"Do Good" Opportunities, Autobiography, Lewy Body Dementia, Uncategorized

The Age of Why

I am trying, with everything that I am, to be disciplined enough with laser focus, to complete and submit Someone’s Medicare (health insurance for the disabled) Reinstatement Request–that he accidentally cancelled repeating the wrong words (about an issue that he was correct in questioning)–a symptom of his progressing Lewy Body Dementia or as he likes to say, “Disorder.”  It is early-onset–which means Someone is not elderly but which also means that it is faster to progress and fiercer as it does.

Because Medicare was retroactively cancelled, all $108,000 from 2018, of Someone’s medical bills, are outstanding–and he is not covered yet for 2019.  If that were not causing me to feel the pressure of it all, his very large inguinal hernia mesh surgery #2 is having major complications and he may need hernia surgery #3, so I have to get this tome done sooner than later.  Over 450 pages and adding doctor letters, articles, medical records, an exhibit list and a narrative that is a challenge to compile even for the brightest and well-rested. (In this process, learning that general anesthesia is a complicating factor for this disease has been worrisome.)

Frayed and exhausted, I am a week past my self-imposed deadline. While legally there is no deadline, the consequences of not getting this done are great so every hour of every day that goes by pains me. During the time that I set aside to do this difficult task–no doctors, no appointments, no shopping, nothing was going to interfere–when two beloved dogs went from critically ill to nearing the end of time.  I put everything aside and care for them as tenderly as possible, turning them, washing them, syringing liquids into them, changing their linens…more.  One very ill dog is difficult, two at a time means give it all to God because it is not possible to manage everything without supernatural help and support. (Nothing is impossible with Him, I keep reminding myself as I say often, every day, “God. Help.”)

Someone gets upset when “his” dogs “time is up.”  He starts to act out behaviourally–agitation, argumentative and now, asking, “Why?” over every single thing that has to go on all day and all night.  I know that it is just a mixed up brain that instead of crying like I might do or being able to turn it over to God like he used to do in the past, knowing that (as we believe) that there is life after life and he will see them again, his brain is misfiring more than normal.  I have learned to handle the rough stuff but the asking “Why” here, there and everywhere is beyond me right now.

Today, I had to wash a red blanket that was dirty.  Someone wanted to put it in the wash and pour bleach all over it and turn the washer on.  “You can’t pour bleach on colors, “I said. “Why?”  “Well, it will ruin the color.  It will have a big bleach spot and then the red color will be a different color when it’s done.”  “Why?”  “Well,” I said as I kept trying to satisfy the ‘Why’s,’ “the material will be weaker and will probably get a hole in it if you just pour straight bleach on it anyway.  Besides, you are not allowed to handle bleach. Why are we even having this conversation?”

“Why can’t I handle bleach…” and round and round we went until a light dawned over my head.  This is a new phase of the always progressing Lewy Body that I am going to call the “Age of Why.”  It is like this with anything, anywhere, all the time.  I realized today that I am dealing with a two year old in a way–a 240 lb one albeit–who comes in and out of reality a few hours at a time each day, several times each day.

Some how, I need to stop giving in to the katrillion questions and find another solution.  I tried, “Because I said so,” but that didn’t work.  I tried, “Because it is a rule.” Sometimes that works.  Exasperated, occasionally I find myself not handling things as well as I’d like.

At 11 PM, I gave Someone 20 minutes to get into bed. (I feel like I am managing a child and not a 50-something man.) If he would just lay down, I could concentrate and work on his Medicare stuff.  I can tell it is going to be at least another two hours before he stops shuffling around and finding reasons to stay up all night like going through things that I threw out in the trash, lest I threw out a treasure (they each hoard particular things) or letting the dogs out in the middle of the night to play (and bark), giving them snacks and bones so they think it is “activation time” instead of sleepy time.

A year ago this May, I wound up with an ulcer in my small intestine that ate through to a blood vessel and I nearly died.  “Cut down on stress,” the docs all said.  I am feeling that pain again in my belly–just occasionally but it is distinctly there–the one that started a few months before I found myself in the ER.

Thanks for letting me share a little bit.  Maybe now I can get back to writing a very important six page narrative that goes on top of everything I have assembled.  I’d appreciate it greatly if you’d send up a prayer for the wings of angels to carry it to the people who can overturn what happened.  God willing, in a month or two, it will be reversed and I can call all of these angry physicians and surgical centers, etc. and have them resubmit their bills for payment. No one really understands what it is like to live with a disease like this until and unless you have–especially when it comes to money.  It is a daily mind-bender for me but that doesn’t matter.

In the meantime, the phones are under lock and key now–no calls are answered or made without me knowing to whom and for what reason. It is so difficult to start doing things like this to your adult significant other, who you have lived with for so long, but I have learned a lesson that I won’t soon forget. Someone sounds very credible and “normal” but really does not understand anything but the basics…

…like giving love and being kind to the dogs, helping the homeless and less fortunate (yes there is an amazing social awareness still in tact), worrying about homeless animals who may not have found a Rescue Ranch, and praying for our angels–by name–each night–which is extremely sweet and has a very innocent element about it. He knows who is helping, who sends prayer cards, who dropped off lots of doggy stuff at the mail, who sent Pasha a stuffed Bunny, “so she would never be without ‘her’ Bunny” and more.  He doesn’t know my name–or at least doesn’t use it anymore–but he does know yours–and he asks God to bless you daily.  (When I hear him praying, I stop whatever I am doing to lift my hand in agreement.)

Thank you for caring. Especially for caring.

Sending love and always, Hugs from Our Herd!

PS  All feedback/ideas on how to handle the “Why’s” is very much welcome!

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Angels, please know that your help and prayers are still needed even though I set aside this time to do the Medicare Reinstatement and to take care of Charlee and Pasha.  I will write next week–I just have got to get this document submitted and then let God take over!

Please don’t forget about us!

In the meantime, if anyone wants to send prayers, gift cards, fast food gift cards, a generic Visa, greeting cards (Someone LOVES them) I would be so very grateful.  I am beside myself, just walking in pure faith, that everyone’s needs will be met each week.

For instance, tonight, because of your kindnesses, I was able to just crumble Whopper patties and some real McBacon and add no-salt green beans and some Chinese-restaurant rice (they only charge me $1 per large container) and dinner was done! (Kibble added, too, for the bigger dogs who don’t have mouth-issues.) In addition to the stove and oven being locked down and silverware now consisting of plastic spoons (and one paring knife I have hidden away for cutting up veggies), it is a lack-of-time issue in addition to a safety issue when I plan to cook or why I can’t.

Mailing address:  Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

Anything e- goes to: a.rescue.volunteer@gmail.com  (amazon credits, email, etc.)

Photo: Bunny (L) and Pasha in their doggie carts playing with sweetie pie, Junie.  (This was taken before Pasha developed cancer.)

Helpful Links:

Lewy Body Dementia Association: lbda.org

To Adopt, Foster, Rescue, Volunteer to help many types of animals: Petfinder.org

The Rescue Ranch website: firststop-laststop.com  (Next week, I will write more about Charlee and Pasha there).

 

“We could never learn to be brave and patient, if there was only joy in the world.”  

Helen Keller

 

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Autobiography, Uncategorized

My Valentine’s Story

After I wrote another blog post, A Valentine’s Day Story,  Valentine’s Day came and went. It didn’t bother me at all.  I expect nothing anymore and am grateful for absolutely everything.

I was really happy though on Valentine’s Day because an angel had sent a Fandango gift card to Someone in a cute doggie Valentine’s Day card. (I keep all cards for Someone to “read.” He loves the colors and pictures and every once in awhile he gets one with music and laughs and dances to them over and over and over again, intentionally being silly and enjoying them.)

Other than me and the dogs, or a trip to the doctor or an occassional outing to a store, his primary day consists of sleeping and watching television–and watching television means seeing lots of ads for new menu additions at the local fast food places and ads for movies to see.  Every once in awhile, he will ask–and he rarely asks for much–to go see a particular movie.  (Thank you our precious angels for your Valentine’s cards and prayer cards, too.  I will be writing to everyone next week. God willing.)

He has been asking to go see several movies lately but the Fandango card allowed me to pick one–I had to pick the one that made the most sense.  Someone wanted to go and see the movie about the rock group Queen–and to go see it in a theater–not on TV–because of the “awesome” sound systems that theaters have–never mind that it would take a year or so until it was on “non-pay” TV–so “Bohemian Rhapsody” it was. I agreed with him.

Everywhere I checked, the movie was only playing very late or later at night and that was not going to be possible.  It is difficult enough to manage a LBD. (Lewy Body Dementia affected people “sundown”–after dusk and until dawn, it becomes a time behaviorally that tests the absolute best of us.  I’ll save this subject for another time.)  I said a prayer and told God that I would try one last time to do a search on my laptop.  I was really, really tired but I wanted to give these tickets to Someone for Valentine’s Day. I found that there was a one day, special matinée showing coming in a few weeks to a theater right near us!  Thank you Jesus!

I printed out the tickets, put a few red heart stickers on it and a tiny picture from the movie jacket cover (trying not to use too much ink) and folded it up and put it all back in his angel’s card.  After he woke up mid-afternoon (most LBD people don’t go to bed until after dawn), I wished him a “Happy Valentine’s Day” and handed him the card.  When it registered what the card was holding, his precious tickets, he was soooooo happy!  All day and night long, whenever he passed me or thought about it, he came over and gave me a bear hug! Someone said he was giving hugs to everyone who sent him the tickets or who just cared about him.  I was almost squished from so many hugs (but in a good way)!!

Two days later,  I closed my computer and thought everyone, and especially Someone, was asleep and went to take a nap.

Surprise!  When I woke up, and after I fed everyone breakfast and took care of medical needs and potty breaks, I went to my laptop.  This is what I saw:

Val.Day.2019.note.and.candy.surprise.jpg - 1

The note on the front left corner says: “The World is a Better Place with You in it.”

My heart was so amazed and touched by the thoughtfulness of this that I just stood there. He may have been late but he didn’t forget.  He can’t write well any more so the impact of how long it took him to write the little note near the key pad brough me to tears. And while he doesn’t use my name any more, he took off his CPAP mask and got up (I moved my writing desk into the bedroom), put his arm around me and said, “I love you, Sweetheart,”  and kissed me on the forehead.  “I hope you don’t mind that this is late. I wanted to wait until the candy went on sale.”  (We had run errands the day before.) Certainly a Valentine’s Day to remember.

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The constellation of stress and responsibility of helping a herd of special needs dogs but especially a significant other with a terminal neurodegenerative disease are crushing in many ways. Please help in any way that you can when you can.

This weekend, while I was trying to write the 400 plus pages for the Reconsideration Request to restore his Medicare (he accidentally got his medical insurance cancelled using the wrong words trying to get something corrected), my beloved Charlee went from critical to intensive care and then passed away from complications of Congestive Heart Failure (more on Charlee’s life soon).  I was near or with him every second of every day/night during this time right until God called.

(I have learned that animals don’t want to pass/transition alone–people don’t either. It is great comfort to them to have someone hold them and reassure them during the last days, especially hours. I have also learned that if an animal/person passes alone it is because they lovingly want to leave you with the memory of them alive.)

After taking care of “my” Charlee’s needs and trying to get my eye swelling down from crying, I began writing again.  Pasha then went from critical to intensive care and is now on the verge of God calling.  She spent the night in my arms while I talked to her,  told her stories about her life, reassured her, syringed sweetened water (for a little energy) into her mouth and to keep it from drying out, cleaned up messes (from both ends) and occassionally thought of how Someone’s Medicare papers are so close to being finished but Life and Love is more important than anything–and that includes even the end of Life. I want each and every dog to know that they are loved, knew loved and know that they don’t have to be scared of what is ahead–life after life is so beautiful and I make sure that they know that.

Hopefully by the end of the week, I will be able to submit the paperwork.  We may have two more angels that we know in heaven as well.  They both had long, happy lives once they arrived at the Rescue Ranch and were loved by many, thank God.

How to Help?

Prayers. cards to fast-food restaurants like Taco Bell, McD’s, Burger King,  KFC, etc. are needed–to feed Someone AND the dogs (I mix into kibble or feed straight for those who are particular or sick, will eat Whopper patties or shakes or McDoubles or chicken fingers or eggs or or or) as are amazon credits and generic Visas.

(Please have mercy–on me.  I can’t afford to take the time to cook all of this myself when there are so many other pressing things to do. The gift cards are a literal godsend.)

Address:  Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

E-anything please send to: a.rescue.volunteer@gmail.com

Grateful. So very, very Grateful.

(We pray for you always in all ways.)

FYI

For more information about Lewy Body Dementia, please go to lbda.org

To rescue, adopt, foster, help rescue animals (of all types and sizes!), please go to: petfinder.com and do a zip code search one you get the type of animal and age selected.

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Autobiography, Lewy Body Dementia, Uncategorized

A Valentine’s Day Story

Memories play a huge part in being able to endure living with the steady decline of a loved one with any illness–Lewy Body Dementia, a terminal neurodegenerative disease, included.  The person you fell in love with, at least their physical body, stands before you weakened but familiar, but their personality degrades and their memories fade. Someone you loved doesn’t even know your name…and eventually the body fails.

Someone, my significant other, was always aware of important dates/holidays and was very card-conscious.  Every single holiday, for everyone he loved (mostly his grandparents, parents and some relatives), he would make sure he sent them a card–or made them one–even into his late 30’s!

It was amazing how he would remember so many and get them mailed on time and write a little note about how he loved them, including in my own cards.  I usually got a small box of candy and a pretty bouquet of flowers–nothing expensive though has always been my rule.

On the second Valentine’s Day after being diagnosed with LBD, I received the sweetest card…

Valentine’s Day 2017

Mike.ValsDay.2017.card.inside.right.jpg

I began to notice, however, that his card-consciousness began to decline as did his hand-writing after he was diagnosed with Lewy Body Dementia.  Fewer and fewer people and holidays were remembered.

Delivered in a plastic grocery bag (not an envelope),  I was brought to tears as I deciphered what the 2017 Valentine’s Day card said:

 

Mike.ValsDay.2017.card.inside.left

Top

“I know my memory is fading (a little), I know I haven’t forgotten how much I love you. (Three hearts)

Bottom

“You may think I am a little crazy lately but I am still crazy in Love with you.

Love “Someone” (four hearts) XO XO XO

 

Valentine’s Day 2018

Someone didn’t forget the day.  In fact, he had a card ready for me when I woke up.

The card came with an envelope.  It was blank.  The card inside was completely blank. I am not certain that the card was in the envelop.

I was touched that he remembered the day–it means a lot especially because I can see a decline that is as scary as it is sad.  I gave him a kiss and a hug and thanked him for remembering. He was happy that he made me happy.

I went in the bathroom and bit my bottom lip, trying not to sob too loud because it was more and more obvious that the disease is taking another part of Someone away.

About an hour or two later, I took the card back to him, “Would you mind just dating this card for me, ” I asked.  He took the card and wrote, “Val’s Day, 2018” and at the bottom signed, “Love, “Someone.”  I know that in the not so distance future that these mementos and memories are going to carry me through a very painful journey–alone.

 

Valentine’s Day 2019

I know Someone hasn’t forgotten Valentine’s Day because he spent a good hour (at least) in the card section of the grocery store.  I just walked and walked around trying to keep busy until he was done.  He said that he had three special cards to get.  Whoever they are for, just know that they are going to be late. (I would guess that one is for his mother, turning 80 next week.)

When we got home, he asked me if I like Ferrero Rocher’s hazelnut chocolates.  In fact, my mother used to send a big box of them to us every Christmas for years and years so the memory must be stuck in his brain somewhere.  “Oh, yes, I love them!” I said. “Do you remember how my mother used to send them to us every Christmas?”  He didn’t remember–but in a way, he did.

I don’t know if there will be a card or even if there will be chocolates but it doesn’t matter any more.  The most precious Valentine gift you could ever give–or get–is the gift of time–of being with someone, of sharing a part of your life, of sharing some of your love. Those gifts are priceless and so very precious.

Please remember this today and forever:

Love is absolutely everything and it is forever.

 

“I love you neither with my heart, nor with my mind. My heart might stop, my mind can forget. I love you with my soul because my soul never stops or forgets.”   Rumi 
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PS  I Love YOU!
PPS  YES!  Being with your fur babies (or friends), remember that they are all precious and fantastic Valentine’s Day company.  Aren’t they all just made or full of love? Just because you may not have a beloved, particular human being to sit across from doesn’t mean that you are alone.
And if you don’t have an animal to share love with, I’ll share some of the love I have here at the Rescue Ranch. I have lived surrounded by so many furry loves for twelve years now!

 

 

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Autobiography, Lewy Body Dementia, Spiritual, Uncategorized

Like Nails on a Chalkboard

To those of you who haven’t heard from me, just know that all is OK.

Someone has major complications from his second hernia mesh operation and has to have an ultrasound and CT scan.  He now has a testicle the size of an ostrich egg and a very large band of rock hard colon? or tissue on running on the outside of his abdomen from his waistline to his privates. Now he has mesh just under the skin (an external repair was tried first) and now inside of him but is not eligible for the mesh lawsuits because it didn’t “let go” per se.  But…

If you remember, his medical insurance was wrongfully cancelled retroactively…or really, the cancellation is invalid and I am hoping to prove it through my documentation and research.

(To read how it was cancelled, see my previous post: https://icantbreathe.blog/2019/02/04/superbowl-sunday-together-time-turns-into-nappy-time/ )

…so I am writing a thesis of sorts of 400 plus pages to get it reversed retroactively. God willing.  Otherwise, we will incur another $108,000 in debt and he will have no medical insurance until July.  With this hernia complication, that’s a long time to wait.

In order to do this, I had to get four doctors’ records, statements and opinions, collect a lot of previous medical information about Someone’s Lewy Body Dementia AND the hernia mesh surgeries and do a whole lot of research.  It feels like a piece of your soul basically goes into something like this.  I have read more about Medicare law than I ever wanted to.

If that wasn’t enough, two dogs are critical–on the edge of God calling.  Charlee Barlee, is very close to being an angel we know in heaven, whose beloved white Poodle Doodle, Jed, is keeping him company and making sure that I hear his barks whenever his Charlee needs a drink or needs to get up to go potty, etc.  It is amazing to watch what an animal bonded pair relationship looks like. (I have seen them before and they are very special.) They should never ever be separated (if fostering or rescuing) and already my heart is breaking for Jed.

Charlee is wanting to keep me within sight all the time.  His heart is failing (Congestive Heart Failure) and his belly is swollen and big from ascites (as-site-eez) or water in the tissues that his heart isn’t clearing.  Charlee and I have been having talks about what comes after life–and who will probably come to greet him (here) and how he can come visit us anytime.  I also reinforce that we will see each other again and it is that hope, that helps me to smile through my tears eventually.

Pasha Dasha has a cancerous tumor the size of a swollen plum that developed almost over night.  It is on a stalk or at the end of a band of tissue extending it away from her body (her rear flank). I’ve been trying to find a surgeon who can remove it without putting her under general anesthesia.  She will be 15 this year and just as a quality of life issue, removing it would make her more comfortable.  In the meanwhile, external cancerous tumors create a large amount of exudate (wet, grey, shedding of muck) and so she needs to be cleaned up and the tumor treated and wrapped often.

Between reading, working on the computer, no sleep and crying, my eyes are taking the worst of it.  I have to take an hour “eye break” every three hours or so.

Before God called my mother, she had sent me a basket of things, recipes and notes from her (that is almost empty) I might need some day–to go into when I think of her.  It is as emotional as it is sweet and the things I find are funny, useful, and thoughtful.  I took out the cucumber eye pads one time and put them in the ‘frig in case I ever needed them.  They are a godsend right about now. I wish she were here…She loved Someone like her own son and so I know that she is here with us “in spirit” and in love. (It brings me to my knees when one of her notes drops out, in her handwriting, and starts with, “Hi, You Two…I love you so much…”)

So, please forgive me for not responding to email or texts or mail right now.  I must use every ounce of energy I can muster to get this Medicare Reinstatement Thesis in–it is taking energy from deep inside me to do this but if I start diverting my attention, I will not be able to do it.  Hoping to get it out this week, and then getting our Senator involved after that, I can take a break and will be back in touch with y’all.

In the meantime, please know that I am so deeply grateful to those of you who have cared and still cared about us.  This is a very lonely, scary, uncharted place to be in.  I don’t know what people do if they don’t believe in God and have their faith to stand on because it seems like at least hourly, I check in with Him just to keep going right now.  (If I didn’t have to do this report, I wouldn’t be so overwhelmed but it is a “must do” and there is no one else to do it.)

I love you all very, very much and open your cards slowly and thoughtfully and read them and treat them as precious gifts and hugs.  I take your gift cards and put them in my wallet to use when I need a break (like now) from cooking and managing 6 different sets of eating demands (special needs/end of life dogs are very picky!)  I tuck away your other gifts for emergencies or those times when there just isn’t funds to cover whatever is needed–whether you designate them for the dogs, for what is needed or for Someone.

Please say a prayer that I have the strength of spirit and soundness of mind and argument to get this reinstatement request done and heard.  I will continue to say prayers of thanks for all of those helping us.  Also, please keep Someone, Charlee and Pasha in your prayers.  I just hope that they hold on while I get this submitted.  I don’t think I would have the energy of spirit to grieve and get it done so I am pushing myself to get it out.  My eyes will be so swollen from crying that typing will be out of the question so the urgency is definitely being felt so Someone can get help.  Then, I will turn it over to God, knowing that I did everything I could do and it is in His hands.

Please continue to write and email and help if you can.  Next week, I will catch up on all of my “thank you’s” and responses.  Please except this, “THANK YOU” for now and a big hug!

Thank you for caring. Especially for caring.

PS  For those of you who have been following my own stuff, the full-body PET scan was finally approved mid-Jan!  I think the insurance company delayed it for three months to carry it over to a new deductible year since last year, with me having been emergency hospitalized, spent a week in the ICU, had transfusions and surgery and Someone had surgery, too, in 2018, there was no deductible left and the PET would have been free.  Now, its a new year and everything reset and we would have to pay 100% of it to go towards our high deductible plan. My next project is to get the deductible waived.  What happened seems kinda fishy and like some insurance law was broken or at least some moral ones were.  Research, more research to do while the docs are biting at my heels to get the test done for my own sake.

Mailing address:

Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

Email for e-anything: a.rescue.volunteer@gmail.com

 

I Love You.

We Love You.

The Herd Loves You!

 

“The best kind of people are the ones that come into your life and make you see the sun where you once saw clouds. The people that believe in you so much, you start to believe in you too. The people that love you, simply for being you. The once in a lifetime kind of people.” —Anonymous

 

Note: To sign up to receive my new posts in your email, just go to the top of this page and click on the three lines in the black box.  It is a menu box.  One of the four options is to sign up for the posts.  I hope you do so.  If you could send this URL  Icantbreathe.blog to others as well or post on other social media sites, that would help build my blog.  I am trying to educate people as well as share our life and stories.   Thank you much!

 

 

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"Do Good" Opportunities, Autobiography, Lewy Body Dementia, Uncategorized

The Garage Door Incident

I have decided that God must have a sense of humor–at least I hope so because life with Lewy Body Dementia in it has some twists and turns that just cannot be anticipated or even understood.  This week’s/or better said, is this particular challenge was not a mind-bender, and the injury not life-threatening thankfully, but the compilation of so many things that a caregiver has to deal with in this situation is simply overwhelming. Not even the strongest of us make it out of this experience without serious battle scars (emotional, mental, more) if we have the resources to even hang on.

BOINGGGGGGG

It was supposed to be the simple running of an errand.  I got Someone in the car, backed out of the garage and pressed the button on the garage remote to close it.  Ready to get the mail, happy to get some fresh air and to get something to bring home for dinner for Someone and the dogs (many), my “alert button” was on low until I heard a very loud noise from INSIDE the garage. We hadn’t even left the driveway.

My first thought was that some industrial shelving that line the inside walls of the garage must have fallen over but how I wondered.  Other than that, I would think of nothing that heavy or that could even fall from anywhere in the garage that would be loud enough to make my heart skip a beat–outside–and to make the dogs act like there was a burglar inside (I could hear them all in a panic, ready to protect the Rescue Ranch.)

I left Someone in the car (it was off), taking the keys to get inside, and went right into the garage. Everything was in order much to my surprise. Silence. Not a thing had been moved or had fallen.  I ran through the possible sources of the noise that I heard. I heard it outside and it definitely came from the garage, but nothing qualified.  The water heater, which had just been replaced last year thanks to an angel, sat proud and shiny in its corner.  The shelving was all standing and not a thing was on the floor.  “Well, I’ll be…” I thought to myself still trying to figure it out.  I couldn’t leave until I figured out what was wrong.

Someone Was Outside Alone

Talking to me through the garage door, Someone was out of the car (my anything-can-happen radar was now activated) and banging on the other side of the door, asking me what the noise had been.  “I can’t figure it out.  Everything seems OK,” I yelled.  “Look all around.  Something broke,” he hollered through the insulated door.  On an off-chance, I looked up.  The giant two foot long screw that turns the double-garage door opener had snapped in two.  A light bulb moment.

“Hang on,” I said.  “It looks like the screw that opens the door has snapped. Let me see if there is an emergency release that I can open the door with.”  Someone with LBD doesn’t like to be alone or out of sight of his caregiver.  Seconds is too long…

“Uh-Oh”–That Famous Word

He panicked, I think, over the minute that it might take me to try to open the door and began trying to lift the door from the outside–using the little handle that just turns the deadbolt lock.  “Uh-oh…” I heard outside. “Nuts,” I thought.

Well, any caregiver who hears those words, especially when dealing with the dementias, I am certain has their gut clench up and their adrenaline ramp up in less than five seconds flat.  You never know if you are dealing with something simple that just needs to be fixed or something major.  It is constant and ongoing.

“Ummm, there is blood dripping all over my pants and on the concrete,” Someone said. “I think the door handle is in lots of pieces, too.”  My heart, oh my heart.  “OK, hang on, I am on my way out.  I can’t figure out how to open the door so I will come out of the house door.”

I ran to get a clean towel on my way out.  I had no idea what I was going to find but I was prepared to go to the ER.  I am always prepared it seems.  When I got outside, the blood was all over the place.  It had gone under the door, on the driveway, it was all over Someone’s clothes.  It was dark out so I told him to hold still while I wrapped his hand up to put pressure on whatever had happened and grabbed his elbow and “ran” him into my bathroom which has become first-aid central.

Fingers Injured

I flipped the light on and carefully unwrapped the towel.  “I don’t feel any pain,” he said. “You will later,” I said.  I have noticed that LBD causes either a lack of sensitivity to pain or an exaggeration of pain.  An injury like this would have had me crying–while a muscle spasm in his arm will have Someone needing to have all types of first aid and attention for hours.  It just doesn’t make any sense to me anymore.  I just accept that.

When the garage door handle snapped into three pieces, one piece sliced a nasty diagonal across the inside of Someone’s hand.  “I guess I shouldn’t have used all of my weight to try to pull the door up with that handle,” he said. (Yep.)

After washing away the blood and getting the bleeding to stop, I said, “I don’t think you need stitches.  I think I have everything we need to fix this.”  He asked me to individually lift up each of the (many) skin flaps in the slashes to examine them to see if pieces of the garage door got under them.  Dementia-thinking but if it was needed, I would have. “I rinsed it out really well and when I put the sterilizer and ointment on with the bandages, it will get the stuff into each nook and cranny. OK?” I said.  (If I used proper names of the things I was using, I would have had to explain each thing and argue why each thing was necessary.)

He patiently stood there as I did what I had to do.  He started to object to how I was placing bandages that were “restricting” (yep) the way his fingers moved but in those moments, you have to just take complete control and be emphatic.  There is no wiggle-room for dementia stuff (he has an odd case of OCD) when the situation is serious.

Knowing that the bandages would be wet with any one of a dozen substances within five minutes, I decided to put a nitrile glove over them. That has kept them dry until each changing time.  His wounds are looking pretty good but I have to constantly watch that a glove is still on.  If not, it will require an immediate first aid station visit.

Thank God

I went outside with a gallon of water to rinse off the blood.  Seeing what was there and evaluating what had happened was upsetting but I would learn that we averted an even bigger emergency thankfully.  When I called the garage door company to come fix the door, they told me that we were lucky that we couldn’t figure out how to open it–because it would have/could have fallen off the track–and onto us! (Whew.)  Thank God.  I say that a lot these days.

Thanks for listening and for caring. Especially for caring.

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Just a Thought

If you have anyone in your life/who crosses your path even, who is struggling to take care of someone with a serious illness or is suffering from a serious illness themselves, please try to support them in any way you can for as long as they need it.  Please don’t forget about them in a month–it may take a few years.  Be grateful that you are well and able and blessed and stick it out with them for the duration.

Ways you can help caregivers or the seriously ill:

*Send them prayers, prayer cards, anything to build their faith and to hold them steady (calls and emails aren’t always possible to respond to but mail can be opened any time of the night or day).

*Drop off meals or supplies (leave on their door-step) and text that they are there (doorbells disturb the sick or wake them up so try not to use it).

*Send gift cards to local or national restaurants or send generic visa or gift cards that they can use as needed.  Maybe include a brochure or two from local delivery services (a lot are free now) and menus from the restaurants.

*Send a gift card or e-credit to amazon or a local (to their zip code) grocery store.  Let them order online what they know that they really need instead of trying to guess.

*Volunteer–or hire someone–to cut their lawn, trim the trees, shovel the snow–or just do it.  You’d be surprised how much is neglected outside just because they are trying to take care of what is going on–inside!  If you feel like you need permission, text them and say that you’d like to gift them a blessing.  No one will refuse a blessing.

*Offer to relieve them of errands or caregiving–maybe during nap time–or text that you are going to the store, do they need anything–and text when you leave it at the front door.  One of the biggest resources caregivers lack (beside funds) is time.  They don’t have time to stand and talk for an hour–their loved one probably needs a bath or meds or dinner.

*Bring over flowers (leave at the door and text that they are there), send small surprises, little things that let the caregiver know that they are still important and still a person.  They don’t “need” validation but when you are caring for someone who is terminally ill, you don’t have someone to tell you that you matter or even to say, “yum” for the warm dinner or get any positive feedback whatsoever.  They forget what life before the illness was like. Every resource they have is going into the care and well-being of the ill person and they neglect themselves and their needs.  Find a way to remind them who they are.

*Please don’t abandon them, most of all.  Many caregivers find that their “friends” and family “turn and run” when illness strikes.  It is hard to watch a loved one decline, I guess.

In our lives, we had some wonderful “couples” friends, who had common interests like animal rescue and faith-based activities and volunteering but when Someone began repeating sentences six times in a row during a normal conversation (we didn’t know what was wrong)–and sometimes in frustration, his agitation came through in his voice. They pretty much all disappeared socially, although I do know in an absolute emergency that I could call on them.  My girlfriends, however, and some Rescue Ranch angels, have stuck it out and are keeping us alive–and keeping me sane!

…and, know that whoever you are helping are thanking you in their prayers and with their tears and as they use or eat or look at whatever you sent.  Don’t help for the praise or the thanks–that is unspoken but not forgotten.  Do it because it is the right thing to do and you will get the blessings in your life somewhere, some how–it is a spiritual law.  If you get a thank you, know that it is really special because time is so precious and they have little left to give but of themselves.

 

Helping This Blog/Our Herd of Special Needs Dogs and Someone

IF you would like to help me continue this blog, you can give on my online fundraiser or mail something or send prayers.  All are gratefully accepted and appreciated.

Online: https://www.gofundme.com/gofundmecomicantbreatheblogfeb2019

To Send an E-Card/E-Anything: icantbreatheblog@gmail.com

To Mail:  Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386

Prayers as simple as a good thought, a wish, a blessing, a rosary…all work, I believe.  It is the intention that counts.

Grateful. Always grateful.

 

Have You Read About When Lewy Body Dementia Entered Our Lives?

https://icantbreathe.blog/2019/01/31/rr-story-1-lewy-body-dementia-and-the-case-of-the-missing-dog/

 

Please click on the lines/menu at the top of the page and sign up to get my blog posts in your Inbox.  I think once you sign up that you need to check your email and validate that you signed up to activate this feature.

 

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"Do Good" Opportunities, Animal Health, Lewy Body Dementia, RR Dog Herd Stories, RR Dog Stories, Uncategorized

Superbowl Sunday: Starts with a Sob, Ends with a Laugh

The game was on and it was time to take a break!  The dogs were all fed and had just gone out, Taco Bell was our dinner (and doubled as our “game snacks”), thanks to finding our very last Taco Bell gift card (thankfully, sent by an angel).  I was intending on making chips and onion dip and veggies and ranch dip as Someone requested but well, time these days, time is more precious than eating.

Two dogs have become critical in the past few days–which begins to take a lot of time and energy away from everything else.  Charlee Barlee–the center quarterback in the above pic with his now angel-friends Chula and Penny–a black and tan Min Pin–has right side congestive heart failure.  That causes water retention in their tummy (his becomes rock hard between treatments) and the water begins to cause respiratory issues.

In addition to two heart meds and an antibiotic, I use epsom salt gel or solution to soak his tummy which causes the water to leach out of the tissue into his urine, relieving some of the tummy pressure.  Rubbing the tissue also helps move the water out.  Also, a no salt diet is paramount.  That means cooking everything since finding ‘no salt anything’ commercially prepared is nearly impossible to find.

Pasha Dasha, the other dog in early distress, had a skin tag on her rear area.  It was just something that we had to keep clean and watch.  Suddenly Friday night, it was as round and swollen as a bursting plum!  Until she can see a doggie dermatologist early this week, I have been washing “the plum” in Hibaclens, rinsing it with Povidone Iodine and slathering it in Neosporin.  The idea is to keep it as clean and covered as possible so it doesn’t get infected.  I am hoping that the specialist can remove it with a cauterizing loop and a local anesthetic.  Being nearly fifteen years old, Pasha is not a candidate for general anesthesia surgery.   (I am concerned about this sudden change in its size which could be something much more serious now.)

As if caring for Charlee and Pasha’s extra needs wasn’t enough today, Someone managed to accidentally get his healthcare cancelled.  (I am going to have to lock up the phones soon. The docs think they already should have been put away.)  Sigh.

Almost a year ago, someone picked up the phone and was correct in his understanding and concern that he was being charged over double what he should have been for Medicare but he mixed up his words.  While intending to ask that the extra premium be cancelled and retroactively refunded, Medicare processed it that he wanted to cancel Part B Medicare (OMG).  Not only did he get it cancelled but they did it retroactively–leaving over $108,000 in 2018 medical bills now being rejected and sent to me to pay in full.

I just found out about all of this recently when bills from his end-of-the-year surgery began to bounce back as not paid. This is just an example of constant problem-solving of lliving with someone with Lewy Body.  Sometimes big issues like this one, sometimes many smaller ones arise but there is hardly a day when you just can relax and have a normal day. You are always trying to prevent things from happening or having to band-aid those you didn’t expect.

After sobbing for about three hours this morning about the magnitude of this issue, I knew deep inside that there is no one coming to the rescue and I just have to pull up my “big girl pants” as my mother used to say and fix the situation myself with a little help (a lot of help) from Above. During those three hours,  I talked to God a lot. Without my faith, I would not be able to handle this or many situations in my lifetime.  I kept hearing, “What would you do if you knew you could not fail?” a famous quote.  And so, I will succeed, God willing!

Eventually, after letting the Chihuahua twins–little tiny Chippie and Sissy–make me laugh and kiss my tears away, I was able to pick up my laptop and begin the lengthy, many-day process of writing what will be tantamount to a thirty page thesis with supporting documents about why this was not intentional, how Lewy Body affects people, and requesting that his Medicare be restored retroactively.  His doctor also wrote a letter for me to include for which I am grateful.  (Please say a prayer that my words reach someone at Medicare who has mercy on us.)

In Texas, to protect your home from creditors, there is a homestead declaration.  That said, in this situation, I think that you have to have lived in the home over 4,100 days. We are OK on that front, thankfully, but for a year now, I have been sorting out closets and clothes, etc. etc. etc. in order to downsize and intending to move near a ‘locked memory care facility’ in case, or for when, I can no longer physically help Someone.  My thought is that at least we would live near enough to visit often (hopefully I can alternate dogs visiting, too) and make sure proper care is given. (I am supposed to be touring these facilities but I can’t bring myself emotionally to do that just yet.)

Now, with these medical bills hanging over our head, until Medicare is fixed (God hear our prayers), we cannot move or risk putting the house in jeopardy. Plus, Someone’s doctor thinks now that I should not move at all until and unless Someone goes into a care facility first so as not to confuse him.   Interim moving tends to speed up the progression of this illness and shortens their life span.  Bins and boxes all over the place need to be organized and put away for the time being, I guess.

Well, the Superbowl started and I put the computer down to eat my bean and extra cheese nachos and to watch the beginning of game  Normally, I would happily watch the entire game since every year we’ve been together, we make this a “date” of sorts–this, the World Series play-offs and the Kentucky Derby.  But, after being up so early and getting so emotionally and physically drained, after dinner, I brushed my teeth and when I sat down again, I just passed out during the second quarter.  I even missed the half-time show!

I woke up when the news came on wondering what quarter the game was in.  I was so disappointed that I lost that time together but Someone didn’t even notice–or notice that I had not shared the cinnamon sticks slated for dessert.  He said he just figured that I ate them all (and was happy that I had enjoyed them.) LOL.

Thank you for stopping by and for caring.  Especially for caring.

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If you are a caregiver dealing with someone who has any of the dementias or a serious illness, please reach out to others for support. Find online support groups, support groups at your local hospitals or even private groups or ask friends and family to step up to the plate and help you.  The caregiver is the person who actually takes the brunt of these illnesses and is devastated physically, mentally, emotionally and financially so please take care of yourselves first and foremost.  Maybe start here to find resources: https://www.google.com/search?client=firefox-b-1-ab&q=caregiver+support

 

If you are thinking of adding a wonderful animal to your life, please adopt an animal in need–and rescue a life.  There are special groups for each breed of dog and cat, even hamsters, chickens, horses, snakes and more.  They have newborns to seniors, animals in good health to special needs.  The animals only have a limited time to find a forever home or they are being killed or “euthanized” in ways you don’t want to have nightmares about so I will spare the details but please try to adopt one–or two–or add another one to your family. https://www.petfinder.com/

 

“Do not let your hearts be troubled.  Trust in God; but trust also in me.” Jesus Christ

 

Please become an angel and help me to care for the Rescue Ranch special needs dogs (they have a safe place until God calls their name) and now, finish caring for my special needs Someone.  On call 24/7, it is not possible to do anything else.  Thank you for blessing us–for in blessing someone else, you are really blessing your own life.  Think about it!

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

 

“Whoever brings blessing will be enriched, and one who waters will himself be watered.” Proverbs 11:25

 

Sending prayers…Helen, the mother of one of our angels (helpers), passed away in the past few days.  She had a long life and was ready to go, to move on to a new phase. Please say a prayer for her family and for so many others who lost a loved one, for it is hardest on those left behind.

Those who have passed, are instantly surrounded by love and are not in any pain of any kind but are filled with understanding, optimism and happiness.  I believe that we will see them again and it will be a joyous reunion.  Looking forward to that day helps me smile through my tears.

 

 

 

 

 

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