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!
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: firstname.lastname@example.org (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.)
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.”
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