Lewy Body Dementia, RR Dog Herd Stories, RR Dog Stories, Uncategorized

When Lewy Body Entered Our Lives: The Case of the Missing Dog

The Rescue Ranch is a rescue sanctuary that I co-founded twelve years ago to take care of special needs dogs.  They were just being euthanized or killed because no one would help them and that bothered me deep in my soul.  They had every right to a good life despite being abused or hit by a car or being kept in an infected shelter and contracting an illness.

Vets, rescue groups, shelters, owners…all email or call with situations to go save dogs’ lives (or to come pick them up or some just “dump” them on us) that require beyond-normal time and effort.

A complicated pregnancy, a spinal cord injury, broken legs, smashed mouths (many causes), Distemper, Parvo which are now curable (contact Kind Hearts In Action!), Brittle Bone Disease and so many other afflictions.  If the dogs had surgery, were fixed up, treated, they would be available for adoption or returned to their original referring people/organization.  That was the theory at least.

We found that no one wanted to put in the continued time and effort, and we would soon discover the very unexpected escalating expenses as they aged to keep them stable–not the rescue groups, not adopters, not their original families would take them back.  Since we had made the promise to help them and give them sanctuary, basically, we made the decision that they could stay at the RR until God called their names. Many are still living happily but it takes it toll especially on me, especially now. (We have a whole lot of furry friends that depend on the Rescue Ranch and its angels–will you become one?)

Mr. Lewy Enters the Picture

Taking care of the RR dogs used to be a partnership but as they say, Mr. Lewy, or Lewy Body Dementia, a terminal, in this case, early onset (not just seniors get it) brain disease came to land in the brain of my co-founder and primary benefactor of the Rescue Ranch, right before Christmas 2015.  His salary, bonuses, and lots and lots of overtime all went to pay for the overhead and bills, with help from angels to supplement with the dogs’ expenses. We gave up and have given up everything to help them all.  That said, all of that support evaporated in 2015.

“You have Lewy Body Dementia,” I remember the head doctor, or “Dr. Genius” as we called him, of the neurologic specialty group of rare diseases saying to him–herein called Someone–with not so much as a tint of emotion (diagnosed after five high-level brain scans over ten months time).  Huh??  “It is a terminal illness that lasts from two to seven years and ends when you die–usually because you lose the ability to swallow and you drown in your saliva…”

We sat there in shock and silence for about half an hour and then were ushered out only with a letter to turn in to apply for his permanent disability benefits. Needless to say, we skipped Christmas that year and I pulled the comforters over my head for what seemed like a month (getting up only to do the necessities of self and dog care).  He didn’t think he was sick so it was life as usual.

Well, Mr. Lewy is a bizarre disease with ups and downs, bizarre twists and turns, with unexpected moments of lucidity–or Someone coming back to himself for a few hours a day–but in a weakening body that is just falling apart.  (No one warned us that this disease takes apart the skin, teeth, gums, bones, and so many more parts.)

I am always on alert now pretty much–twenty four hours a day, seven days.  I wait for the moment every day or many times a day, to fix whatever Someone did “wrong” or broke or lost or or or. When I hear, “Uh-Oh,” my heart skips a beat and I start running. I never know what I am going to find.

Gracie is Missing.  What?

Early this morning, around 4:30 AM, I had to ‘string chicken’ as I call it as a vegetarian-sometimes-vegan (I say a prayer for each chicken that gave its life to feed these dogs–and no, I am not nutty)–basically making chicken breasts into small pieces to mix into the dogs’ dinners who won’t eat regular dog food. With special needs dogs, the need for fast food (for doctor or hospital days when I just cannot do high-level meal preparation) or people food or alternatives is paramount. Every night it is like having a dog restaurant to open and close/clean up and not every night is the same.  That said, it is better than syringe-feeding or hand-feeding each dog because they refuse to eat or drink.

I heard the back door open and Someone yelled IN, “Gracie’s missing.”  I was watching the early morning news, thought that Someone was taking a break in his recliner because all was quiet and I was just working on the chicken, not in the “alert” mode.  I didn’t know that he had gone outside at that hour.

At first, I was not too worried about Gracie since I figured she was probably in another room that Someone hadn’t looked in, happily sleeping.  If she was outside, the entire property has a seven foot fence so I wasn’t too worried other than about the cold weather.  The only concern I had was that her collar may be caught on a bush or maybe she was stuck in some mud because I didn’t hear any barking and there was no movement outside at all–not even a twig snapping.

My radar started to go off.  Dementia was somehow rearing its head and I needed to find out what was happening.  Gracie was not on the property and after a full sweep of the RR, she was not inside.

I ran outside with no jacket and in socks and it was freezing out (thankfully, we live in the South). I had to solve this problem fast.  I stood before Someone who basically looks back at me now with a blank stare and started bombarding him with questions.  He would answer me! despite his decision to not bother responding to questions any more.

“What happened? Where is she? Where could she have gone!!!??” I started asking in my calmest, loudest voice.  I had to force an answer out of a demented-in-that-moment person (he was not lucid) with only the tone and strength of my voice.  As a low-key, calm, pretty gentle person this is very difficult personally for me to do.

“I looked through the fence and she is outside the gate,” Someone said.  OMG I thought. “How did that happen!?”  We have two big gates to get out of the fenced area but you can’t see one from the other. I knew that they were both locked.  He said that he was trying to open one of them when he saw Gracie through the slats, who is nicknamed, “The Wild Child,” but she disappeared, happily running.  He couldn’t get the gate opened, couldn’t figure out how to get to her so he came in to tell me.

“Well,” he started again. “Last week when Gabe was here to cut the lawn, he closed the other gate wrong and it cracked.  He said that he would fix it in two weeks.”  Why didn’t anyone tell me?  Before the sun went down that same day, that gate would have been fixed, and most likely I would have had to fix it myself. Screws, saws, drills–I have to learn now to do it all–and I am still learning.  (Caulking and Gorilla glue solves a lot of problems! LOL)

I “ran” over to the other side of the property. Sure enough the bottom horizontal beam at the bottom of the gate was completely off.  The crack had weakened the beam and the screws and the cold weather must have contracted the wood enough for it to just come lose.  Gracie is only about twenty five pounds and fast as lightning and must have just run through the hole.

Thankfully, and Thanking God in that moment, that I give the dogs lots of bones and treats and love and attention every single day because they respond really well to me. I give them a taste of my dinner–one by one by one by one by one…–and share whatever I can.  So, when Gracie heard me yelling for her a few times over, she came screaming through the now open gate and ran past me and right inside!  I was so grateful.  It was cold and dark and she can’t really be seen at night, except that I made sure that her collar has reflective thread in it so I can see her outside at night–in the yard!

So, all is well for the next few hours while Someone sleeps then it starts all over again.  I wonder what today’s challenges will be! I cannot even being to imagine. You cannot plan for any of this. Sleep for me, will just have to wait.

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I hope that you become a Rescue Ranch angel, too.  My gift to you is my writing, sharing my stories, sharing my knowledge and my love but I can’t do this alone. I need virtual support, prayers, and your gifts really make the difference in being able to finish this mission that I’ve been given–or falling flat on my face.  I am trying as best I can with all that I am.

Link to help: https://www.gofundme.com/gofundmecomicantbreatheblogfeb2019

Grateful.

Jane

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Ralph Waldo Emerson

 

 

 

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Autobiography, Human Interest News, In the News, People Health

Caregiver Relationships Are Sacred: In Defense of B. Smith’s Husband

A caregiver seeking out a new relationship while their ill significant other is still alive is not about the sex.  It is about validating that they are a human being.

Since my husband’s devastating diagnosis of early onset (mid 50’s) Lewy Body Dementia (huh?) just before Christmas, 2015, I, too, would have judged Mr. B. Smith/Dan Gasby for having a new girlfriend–and bringing her into the family home to live–while his wife is dying from early-onset Alzheimer’s.  Not any more.

First of all, early onset means that not only is the person 20-40 years younger than those normally affected but it also can mean that it is fast-progressing and manifesting in unimaginable ways.  I know in the case of my husband, who will be called “Someone” hereafter in this blog, I struggle daily, sometimes hourly, to retain my own sanity, my own dignity, my own grasp of reality when dealing with the episodes when this disease rears its bizarre and ugly “head.” (Lewy Body is not a steady decline like some of the other dementias–it is erratic and bizarre and the person that was actually comes “back” for a few hours a day here and there–until the end.)

I am sure Mr. Gasby struggled to take care of things for a long time by himself.  He and Ms. Smith could have even had private conversations about his being able to move on when she either passes or gets to the point where her normal consciousness has left.  We don’t know what their personal arrangement is nor can we judge.  These situations are all different and all so very, very difficult on the caregiver especially, who is usually the spouse or significant other.

The decision to take on a partner is not about the sex.  Believe me, it is the last or next to last thing on your mind.  I am sure, being in the thick of it now, that it is about having someone to come home to, or to be at home with, who asks how your day is going, or to admire the beautiful day with or the stars or the yummy dinner you just made.  It is almost impossible to be a whole human being without anyone to give you a hug, a kiss, even just a simple “hello” or a smile.

My Someone doesn’t even remember my name anymore and decided a few months ago that there is no sense in responding to my talking.  Sure, he can hear me but he made decision to not respond. “Why bother?” he told his doctor. When I ask things like “Honey, would you like butter on your potato?” or “Sweetie, would you like to come and watch a movie with me and I’ll make some warm popcorn,” there is “crickets” for a response as he shuffles around the house, going from task to task to task, each never started and never finished but the messes are all left strewn behind.

The Someone’s who are afflicted with these neurologic illnesses become gradually like blank slates.  The person we loved and knew is being erased or is fading into oblivion.  With thirty or forty years left of my own life, I know there will be a future (after a few years to just recover from this experience). I don’t want to complicate things now by bringing in another love.  Quite frankly, I don’t even have a minute to go find one!

That said, someone else’s way to survive this maybe be the way B. Smith’s husband is choosing.  The primary benefits–and it is not sex!–is that he gets companionship from the new person, which can make him a better, refreshed, vibrant caretaker of his wife instead of what eventually becomes a depleted, exhausted, frustrated shell of a caretaker–and B. Smith gets another caring person to take care of her, her home and her precious husband.

Before you judge, please walk a mile in someone’s shoes.  I have walked half way around the world, or so it feels, and know what this feels like, what the needs are, and have learned not to judge any caregiver’s way of both dealing with the situation emotionally nor how they get through their days–as long as the afflicted person is taken care of in love and in honor.

Afterthought…You know what I miss alot?  Someone saying, “God bless you,” when I sneeze.  It kind of feels like you just don’t matter any more when that is no longer said but rationally, I know it is just a byproduct of LBD.

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I hope you come back regularly.  Between dealing with Lewy Body Dementia (a post for another time–but in a nutshell it is dementia, Alzheimer’s, Parkinson’s, Bipolar, Depression and a bunch of others all rolled into one) and a small ranch of special needs dogs, some in wheelchairs, some with other disabilities (I will share their stories here, too), please click on the menu above this blog and give regularly when you can.

If you don’t have time to do all of that, please go to this link and leave a gift: https://www.gofundme.com/gofundmecomicantbreatheblogfeb2019  It will help me keep this ship afloat. I choose to spend this precious time with my special Someone–and I can’t leave to go to work nevermind relax or sometimes even sleep.    God knows, I don’t wish any of this on anyone so please understand that we, caregivers, all need to do what we need to do to just keep breathing sometimes.  It is that hard.

Thank you.

 

 

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