thought that of me. 

I remember growing up that if mom was mad at you, she was automatically mad at me too, even if I had no idea what was going on. I think she assumed I’d take your side. Maybe that was true. I don’t really know. I think that’s part of the reason I’ve had a hard relationship with her. She was unpredictable and I was always trying to figure out what I did wrong. Usually, I couldn’t come up with anything and I believe that’s because I didn’t do anything. You know I’m still trying to figure her out. Even as an adult if she was mad at you, she was mad at me. Made for some tense times here in Florida. We were frequently in the doghouse on the island of “what the fuck did we do now?” It’s very stormy on that island…the weather changes very quickly.

I think your sense of humor was my favorite thing about you. I will always remember how much you loved to tell jokes. You told them all the time. I was going through your wallet the other day and found the notes you had made to remember all the jokes you wanted to tell. I even recognized a couple of them. You seemed the happiest when you were telling a joke and getting lots of laughs. And you made yourself laugh too. I loved listening to you and Amy (my daughter) tell jokes to each other. You two cracked each other up. There was nothing better than listening to the two of you laughing uncontrollably. It made me laugh too. I think that’s how you liked things, lighthearted and lots of laughter.

I think I get my sense of humor from you. I think Kathy does too. We’re funny people. Seriously…funny. I used to love to make you and mom laugh. Remember when I used to pretend I was a balloon? This all happened in your bedroom when you were trying to get Kathy and I to leave and go to bed. We were teenagers then. There was a comedian on tv, at the time, that did this act and I loved it. I’d put my thumb in my mouth to blow myself up. Then I’d float around the room gently bumping into things that changed my direction. The main thing was I couldn’t get out the door. When I tried, I just bounced off and floated around the room. I remember laughing really hard at that. That and Kathy and I singing “Sisters” from “White Christmas” or “Let’s Just Kiss and Say Goodbye” by The Manhattans. Sometimes it was easier to make you laugh than mom. She did not always appreciate how hysterical we are…or were. I think we’ll still be funny…or I’ll still be funny, in the future. Although I don’t know, you might be telling jokes right now wherever you are.

Mom always says that you didn’t know how to love because you were raised in a house without love. I’m not sure if that’s accurate or not. Your parents died right before I turned 8 so I have limited memories of them and their relationship. I think mom was raised in the same kind of environment. She says all the time that grandma hated her and only loved her brother. I don’t know if that’s true or not, but it’s certainly true to her. Maybe that’s why you found each other; you were trying to heal the same wounds. Although you can’t give someone what you don’t have, and I’m not sure how much either of you had to give.

You were never big on displays of affection. An “I love you dad” received the anticipated response of “back at ya.” It’s funny now. I’m not sure about growing up. I frequently felt like you were disappointed in me, not for anything specific, just me in general. That’s sad to me. I heard you talking to Michael (my nephew) on the phone one night this past year. You were talking about his new job and when you hung up you told him you loved him. I asked you why he got the “I love you” and not “back at ya.” You said because he earned it with the new job. That also makes me sad. I’m guessing you learned that from your parents, probably your dad. Maybe that’s why I felt you were disappointed because I was never earning the I love you. 

As you were getting closer to your death, I think you’d forget, and an “I love you too” would slip out in response to being told you were loved. It was like a game wondering what your response would be. When mom fell, shortly after we moved here, and I took her to urgent care because I was worried about the lump on her head, she ended up going to the hospital by ambulance. When I called to tell you, you told me you loved me. You said it like it was a prize on a game show. You told me I did good getting her medical help and you said, “So here, I love you.” I earned it.

Mom has told me that if you guys hadn’t moved to Florida you’d still be here. I don’t think that’s true. You told me if you hadn’t come to Florida one of you would have been dead. I don’t know. What I do know is that I’m glad you came to Florida with us. I really treasure this past year with you both. I’ve reached a point in my life where my focus has become not having any regrets..any regrets about my relationship with you or my relationship with mom. And I don’t have any, especially with you. I got to spend a year with you living in the same home. I really enjoyed living with you, as long as we stayed far, far away from politics. Right!? I got to take care of you. Hopefully you could feel my love for you in all of those moments. I was happy to take care of you. Happy to be here for you, because you have been here for me, especially this past year. I know you’ve tried to intervene with mom when she’s being mean to me. And you paid an emotional price for defending me. I appreciated it more than you know. And you would ask me if I was okay and try to make sure I wasn’t taking what she said personally, but that was hard. It felt, and still feels, very personal. You understood that. 

One day when mom was yelling at you, you said, “Do you ever wonder how I feel?” I think that may be the only time I ever heard you use the word “feel” especially in reference to yourself. It’s sad to me to think of that and how much emotional pain you were in. I asked you, respectfully, one day if you ever thought about leaving mom over all these years. And you said no, and I especially remember this part…when I asked you why not you said, “because she always comes back.” You saw something at the core of her that you loved regardless of how she was treating you in a specific moment. Some core that always reappeared. That you always loved. I guess you did know how to love. It’s hard to recognize if you haven’t had it.

I was thinking about you telling me how you had changed my diapers as a baby and now I was changing yours and how you felt that was wrong. I wish I would have said the first thing that popped into my head at the time which was, “You never changed my diaper. That’s some bullshit dad.” We would have gotten a good laugh out of that, especially because I would have used the word shit.

Now dad, let’s be real…you gave me many things that are invaluable to me…my sense of humor is one of the best. My love of school and learning, always expanding my mind. To be true to my word and do the things I say I’ll do. To live without regrets, although I think you and I each take a different path to get to that point. I’m stubborn. One day mom told me I was stubborn, and I said, “how could I not be? I was born to stubborn and stubborner.” It’s in my blood. I’m a glass half full person just like you. You seemed to find the positive in situations and that was your focus.

Now some of what you gave me may have been unintentional, such as, my ability to apologize, especially to my children. The fact that I feel compelled to apologize when I have hurt someone. And I say “I love you” pretty freely. I always want people to know how much I care about them. I would never try to humiliate anyone. I care about other people’s thoughts, feelings, and opinions, including children. Children have feelings and they need to be heard. I learned to push my feelings down and appease people, so that they feel okay…regardless of how I feel or felt. I guess you seemed sort of impenetrable when I was young. I’m not sure it occurred to me that you had feelings…except anger and laughter…laughter isn’t a feeling, so maybe happiness, I’m not sure.

One of my favorite quotes is, “We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world.” Buddha said that. In my experience that’s really true. I think you’d agree. I think I took things more personally when I was young than I do now. I can see now that a lot of things people say or do are about them not me. Even if they say it’s my fault. Just because someone says something doesn’t make it true. Even if that someone is your parent. I cannot be responsible for everyone’s feelings. I have enough trouble with my own. Maybe you know that. 

Ultimately, I knew you loved me. I knew without the words, but the words were nice too. I loved spending the last year with you, and I know you know I love you. I hope mom knows too. There’s still time for me to work on that and I’m afraid it will take a lot of work. But I know that in the end, all that matters is how we love people. I miss you dad.

In the Event of My Death

~ Kai Raines ~ Leave a comment

We have lived in Florida now for about 15 months and 12 of those months my father has been on hospice. Last week my family met with my dad’s hospice nurse and his status was changed to “imminent” as in dying any day now. When did it get so close? Since that meeting I shut my world down. Now I sit with my dad and wait for death…wait for death to take my dad away from me…imminently.

It’s a weird thing to wait for someone to die. It’s uncomfortable and peaceful at the same time. I am a person with strong propensities and under stress they pop up…or pop out. I’ve been breaking out all my coping mechanisms. Comfort food and wine were first. And always I turn to reading. Books allow me to explore and question what’s happening around me and to open up to the present moment. One of the best things reading does for me is move me out of denial in a way that I am amenable to…sometimes I don’t even know what’s happening until I realize I am actually feeling my feelings.

“Bardo” is a Buddhist term for in-between time. After death and before rebirth. A transitional time…the gap or space between what ended and what is yet to come. My teacher, Dzogchen Ponlop Rinpoche, says, “This experience of the present moment is known as bardo in Tibetan Buddhism. Bardo in a literal sense means ‘interval’; it can also be translated as an ‘intermediate’ or ‘in-between’ state. Thus, we can say that whenever we are in between two moments, we are in a bardo state. The past moment has ceased; the future moment has not yet arisen. There is a gap, a sense of newness, of pure openness, before the appearance of the next thing, whether it is our next thought or our next lifetime” (Mind Beyond Death, p. 10). So, the essence of bardo is found in the experience of nowness, the gap between the end of one moment and the arising of the next one. 

Why is death so scary for us when we experience it all day every day? Something ends and something else begins, over and over again. The reality is that death and birth happen continuously. Every day is filled with small deaths. We are continually faced with endings…transitions between the end and the beginning. Our fear comes from our desire for things to be permanent and solid. We don’t like impermanence. We like sameness. We like the predictable, consistent, and comfortable. Our desire for comfort keeps us butting our heads into reality…get a helmet.

Pema Chodron, in her book How We Live Is How We Die, says, “What everyone can agree on, however, is that during our present lifetime, thing’s definitely keep going. And as they keep going, they continually change. Things are constantly coming to an end, and things are constantly coming into being.” Change never stops. The way to live with the fear of death is to embrace it. What we resist becomes stronger. I must open myself to the inevitability of death, and the fear that arises, and live in its presence.  Live with death in mind because how we live is how we die. Death doesn’t just happen at the end of our life; it happens in every moment. Impermanence. Reality will take place whether I like it or not. My dad is going to die. Everyone will die, including me. We can be open to everything whether we like it or not, because it’s going to happen, and then it’ll change. We are always in a bardo because impermanence never takes a break. There is never a moment that we are not in transition.

It’s strange knowing death is imminent. Of course, we’ll all die but we don’t usually know when that will happen. I think I prefer the mystery. As for him, I’m not sure what he knows. His whole life has been reduced to our family room. The family room is where everything happens for him…makes it an aptly named room. He gets a bath, nurses and aides come to check on him and up until a week ago he used to eat in this room. He isn’t eating or drinking anything now. He has to be changed every day and that has been the hardest thing for him, because sometimes that responsibility is mine. One day he told me that he used to change my diapers and now I change his, and he paused a minute and said, “That’s just not right.” But in a circle of life kind of way it is right…it’s exactly right. We need to take care of each other.

It’s a strange time when someone’s death is imminent…waiting for death…waiting for the transition. I wonder if he feels like he’s waiting? Or getting ready for a big change? He sleeps most of the time but sometimes while he’s sleeping his mouth will move like he’s having a conversation with someone but there is no sound to his words. I wonder if he’s talking to his mom and dad…getting ready to see them after 55 years. I don’t know who else he might be looking to see on the other side but he’s got something going on. 

At this point the only thing I can think to do is tell him that I wouldn’t have traded a single day of this past year being with him and my mom. There have been some challenges, but I wouldn’t change anything. I hope that helps him and eases his worries. He has told me more than once this past year that this is not what I signed up for, and I tell him it’s exactly what I signed up for. I hope he believes me.

Let’s be real…when we reach the time of our death, that’s not the time to try something new, something we always thought we’d try but never did, like meditation, or prayer, or who knows what. All we have at the end of our lives is what we had a second before the end. We aren’t suddenly a spiritual guru, if we have never cared about developing our own spirituality. We won’t suddenly be relaxed if we’re always anxious, or loving if we’re cruel. We won’t be able to be present in that moment if we routinely live in the past or the future. All we have is who we are, our habits of who we are and how we think. Our propensities. We’ve had a lifetime of building our propensities, the habits of our minds.

The only way to become comfortable with death is to develop our ability to remain in the present moment. Stay present with the little deaths that happen all day every day. Learn to live in the in-between state. Become comfortable with groundlessness, the uneasy footing of continual change. Facing these fears day after day is how we become comfortable with death, and with life. After all, living a life we aren’t present for isn’t really living at all. Let’s love ourselves enough to be present and love others enough to give them the gift of our presence. Never forget love. Love always wins.

“When the appearances of this life dissolve,

May I, with ease and great happiness,

Let go of all attachments to this life

As a son or daughter returning home.”

Dzigar Kongtrul Rinpoche