"Letters from Love" by Laura Blanco

Letters from Love

Laura Blanco, Cedar Crest College

Artist Statement: While navigating the reality of people living with and caring for someone with Alzheimer’s disease (AD), I found myself mourning the lives of those who were diagnosed with the disorder, regardless of the severity and age of diagnosis; it always felt as if they were being denied the life they were meant to have. Sites such as Alzheimer’s Connect and the blog Oh Hello Alzheimer’s are places where individuals diagnosed with or caring for people with Alzheimer’s disease feel free to express their emotions, share their challenges, offer guidance, and more, allowing for a deeper personal understanding and connection with one another. Memoirs about beautiful and heartbreaking love stories between mother and daughter, between husband and wife, filled my heart with sadness and joy, because even through the hardships and endless obstacles that Alzheimer’s disease throws, these people were able to find beauty within, while trying to hold onto the memories and love they had of each other. 

Here, I composed a series of fictional letters that a person with Alzheimer’s sends to their loved one after being diagnosed. This fictional piece, inspired by real individuals, aims to show the love, compassion, and decision-making that people face throughout the progression of Alzheimer’s disease. I hope to show the audience that this condition is not simply a memory deficit but a much more complex and devastating disease. With these letters, I try to reflect some of the examples of the hardships and cognitive changes that people with Alzheimer’s disease will experience, as well as the physical and emotional toll it has on the caregiver.

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1

Person with AD to caregiver (Early-stage Alzheimer’s)

Hello love,

I cannot begin to describe the avalanche of emotions I feel right now. I have recently been stripped of a chance of happiness with a heartbreaking diagnosis.

Believe it or not, I’m in the early stages of Alzheimer’s disease. I am only 49 years old; I thought I was at the peak of my career, so I attributed the signs of something being wrong to possible burnout. I mean, have we not all forgotten a thing or two while balancing life? I would never have imagined I would have to endure this disease that has already taken so much from me. 

As we both know, we’ve seen how this disease gradually takes away the independence and joy from its victims. Deep down, I was in denial because I believed that God wouldn’t make me go through the same illness that claimed some of my family. I thought I would be spared from this fate as a reward for caring so much for my loved one, but I suppose that's not the case. I guess I am one of His strong soldiers. I guess I will have to endure this. 

I am writing this letter to give you the choice to go; I am setting you free. I love you with all my heart, but I realize what lies ahead for me and you if you were to become my caregiver, because I know that caregiving is one of the most challenging tasks anyone can accept. You will have to witness my decline and endure whatever challenges I encounter while trying to stay strong for both of us. That’s why I cannot hold you back or drag you down this road with me. 

I will not resent you, and I will understand if you decide to leave, because I will always love you—even when I no longer understand the concept of love. But if you choose to stay, I want to apologize beforehand; I think I must do it now that I am conscious, in control of my body, and still have the ability to advocate and express my feelings. I did not want this for my life. I hate it here, the confusion, the forgetfulness. I was never like this. I do not know who this person is, and I know that it is only going to get worse. I am scared; I am afraid of losing myself. I don’t want to go into the shadows and disappear; please forgive me when I do, and remember that even when my mind wanders, I will always love you.

Caregiver to the person with AD 

Dear love, 

I am sorry. I know that your world has recently been destroyed, and you fear that the person you have become is going to disappear. But I want you to know that what you feel–fear, anger, confusion, uncertainty, grief–all these emotions are valid because it is scary and unfair to be confronted with such a horrible fate. You do not deserve to endure what is coming, but you will not have to go through with this alone because I will be with you every step of the way. It breaks my heart not to have a solution for you, which is why I want to make you some promises that I will try to follow until the end. 

1. I will see you: I will not let you feel unseen. You will be part of my life and the conversations around us to the best of your ability. When it gets harder for you to recognize people, places, and events, I will not let anyone interrupt, dismiss, or ignore you because I know that even though you may forget the encounter, feelings stay for longer. You will not feel invisible or embarrassed on my account. 

   
   

2. I will hear you: As time goes on, I know that our communication will decrease, it will be harder for you to process information and for me to understand what you are trying to say, but I promise that I will adjust my talking and give you the time you need so we can still talk and feel connected; I promise to learn to speak any new language you develop. 

   
   

3. I will protect you: I won’t let others look down on you with pity, making you feel inferior, because I know you are still in there, battling to be seen. When times get tough and your well-being gets compromised, I will take over the necessary tasks to ensure your safety. And when the surroundings, noises, and objects become distorted, know that I will make them clear for you to feel safe again. 

   
   

4. I will stay with you: I will hold your hand when we have to talk to others about the diagnosis and navigate this new uncertainty beside you. I will learn the patience I need to overcome the difficulties that will arise, and when your body stops cooperating, I will lend you mine and be by your side.

   
   

5. I will cherish our memories for you: I know that you will try to hold tightly onto our memories, but it pains me to say that no strength can beat the monster, who will eventually take everything from us. This is why I will save those memories for both of us, holding them dear in my heart to remind myself and you of our love through the hard times. 

   
   

6. I will join your world: I do not want you to waste energy trying to look “normal.” I want you to feel safe around me and know I will not take you for granted. If everything gets too confusing and you cannot exist in my world, I will join yours because I find joy whenever I am with you. 

   
   

7. I will forever love you: You are not leaving me, you are not choosing to forget about me, but you have no choice, this sickness will take over, and you will eventually forget who I am and how much we care for each other. You may feel ashamed for not being able to love me anymore, but don’t be. I know that some of that love will remain, holding on even after you can no longer express it, which is why I will do it for both of us, even after the end. 

   
   

We will go through these new obstacles together, and I know that no amount of research can prepare us for the confusion, uncertainty, and burnout we will both feel. Still, I will be there to help compensate you for the loss and to remind you of your worth and importance to me. I know that whatever challenges we are about to endure, whatever mood and behavioral changes you get are not because you are trying to be difficult or unreasonable, but because a treacherous monster has taken over my love. For now, I invite you to spend some time with me; I will take care of you, let us take advantage of the time we have left while you are still you and I am still me. And then, let’s spend some more time together.

2

Person with AD to caregiver (Middle-stage Alzheimer’s)

It feels like an eternity when I last wrote you a letter, I don’t remember what I wrote but I know I was feeling scared for mi future. I want to thanks you for caring for me, for loving me and putting up with my anger. I am feeling a lot of frustraition when I see not bein understood, but you make me seen and happy. thanks for helping me dress and for not letting them burglars take my pride possessions. I feel lonely and terrified I cannot stand that thing that is watching me. I know you may not see it, but it is there, and I don’t want it to take you away. I hope you read this paper in the morning and realize that I care for you too please do not be mad I am hard to sleep now days. I will try to keep on making the little drawings you love so much afther all that is about the one thing this sickness has not taken from my, I love you very much. 

Caregiver to the person with AD 

I cannot believe what I am reading; it pains me to see you feel alone. I feel ashamed to say it, but I am exhausted. I knew this would be hard, but I was not expecting this monster to drain every ounce of energy from my body. It is getting harder and harder not to feel the urge to snap at you, but I am reminded that it is not you who is hurting my feelings, it is not you who is unable to do the tasks I ask, it has never been you, and I see now that you are trying to tell me that. Still, I will follow through on what I promised and will try to make the necessary adjustments, so you don’t feel alone. This is why I will write to you something that I will read, since you have recently lost the battle that gave you the ability to read. But I want to have this first portion of the writing to myself to remind me how I feel and validate these emotions. I will also take the time to add another promise to myself because I realized that I must care for myself, too. 

8. I will validate my feelings: I am brave, although sick of being called brave because all that I want is to rest, to sleep, and not worry about caring for anyone, to get back the person I have lost. I must take care of myself because I matter. If I am not strong, then I will not have the strength to be there for them. I must remember that what I do and say to them matters; whatever I make them feel will stay with them for longer than the actions themselves. And remember, they are not acting this way on purpose; they are afraid and tired too, but at least I get to express those feelings and rant about them with others, while they must keep them to themselves because they can no longer express them. 

To my love- I love you too. I am sorry you feel sad. I will be there with you. Always. 

3

Person with AD to themselves (Late-stage Alzheimer’s)

To my memory.

Hello, stubborn, complicated, and obnoxious friend of mine. It’s been a long time since we last saw each other. Who would have thought I would be thinking of you? Nevertheless, here is my internal letter of goodbye.

I hope you understand that I am coming from a peaceful state of mind. I am no longer scared, angry, and depressed. I will not let those negative emotions obscure the little time we have left together. This is why I want to start by saying Thank you. 

You were one of, if not my most, precious possessions, which is why it breaks my heart to let you go. You are the defining factor of my essence; you are the very aspect that made me who I am, because thanks to you, I was able to go through life understanding what to do and who to be. You kept all my life experiences, family connections, and interactions with the world intact for the longest time I can remember. Funny how I use the word remember as if it means anything, but now, with deep sorrow, I am letting you go. I am making amends with my truth and accept that you can do nothing. I know that once the shutdown begins, you will try to hold onto our beautiful creations so tightly that you may think we have a chance to win the fight even if, deep down, we know that this battle is already lost. But don’t worry, it will soon be all right; we won't have to mourn any losses because there will be nothing to mourn.

I have reached a state where I am no longer certain of what is real and what is a product of my imagination. Did I really speak to my mother three days ago? Has she not been gone for over ten years? Why can’t I recognize the face of my daughter? Why did I feel constant fear and suspicion of the world? Are they really plotting against me? Was I not a logical thinker once? Who is this old intruder I see in the mirror? Where am I? I fear this moment of consciousness will fade away just like my life and all my accomplishments are fading away, but dear friend, don’t blame yourself. 

It is not your fault, you did everything right. You stood beside me, helping me survive and enjoy the incredible tale that was my life. Every good story must end; although it is earlier than I would have preferred, our story ends. I am grateful and at peace; I hope you are at peace, too. I don’t want you to battle anymore. It is okay. You can let go. There is no need to hold onto those creations of ours. We will meet again soon. I can feel it; we will have time to recover from our loss. 

And finally, I want you to know that I 

Caregiver to the person with AD and themselves

I cannot remember the last time I saw you through your eyes, though there was a recent occasion when I thought you looked like your previous self. It was brief. I think I joined you at the end of a lucid period, or I may have imagined it all. I am tired, and I may want to believe you are still here. 

Seeing what this monster has done to your body is the hardest, most devastating thing I have ever encountered. I cannot believe this had to happen to us. There are no words that can express the disgust and hate I have towards this illness; it stripped us of happiness, breaking us apart. The amount of shame I felt when I had to accept assistance broke me because it made me feel as if I was not strong enough to help you. Was I not supposed to always be there for you? 

I was not expecting this weight to be heavier than I could carry. But I am grateful I got the help I needed because this is not a one-person job, and the people around me were kind enough to offer their assistance when I needed it the most. I was not as alone as I thought; we were surrounded by kindhearted people ready to alter their lives to ease my weight. Their intervention helped me remember who I once was and reminded me of who we were at a time when I was starting to believe that all I ever was for you was a caregiver. 

I also want to thank you for showing me all the forms of love, challenging my pride, and trying to stick around for me. Still, I also want to thank myself, I deserve praise, I abide by my promises to the best of my ability, and I tried to make you feel as happy and at peace as I could. Ensuring your well-being meant that I rejected my own, I forgot about my needs, and gave in to the exhaustion. I learned that I needed to care for and love myself if I wanted to be there for you, so thank you, because even then, you showed me that I needed to be a priority too. 

This has been a lengthy road, full of obstacles, tears, and joy. This experience showed me that our love was so powerful that it gave me the strength I needed through the hard times. I also got to know you on a deeper level. I had the opportunity to immerse myself in your world, and I watched you age backwards psychologically, reviving and learning about experiences you had with and before me. Even though we have not spoken in a long time, and it is hard to see you in this stage, as long as I am here, you will never be alone. Even if it's to hold your hand or make you comfortable, I will be here for you.

I love you.