Creative Everyday

My sweet husband passed a year ago and so many words now have meaning. His spirit lives on in my soul. I am eternally grateful for the light of compassion, tenderness and love that he brought into my life.  Although it has been a year of feeling extraordinarily vulnerable, I sense his presence and can move on, with courage.

Only recently, I started to think that he would be proud of me, picking up my life,  making a difference in this lifetime, knowing that I am not done.  I want my life to honor his memory, in humility and integrity. It takes courage to hold this together while longing to be in his loving presence, his hand was always there for me. My heart is broken and I suffer the pain from loss. This morning, while meditating, I saw him sitting opposite me, smiling and I did not want to come fully alert.

He lit up my heart, my life with happiness from our first date to the end, feeding him mashed/processed chicken and vegetables from a spoon in a dementia care facility dining room. I never didn’t want to be his wife.

I am filled with many simple memories from adult day care, before he entered the facility in 2017.  Greeting him, arriving home on the shuttle bus, clutching a prize he had won in a game during the day, a new small calculator in hard plastic packaging, special for me. I always asked him if he had a snack that afternoon, knowing what he would say but enjoying watching him trace a circle in the palm of his hand saying “small things,” maybe cheese or Goldfish crackers.

Memories of his generosity and kindness will always nurture me.

I promised him often that I would always love him.  He used to say this to me too when he could speak, when he had language, and I knew he meant it.  Every time he heard this, he would kiss me. I wanted him to live forever so I could claim that kiss, I would tell myself, as dementia continued to take over his brain’s capacity. This yearning in a strange way helped me to have hope to go on. With each day, I  was witness to his decline, that I was losing him. This sadness was always with me until it turned to grief.

Today I understand that the gift of love that I experienced for sixteen years will be treasured as long as I live.  I will always miss him and what we meant to each other.  In memory, our loved ones live on.  I am forever grateful and humbled by the process.  My difficult childhood and his previous broken marriages now have a proper place in the depths of our personal histories, far from the passion of our life together.  This is the power of love: sustained, compassionate attention.

As he descended into dementia, I was his only caregiver.  Even while the demands of taking care of him at home were overwhelmed by nocturnal psychotic symptoms, I would not stop trying to provide some normalcy to our lives until his geriatric doctor intervened.  She said with the medication she prescribed, he was no longer safe at home, walking around steps in the dark,  listening to the voices in his head. She said that he needed 24 hour care with medical supervision and recommended a nearby facility.  The day he moved to that place, even though it looked like a hotel in Provence, was one of the worst days of my life.  On that first night, as we kissed goodbye, he asked me where I was going, I said home and he told me he understands.

In Judaism there is a memorial prayer, El Malei Rachamim, and it is explained this way: “Our loved ones live in our broken hearts. Their acts of kindness and generosity are the inheritance left behind. We feel their absence; but the beauty of their lives abides among us.  As it is said, The name of one who has died shall not disappear. Our loved ones’ names – and their memories – will endure among us.”

“So long as we live, they too shall live, for they are now a part of us, as we remember them.”

The last words that my husband spoke in a language I understand. His head was hanging low, too heavy to hold upright, close to his chest. Slumped in a wheelchair, I did not recognize him from across the room. In the dementia care unit, there are many men in rolling chairs and with his recent illness, his appearance fit right into the line up. This is our photo taken on December 4th, 2018.On December 17th, 2018 he was admitted to the hospital with a GI bleed. The doctors told me that they could not fix it and that he would never walk again. They gave him a blood transfusion and some intravenous medicine. He did not improve. I thought that I might have to kidnap to get him back to his room at the residential facility but when I signed him up for hospice care, the hospital was eager to get him discharged, knowing that whatever was wrong with him, they could not diagnose due to dementia. The staff, his residential family, was so excited to have him home and I was relieved that I was not alone. He was energized by the warmth of their heart-felt greetings.

Less than four weeks later, he died with the same symptoms that the hospital could not fix. He was very sick that day. I asked everyone to leave his room and pulled a chair along side his bed. Holding his hand tightly in mine, he slept peacefully. As his breathing slowed, he released my hand and I knew that he had passed. Just the two of us, the way it was supposed to be. A last breath. I will never forget this.

Life is a gift. It takes courage to love. May his memory be a blessing, a blessing on you, dear readers, to live your life fully, with passion. Value every day. Do not waste what you’ve been given. Life is fragile.

If you want to hear a resounding ‘YES,’ ask my husband or anyone in his residential group if they’d like some ice cream. I believe that it has magical properties. Everyone sits up with increased interest but ice cream cones are baffling. Ice cream is not ‘finger food’ and holding it one’s hand and licking just doesn’t seem to make sense.

My loved one has forgotten how to feed himself although he still has an appetite. I just learned how by watching the caring staff. The prompt is “READY?” He’s trained to this command and it works every time. No longer do we have favorite foods except for any flavor of ice cream!

And rarely is there a signal that he’s full, he’ll say “it’s for you!”

I recently found a notepad with handwritten text.  When my husband was cared for at home, Sundays were for oatmeal breakfast, library writing practice in the afternoon promised by ice cream afterwards.  This is the last intelligible text that he wrote, copied from a children’s book.  Please, if you can identify the author, comment below.    He no longer has language skills but I hear his voice and thoughts in my head.  I can feel his snores in my sleep too. I am grateful for the love and trust we have and like Alexander Hamilton’s wife, I will tell his story.  One lifetime is not enough.

You know that this post is not about sex, it’s about love and living fully. I’ve read many books through Audible, listening to professionals read aloud but this summer, I read a book the old-fashioned way, visually, clinging to its dust jacket. It has profoundly changed my understanding of what it means to be human.  I had never read anything so simply written inviting me to “welcome everything, push away nothing,” Ostaseski’s words, to accept life as it is and give up my yearning for life to be different.

I have a fantasy that someday my sweet husband will greet me at the facility, put his arm around me, and clearly say, ‘let’s go home, I’m all better now and I miss you. ‘  I will always suffer from witnessing my sweet husband ‘s descent into dementia.

Suffering is part of everyone’s life. Aging is suffering.   I struggled for years feeling part of humanity but somehow disconnected by despair. I took disappointments to heart.  I would use up all of my energy searching for hope and finding sadness.  By reading this book, I understood how important it is to live life fully, on its terms and found mature hope and love.

With 17 months of experience, my perspective has become more thoughtful about life in an assisted living facility. No matter how attentive the staff, a person feels isolated, without purpose or choices as they near the end of life.  Suffering is their constant companion.  Simple acts of kindness have made a huge impact on my heart, love as mentor.

At The Kensington Senior Living, I saw an elderly resident whom we know, sitting in the common area, alone. She is often at that spot by the front table. When I use the elevator, I am reassured seeing the back of her wheelchair.  Recently my husband and I sat down with her to keep her company for a few minutes. He has little language; does not understand or speak.  Ten minutes of chat includes relaxed smiles and easy laughter, we rise to go and here’s the ‘punch line.’ She says to me while I was looking straight into her watery eyes: “Thank you for sitting down to talk with me. Would you believe that I was here all day yesterday and no one said hello to me. How can that be?”

The same day, I purchased some beignets in the building’s new cafe and asked the Director if I could offer one to a resident who I know has not been eating very much, part of dementia’s severe decline. Recently, this resident has been sounding off, not using her words. She eagerly accepted the sugared petite donut and after eating half, politely thanked me for offering one, in a clear, calm voice, from deep within.

I recently saw the play “Hamilton.”  At the very end, Hamilton’s wife sings a song that took my breath away, “when you are gone, who remembers your name, who keeps  your flame, who tells your story…”  One lifetime is not enough time.

Wearing my hat and (1) smiling, (2) relaxed, confused and (3) responding to my prompt for a smile:  “show me your teeth” – In 10 seconds, all 3 photos!

I am a drug pusher.  Words I thought I’d never write.  With a broken heart, I witness his continuing decline deeper into dementia.  On diagnosis, I promised him the best retirement that we could provide. He wasn’t fearful of what would happen next even though he had been the sole caregiver for his mother who had dementia and endured on a feeding tube, lying inert in a nursing home bed for years.

Back to the drug tale.   I sensed his suffering without sleep. Insomnia was depriving him of being present in his life.  Just staying awake had become his primary activity. One day recently, I stood next to him, clutching his hand, with his head tilted forward as if it were too heavy to be upright. I couldn’t make him laugh, no matter how silly I tried.

This cannot go on.  I had to do something to get him sleep.

For more than two years he has not been able to get a good night’s sleep. When he was living at home, he would keep me awake with pleas “what should I do?”  For the past year in assisted living, I have been hearing the reports of his nighttime adventures, gifting his belongings and toiletries to anyone and sometimes, the other residents would not want to give back their ‘gifts’ which were graciously accepted.  They were gifts, after all.

I had repeatedly asked his doctor and the directors at the facility to give him something to sleep. I’ve listened to many explanations of why facilities don’t want to medicate for sleep disorders because the meds can cause many bad effects including sleep-walking and  falls, hallucinations and grogginess the next day.

It was not easy to get his doctor to recommend a drug and write the prescription.  Everyone needs a medical advocate to fight for their quality of life! This is the take-away from this post.  I do not want to see needless suffering.  I cannot let him lose his sense of humor or be deprived of the joy of ice cream.

I am his voice. I am responsible. For the past two weeks, he has been sleeping at night and awake for breakfast.  He is alert and talking, it’s not the english that we share, but it doesn’t matter. Hearing his laugh, I nearly cried.  He’s still here.

A link to the drug is below.  It’s Rozerem aka Ramelteon.

https://www.rozerem.com/why-ramelteon

The aide screams when she returns to the TV room with the remote control she had been looking for and sees another resident orally pleasuring my husband. Action stops. Reports are made in the facility and the state Adult Protective Services, the agency that investigates abuse in the 60+ population. The police came immediately to investigate. More reports are filed. The next day I met with the Executive Director of the facility and his doctor called to ask if I knew. I am alerted that the police may contact me.

Dear reader, I cannot spare you the excitement.

My sweet husband was not hurt. He had no idea of what was happening at the time or afterwards. He does not know what those parts are for (‘down there’) or why he wears Depends, not jockey’s. He is helpless to protect himself or tell me what he thinks about anything. The aggressive resident now has a private aide 24 hours 7 days/week to watch, assess, report every move. The facility has taken every precaution to protect the other eighteen residents with severe dementia from anyone acting out.

Perspective: incidents like this happen in moments of time, so quickly, but his entire life is lived in and provided for by that facility and loving staff (my husband used to say ‘so far’). His care is in service to their core values. Dementia steals every part of one’s humanity. I have compassion for the culprit whose dementia brain doesn’t know appropriate behavior but is longing for intimacy.

My dear husband lives to have something to eat and be with me, the one who listens and hears him in the silence between us, love is enough. We sit close together on a plush sofa in a beautifully decorated sunroom on his unit’s floor, fresh air breezes. I set up my iPad so we can watch the wedding and share a soda. Moving images have no meaning. It’s all gone.

Whatever the temperature is, he’s cold. I put my long sweater on his muscular arms and ask him if it’s too tight. He’s happy to be wearing my clothes. He fiddles with the ends of the sweater near his knees, not looking at the iPad. I know that he wants to know why there’s no button or zipper keeping the sides together. Finally, I tuck the ends under his pant legs. Distracted, success.

Tonight I watched a tv program “Hollywood Medium with Tyler Henry, a sweet, sensitive guy who can hear voices from the deceased, interpret what he hears while making marks on paper and communicate a meaningful message to their loved ones. It is called a ‘reading’ and gives comfort from the other side to the living, the still-alive family members.

Where is my Tyler Henry who, instead of being greeted at a Hollywood mansion’s door, would come to the elevator of my husband’s beautiful assisted living facility? I need a “Medium” who can ‘ retrieve or locate’ the memories or messages stolen by dementia and communicate to me, the still-alive loving wife, meaningful words of comfort from her declining spouse who no longer has words.

Five years ago, reading from a script we prepared together, he called his family and shared the official diagnoses. I remember that day and in the moment, didn’t realize that his brain was about to be thoroughly erased. He would no longer remember anyone – that he is married, had children, grandchildren, brothers and a mom and dad who loved family. All memories will be permanently gone.

What if the star Tyler Henry could visit our loved ones who are still living with dementia and tell us, their caregivers what we yearn to hear – that they, our partners, are sorry that dementia stole their lives from them and that they love us for caring for them ! And Tyler often says of the deceased, that they did not suffer. I hope that is true for my dear husband. I can no longer tell by how he looks, if he is at peace or possessed by agitation. I only have sad tears and memories.

I thought that the next blog post would be about my heart break when the Director of Memory Care handed me his wedding ring. It was recovered from under his bed in the morning. She thought it would be lost, best if I took it home. I felt that she was giving me back a part of myself that I had lovingly given away and wasn’t supposed to ever have back.

Then I found an extra set of house keys, tarnished and worn. I held them in my hands and knew they were his keys. Probably left on the dining table, their usual spot, the day he moved to the facility.

Simple things, symbols of how much my loved one has lost. Connections to a marriage and the freedom to come and go from home. Dementia erases everything that was part of your life as you once lived it and leaves you only with the present moment. I try to prepare myself for the time when he does not know who I am. Tears. My vulnerability makes me toughen up.

Now he struggles to make words. I hate telling him that I don’t understand, to try again. His speechlessness is devastating to me for I long to have a conversation with the man I married twelve years ago. My sweet husband moves on to the next indecipherable phrase.

Tonight after his dinner, I tried to turn on a TV show to watch together snuggling in an oversized chair in the privacy of his room but he’s distracted. He leans over and kisses my forehead as always. I ask him if my hair gets in his mouth. He says “sometimes,” the word comes out clear as a bell and he kisses my bangs again. “I love you,” he says, words he still shares ten thousand times. I look into his big blue eyes and tell him “forever.”