(Mom in her green polka dot dress)
“Who did your hair?” she said.
“My hair stylist,” I said.
“I don’t like it. The girls are wearing it long these days.”
I removed my headband, as if that would make a difference.
“You’ve gained so much weight,” she said, scrunching up her face.
“I’m sorry my appearance offends you,” I said.
“Oh, everything’s all wrong. Where are my clothes? The clothes in the closet don’t belong to me!” she said, hyperventilating. “What happened to Grandpa’s house?”
“What do you mean? Grandpa in Wisconsin?”
“No, when he lived with Rony.”
“Mom, Grandpa’s been dead for years,” I said.
“But what about my sister? Can’t I go there?”
“Mom, Rony is dead.”
“What?” she said, her face terrified in disbelief.
“She died several years ago. She had a heart condition.”
“I know she had a heart condition, but I didn’t know she died,” she said.
“Yes, she died.”
“Where have you been? You’ve been gone for so long!”
“Mom, I was here two weeks ago.”
“No, you weren’t!”
“Yes, I was. I brought you the bras you asked for.” I pulled them out of a tote bag.
“No, these are all wrong—they’re too big.”
“I got them too big because you said the other ones shrunk in the wash.”
“Oh, they’re all wrong.”
“Okay, Mom, I think I’ll go now. I don’t need this.”
“I’m sorry. I’ll try to be quiet,” she said.
“You don’t have to be quiet. Just don’t yell at me.”
“But why were you gone so long?”
“I was here two weeks ago. My office moved—I get home at 7:30 at night. I can only see you on weekends.”
She made a face.
“Where have you been? I’m being poisoned here. The air, the fumes,” she said.
“Is it hot in here?” I said.
“Yes, I think so.”
I asked James the nurse if he could turn on the air conditioning in her room.
“I’m so confused. I didn’t think I’d be here forever. Where did I used to live? They’re killing me here.”
“At Schuyler House, in the Bronx.”
“Schuyler House?”
“Yes.”
“I don’t remember that place. I didn’t think I’d be here forever.”
“I’m sorry,” I said.
“What will become of me? Where will I go?”
“I don’t know, Mom. Rick has the house in Elmira. You’ve seen it.”
“I know that. Stop humoring me,” she said, ramming her wheelchair into the side of her bed frame.
“Dan still lives in the house, and he lives near Greg.”
Dan is my Aunt Rony’s husband; Greg is my cousin.
“Oh, that’s good. He always took care of himself,” Mom said.
“He just turned 90, I think. He goes swimming at the YMCA every day.”
“Yes, he always took care of himself. I’m happy to hear this.”
“Make sure you tell him about my performances at the Actors Home. I want them to know where I am.”
“Which performances?”
“I’m doing Anastasia,” she said.
“Okay, I’ll tell him.”
“Do you want to go for a spin?” I said.
“Yes,” she said, hyperventilating.
“Do you want something to calm you down?”
“Yes, I have some valium somewhere.”
“In the medicine cabinet?” I said.
“Yes, I think so.”
“You can take some after dinner,” I said.
“Okay.”
I told the nurse James* that Mom was having a hard time.
“Can Mom get a sedative?” I asked.
“It’s sundowning,” James said. “It happens around this time.”
It was about 4:30 p.m.
“Let’s go into the garden,” James said. “Come on, Katherine.”
Mom laughed.
I wheeled her out into the garden, James opening the door to the outside world.
“Mom, do you want your coffee?” I said.
“Yes, please.”
“I’ll bring it,” James said.
“And can you bring me a glass of water?” I said.
“Sure,” he said.
“It was about time I had a nervous breakdown,” Mom said, laughing. “Why don’t they show Lust for Life? They keep having it up on the bill.”
“I don’t know, Mom.”
“Would you lay out some clothes for me for tomorrow? I can’t find the polka dot dress I love so much.”
“What color was it?” I said.
“Green polka dots and white background.”
“I’ll try to find it or I’ll get you another,” I said.
I’m watching Terms of Endearment. I never liked it when I was younger, but I do now. I never appreciated the relationship between the mother (Shirley MacLaine) and daughter (Debra Winger), the closeness between them.
I guess I didn’t have that type of relationship with my mom, but it was still a relationship. So much of the time I felt like I was her mother, her nurse, her therapist. Sometimes I think she resented me for it. But it’s who I was schooled to be—the caretaker.
I know I can’t fix Mom. I can’t make her not have Alzheimer’s. I can’t make her remember her sister died or she no longer has a house to live in. I do what I can.
*Note: pseudonym used.
Suburban Hobo 
This dialog perfectly describes her facial expression 😉
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Thank you for capturing and sharing this, Erica.
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These bits of detail and dialogue are so poignant. It must be therapeutic for you to creatively reconstruct these visits. And I love the photo. Thank you for sharing all this, Erica.
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It is somewhat therapeutic, Sharon, although this last visit was pretty upsetting overall.
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So realistically and beautifully written. You’re a good daughter, Erica, and a gifted writer.
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Thank you, Joanne.
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I love the green polka dot outfit! Alzheimer’s is so cruel to the loved ones who remember what was and have to face what is. The Alzheimer affected person has gone and the loved ones are left with someone who looks the same but has become a stranger. What an emotional toll it must take on you. What enables you to continue visit after visit? What do you do to keep your emotions in check? Are you grieving the loss? My grandmother changed when she entered a nursing home? I began to grieve that day and the grief lasted until she died because watching her sit in a wheelchair alone in a room and in a state of hallucination was so heartbreaking. She had been such a jovial woman. You have my support, Erica, whatever that means to you.😍
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Hi, Patricia, thanks for your kind thoughts and comments. I don’t know what enables me to continue visiting, perhaps it’s because I am her only “person.” My brother lives upstate and rarely sees her. Mom is usually in good spirits when I visit — I usually go between 1 and 3 on Saturdays — but I went later this time and she was a mess.
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Sundowner Syndrome can be frightening according to my husband who dealt with it in his father. I didn’t mean to imply that you would stop seeing your mom, only wondering where you pull your strength from.
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Oh, I know, Patricia. I guess the answer is, I don’t know.
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Love conquers all.❤️
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Yes, very poignant.
Do you remember all that dialogue verbatim, or record it ?
You do what you can.
My sister and I do what we can with our 91 yr. old. mom, – although not an actress, a woman of extreme
dramatics/multiple health issues; all of which are in denial, including the blindness, wherein she is insistently acting as if she can see. We’ve stopped arguing and just clean up the mess.- sadly it is all of us together 24/7, the toll mounts with no respite. Our lives are in suspended animation.
Soon my sister and I will need a caregiver to assist us in our own recovery from what is a form of ‘psychic shell shock’ Wish we could afford for you to take care of us- ha!
We do what we can.
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I didn’t have a tape recorder and it’s not verbatim. She repeated herself a lot – especially about being poisoned in her room — so I didn’t include all the repetition. I also left some things out about her wanting to do her makeup and hair, and not liking the color of her hair.
I don’t know how you guys do it, TC. Having her live with us was not possible – we would have had to make the house wheelchair accessible (all bedrooms upstairs) and hire a round the clock aide and/or nurse which we could not afford. I hope you can hire a part-time caretaker to help out if it gets to be too much. My thoughts and prayers are with you both.
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Thanks Erica,
To get some respite would be more than welcome,
but it ain’t happening. Resources just not available.
Scraping by, …builds character ya know. Sib and I not working full time.
Have not worked steady since laid off in 2012.. (after 12 yrs.@Foundry)
building projects have been slim to none.
No space to do any artwork, but working on getting to use a friends basement
a few nights a week. That should be a balm to the psyche.
Recalling an old saying when I was in USMC; ” It ain’t the load, it’s how ya carry it”
So, we do what we can-
” Sempre Fi “
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Bad day. There are betters ones, and more ahead, I’m sure.
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Erica, hello, my name is Tim and my mom has Vascular Dementia and I am her caretaker. I’m with her 24 hours a day, 7 days a week because she can’t be left alone and I basically have no one to help me. Putting mom in a home is out of the question for several reasons, financial not being the least of them.
Mom also suffers from Sundowners. Every day, around 5 pm her confusion gets worse, she starts getting agitated and nervous and not rarely she will break into a crying episode.
My story is long but I won’t tell it here. I just wanted to share with you that you’re not alone, not alone in your feelings of helplessness, hurt, aggravation, loneliness and all the rest of the hundreds of emotions that flood through you.
Like me, all you can do is be the best that you can be and do the best you can do. The best advice I can give you is to hold on, it’s a long ride, hard ride, but if you’re tough enough, it’s worth it. She’s worth it!
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Tim, you are a saint. My best wishes to you and your mom.
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Beautifully written. And sad…I’m so sorry that you and your mother have to go through this.
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Thank you, Robert.
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Reblogged this on Art by Rob Goldstein and commented:
Alzheimer’s disease is painful for everyone involved.
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Thank you for the re-blog, Robert!
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So painful…There were so many layers of of unspoken emotion in the dialogue between you and your Mother. I felt as if I was in the room with you.
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Sundowning is so painful to be a part of. It just tears at your heart!
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It does. Do you know someone with Alzheimer’s?
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I volunteered in nursing homes for eight years. Then I became a chaplain for hospice. Some of the people I visited for years and many had alzheimers. I have a post about it on my page called being stephanie. It doesnt go into great detail about sundowning but I saw it daily with those I grew to love and it was very very hard. On them , on their family, on me who loved them.
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Alzheimers’ disease is such a horrific, mind stealing, life stealing thing. I have no personal experience with it in my family but I have seen it. It is just heart-breaking.
Being a care-taker is a job that will also steal your life, if you let it. You have to remember to take care of you, too. In every sense, your mom as you knew her…is gone. Be there for her when you can, but mainly…,take care of you.
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Thank you for the kind words, Laurel.
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You’re most welcome.
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I had to come back to this. Rob re blogged this. My Gran is in the last stages. She can’t walk, talk, she is spoon fed, she weighs about 5 stone 30-40 kilograms. The thing that kills me the most is watching my own mother watch her mother wither away. I hate this illness . I can’t believe three years ago my Gran was living in her own home, being glam and still able to live a life with some purpose. Sorry about your Mom. This is a horrific illness. All illnesses are horrific but this one is particularity sinister as it not only attacks the body but the mind. All illnesses do but this one brazenly shows and it to the world and flounces it in our faces. Take care.
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I’m sorry to hear about your Gran. It is awful. My mom lost her ability to walk about 5 years ago and is incontinent. I hope she doesn’t have to suffer too much longer.
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It is a terrible illness. W are going to see her tomorrow. I dread going – it leaves me drained but I don’t think she has much long tbh 😦 hugs x
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I know how you feel. xo
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I can relate to your post. I’m caregiver of two parents with dementia – my father with alcohol-related dementia, my mother with vascular dementia secondary to a stroke last November. Painful for us all. They are no longer able to care for themselves, and live in memory care communities.
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Kitt, thank you for stopping by. It doesn’t get easier, does it?
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No, it doesn’t.
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Sometimes it seemed like all my mother did was complain about me. Apparently all the nice stuff she had to say about me she saved for the nurses and staff. Her mother was the same way. I thought it was genetic. Maybe it’s just human nature. You’re doing a great job. Don’t lose heart.
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Yes, perhaps it is genetic. Thanks for the kind words of support.
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