Tag: Alzheimer’s

Jelly Donut Love: It’s About the Filling

Sylvia: I’m thinking about life right now in terms of jelly donuts.

Erma: Of course you are. Everyone should think of life that way. Sweet and full.
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One year ago today, while I held my father’s hand as he left this earth with the same strength, dignity, and humility that I imagine he entered with, I thought, “Why? Why now?” And after reflection with my son and conversations with God and those in my circle, I realize that the point is not how he died or even that he died. The key is how he lived. With integrity. With conviction. With zest and appreciation. With gratitude and intention. With love. With LOVE. Jelly donuts, folks.

And now I know. My father’s purpose and legacy is one that is so simple, so timely, and so easily missed if you haven’t been paying attention. Jelly donuts.

My father was raised by a man who emigrated from Russia in 1916. A slight, sweet man who raised a family and worked hard to provide. A man, a zayde, who trekked to Cousin’s bakery (New Britain, CT) to pick up jelly donuts and bulkies for his grandchildren. My father, Sam, learned from his father, Jack, the importance of jelly donuts. Jelly donuts every Sunday morning, rain or shine. Jelly donuts equalled love.

So, Dad, like his father, brought his four children jelly donuts every Sunday along with hard rolls and Breakstone butter. (Truth be told, a dozen mixed including jellies for him, two plain for Mom, and glazed, chocolate frosted, and sprinkles for the kids.) Every Sunday. When his children began to have children, Sam became Pop-Pop and would make the rounds to his grandchildren. Jelly donuts. Love.

When my father was declining, I never thought about my actions. I just did. I went into auto pilot. Comfort and consistency. Dad loved his jelly donuts. From Cousins bakery in New Britain to Village Bake House in Niantic to O’Henry’s in Morgan Hill to Dunkin on Cape, we devoured, savored, and indulged in jelly donuts. And I vowed when my father left my home that he would never go without a jelly donut! I’d like to think he never did.

Jelly donuts. Love. Giving and receiving of both. THAT is my father’s lesson and legacy.

Dad, the first man who had my heart❤ Missing you terribly, but I’d like to think that you and Mom are enjoying your favorites today and fighting over the crossword.
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“To love and have been loved. That is the essence of a life well-lived.” ~ (K. Morgan)

Sweet filling. Oh, to be savored!

Simple Abundance

Say these three words aloud: apple, table, penny. Now, remember them. Simple task. Meaningful? Meaningless? Well regardless, we take for granted that we will always be able to perform the seemingly easy; but when all is said and done, those uncomplicated words and ordinary, mundane acts are nowhere near as impactful as watching him react to music of yesteryear or to the retelling of one of the countless stories he shared with me, stories that I am now charged with and honored to share with my loved ones and others on similar journeys. For me and for him, remembering that he was a member of the state championship relay team at Teachers College and being able to play back and recount that race and those feelings of glory were so much more important than the three plain and undecorated words that he could not remember ten seconds after they were uttered. That story of the past brought laughter and smiles to a room full of medical professionals who entered it both seriously and mission-oriented yet who left perkier and even more committed than they ever imagined they could be.

So, when we are feeling sorry for ourselves— admittedly, I do this more than anyone should or has the right to— let’s stop and get a grip. Hold on to the big, bubbly moments and memories from which we draw the strength to start all over again. That is our mission really, isn’t it?

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“…We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.”
(~Benjamin Button, The Curious Case of Benjamin Button)

Do you see it? Hope is rising and ablaze early on a Monday morning.

Six Says Goodbye

Who knew that the sixth time something happens it still has the capacity to take one’s breath away, to give pause, to cut to the core? If the first is a surprise and the third is old hat, then certainly the sixth time should be tedious and uneventful. Not the case. At all. The passing of her father’s sixth roommate in not quite four and a half years shook Sylvia. One would think that she would have grown accustomed to death, that it would have become easier to handle and accept, especially in light of the daily visits to the nursing home. Not true. Not for her anyway.

Out of respect and privacy, I’ll refer to the dear man who left this world at around midnight, late Friday/early Saturday last week, as Mr. H. He was frail, ailing, aging, and I’m hoping he was at peace. I’d like to think he left on his own terms and had made peace with himself and anyone and anything else that gnawed at him in this life, but who knows, right? I only know what I know and what I saw.

Mr. H had been at the skilled nursing residence for some time; it was his home for better or worse. He and his older brother had made the skilled nursing facility their mutual residence in their later years, living and rooming there together as each dealt with his own infirmities. They had each other and that was a lot. Maybe that was everything. I think it just may have been! When his brother died, Mr. H moved upstairs into my father’s room. In my mind, once people share space for an extended period of time whether under the best or worst of circumstances, it makes them family–automatic family because (1) you are living together and not necessarily by choice; and (2) you’ll be privy (whether you want to or not) to all of the intimate and likely not-so-pretty details of the other’s life- family dysfunction and bodily functions. Let’s face it, folks. Once you’ve shared space, passed gas, and dressed and undressed in front of another day in and day out, you are no longer strangers. Again, for better or worse. So, Mr. H became family. Although he and my father never engaged in conversation, I do think that each found quiet comfort knowing that there was life, another being, just a few feet away.

For Dad and Mr. H

Here is why six is so tough though. I came to know one through five through their visitors, their friends and families. Whether frequently or sporadically, each was visited at some point by someone who cared. I had the honor of seeing each man engage in life at various moments and experience joy, even if only for a few minutes at a time; when a daughter or son dropped by on the way to or from work; or when a wife was able to find the physical and mental fortitude and/or transportation to make the trek. The little chunks of time shared with a loved one made all the difference. The “brothers” whom my father came to know in his own way, they were allowed to be who they had been all their lives, authentically and intrinsically themselves because of their relationships and loves, rather than who they had become as a result of the injustice and weaknesses of their illnesses. Six, Mr. H, was different. He never had a visitor. He hadn’t had one since at least six months before the pandemic. Think about that. Not one person. No one in this world felt the need or desire to visit Mr. H. Did he really have no one?

I could write forever ad nauseum about this, but I won’t. Frankly, it’s upsetting; and those to whom I’m trying to make a point are those who failed my father and will likely fail others who hang on to a love that cannot be reciprocated or offered unconditionally. I don’t know. I’m not their judge, but I do recognize a hubris, a lack of accountability, and a seeming nonchalance about their role in a loved one’s final days. Mr. H at some point in his life engaged with the world. Perhaps he was mean, a recluse or curmudgeon. Again, I don’t know. However, don’t we as human beings owe one another something – a morsel of decency and a little tenderness, especially in the end? Just as we all came into the world being anticipated and welcomed, wouldn’t it be lovely to leave the world or to help someone leave the world knowing that it’s not all bad? He or she mattered. If all another teaches us in the course of his, her (or their) life is how not to live and what we don’t want, then they have done this world and likely all of humanity a huge service. They have made your life, my life, more meaningful.

Six was hard. Mr. H, I hope you know that you made a difference. You were family. I will not forget you. May you rest in peace. Say hello to your brother and brothers, my father among them now.

Sometimes, almost always these days, Sylvia hastens to remind herself that we only learn how to live by watching how others are treated or mistreated, especially as they approach death. How to say hello comes naturally and easily. How we learn to say goodbye? Not so easy. How will you say goodbye?

All There Is

My parents were pretty private people, considering my dad had a fairly high-profile presence in our hometown and Mom, by virtue of her marriage to him and her longtime employment at a couple of business mainstays around town, also found it difficult to go incognito. They tried though, especially when it came to showing weakness, vulnerability, or just ordinary flaws. That was clearly an attribute or a shortcoming (not for me to judge) of their generation. They both knew though I’m sure that I needed to find and expose something redeeming in their terrible illnesses and in their stories, so I don’t really care if I’m judged for sharing this intensely special moment. I want you to know that when you wonder why I miss an event or say no to an outing, that this is my reason. Not my excuse. My reason for having set my priorities as I have. You set yours and I set mine. Friends accept and support; they don’t judge.

Well, on this day as I reflect on that which means the most, I’ll leave you with this. When you think there is no hope, no solace, and no good in missing something or someone because it doesn’t change a thing, a moment takes your breath away to show you that there is always hope, comfort, and good especially in the ordinary- in what we take for granted every single day-until we no longer have it at our fingertips and within earshot.

This is life in a single moment. All that matters.

Just when you think a page has been turned in the book- the memory book, that is- life has you go back to revisit what makes your heart full, brings you peace, and gives you the momentary reprieve, reassurance, and validation you need.

I hadn’t heard my name, my given name anyway, cross his lips in many months. And tonight, as he has just begun to turn the corner on a bout with pneumonia and was well enough to have an ice cream sundae, he said it, meant it, and knew me. Really knew me. I felt it with every fiber of my being. I’ve never liked my name that much until this evening.

Listen closely after I ask him if he’s ready.

Don’t call me a wonderful daughter. I don’t need praise. I’m just sharing this with you because every single one of us needs to know that individually we can make a difference and that one brief, fleeting moment can make all the difference in our own lives.

This is what is called a savorable memory.

❤❤❤

Lost & Found

Erma: It’s been a decade, right? Since your mom passed?

Sylvia: Yes, ten years in the blink of an eye. She must have been counting the days.

Erma: Yes, she undoubtedly wanted him home with her. They had been apart for too long. They were ready to be reunited and to live the eternity they had promised each other.

Sylvia: I wasn’t ready though. I’m still not. I don’t know how to navigate the rest of the journey. I’ve gone from devastated to lost.

Erma: Time. The only answer. It won’t heal but it will carry you. It will give you the life jacket you need from time to time to endure the waves that will pummel you at the most inconvenient and unexpected moments. 

Sylvia: I don’t need a life jacket. I’m not drowning. I told you I feel lost. I’m numb, shivering, in a blinding snowstorm, and I have no idea of what is ahead.

Erma: None of us knows, Syl. That’s where the notion of faith enters. And you are so far from lost– lost suggests that there is something to be found. There is nothing to be found and everything to be felt.

Sylvia: Oh, okay, then I’m right on track.

It’s been a month of Sundays since he passed, figuratively of course. Much longer in reality, and certainly it feels even more like an eternity. I’m not paralyzed or empty or broken. I’m numb. 

Every morning I awake hoping that I’ll complete the journey- the journey for which none of us is ever fully prepared- the journey off and away from the path of grief and sadness. Most people describe grief and its effect as wave-like; it ebbs and flows. It washes over you. It brings you under and makes it hard to catch your breath; and as soon as you stand and catch your breath, another wave knocks you down. It’s not a wave, not a ripple or a tsunami. It is more like the breathlessness you experience on a sub-zero day in the middle of January up north. This grief, this numbness, is totally different than any other I’ve ever felt. I can’t fully compare it to anything, not yet, because I know I haven’t lived through it completely. I doubt I ever will. Although if I had to liken this trek and its encumbrances to a relatable situation, I would imagine how one feels at a “Lost & Found” bin or depot. Hopeful yet aware of impending disappointment. Each morning I wake up headed to the lost and found. 

The phone rang last night. A message was left. “Your belongings have turned up. We are holding them for you at the ‘Lost & Found‘ window. Come at your earliest convenience.”

So, I awake with a controlled eagerness to pick up what has been left. After all, it is mine. It has been left for me to retrieve. I shower, get dressed, and off I go. On my way to the “Lost & Found” today. Every day for a month of Sundays. 

The journey has not taken me away or off the path. I have yet to retrieve what I believed belonged to me. I have yet to find wholeness. Perhaps I never will. Perhaps it is never to be found. But for now, I’ll keep listening to the message each night on the machine. I will keep getting up to see if the depot actually has what belongs to me. What needs to be reclaimed. I will live with the numbness- not in wave-like motion but in a traipse, much like the plodding of wearing full winter armor in heavy, wet snow on a frigid winter’s day.  And eventually – I hope anyway- faith will melt the snow away from the path.

I hope I will recognize what it is I lost. If not, I hope I find the strength to delete the message and move forward.  

Feeling Whole

Erma has been overwhelmed and more than anything else desires time to herself- time to inhale, exhale, and repeat. Sylvia craves space of her own- both mental and physical room. Time and space provide each of them the framework within which they can refuel and remain whole.

Take an hour. Take a day. Take a week. Walk outside. Sit in a café. Treat yourself to a spa day- even if it’s makeshift in the privacy of your own home. Whatever you need to make yourself feel whole, discover what that is and do it. Now!

You cannot be whole without the time and space to feel all that you are feeling!

“Each day holds a surprise. But only if we expect it can we see, hear, or feel it when it comes to us. Let’s not be afraid to receive each day’s surprise, whether it comes to us as sorrow or as joy, it will open a new place in our hearts, a place where we can welcome new friends and celebrate more fully our shared humanity.” ~Henri Nouwen

“Choose to Remember”

Erma’s left to go about her day after coffee and conversation with her best friend. She leaves Sylvia to contemplate the day and so much more.

As we finally come into summer weather, I think often of my family, extended and adopted, as well as my many friends- both near and far- who will be celebrating big milestones with and for their loved ones and the country with great fanfare and zest. My heart becomes instantly full. And then, just as quickly, I grow agitated and even a bit sad and disgusted.

I thought about this long and hard before I decided to share these thoughts, and then I remembered, that each of you has the option to either read and reflect or skim and skedaddle. So, I’m sharing because -to me- this is the stuff that we are meant to share, so that we can help each other through the rough spots. And one day each of us has or will have a couple, several, or many very rough spots. That is inevitable.

When my mother became ill in 2007 and she and Dad came to live with me and my family in California, everything changed. Family dynamics. Relationships. Life in general. My mom fought her battle miles away from many, but still she felt connected to the world. She was still a citizen. Still a mother. A nana. A friend. A sister. An aunt. She received calls, cards, visits, emails, etc. That ability to communicate is so often, too often, taken for granted these days because perhaps it requires so little forethought to text or communicate via technology. (Communication though does require thought– for now anyway.)

When one is fighting for life, it is an internal war of massive proportions. Your loved ones try to empathize and offer support and help to fight the daily skirmishes. The war though, the one that will inevitably be lost, which is really not a defeat but a matter-of-fact in life, is a solitary one. Death. Mom fought with all her might. People admired her strength, her guts, her spirit, and her grace. And indeed, my mom was strong, gutsy, spirited, and graceful. My mother was also a fairly private person who had a very public illness. An illness which everyone- EVERYONE- is touched by and despises.

Here’s where my thoughts, sadness, and disgust come into play. Woe is not I. Woe is WE. We fail in so many ways.

My father as you all know battles another dreaded disease- Alzheimer’s. He’s in the late stages now. He, unlike my mother, was a very public person, yet he has been saddled with a very closeted disease. It is we as a society comprised of supposedly loving families and friends who fail. It’s not that people don’t care. It’s not that awareness isn’t growing. I think it’s this simple and this heart- wrenching. The man that people knew is closeted. While he is locked away in his own mind, it is the key that everyone throws away that makes me sick to my stomach. He can no longer walk the streets. He can no longer go to the coffee shop and shoot the breeze with his buddies or those about town. He can no longer enjoy a meal in his family’s presence. Whereas my mother had the choice as to whether or not she would continue to do those things, my father does not. And therein is where my sadness and disgust emerge.

Alzheimer’s does steal from the person who is afflicted, but my sadness isn’t for my father or for myself. I am saddened by and for the many who don’t see him, or their own friends and loved ones with the illness. Dad is not dead. “Life is for the living” I hear time and again. Guess what? The smiling man who looks fabulous in yellow is very much alive. His pleasures are few, but if you could see how he still enjoys a jelly donut, holding a hand, or someone who smiles at him in passing, you’d know he’s very much here. He’s not the same man at a glance, but he’s the same man. And for the record, I am not a wonderful daughter. I’m just a daughter, a human being, who is doing the best she can. I’m the girl who still sees the light and laughter in the man who taught her to step outside of herself and give back to the community and world at large.

So, during this ensuing week of remembrance, post Memorial Day, remember that the sorrow you feel and condolences you offer to the caregiver while appreciated are not warranted and do not make the caregiver necessarily feel better. I am caring for someone who is still alive. Very much alive. It is a slow process of dying, but the end is not here. In my mind and in the eyes of a power greater than any of us, my father and others who live with this disease are still human, still feel, and still contribute. They are teaching us to value life. I and others who have Alzheimer’s in their faces each day would much rather you see, really see, that our person- our father, husband, brother, uncle, and friend is still there. Is still here. Send a card. Make a visit. It may be hard for you, but trust me, the small battle of getting through the day would be so much easier for the Alzheimer’s patient if he or she was not totally forgotten and closeted. Being locked in his or her own mind is bad enough. And I guarantee that if what you are looking for is a moment to stop and appreciate what you have and to get outside of yourself, Alzheimer’s is the wake-up call.

Remember. Remember. Right now you have that extreme luxury.

Wishing all of us peace, joy, and the power of remembering what it means to live and love fully and with intention and purpose.

So many things come to light when Sylvia sits out in the sunshine on the cove.

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