Sundowning in Neverland with a Little Weed

I’m going to leave my bedroom window open just in case Tinkerbell and Peter stop by for me.

I really could use a trip to Neverland.

Growing up beyond just being responsible has never been on my bucket list.

Since my mother’s event last month, I have never felt so much pressure to be a big girl. There is an urge to stamp my foot and yell, “HEY! I’m the baby of the family. I’m exempt from having to help make any adult decisions.”

That’s not the way it is though. The adults in my family have had to come together to make sure Mom is cared for and that all bases are covered.

As I said in last week’s post, I’m still learning from my mother.  Recently, she has given me huge lessons in adult reality.

I have gone stoically where this normally crazy, over sensitive gal has never gone before.

Every doctor or nurse who comes into my mother’s room when I’m around is subjected to a long list of questions. I have talked with nursing homes, therapists, hospice care, insurance companies and Medicare staff. I’ve researched drugs, and Alzheimer’s and dementia sites.  I have fed my mother, changed her, cleaned her bottom side and her dentures, done her nails, rubbed lotion on her hands and told her stories.  The world of adult diapers, wheel chairs, walkers and functional status testing is very real to me now.

When I last wrote, Alli was on her way home from college. What a fine reunion it was. In route from the airport to the nursing home, I filled her in on the condition of her grandmother.

My Dad and brother had Mom sitting up in her wheelchair, her hair done and a couple of extra chairs in the room for us. Thank goodness Mom knew Alli and was glad to see her.  She looked so much better that night. It made the news easier for her granddaughter. Now that Alli has seen her this week and both times she has been having a good day, she must be wondering what all the sadness and worry is about.

Alli has had fun this first week home, catching up with friends, unpacking, visiting her old school and looking for a job. ☺ It’s great to have her back in the nest.

Today, I discovered why Mom has been so smiley and has had a few good days this week.

They began an appetite stimulant for her.

It’s medicinal marijuana! She’s a pot head!

Dronabinol (Merinol) is synthetic Tetrahydrocannabinol or THC, the active chemical in marijuana.

Well, that explains a lot.

The woman has kept us entertained with her confusion (pre- Marinol). There’s nothing to do but enjoy it and laugh. She would do the same if she were in her right mind.

The day of her seizure she didn’t seem that much more confused in the ER, but the next day was different. She was being moved a lot having an EEG, MRI and CT scan. At the end of the day, she was very upset and wild. She began pulling the electrodes from her chest. She pulled the IV from her arm. She kept pulling and tugging at her gown, at the wires, at her catheter. It was like watching a two-year old on speed. If we tried to stop her, she became angry. By the middle of the night, they brought in a pair of mitts for her hands to keep her from harming herself or unplugging anything else. Every minute she would ask what they were.

“They are your mittens.”

“OH, its winter! Who gave them to me?”

“The doctor.”

“Whose mittens are these? Are they yours? Did you make them?”

“No, they are yours.”

“Why, is it cold outside?”

It was exhausting at night to have her fighting the mittens, the wires and tubes and asking the same questions a million times. Those nights in the hospital, she rarely slept. She was wired.

This is called Sundowning Syndrome. It’s a stage some people with dementia go through at night. It has to do with the circadian cycle and is exacerbated (always use this word with caution) by any changes to the patient’s normal day or schedule.

Mom has become ambidextrous and utensils are optional at meals. A previous bookworm, she no longer reads and she can’t follow a TV show, but she likes to watch the birds outside her window. She smiles at them. I asked if she could hear them singing and she said, “Yes. That’s what I got stuck in my throat!” When I asked, “What?” she said, “I got birdseed stuck in my throat.”

Most days she knows our family, but sometimes she gets our place in the line up confused. She thought Larry was her husband and she also said he was Top Chef. She thought he was on a cruise ship and had come in from Hawaii to see her.

She flirts with the cute male nurses.

When I told her that Dad had gone home to sleep, she got this hateful look and asked, “Who is he sleeping with, my mother?” It took a while to convince her otherwise. Her mother has been deceased for 18  years. And of all people, my Dad nor Momma Doye would never be unfaithful.

Many times she thinks I’m her sister, June and she never remembers her younger sister’s name but calls her “the spoiled one.” Once when she thought I was June I asked, “How is Libby doing?” and she shook her head in disgust and replied, “Libby is ALWAYS doing something.” I was glad she quit talking about me before it got ugly.

Mom thinks her parents and other people who have passed from this life are still alive. She’s asked several times if her parents knew she’d “gotten herself into this mess.”

If you ask her where she is, she will give you the names of other hospitals, or even churches. If you ask her why she is where she is, she thinks it’s for her sinus drainage.

There were 2 boys and 1 girl in our family.  She tells people she has either three boys or three girls. Many times she will ask how my girls are doing, and refers to Alli as “the youngest one.”

Here’s what’s interesting about this; if all of her babies had lived, she would have had 3 boys and 3 girls. So, when she thinks of me as having 2 girls, is she thinking of the baby I lost?

Mom‘s sense of time is off.  Part of the functional testing is to ask her dates and names. When the nurse came in the other night to do the usual battery of questions, I was so exhausted, had lost track of the days and when she asked Mom what the date was, I drew a blank along with her.

Mom unbuttoned her shirt and exposed her bare chest one evening. When I tried to help her button it back up, she became angry and said, “I’m trying to button my shirt. Why do you keep unbuttoning it?” This went on for a good half hour. She unbuttoned. I buttoned.

Well, the little man across the hall enjoyed that little show. (Do men ever stop looking at breasts?)

She can’t remember the names of foods. I asked her how the pork was. She said, “Its chicken. Well, its okay, but when you’re expecting squash…”

I was trying to encourage her to eat and said, “If you’ll eat, you’ll be strong like Popeye!” she replied, “Or weak, like tea!”

Sometimes when Dad is fussing at her to eat and he turns his head, she sticks her tongue out at him.

She had a bite of bread at dinner and exclaimed, “This is so good. It’s done the way they do it in the Navy!”

See, Mom is in Neverland.

Remember that old saying…Once a man, twice a child? I guess this is what that means.

Most times she doesn’t seem to understand her predicament, so my deep, one-sided conversations with her don’t sink in. She has this far away look in her eyes. Sometimes I stare into them and wonder what’s going on in her head. One night when I was doing just that, after a long stretch of silence she said, “When you are like this, think of this.”

I will Mom. I will.

But for now I have to enjoy the funny stuff. It’s the only way I can cope…unless she wants to share the Marinol.

If you can hug your parents, do so. Go hug your kids. With all loved ones, leave nothing unsaid.

Love,

Libby Lu

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19 thoughts on “Sundowning in Neverland with a Little Weed

  1. Wow Libby – this is so good. I am in awe of your gift to document these precious moments. I wish I had with my Mom. – Looking forward to more…

    Kathryn

    • Thanks for reading my blog, Kathryn. You were so kind and open to share your stories of your Mom and losing her back when we worked together. I appreciate that more now, than ever. L.

  2. I’m so sorry, Libby. I found myself going from laughter to tears in this one. So, I’m sending a hug from the east side of the state…and will give it for real the next time we are in Nashville.

  3. Loved the last line…how true.
    Glad that you are enjoying the laughs…it is the only way through this. You leave me with bittersweet memories…of my mother. The bad make the good that must better! Bless you!

    Love her and your family!
    We love you!

    • Oh Gray, Thanks for being such a loyal reader and for getting all of this.. I’m crazy in love with my family and this event has me making sure I let everyone know. I love you, by the way!
      L.

  4. Lovely, sad, funny, beautiful, amazing, bittersweet, inspiring, depressing, uplifting.

    I especially love the part about the numbers of children. Makes you think that as she is losing touch with this world, she is more in touch with another.

    I’m so sorry that you all have to go through this–that any of us have to, but I love that you are going through it with humor. It would be impossible otherwise. Please know that you and your family are in my thoughts and prayers. I love you!
    Betsy

    • Betsy, the first word that comes to me when I think of you is SWEET! Always have been. Thank you for reading my blog and obviously getting this post. I appreciate your care and love and the fact that you know humor is the only way. HA
      Love,
      L.

  5. I have been through this with my father. Sometimes I would be angry that this could happen to someone who had such dignity and intelligence. But sometimes you just have to laugh. My father was sure that he often played golf with Phil Mickelson. Well, if you are going to live in fantasyland, I’m glad my father got such a nice place there.

    • Yes! I agree! So sorry your Dad had to go through this, and you with him. But you do have to laugh at some of the whoppers they come up with. It’s so fascinating. Thanks for reading. I’m soooooo back logged with reading blogs right now. I shall return, though. I always read yours and look forward to catching up soon.

  6. thank you for sharing your stories, libby. i find the very lucid moments like you mentioned quite amazing. how do alzheimer’s/dementia patients say things that make so much sense amidst everything else. several years ago, a dear friend of ours who had alzheimer’s and spoke mostly incomprehensible syllables (do they still call that word salads?) looked at sara and chris and said in the strong voice that we hadn’t heard in months “you have two fine children there”. our friend was like an extra grandpa to them.

    take good care of you and try to keep smiling.
    sandra

    • Thanks, Sandra. Yes, it’s so interesting how some times she will seem “normal” and be carrying on a conversation like old times and then she’ll go off in left field and we realize that no, there has been no miraculous recovery. I think that’s the hard part…knowing it will not get better, but worse. Word Salad….I like that term. It sure describes that jumble of words they come out with sometime. I missed the big queen of word salads. Dad said right before her seizure and right when she gained consiousness again, she was speaking “Egyptian” as he calls it.

      Thanks again for reading, and if I didn’t laugh, I’d surely be crying.

      L.

  7. Ah, Libby, my profound sympathies. I know how this is. My mother has so many physical ailments that require hands-on assistance that she is in a nursing home , and my dearest friend’s mother has been moved to a memory center to live since her Alzheimer’s progressed. I can’t decide which is crueler, to have a sharp mind and a body that’s failing you or to have good health and lose your memories. My friend and I compare stories. The first time I had to cut my mother’s toenails or put her dentures in, or feed her. For my friend, its the first time Mom didn’t know her child or her own husband. They’ve been told that when Mom cries for her parents to say they just left or are at work. That satisfies her and breaks their hearts. Her mother’s personality has changed too. This once shy woman is now a leader of others in the memory center. God bless them all for their struggles and give us strength as we all do our best to help. Great post!

    • Thanks so much for reading my blog and for sharing your own (and your friend’s) story about your mom. It always helps knowing that others have been here and many more will be. Ditto on the blessings for their struggles and our strength.
      Best wishes,
      L.L.

  8. Libby–Thanks for sharing your story. Mother died at age 48, and Poppa is 71 and going strong (not that he could be considered “normal” by any definition of the word). This is a slice of life I haven’t had to deal with much. My Grandmother, however, got forgetful near the end of her life. When people tried to correct her about the year (she was about 50 years behind the rest of us), she quit answering the question. “I am so tired of arguing with you about what year it is. Could we please stop discussing it?” It was so perfectly HER that we stopped asking. My other favorite was a patient I had who we brought into the nursing station so we could keep an eye on her. She was convinced she was on a fabulous cruise. I figure if you don’t know where you are–fabulous is the way to go. When Grandmother was in hospice, my aunt found a book called “Final Gifts” and made it required reading for us all. I’m not sure when the appropriate time for you to read it might be, but it is truly wonderful. Hugs from Atlanta, and yes, we will get together and cause some trouble one day soon!

    • Thanks for the book title. I can use all the help I can get and I will check out “Final Gifts” required reading…I love it. Mom’s roomie took off in her wheelchair the other night screaming for her daughter, Lisa. I was sad and hilarious at the same time. I agree…Fab is the only way to go. We have all had a more difficult time dealing with Mom’s situation than she has. She seems to be in her happy place in her head. OH, and I didn’t mention it in this post, but she seems to have erased all knowlege of our deceased brother from her mind. Eveyrone else who is dead is alive in her world, but when John is mentioned, she looks blank faced. His death was uber traumatic for her (10 years ago) and she must have completely blocked that heartache from her life now. I’m not saying it’s a bad thing at all. Look out Atlanta…one day….

  9. Libby,
    You are so amazing sharing this. You give such a wonderful perspective and wisdom. Thank you! Thank you for sharing, for your gift of writing;for your ever so important reminder to hug those we love and leave nothing unsaid. My heart is and prayers are with you all. So very glad Alli is home!

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