250.→Husband Journey: Missing
So, here we are, room 213B. Robert’s room looks out on the nurse’s station. The nurse’s station keeps an eye on him as he fell out of bed three times in the past. I caught it at a moment when the hustle and bustle had died down. Where was everyone?
It is not quiet, never quiet. There is always beeping or chatter or laughing, always a din that lives in the walls and invades sleep and rest, but, eventually, the patients become immune, deafened like they’ve never heard it and the visitor’s nerves remain jangled, and will never get used to it. It is the world of the nursing home. The place everyone fears. The place people say they will never go into but somehow endup. The place that people can never imagine themselves. Once you are in, if you leave you are likely to do so on a gurney and find yourself in a funeral parlor.
Because Robert is in decline, now about 100 pounds, barely eating 50% of what is provided, medicated for a urinary tract infection, he is on “comfort care.” It is like Hospice. The end. I declined hospitalization. I declined intubation, I declined the feeding tube they wanted to ship him off to get. I declined resuscitation. I declined. And in so doing, I can march in whenever I feel like it, but that doesn’t mean Robert will be there.
Robert is missing.
We are missing Robert.
He is gone and took his laugh, his jokes, his intellect, his talents, his preferences and predilections with him.
I do not know where he went.
During my second visit, yesterday, brought by my friend who lost her mother at the other end of the hall of tears, I discovered that many of Robert’s things were missing. I had brought over warm clothes in May. The aide said he was cold. So I bought sweat pants, sweat shirts, a jacket. In the car I put them in a bag with some beautiful stuff he had received as a Pratt alumnus; a tee shirt, hoodie and hat. Good, well made stuff. Not there. Delivered on May 10 and left at the desk, brought upstairs and now, not there. Missing.
I complained. Trying not to buy into the mindset that stuff was stolen. It is bad enough that people are stolen.
During my first visit, on Monday, I looked around to get the lay of the land. My friend was waiting downstairs for me frying in her car. I didn’t see this and I couldn’t find that. I took mental stock. I was somewhat surprised to find his old little flip phone which he has not used for many months. He can’t. Robert referred to himself as an analog guy in a digital world.
I found a bag in the closet with books and newspapers, never read, and some kind of food treat someone had given to him that had morphed into a liquid state. So much for my archaeological dig. Without a family member visiting, things don’t get done. Straightening up, dumping old drinks, asking someone to dust behind the nightstand. Covid days have rendered these places untouchable on a daily basis.
Robert is most often not responsive, distracted by the television, uninterested in chat. It takes time for me to get used to. I am almost over the shock. If he has nothing else to do he will stare. There is NO emotion from this once, very dramatic person. I have not seen him smile in about seven months. I look at his picture from ten years ago behind him and try to match it to his face: He looks as old as my 102 year old mom before she went missing.
I sat on the bed. He usually is twisted to the left, never moving. I sat in the niche formed by his body on the right with him facing away from me. I lifted his blanket to see his arm but found a leg that belonged to an Auschwitz survivor.
Survivor. This is surviving.
I stroked him, on the head, the arm. “how did this happen?” I asked the Universe.
“Oh, Robbie, Robbie, Robbie.”
Oh, Susie, Susie, Susie, he echoed.
📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey
The previous post is here
The next post is here
Oh, Sue, I am so sorry for what you are experiencing. Robert will never be lost to you because you will always have him in your heart and your memories!
Sending love, comfort and hugs to you and family.
Dearest Sue, you are gifted in how you express this excruciatingly painful personal experience as an invitation for us to witness some privileged moments of our human condition…
There seems to be a time of being alive and a time of repose…and Robert seems to have entered that phase now…a waiting…and how tender and graceful this witnessing through your loving presence…
Sending you, Robert and Evan love ❤️
My heart and soul aches for you and Robert. My mother’s end days were much the same. From decline to decline it was tragic to watch. She would shout help and then look terribly confused and ask why she said that. I wish I had words of comfort that would actually work. But I do adore the love you two obviously share. What a wonderful love and life you two share. Even if there are glitches in his memory you are still his Suze. Of course I will continue to pray for his comfort and yours as well.
I’m sorry he is slipping away so slowly. My heart beaks for you. Sending good thoughts and prayers. Stsy Susan strong❤❤😪😪❤❤🙏🙏
Helaine Seelig Bernard
I’m so sorry Sue. All he was is in your heart.
Susan Van Dorn
I am so very sorry
your loss is palatable 😔
Lisa Tamburini
I’m so so sorry Sue!! Big hugs to you! 😢
big hugs to you!! xo
Patti Lavin Anderegg
So sorry for your pain and loss
Patti Lavin Anderegg
Susan I understand. You are a really gifted writer and express yourself eloquently
Jeanette M. Detert
Prayers.
Alan Teller
That last interchange you chronicled had me in tears.
DebtheGardener Barragan
I am with you in my heart and prayers 🙏❤
Heather Blues
Oh Susan this is so hard, my heart aches for you..the missing stuff while just ‘stuff’ is his and yours…it’s infuriating 😓
Ellen Farina Argall
Oh, dearest, Sue. You are in my heart. Prayers and love. ♥️
Pep Pest
Oh….The last lines…..
Candice Sirota
🙏❤️
Nancy Kleinfeld
😢
thinking of you.
you will always have your memories.
Carol Hofstein Pfeffer
Sue Sue .so sorry
Jacqueline Sherman
I feel for what you are going through. It is a horrible, tough road to travel along. We have been traveling along with you!! Thoughts, prayers, and, hugs!!
❤️Jackie
Diane Adler Monheit
This is so hard Sue! Sending hugs, love snd strength.
Barbara Smith
I’m tremendously sorry.
Sharon Hershberg
So very sorry that the three of you have to go through this
Donald Hamilton
So sorry for your pain and Loss Susan praying for you and your family.🙏🙏🙏
Denise Gunter
Prayers 🙏
B-k Rosales-Quismundo
You’re in my thoughts and prayers, Sue!
Sonia V. Reyes
😞
Barbara Kessler
I’m so sorry you are experiencing this. Hugs.
Larry Schechter
Praying for a miracle recovery
Cindy Martinez
🙏🏻🙏🏻🙏🏻
Alain Beaudeau
Read each and every word of your beautiful writing as you share the sadness of Robert’s absence. These are very difficult times for you who is so caring, so nurturing. Our heart is with you.
Elizabeth Polanco
I’m so sorry ur loss ur husband n he will go heaven new home , he will watch over u n ur son to take care n protection may God bless you to safe home n I’m pray for u to be stronger n healthy ily Mrs Susan Margulies Kalish amen 🙏🤟
Isabel Maximo
I am missing words to say to you Sue, but my heart aches for you ❤️
Barbara Schettini-Burton
Miss seeing g his face when I visited my Mom
Barbara Schettini-Burton
Susan I have no words thank you for sharing these tender moments. As my heart heals from my loss of my Mom down the hall. My heart aches because I miss seeing Robert who was my last glimpse as I left everyday. I miss them both. The miracle yester… See More
Karen Morgan
Oh Sue, I’m so sorry, I cannot imagine what you are going through. Hugs my friend, and many of them. ❤️
Lucie von Leyden
So very moving. You put the whole emotional experience into words so well. You take us with you.
Ann Barrow Huebsch
“Oh Susie”. The man you fell in love with is almost gone, but he feels your love because you do the hard thing and make sure he knows.
Catherine Muller
Dearest Sue,
This is heart breaking! Robert’s soul is there and feels your love and your enduring bond despite the cruel decline of his physical body. Being an observer to this “fading out” has got be excruciatingly difficult .
May you find peace, dear Friend.
Sending many thoughts, prayers and love to you and Robert. No one should have to go through this. Love, Pat
Pure, heart-rending poetry. You are poetry
My friend, this is both beautiful & heartbreaking. My heart goes all the way out to you across the many states between us. I hadn’t realized Robert went to Pratt. My husband did as well. He sounds like a pretty special person which is no surprise as you are as well. Please know that you are loved & prayed for and that Robert hears you. Keep on, my friend. Love you.
Sue I am so sorry that you are going through this. I hope you are comforted somewhat by the memories of your beloved husband. Reading your posts and blogs have been quite an experience for me. I am grateful you are willing to share your pain and past joys.
Much love
Your friend Denise
What strength and introspection you have during this time. Your beautiful prose is so tender and endearing. My love goes with you, Sue, and with Robert and Evan.
I am so very sorry. You and Robert are always in my thoughts and prayers. Sending love and blessings.
I know somewhat what you are going through. It never seems to get better, maybe one good day or let’s say better then the following day a decline. Each day praying for a miracle a cure which doesn’t come. Sue all you can do is hang in there my hopes and prayers are with you
My dear old friend is now beyond fear, rational thought, sparkling intellect, curiosity or his hallmark wit. I am glad that he is still, sometimes, able to respond to the love you and Evan lavish on him. He would reject, I think, the trap that now holds him. During our childhood, Robert was a fussy eater and I could hear his mother through the radiator pipes exhorting him to “At least eat a banana.” Would that the solution was still so simple. My prayers are now for you and Evan, may you be granted the strength to endure Robert’s leaving us. Many hugs to you both.
So sorry this the time to be able to do the Love You and hope he hears. My prayers are with all of you.
Sending every good thought and ounce of love I can to you and Bob and Evan. LOVE you all to the moon and back!
Sue, I am so, so sorry … continuing prayers for you, Robert and Evan.
Hugs,
245
Sending loads of love. Comfort Care is hard and sad. Love Love Love ❤️
Prayers!I wondered if you have had any Doctor give you any hopes. I do not understand why your husband does not know you and Evan love him and would love for him to eat, and get strong,is it the food there? I wondered if he is in a Jewish Nursing home? I know you said he loves the good rich food. I just cannot understand his giving up, I think in my mind it’s the being in a place like that, that he went down. I always hope and pray but this is very, very serious now,not eating,bad…prayers for you and your family. Hope and pray to God for you too. love Audrey