Her Legacy: Lessons of Alzheimer's

*Having finally found the words to write this personal post has left me feeling so raw and vulnerable, yet incredibly healed. I am forever grateful to her legacy.*

From the moment I was born, I have had a profoundly deep connection with my paternal grandmother. Her name is Hamide Murrizi, maiden name Hamide Beqiri, I called her Nena Deko.

Born and raised in Albania, this woman was a force to be reckoned with. I always knew I admired her. I always felt she was one of the fiercest women I've known, in more ways than one.

She and I had a tremendously close bond. From before I was born, she saved my life. She reminded my mother to go to the hospital because she was long overdue (in communist Albania of 1987 doctors were not as on point about timing as they might be today). This is where my mother gave birth to me, via an emergency C-section, because her placenta had dried up. This was the first time my Nena Deko saved my life.

When I came home, I was so tiny, fragile and apparently ugly, that most people had a hard time looking at me, never mind holding me. She, on the other hand, lovingly nurtured me to health. She bathed me in warm water with precious egg whites and she rubbed my fragile skin with olive oil…she cared little about the rations of the family. She sang to me and prayed with me. This is how she healed me into health. She loved me so deeply, from the bottom of her heart, and I’ve always known it.

This was the beginning of my relationship with Nena Deko. With this kind of start, how could we not sustain a strong connection?!

Growing up, I looked up to her. I felt she was a strong woman, because, unlike other women I saw around me then, she did not take crap from anyone. I identified with that strength and I adopted much of it. Turns out, it was a lot more firey than I had hoped for, but in her later years, she helped me learn how to begin taming that fire. Still, the essence of her first message remains: I learned from her that I was going to be a capable woman in control of my own life. I learned I could choose a partner that would, at the very least, not beat me. An important life lesson, indeed.

Unfortunately, I was separated from my Nena Deko and much of the rest of my family because my parents chose to immigrate to a better life. We lived in many cities in Greece and Albania, until we finally immigrated to the other side of the world, Canada.

I didn't get to see her much for about 8 years of living here. During this time, she would send us packages filled with love. The love manifested in the form of clothes, shoes, jewelry, and even blankets! I remember we always looked forward to what's in the box, what did Nena send us this time! It wasn't until many years later that I found out that she was paying her month's pension just to ship those boxes to us. What an incredible woman. She found a powerful way to show love, care, nurture...from thousands of miles away.

After many years of living in Canada, my parents made the decision to bring my grandparents to Canada by method of family reunion. After years of applications and struggles, my grandparents finally arrived. Having them near me in my adult life has been one of the most profound experiences of my entire life. Unfortunately, in my 20s I struggled a lot, so I did not get to experience being with them fully. Still, I loved the years that they were here.

In her 70s and in my early 20s, Nena Deko developed a devastating dis-ease, Alzheimer's, while I was living lost in addiction (to escaping reality, to anger, to self-loathing, to food, to sugar, to succeeding, to a failing abusive relationship). At this time, my experience of my Nena Deko started changing. She became lighter, bubblier, and bizarrely easygoing. This was a side of her that she'd kept under control forever; a side of her that we got to see only when she decided that we'd get to see it. It was a particularly sweet side of her that she was no longer able to contain. A lot of people around me struggled with the early signs of the dis-ease. Like the fact that she couldn't remember where she left the broom or exactly what conversations she'd had with people just moments ago. Most people around were in pain and could not bear to see her “deteriorating”.

While I was undoubtedly concerned, I unconsciously chose to see the beauty in the situation: she was the happiest I had ever seen her.

Because life unfolds as it does, a point came in life that my grandparents had to go back to Albania and move into the house I spent much of my childhood in. The reasons they left, I do not know. Some say we couldn't keep them here anymore, others say they wanted to go. The story is always more complicated than people let on. In any case, she moved back to Albania, where her dis-ease progressed rapidly. Within a year, she was getting up at night and leaving the house. Once she fell in a ditch and spent the night there until police found her sometime the next morning. She became violent and frequently acted out. For a person who had always been in control of herself, losing her ability to make sense of the world, to exist in her own space, seemed debilitating, fucking frustrating, disabling, confusing.

This was surely amplified when people would talk to her in a condescending tone, talking to her like she was less-than, like she didn't understand or pick up on their energy. They’d constantly bombard her with questions like “what is your son’s name?” or “do you know who I am?”

I'm sure they meant well—but their ignorance has always been infuriating for me, and surely more so for my Nena Deko. Ignorance is never bliss.

My visits to her

I visisted my Nena Deko three times before she passed away. During each of those visits, I learned so much about her, about myself, about life, and especially, about our deep connection to one another. First, I’ll share my experience of her and her dis-ease, then I’ll share lessons learned, however impossible it is to describe these things accurately in words.

The first time I visited Nena Deko I was surprised at how little she remembered of the conversations we'd be having. She couldn't keep a conversation going, and she'd always point to the pictures of her family hung on the wall behind me. She'd keep pointing out how my uncle, her other son, put those there. Over and over and over. I remember this so clearly, like a scene in a movie. Her sitting, rocking on the couch across from me, the coffee table in between us, my Basha (my grandfather) sitting beside me. She kept looking at us, then the pictures of the family behind her. She was quite content pointing out her family portraits. It didn't matter that she's repeating herself, all that mattered is that she was happy in this recurring realization. She was happy we were there, she had clearly missed us terribly.  

During this visit, I noticed that my grandmother was not sure of where things go. I asked her to put a towel away in the kitchen, and she was heading for the bathroom. I said “that's not the kitchen!” and I felt her confusion. I felt horrible for even pointing it out. I couldn't imagine how she's feeling, lost and confused, all the fucking time. This awareness of just how much she's lost and confused was heartbreaking.

The first night I was there, my grandpa was trying to put her to bed, and she would just not listen. He then told her, “Hey, look, don't worry, all is good. Stela is here.” She didn't believe him. When I walked over to the bed to help her lay down, she looked up at me, dead in the eye, and she said “Po, ti je” (Yes, it's you). She knew me. She saw me. I felt the love emanating from her eyes into all the depths of my Soul. I would experience this with her one more time before she left this world.

Throughout the rest of the visit, I had so much fun engaging with her. Because she could still walk and talk and eat and drink coffee, I was able to hang out with her. I dressed her in one of her favourite dresses, put some perfume and lipstick on her, and took her for a walk around the neighborhood, we greeted people and chatted until she was tired of walking. We went to the bazaar, we went on a little trip to see some of her family in another city with her, we henna'd her hair (she loved dying her hair, so she sat cross-legged, enjoying a turkish coffee, full of content that this was her life right now). I am so grateful I had these beautiful experiences with her, while I still could.

I had a good idea of how this dis-ease would progress, so I wanted to enjoy her as much as I possibly could.  

Still, I could not help but mourn the loss of my grandmother. I know she was still alive, still there, still her Self, but something was gone, and I knew I’d never see it again. It just meant our lives had changed forever. I think I was mourning the change, because I definitely knew my grandmother is very much still here.

After coming home to Canada at some point, I wrote a poem for her because I saw how people treated her, I saw how she reacted and how she felt.

Truth be told, despite what everyone else saw, the loss, the degradation, the lack of mind… I saw her…who she truly was, coming forward, finally being allowed to express herself without the cultural conditioning that imprisoned her her whole life. Her mind was dissipating, but you could not deny the strong presence of her conscience, her Soul, her essence...her inner child.

During my second visit a couple of years later, I went with my partner. This time, her dis-ease had deteriorated significantly more. Despite our best plans to take her out and my grandpa to the beach, she was much too bed ridden to leave her space.  My grandmother's life was now living on the living room couch, staring at the wall, unable to have any conversation worthy of having. She'd lost many of her teeth, her hair was all white, and she was frail and thin. Importantly, I noticed that she’d lost her voice. Instead of her instructional, strong voice she’s used her whole life, she now whimpered in a high pitch that would break my heart. She'd understand me when I talked to her slowly and carefully –she knew, for instance, that Jacob was my partner. She knew that I was there, taking care of her. She knew how to hold my hand tightly, and bite me lightly to show me she loves me. She knew to look at me with love, with joy.  She knew that I loved her tremendously.

She knew how smile and shake her feet to the rhythm of music. She knew how to stay alive.

I loved being there with her, experiencing her exactly as she was, being part of her story. I loved that my partner was there with me. Seeing him tear up beside her, feeling the love in the room…in those moments, I fell that much more in love with him. She loved him, and he loved her, exactly as she was. It was beautiful. Absolutely, painstakingly beautiful. I felt so lucky to have such wonderful people be part of my experience on this planet.

When I left my Nena Deko that time, I could feel she, and my Basha, were tired. She persisted on life, but she was exhausted.

Before leaving their house this time, I decided to take home with me a few pieces of clothing from Nena Deko, as her jewelry and most of her favourite clothes had been slowly disappearing over the years.

It is by wearing her clothes that I would sometimes feel close to her.

One seemingly random day, I had been feeling way off… for three days. I was struggling to sleep, I felt constantly cold, uneasy, down, almost like I had a cold…but the energy around it felt different. I just felt off. I had felt a strong urge to wear her shirts, two days in a row. On that third day in the afternoon, I get a phone call from my mother: Basha called, said to go back immediately, Nena Deko is surely dying.

Whoa.

The doctor had told them three days ago, this is it.

I knew that very moment: I have to go be with her.  

All I could do while waiting to leave is pray. Pray to her, ask her repeatedly to wait for us. Reassured her we are on our way. I connected with her energetically, asked her to just please wait for us. I prayed for her, too, just in case. While I worried that she might not wait, I knew from my very core that she most definitely would. She would not choose to die without seeing her sons one more time. She could not. And she did not.  

Finally, Together

I remember the feeling I got when I walked in that household—she was laying on the couch, unable to move any part of her body, barely breathing through an open mouth, eyes glazed and barely open, three days with no serum, thin and withered as a dying person. My Basha sitting beside her, wholeheartedly heartbroken. Over 62 years together. And now, she was leaving.

How the events unfolded those three days she was alive is a blur to me. I know that they happened, but not necessarily the exact chronology.

The night we arrived my uncle called an ambulance and talked to the paramedics about what to do. He was in so much pain, he struggled with watching her go. The gentleman was so kind. He told our family, his professional advice is to take her to the hospital, his human advice is to leave her be in peace on her bed with her family. Observing my uncle struggling to surrender to this news was heartbreaking. In fact, I recall another powerful scene where the three men of her life, her husband and two sons, were sitting on the couch across from her, watching her, wailing, crying for the inevitable upcoming loss of their matriarch.

The next day, the nurses that were taking care of her sores arrived. They were two lovely, kind ladies who were quite gentle with my grandmother. My mother and aunt were not able to stay and watch the state of my Nena’s body. I felt compelled to. The nurses exposed the bed sores that had consumed most of the flesh of her external hip/buttocks. They cut the rotting flesh out, every day, and patched it back up after sterilizing the wound. What a weakened state to experience my grandmother in. She was in so much physical pain, and she persisted.

That afternoon, my mother had a premonition—she wanted to read us our coffee grinds, even though she does not generally know how. But her intuition called her to, so she did. Part of the process is that the reader, in this case my mother, asks the person being read, me, to ask the grinds a question. I asked for my Nena to go in peace, soon. What my mother saw in the grinds is that there is a matter of the heart that is not allowing the thing I wished for to happen. She saw a snake wrapped around this heart, which she interpreted as the reason why this wish cannot happen. I had no idea what she was talking about. We proceeded to have some deep conversations with my aunt about countless experiences of women’s premonitions and their impact on our lives.

After hearing the stories of their lived experiences, I allowed myself to forever become more open to people’s experiences that are different from mine.

After dinner that evening, while washing the dishes, my mother knew exactly who the snake that would not let my grandmother pass in peace was. I will not get into the details of this story, but my mother was on to something real. How that night unfolded, and the truths that came out then, are not for a public post, but for me how the stars align sometimes is absolute genius, not coincidence.

The next day, we all knew what we had to promise our Nena Deko. We all knew what she needed to hear to feel at peace with leaving this planet, and we all made our promise to her individually. Later that afternoon, I was left alone with my Nena Deko for a few hours. I remember sitting on the couch beside her, watching her, contemplating what she’d want me to do right now. I could only come up with what I needed to do. As it turned out, it was exactly what she needed, also.

Bismillah, the Final Moments

This is very difficult for me to write about, because I have no way of doing justice to the indescribable and tremendous impact this had on my life, my body and my Soul. Still, I’ll try.

I got up from the couch I was on and I sat with her, first on my knees on the floor, then on the couch with her so I could see her better. I held her loving, frail hand as tightly as I could without hurting her, and I began to talk to her, knowing she is listening and eager to hear me, to be with me. I told her who I was. I told her I know how much she loves me, how much she has always loved me. I told her I know she’ll miss us, but we’ll miss her more, because she will be in a realm where she can protect us. I told her to go greet her mother, her father, her sister, her brothers. They’re all waiting. I told her I feel all the prayers she’s prayed for us, all the blessings she’s left behind and showered us with. I prayed with her, bismillah arrahman arraheem, over and over, about all the things I know she’s blessing us with before she goes. Just hearing that word, Bismillah, made her squeeze my hand, ever so slightly. She looked at me dead in the eye, to let me know she’s right there with me. She’s praying with me. I reassured her that I know she’s right there with me, she did not need to struggle to show me. I asked her to, bismillah, bless me with the kind of love and support I know she always has, from her heart. I asked her to love us and forgive us for when we’ve hurt her. I reminded her we love her so much, and will miss her tremendously. I thanked her for waiting for us, because she knew we needed to say our goodbyes. I thanked her for saving my life, for nurturing me to health, and for allowing me to be there at that moment holding her hand and helping her transition. I thanked her for allowing me to be a nurturer and caretaker to her. I thanked her for her endless love and support. I told her not to worry, we will all make sure Basha is in safe hands. At that moment, she shed a tear. She needed to know Basha was going to be okay without her. She needed permission to go. The two of us made our peace. She had my blessing, and I surely had hers. What an authentically powerful experience…

As soon as we were done praying, the rest of the family walked through the door. I shared with them our experience together, and urged them to say their goodbyes. My father just kept crying while my uncle and grandpa said their goodbyes. He had a hard time bringing himself to say goodbye. This is where my embodied strength came in—I assured him it’s such a peaceful process, that if he doesn’t do it now, he will never get the chance to, so he did. It was profoundly cathartic for the whole family. We all were able to say our peace, tell her we love her, tell her we’ll miss her, tell her it’s okay.

Suffice it to say, my Nena Deko decided to pass away the next day, when everyone except my mom and Basha had left the house. While Basha was sleeping, my mom was sitting quietly on the couch across from her, giving her space. Just like that, she took her final breath.

When we arrived home, she was gone. It’s interesting how you expect a death to happen, but when it does, a wave of indescribable pain goes through your body, and the process of grieving the death of the person begins. To be honest, I actually panicked and for a moment lost all contact with my physical body. I walked over and looked at her and just could not process the fact that this body lying in front of me is now no longer my grandmother. Her essence is now elsewhere.

Once I let the fact that she has passed settle into my body, I walked over to her body and deeply looked at her. She looked so peaceful. I just couldn’t believe it. All the life, all the struggle to stay alive was now completely detached from her body. All she left behind in that body was an embodied peace in her face that is completely indescribable and yet completely unforgettable and life-altering.  Seeing her like that brought tremendous peace to my soul, and I knew: I am no longer afraid of death.

I had never seen a dead body before, and I am so grateful that hers was it.

Albanian funeral traditions are so interesting. Moments after her death the funeral home people came to grab her. They washed her, dressed her in the chosen clothes we picked that represent her, and they took her to the funeral home where she was to stay all night before being buried the next day. That night, we were to stay with her body, protecting her all night. So many people started showing up. People I hadn’t seen in years! People from different cities. People who loved and respected her and who were now here to be with her in her final moments. That night, people told stories about her life, laughed, cried, connected. The next day was her funeral. Even more people showed up for that! That was incredible. We shared stories, laughs, cries.

Then came the time to bury her. What an incredibly emotional time. Before we took her to the car, I put some of my pure rose essential oil on her, I knew she liked smelling good. I also put some lipstick on her. I knew she’d like that. I combed her hair, and I told her I love her. Then we drove around until we got to the graveyard where we buried her under the earth for eternity. While watching her coffin descent into the earth was difficult, it felt cathartic. Throwing earth on her reminded me of where she is going, and where we all come from. In order for life to exist, life must continuously die.

This is the circle of life, and my Nena’s body, all natural, was returning to its essence: earth.

Afterward, everyone gathered for a feast of a lunch in her honour. Such is tradition in Albania.

The night after we buried her I went and sat on the couch she had spent the last few years of her life on. I just wanted to be alone with what she had left behind. I could smell her there; I could feel the energy she’d left behind, still there. The essence left behind in that living room felt incredibly light. The energy she’d left behind was soothing, tranquil, surrendered. I felt an incredible sense of peace, joy, lightness of heart. I started laughing and simultaneously crying. This woman left behind no heaviness. My Soul was at peace for hers and with hers. I felt she was free, I felt she was home, I felt she was in the realm of divine matriarchal protectors now.

Her Legacy

There is no denying that the passing of my Nena Deko was the catalyst to a transformation I had been procrastinating on undertaking for years. Her passing has deeply impacted me and propelled me into action, however unconsciously. Without my consciousness understanding, I had been learning from her life experience most of what I’m now beginning to embody in my life: the essence of my essential nature.

This is a very complex experience for me, and so it is particularly difficult to put into words. I hope I am able to do it justice, because the wisdom contained in these lessons is, for me, not only transformational and empowering, but also absolutely sacred.  

Her whole life my Nena Deko embodied a personality that positioned her as a powerful, independent, hard-working, controlling, aggressive, influential, dominant, important, commanding, forceful, fierce, strong, solid, proper caretaker. This is what Alzheimer’s took from her.

What it gave her, in return, is a reversion back to her childhood where she could just be without the imposition of the responsibilities and hardships of daily life. She relinquished control; she shifted herself toward living life in her pure, undifferentiated essence. She allowed others to, finally, take care of her. What an absolutely genius way to demand the attention she had been craving for her whole life!

I’d like to clarify: I not wish that my grandmother had experienced Alzheimer’s; what I do wish is to express and share what I saw and what I learned from this experience. What I know is that there is absolute genius in our bodies—all dis-ease can be conceptualized as a manifestation of what our psyches have a hard time processing. The body is the final frontier.  

From this perspective, my Nena Deko had had enough of her own fire. She was tired of social structures, of holding power, of controlling, of dominating, of commanding, of caretaking. She was ready to let others take care of her. It was her turn to just be.

Most people around me could not understand this. They focused all their energy on what the disease took from her, not what it gave her in return. They did not understand that her personality, who isn’t really her anyway, isn’t there but her essence is still there, more vibrant than ever, allowed to finally surface to the top. I mentioned before that when this dis-ease started progressing, my Nena Deko was the happiest I had ever seen her. She was in a state of pure content, pure vulnerability; a state of living that required nothing more of her but to exist, demanded nothing more of her but to just be.

It was liberating, in many ways.

I am grateful for her surrender to her dis-ease because it allowed me to see her for who she was— not the mask of the defensive personality that she had been wearing for over 70 years on this planet, but her pure essence. I saw her essential expressions shining through. I saw the pure joy, pure strength, pure compassion, pure vulnerability, pure love she held within her. And I loved her evermore. The way she lived with this dis-ease for 10 years proved to me she was truly, unquestionably brilliant. She loved life, and she manifested the life she subconsciously desired.  

Some might say I speak nonsense. Alzheimer’s is a genetic disease and this is why my grandmother had it, nothing to do with the state of her Soul or whatever b/s I’m spewing. She lived for 10 years with the disease not by choice, but because her body was strong and able to sustain her, her brain just wasn’t functioning. To those people, I have this to say: that’s the linear, allopathic, Newtonian paradigm of the world. I come from a non-linear, quantum understanding where dis-ease is conceptualized as a metaphor. In my worldview, my Nena Deko lived to 83 and over 10 years with this disease while her nephew, in his early 60s, died within one year because she chose to live with the dis-ease and he did not.

It has been well over a year that my Nena Deko passed away, and I am now finally able to find some words to describe what I’ve learned from her experience on this planet. As a wise ancestor full of divine energy, she taught me the crucial significance of consciously and continuously connecting with my essential nature so that I do not lose further contact with it. Escaping my true nature or the pain of my personality was simply no longer an option for me. I had to face some hard Truths about myself and my role on this planet. I had to question the ways in which I was suppressing the undifferentiated essence of who I AM. I had to wholeheartedly let go of some constricting ways that constrained me to the physical realm of habituation. I had to ask myself what my core values are so that I can begin to act on them. I had to find my Self beyond my cultural conditioning, beyond my personality, beyond the “I am” that I have been told that I am.

As time goes on, as I become increasingly more aligned with the frequency of my essential Self, I begin to live from the wisdom of my intuition. I have now had the pleasure of having made a number of decisions with absolute ease, because I knew what I knew and I knew what the right decision was for me. I am getting increasingly better at making decisions not out of fear, but out of conscious choice, with ease because I am beginning to listen to the wisdom of my intuition. I bought a house because it felt like home; I planned a particularly unconventional vegan wedding at a children’s campground because that was who we are; I stepped into a variety of unconventional healing methods because there was a call. And I listened.

As it turns out, stepping into our authentic Self is the most empowering, life-altering, revitalizing decision we can make for our Selves. It is a decision that allows us to connect with the more that we know we are. It presents us with access to our Truth. It allows us to take decisive action from our core, despite how unconventional those actions might seem. It allows us to live in freedom within a world that is most definitely designed to chain us down. It allows us to be in this world, but not at the effect of it. It allows us to truly live a life of purpose, for ourselves.

If, instead we chose to live from the wounds of our personality, we will necessarily manifest dis-ease not only in the psyche, but also in the body because we are not being true to our Selves.

This was the final and enduring legacy of my Nena Deko. This was her everlasting lesson. I feel it so profoundly, to the deepest places within my bones. And I am forever grateful that she was Soul present in 30 years of my life. I know her lessons aren’t over. I am willing and eager to experience whatever else she has in store. Nena Deko, te degjoj.

From now on, I know that I will do the best that I can to stay open to guidance, to allow essential qualities to come into my life. I know that I will cultivate, to the very best of my abilities, love, trust, compassion, strength, joy, truth, beauty, radiance, value, embodied wisdom. I will listen to my intuition, to the whispers of my guiding ancestors, to the wisdom of the Soul because they have always known.  

Today, I know where true power comes from. I trust in my ability to be able to discern my own Truth. I know I am beginning to nurture what I value from my Soul. I trust in the innate wisdom within me and I know that as long as I remain in close contact, I will live a life that embodies the pure essence of my Soul.

For this eternal lesson, I have Nena Deko’s legacy to thank.

Nena, I know you know. And I know that you know that I know. I am forever grateful.

Now I am ready for Nona’s lesson. Whenever you’re ready, No, I’m here, consciously awaiting your guidance. Po te pres…