Uncategorized

Hard Landing Leads to Two, Maybe Three (Impossible?) Surgeries

I’d like to tell you that the past couple of months–during which I was not writing–have been a piece of cake.  Au contraire! They have been a constellation of events–almost beyond my comprehension–certainly a test of my faith!  (You are always in my thoughts and prayers but time seems to run out every night/day.)

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Home from the hospital for just an hour, Someone sat on the ground to love just some of the dogs who have been missing him!  (Big) Bunny Bun Buns (who turns 12 the end of March, 2020), Jed the white Poodle Doodle, Bitty Bits (center) and Sissy (who turns 10 the same time Bunny has her birthday!)  Since we don’t know Bits and Jeddy’s birthday, we are going to have one cake and celebrate their birthdays all together at the end of the month. They each have an amazing survival story!  (More dog birthdays  (and ours) this summer and then more in the fall.) 

 

First, Someone’s Benefits Were Wrongfully Terminated

Someone, has a terminal neurologic illness, Lewy Body Dementia. There are about seven stages of this disease in total that lasts from 5-7 to 20 years, depending on each individual’s health and complications.

This part of the latest odyssey began in January.  Someone’s disability benefit is key to paying the mortgage, utilities and insurance and not anything more.  That said, the last check deposited was in December, 2019! This is a man who is terminal and granted permanent disability.

When January’s check wasn’t auto-deposited,  I waited until early February to see if there was a banking glitch–and to see if that check and the past one would show up. Nope. Nada. Turns out that someone was put on a list of terminal people whose claims had just been “terminated” without so much as a phone call–but he is still very much alive and should not have been on that list!

I was assured that some paperwork and a brief questionnaire substantiating that Someone was still alive and a physician confirmation would suffice and he would receive back payments.  (I am still kicking myself that he didn’t sign up for supplemental disability insurance.)  As of this writing, however, it has not been rectified yet–going on three months of no income.  **(Scroll to the end for today’s update.)

His Fall

To begin to make matters worse, right after Valentine’s Day–after we had a few wonderful days to enjoy good food, cupcakes and doggie toys and cards and bones that some of you sent (thank you!!!!), Someone had a very bad fall. Living with extremity tremors that come and go, mostly that ‘come’ these days, along with an altered sense of balance, falls and slips are common. This fall was different. Someone put his arm out straight to break his fall with his hand.  The damage done, however, was, to quote the head of orthopedics at the hospital, “massive.”

When I took Someone to the hospital and saw the head orthopedic surgeon, he ordered an MRI to be done right away. (We could see his arm was “wrong” without the MRI!)  As it was explained to us, we have two bicep muscles in each arm.  One of Someone’s in his right (primary) arm has been disconnected/everything shredded from the shoulder down and the bicep is down near the bend of his arm.  It could be pulled up and sewed back in place with anchors drilled and embedded in his bone if surgery were sooner than later…that time now has passed (see below).

In addition, the rotator cuff (four big muscles that hold our shoulder together) has a “massive tear” (and there is other damage) but the bigger issue is that the labrum (that surrounds the socket) and the bone around the head of the arm bone and the rotator cuff are all retracted (cannot be pulled up into place without a two to three hour intense surgery–and it still may not be able to be totally repaired.) Someone had an anxiety attack just listening to what had happened to his arm–and I am pretty sure he didn’t even understand it all.  I have had to do hours upon hours of research to do so.

The surgeon wanted to operate two weeks ago–less than a week from the injury would be a safe window to reattach the bicep at the same time as one or two other surgeries.  The surgeon discussed his plan that involved drilling holes in the bones to place/insert (two year) biodegradable “anchors” to have something to hold the sutures and sutured tendons and muscles back on to the bone.  The surgeon was then going to add a large biologic Regeneten patch of processed (cadaver?) tissue over the shoulder that strengthens the torn areas and speeds up healing.

Every step of the way, he and his staff kept stressing how extremely painful shoulder surgery is and that it would take 4-6 months to have just a moving arm and with rehab, up to a year to be mostly functional.  (One time, when he thought Someone wasn’t in the room, the surgeon actually said to me, “If he only has three years left, don’t bother. Recovery alone will be a full year and require intense rehab.” Unfortunately, Someone was just around the corner and heard him. This was not something he should have heard.)

Since I disclosed that Someone has LBD, the doctor required pre-surgery clearances and tests and even pre-surgery rehab to reinforce post-surgery restrictions, how to get dressed, how to put on the surgery brace (it’s all complicated for him), etc. The clearances were to be from Someone’s heart doc (blood tests and an EEG); his main neurologist; and since he was in the middle of trying to have dental work done (four dentists all had very bad and complicated prognoses), a dental clearance.

Unexpected Jawbone Replacement

His heart doc clearance was done that day.  A-OK. A blood test and EKG.  The neurologist, however, wrote a letter that said in a nutshell, surgery is OK physically but I/Someone needed to be told that Someone may not come out of General Anesthesia–either at all; as “himself”; could be fully dementiated (my word because someone would cringe if I wrote demented) and needing to be in an institution for months or forever.  It was also, in my opinion, meant to be a “liability” warning letter to the surgeon.  Finally, the dentist would not grant surgical clearance. Oh, brother.

A CT scan was done of Someone’s mouth/head after no surgical clearance from the dentist would be granted (the dentist wanted to start/finish his proposed work BEFORE surgery)–but in waiting,  the surgeon would lose the ability to reattach the bicep muscle and possibly more damage would be caused in the rotator cuff area.  Which was the more important issue to be fixed had to be established.  The CT scan showed that Someone needs to have at least his lower right mandible replaced–not just some dental work!  It is dangerously close to breaking, the bone rim is so thin.  This disease and complications just destroy their bodies!

Once this was all discovered and reviewed, the surgery that was scheduled for March. 3, 2020 was cancelled.  The head ortho surgeon classified Someone as “high risk” for any surgery–put it all in his records including the clearance/no clearance letters and I was told emphatically by the head neurologist that Someone has to avoid GA (general anesthesia)–period.

All surgeries, the one or two to repair his arm–the massive rotator cuff repair and a capsular repair to hold his arm ball and socket together/it is loose (there is a more technical name but I am too tired to remember it right now) as well as the lower jaw mandible replacement–in which a bone graft from Someone’s hip has to be taken out, molded on the table, while his mouth in surgically opened up while the old lower right (or whole??) jaw bone is replaced/grafted–all require long GA surgeries-and the mandible surgery, maybe the shoulder surgeries as well, require hospitalization.

With these delays, it is now too late to have Someone’s bicep muscle repaired and reattached to his shoulder.  (The one good news in this is that the muscle will “scar in place” and the pain will stop at least in the bicep and it will work even in this odd place.)

More Opinions

I was not going to take “No” for an answer.  I lined up two more ortho surgeons to get their opinions.  Surgeon Number 2 was willing to help but only with GA.  He did at least say that he will be actively researching if there is anyway to help Someone get help/surgery without general anesthesia but it is nearly impossible to do. Surgeon Number 3, I had to reschedule for early this coming week due to Someone’s limitations and pain level–and now with the virus, I am going to have to re-re-schedule because Number 3’s office is inside the hospital.  A quarantine hospital.

I called the Lewy Body Dementia Association for additional medical referrals/resources.  After making sure that I knew that over 65% of LBD caregivers pass on/God calls them before their “patient’–and making ng sure that I grasped that I must take care of myself, too, with all of this going on–the facilitator asked me to think about this: If I can’t get any surgical help for Someone, that it may be time to call in hospice. Hospice.  That was a shock for me to hear or to even have to consider. I pray to God that this does not become the only option.  I don’t like making any of these decisions about Someone else’s life, but at least with the amount of research I do about any one of them, when I have to make any decision, I will be at peace.  Right now, I am still in the “I can fix it” mode.

Can’t Carry the Burden

I was told during a near death experience, after a duodenal ulcer perforated in 2018, to leave your/our burdens at the foot of the cross. Let God handle them! And so I do or I’d be a wreck!

I have also learned to say, “Jesus, I Trust in You,” whenever I get anxious or to get me to the point of remembering to go leave the burden.  We must walk blindly in unfaltering faith–just surrendering it all to Him. No amount of worry or anxiety will help even in the slightest way.  Year after year, my understanding of how faith works–and acting on it–has carried me through some of the hardest, most painful times.  You can do it, too!

I learned how important that is to say that (and to stand in faith after you say it) after reading the diary of Sister (now Saint) Faustina, whose experiences gave us the Divine Mercy chaplet (in song–my favorite!) and a Holy Day, Divine Mercy Sunday (the Sunday after Easter). (Jesus told Sister Faustina that you can say that phrase as many times a day as you need to!)

Thanks for listening and for caring. Especially for caring.

I will have another update soon. I have some other posts that I’d like to write if I have the time, too, especially about this virus and what you should be doing to prepare for home isolation just in case.

What you may not be thinking about, is that even if we have to go into isolation perhaps two to four weeks regionally or as a country–or not at all–the supply chain is being disrupted.  I need you to hear this–items that come in and stock our shelves AND pharmacies are going to be months behind coming in to restock our store shelves after the virus or virus hysteria has passed.  IF you can, buy extra things to anticipate a post-virus gap in many things–pet foods, too!  (more on this below…)

(Please sign up to get my posts in your Inbox–look for the three lines at the top of this page.) In the meantime, I would be grateful if you would keep Someone in your prayers.  Prayers accomplish great things!

Sending much love and always Hugs from the Herd!!

Jane

PS  If anyone would like to help with the RR dogs or would like to write to Someone, the address is:

Rescue Ranch

4057 Riley Fuzzel Road

Suite 500-130

Spring, TX  77386

Much needed:  (Imagine trying to prepare for a 2-4 week isolation with Someone in this condition and a Herd full of special needs dogs–feeling overwhelmed is an understatement! My back feels like it is broken!  I don’t even know if we have shipping time these days before things stop being open/available but whatever you choose to help with, I will be grateful, including prayers–always!)

  1. HEB, Walmart, generic Visa/MC gift cards or e-cards.

2.  Amazon.com e-credits to a.rescue.volunteer@gmail.com

Tubs–10 oz. and 3.5 oz–of wet dog food (HEB, Amazon, Target)

Walmart and HEB:  Big bones/chews, chicken jerky/dried chicken;

…as well as McDonald’s, Burger King, HEB.com and Kroger.com gift cards are needed. (Generic Visa cards can be used anywhere, on any site, in any store.) Prayers are always welcome and are not the “only” thing you can do…but is a magnificent thing you can do!  We all pray for you every single day!

The Virus

At the time of this writing, the COVID-19 virus is in our counties and countries.   Please take all precautions.  I have been studying this and talking to some experts for a few weeks and need to share some of what I have learned.

There is a lipid layer (fatty) around the outside of the virus which is destroyed by using soap–especially blue Dawn dish soap–and then, to be extra vigilant, spray your hands, feet, area with alcohol or another disinfectant.  

Staying 6 feet or more away from people, you must also stay out of the path of their sneezes and coughs, which can propel molecules as far as 20 feet–and linger in the air after they have left the area! The more you can stay in, work from home, don’t go to public places, especially at peak times, the more you can limit your exposure.  Drink plenty of water, build your immune system ahead of time (now) and pray.  Our lives are ultimately in God’s hands.  Remember–Don’t give into fear.  You may choose to self-quarantine sooner than later, too.

Do be smart and get food, water and other things you may need if you were to be told/choose to self-isolate for two weeks to a month. (Some people are guesstimating that there may be a three month isolation if things are very bad.) You want to do the same for you/your family and your animals.

The last thing you want to do is have to expose yourself to lots of potential virus carriers or sick people in order to stand in a government food line because you didn’t prepare–or to have to greet the National Guard every day to get your emergency food box or meal and a soda, as I was told, that would be left at your door–and then how then do you deal with the garbage that will not be picked up? Yes, we’d be grateful for their mercy/help but if you have special diets, food cravings, need more calories, have pets, etc. you won’t have the option like ‘room service’ of ordering what you want!

IF you never need what you buy/bought, just use the emergency items like a pantry and rotate out things as you use them, replacing them with newer expiration dates.  You will always be ready for a storm, another emergency, etc. and I hear that this is just the first wave of the virus.  In six months another may come.

Sign up to this blog to get my next posts about what to do if you haven’t started already.

God bless everyone and all of your animals.

PLEASE…IF there is absolutely anything that I can do to help you, please email me with “URGENT” or “HELP” in the subject box: a.rescue.volunteer@gmail.com  (–even if you just need emotional support or have a question on how to deal with some unexpected issues.)

 

**Divine Intervention?  As I was writing this post, particularly about faith and the power of surrendering your burdens, I received an official call that Someone and his disability will be restored in the next few weeks. He has been “un-terminated” or “restored.” Funny, I just had spaghetti with Someone earlier tonight so I’m glad he is still officially alive!   Thank you, God. Thank you all.

Grateful always.

 

My apologies for any errors.  I will fix them when I reread this with wide-open eyes!

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Bunny’s new ride is a special wheelbarrow with lots of softie toys from her angel!  She is very much less able these days and so is my back to lift her up to go potty.  This is a perfect solution for her to just get in and out easily.

 

 

 

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"Do Good" Opportunities, Uncategorized

Giving Back: A True Thanks-giving

Every day I wake up, I silently ask God to place a soul in my path who needs help-animal or human.  It is an absolute blessing to be able to do something good–from the tiniest thing to the magnificent–to help another.

Every holiday, I try to plan an extra special way to help a family, a shelter, a homeless group, vets, dogs, cats, turtles…a project or task much bigger than my every day blessings.  This year, having a very full “plate,” I was feeling a little guilty for not planning something special at Thanksgiving time but I thought that God would understand since I have Someone to care for and many dogs with very special needs to watch over.  God, however, had other plans…

Years ago, when Someone was acting odd and getting sick, I took him to approximately 15-20 doctors, hospitals, therapists, psychiatrists, neurologists and on and on.  No one could figure out exactly what was wrong so I was told to put him into therapy (he tried), leave him, institutionalize him, etc.  I had known him for so long as a cheery, giving, the most thoughtful, kind human being I had ever met that in my gut, I knew something else was wrong.  Then, one nurse practitioner met with Someone many times and confirmed what I was feeling.  Something was very wrong–but it was not psychiatric!

Saving him from a life of being sedated and confined to an institution, this nurse helped arrange visits to advanced healthcare and up the ladder we went until, after five brain scans, a diagnosis was made: Lewy Body Dementia.  I didn’t know what that was–but I certainly do now–with medications and behavior management, Someone can live at home and not be medicated and warehoused into a “corner.” We owed that special nurse our lives really.

The week before Thanksgiving, I received a call that this nurse, who had moved out of state, was going to be in Houston for a visit.  She was staying with a friend but would love to see us–and of course, we would love to see her!  She met us at the big medical center downtown where Someone had an appointment and we spent about four hours together catching up but vowed to see each other again soon on a social visit.

Within days, as I was just sitting in The Rose Chapel at the hospital praying and lighting candles for all of our angels both animal and human, on earth and in heaven–this nurse was the last candle that I lit one for when my phone rang.  The friend she was staying with told me that she was missing for almost an entire day! Her cell phones had been left on her bedside (turned out they needed charging so she left them since she was just going to get a coffee at Starbucks) and there was no way to find out where she was.  Since she was recovering from an accident from the previous year, her friend was worried that she was lost or had been mugged or worse and filed a missing person’s report and was driving the streets of their area to see if she was hurt.

Sitting in the chapel and praying, gave me complete clarity of thought and a calmness that helped so much.  I immediately began calling hospitals and emergency rooms.  This nurse was such a responsible person that there was no way she would just wander off without telling someone.  Something had happened to her.  I called her son who was having great anxiety being so far away and had him work on his laptop and text me the numbers of the area hospitals–as fast as he could send them, I was calling them.  On the third call, we located her!  Everyone breathed a sigh of relief–but the relief would turn into great concern after finding out what had happened.

The nurse had been in an accident and was taken to the ER by ambulance after a bystander called the emergency number.  She wound up fracturing her pelvis, fracturing the long bone of her arm that attaches to the shoulder joint, and so many other bruises and bumps and cuts that I think it will take months to recover in the hospital and then rehab.  She cannot walk, cannot even sit up in bed and just screams out in agony if moved despite lots of pain meds. She cannot even feed herself.

So, this Thanksgiving,  I knew what God had in mind!  I made sure the dogs had an early dinner, got Someone ready and headed for the hospital–with a stop to pick up two turkey dinners for Someone–and his nurse!  (That is all I could get approved–all of the restaurants were out of turkey that week!)  I enjoyed a soda at the hospital and it was as good as any vegetarian holiday dinner that I could have ordered!

We arrived at the hospital with dinner, pumpkin pie (which was included) and brought along whipped cream and jellied cranberry sauce (a special request).  I had to stop myself from gasping when I saw our vibrant nurse–just shattered and more than physically.  I would have hugged her but I didn’t know where to even touch her–it was that serious a situation.

Someone took out the Christmas lights that we brought for the occasion and strung them along her bed.  (We were told that they couldn’t stay past this one visit.)  I cleaned up the room, made room for both of their dinners and hand-fed our angel nurse her dinner little by little.  (Someone brought a cool bag to put any left-overs on ice so she could have lunch or dinner the next day which was very thoughtful and needed.)

After dinner, I turned out the lights and by Christmas lights only, I gave her a bath by hand, brushed out her hair from the accident, changed her linens…well, tried to help however I could. It was slow going because of her fractures and pain level but I thanked God the entire time I was there that I/we could be of service on this day of thanks.  This was a true Thanks-giving.  (Many more hospital visits to come…)

We got home after 3 AM, and thanked God again for the gift cards that our angels send because we ordered eggs and ham to mix into the dogs kibble when we got home.  We also thanked God for all of the angels who pray for help, send things for the dogs and just care in general.  Without you, we could not do so much to help so many.

Days later, we are still helping our precious nurse and will continue to do so as long as need be.  Yes, it is a big job–but with God’s help and lots of prayers, she will recover enough to walk again.  Her life is literally on the line right now so without the help of her friend who she was staying with and us, she would not make it (her family has not come down yet) so thank you for your patience, for your prayers and your help with the dogs.

God is so much bigger than us. While we are used to saying HE, God is beyond words–God is really all LOVE–the source of it, the power behind it, all of it.  God is conscious though–while He is the source of the love we have for each other or for our animals, He is much more than that.  HE hears our prayers–and apparently He not only knew that I was feeling bad about not having planned to help anyone this Thanksgiving more than I already do but HE also heard the nurse’s prayers–or she would not have even made it to the hospital to eat Thanksgiving Dinner!

Cherish every minute of your lives–and of the time you have with your loved ones. You never know when things will change or when God will call…too many times to count now, I have seen this with my own eyes both with animals and with people so please, don’t rush through your day unconsciously but thoughtfully–and always try to do good, to show love in anyway possible.  It matters.  Even the tiniest thing matters.

Sending all of our love and best wishes to everyone–I will write a dog story soon. I have the pictures formatted and ready to post with the different surprises you have been sending in to help the Rescue Ranch dogs!  (firststop-laststop.com)  There is a wish list on the website or you can just send gift cards for anywhere–especially needed are Burger King, Wendy’s, McDonald’s, generic Visa cards, Petsmart, Petco, or any others that you are not using, we will find a way to use them to help the special needs dogs at the RR!

If you would like to send an e-card (amazon credits are very much needed right now) or to send a credit to use for their medicines via paypal, please use: a.rescue.volunteer@gmail.com

If you would like to mail a card or gift card, please send to:

Rescue Ranch

4057 Riley Fuzzel Road

Unit 500-130

Spring, TX  77386

 

 

Thank you so very much for caring.

We are extremely grateful and extremely blessed that you are in our lives.

 

Love and Hugs from the Herd Always-

Jane

 

To see the special pic I took one day sitting in The Rose Chapel, if you receive this post via email, please click on the link at the bottom of your email text.  The featured pics on my blog do not go to the email subscribers for some unknown reason!

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Uncategorized

Four Day Dementia “Bender” Started With A Shower Head

My next story will be a RR dog story!

There are funny things that happen along the way but it seems like they are happening less and less frequently.  Like what happened to this weekend’s chicken bar-b-que pizza (aka a piece of rock-hard cardboard–see pic above or click the link at the bottom of your email post) that I decided to make instead of ordering in!

I always set the cook timer so the oven would shut off after the designated baking time because I never know what is to come but with everything going on, it took me another forty minutes to actually take the pizza out of the oven!  Dinner ruined, it’s soup and crackers–again! Oops! It was too late to call for pizza delivery.

I never thought I’d be writing about dementia–never mind living through what is simply a mind-bending experience–especially at my age (not retirement age).

I always thought that Alzheimer’s and Parkinson’s and the rest were “elderly” diseases which came on gently and progressed until the afflicted passed on at a much advanced age.  I never knew that there were “early-onset” versions of these diseases which progress faster–and come on and continue fast and furious–until the afflicted person passes on at a much younger age (in their forties, fifty or sixties).

In my Someone’s situation, he was in his 50’s when it hit. It didn’t help that I had never heard of something called Lewy Body Dementia which is a combination of the symptoms of about seven of these illnesses combined–not for the faint of heart or mind to deal with.  (It took nearly ten months and almost fifteen doctors and five different brain scans to get a diagnosis.) I am really strong but this is testing even my resolve.

I woke up this Friday morning–after about an hour and a half nap–to find a shiny metal shower head on the bed–it looked just like the one on the shower I use! My first thoughts were was the house being flooded and where was the water shut-off valve to the house!  I sprang into action.  (There is just never rest for the weary in these situations–every time I fall asleep, I wake up gasping, with my heart racing, wondering what I am going to find next–even if nothing is going on.)

Turned out that overnight Someone had “flipped” into what would become a four day active dementia “bender.”  (He doesn’t drink alcohol but I am at a loss for what to call these episodes. I need to ask his LBD specialist.)

He remembered that I had mentioned that I was having trouble with the water pressure in the shower and decided that he was going to surprise me and fix it–or at least investigate it’s cause. Thankfully, he fell asleep before he took out the main water valve in the shower thus avoiding the water catastrophe that I immediately jumped to in my mind when I saw the shower head on the bed.

For four days, I’ve had to be an almost 24/7 safety monitor, nanny, diplomat and stern mother to a very much grown-up man.  Thankfully as I write, he has snapped out of it and is now “himself” again which I pray will last for a few days–at least long enough for me to recover and regroup.  During those active dementia days, I can do nothing more than focus on what is before me second by second.  It feels like a million issues coming at you in fast motion that you have to evaluate, respond, prevent, intercede in and even deal with consequences or “oops-es.”

When in active dementia, which is particularly unpleasant in Lewy Body, everything has to be said over and over again–rarely are particular directives heard or understood until the intensity and volume increases as does the emphasis.  (In other words, talking softly, which is my nature, and calmly explaining things doesn’t work–between their brains not processing words/sounds and they are not wanting to be told “No.” You just have to “insist” sometimes!)  You have to take things away like from you would from a toddler who doesn’t know better, you have to prevent things from happening–always trying to anticipate one step ahead but sometimes never being able to do so.

Yes, there are institutions for people with this illness. Unfortunately, insurance nor Medicare covers them.  They are all private pay–at $8-12,000 per month depending on geography–the little bit of equity we still have in our house won’t go very far at all. A diagnosis of LBD means being held in a locked memory care facility (the most expensive level of care not by choice)–one that requires leg bands that track the patients like prisoners and prevents them from wandering away plus it requires a high staff to patient ratio.  Most people in these units however are of advanced age. The early-onset LBD people are few and far between.  The activities in these locked units involve looking out of the window, playing checkers and wheelchair gymnastics. My Someone is still able to walk and function when he has continued periods of sustained consciousness so it would be absolutely devastating to “snap to” and find out that your day consisted of bird watching–with a group of 80-90 year olds (no offense meant)–some in a continued state of “awake unconsciousness.”

Some caregivers and doctors have said that I could just “quit”–just leave Someone at his doctor’s office and say that he no longer has home care or just “resign.”  (How do you “resign” from caring from someone you love?) He would then become a ward of the state which would be worse than the private pay institutions.  I have been inside a state-run facility, many years ago as a volunteer Christmas caroler, and quite frankly, it was horrifying.  Everyone was naked, they had no blankets or anything that they could hurt themselves with in any way, the unit was locked down with heavy doors and gates and people were heavily sedated to keep the staff-to-patient ratio low. Even to my own detriment, I will not allow this to happen to Someone.  There has to be another solution.

Since I had to be awake most of the past four days–with an occassional nap–I needed to stay busy so I decided to clean out the refrigerator and Someone’s snack corner in the kitchen. (Someone’s snacks were overtaking the majority of kitchen so I had to designate an area with a confined bin and space which translates to limited snacks. He’s always loved to try different things–in sequence–but now, he wants to try them all at once!)

Dementia affects each person differently so I can only speak to Someone’s dementia-based quirks, one of which is saving one bite of anything “for another time.”  That means when I took apart the kitchen’s snack corner and bin and the refrigerator, there was zip-lock bag after zip-lock bag, stuffed in the back of the ‘frig and in Someone’s snack area, full of quart and gallon bags–each with just one single bite of everything he liked but had almost finished.  (I keep up with this task regularly so this wasn’t a surprise. It is just getting worse.)

Normally, I would have just thrown these bags out but with this stage of LBD, Someone can’t lose control over his “things” suddenly lest it trigger a tantrum.  Not wanting to deal with that at all, I had to ditch most of them quietly (Someone has no conception or memory of the inventory of what was there just that there were “bags of bites” there) so I left those that were recent/edible and then gave Someone a twenty four hour time limit to finish them. Without setting boundaries, no matter what they are or how arbitrary they are to me, Someone would just be lost. Setting and maintaining boundaries is no easy feat–they can be modified, and most times are many times over, but they have to exist.

I am extremely grateful to have Someone in my life still, in spite of this beast called Lewy Body Dementia.  I am having a difficult time imagining life otherwise.  I think the knowledge that this is not an illness that will get better but in fact, one that will end in ‘The End,’ is more than a little bit terrifying.  Those days that we can go for a ride in the car and enjoy the sun and the wind–and stop at Dairy Queen and hold hands and enjoy an ice cream–or sit and watch a movie together and have dip and chips or a pizza–or popcorn if we are lucky enough to actually be on time for a movie after four, five or even seven tries–are precious.  I used to take them for granted–like they just always would ‘be.’ Now, I know that they are going to be memories that I will cherish for the rest of my life.

My intention is not to depress or sadden you by writing about Someone’s illness and the situation around it.  I want you to just appreciate your life and your blessings and to encourage you to live in the present moment.  It is too easy to push through everything just to get through the day but the littlest, sweetest moments get lost.

For instance, I know that when Someone walks by me and tugs lightly on my big toe (if I am laying down resting, always with two ears “open”), that means that he loves me.  He doesn’t let a day go by that I don’t find my big toe being lightly tugged at least once.  While it may wake me up from a much needed nap, I have to appreciate the significance of what is happening.  Those tiny little moments get lost if you don’t slow down to notice them–and stop and thank God for them, too.  (Even a little dog’s lick of my finger after holding her water bowl up to her mouth is the same thing–it is a “thank you” or an “I love you” for taking special care of her.  Slow down, notice them and tuck those things away in your heart.)

Promise my next story will be a dog story–after all, my life is dogs–and dogs are my life!

Thank you for caring.  Especially for caring.

Jane

 

Want to Help?

If you would like to help with the many special needs dogs that I care for, please send a credit for amazon to: a.rescue.volunteer@gmail.com

OR

If you would prefer to mail a card to Someone or something like a gift card (generic Visa to your favorite fast food restaurant or grocery store–all and any will be appreciated) to help the Rescue Ranch dogs, please mail to:

Rescue Ranch

4057 Riley Fuzzel Road

Ste. 500-130

Spring, TX  77386

 

Grateful. Always. Grateful.

 

Ada.Girl.EnjoyingSolLight.March2013A.

Archives: Girl, the Texas Pearl, and Brave Ada–both now our precious angels–enjoy the Sol Light (a light-therapy light) that was sent to the RR to try.  Little Bitty Bits is the one who adopted it as his own–and everyone else had to share!

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Bitty Bits LOVES the Sol Box by Pawsitive Lighting.  I think light therapy is good for people and pets–especially if you or your animals don’t get much time outside for your bodies to make Vitamin D (D3 especially!)-which is critical for all of our immune systems.

 

 

 

 

 

 

 

 

 

 

 

 

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Uncategorized

The World Turned Upside Down: Life with Dementia

I was trying to dig out cold butter from the tub with my white plastic spoon today.  I was just trying to put some on spaghetti–I can finally start eating soft foods after almost a year and a half after a dudodenal ulcer blew open.  The situation was just so silly that I thought that maybe I should share a little snippet of what life is really like these days–living and caring with Someone with Lewy Body Dementia. Unless you have lived through it, you just cannot imagine the different stages that come and go, some more traumatic than others.

Not only do I want to share, so in case this crosses your own life, you can be braced for what’s to come but for those of you who are lucky enough to not have this in their lives, please take a breath many times a day and appreciate the simplest things–like you can use silverware to eat, and plates, that you can sit at a table and have a conversation that revolves around more than snippets from TV shows and that you can smile and laugh with each other, with your animals, even with yourself.  I really miss talking about geology, world events and working on finding the remedies and cures for different canine diseases and life in general.

Plastic spoons are the only utensils that we use now since a year after after Someone was diagnosed with LBD–just before Christmas, December, 2015–we were in shock for a month after that!

Imagine trying to eat spaghetti–even broken up into small pieces before boiling it, is a comedy to behold!  I even have to use a spoon to cut birthday cake!

Soon, I will need to order red plastic spoons and plates since as these patients’ vision decreases, they can only really see their food against red–and now, they have discovered against yellow, too.  (Helping them continue to be as independent as possible is the continuing goal.) There are red dishes, spoons, cups and some adult size toddler forks (smaller, wider tines) but with the hand tremors that come and go, forks are not as safe as spoons.  After the “red everything” stage, there are vibrating spoons that counteract the tremors so LBD people or even those with Parkinson’s can use to continue to try to feed themselves.  Just a single vibrating spoon is almost $200!  That phase is still a while away I hope-so is the wheelchair and the need for a home with no thresholds, wider doorways, non-slip floors and many more accommodations.

I keep a small paring knife hidden in a plastic bag, tucked inside a drawer, just in case I need to cut up some fruit or vegetables.   I had to put all of the regular silverware away at least two years ago.  I just emptied out the drawers and put it away.  The utensils were being used for digging in the yard, getting lost down the disposal (something that is now also locked down–and unfortunately rusting into a mass), being put in the microwave with meals and more.  I do have a rubber mixing spoon and ladle out that I use for the dogs’ food.

The oven and cooktop are locked and are only used when I have the baby gates to the kitchen closed to keep Someone out and it is safe to use them. I am on high alert during these times–it is not relaxing at all to cook. The switches are taped down on the appliances if I can’t remove the knobs or lock, corners on counters and furniture are wrapped in bubble wrap and packing tape in case of a fall or Someone slips. The doctor is ordering a lock for the refrigerator and freezer.  Middle of the night food feasts happen more often than not, contributing to Someone’s growing waistline. (This is important to stop this because I have to be able to help Someone if he slips or falls or even needs a shower, etc. but at a certain weight, I will be unable. Even now, I would need a mechanical hoist if he could no longer walk.)

We use plastic or paper plates.  Too many of dishes were broken in the first few years and it just became a hazard.  I have lovely things to set a table with, but now, little by little I am donating most everything to a women’s shelter donation store or asking if anyone needs anything. (If you are in need or setting up a house, please contact me.) We drink out of plastic cups and the dogs all have metal dishes–no more ceramic or hard plastic–and water bottles so if something drops, there is no mess or hazard.

It takes at least three hours to get Someone up and showered and dressed to even go to a doctor appointment. Thankfully, he is still able to stand and take care of himself but I have to supervise everything–from taking an hour to just get him to get up out of bed to getting him to eat to changing into clean clothes. (Hygiene is constant issue –they see wearing clean clothes as “wasting” the clothes they wore previously–unless they are covered in mud or dog food or spaghetti sauce for instance.)  For some reason, a lot of dementia people have an aversion to baths and showers (maybe it is a water and/or noise phobia?). I have to wait until Someone is sleeping to gather up all of his clothes and towels and wash and dry them and put them back exactly where they were and how they were.  If Someone is awake and I try to do his wash, he will wrestle them away from me and put them all back where they were.

Often times, I have to reschedule appointments two, three or more times in a row before we can actually get somewhere.  Some doctors understand, some do not and then I have to find another one who will.  I think until you have lived with this disease, you cannot comprehend how devastating it is to “normal” life expectations. Maybe then they would be more tolerant.  Having patience is a grace that I continually pray for–sometimes second by second.

Lewy Body Dementia is a progressive, neurologic disease–and it is terminal, usually in about seven years give or take.  The hardest part to deal with, besides utter and complete exhaustion from having to be a babysitter/superviser 24/7 because they sundown or have episodes that can go for twenty four hours of straight activity, is that at any time,  they can “flip” back to normal or back to “active dementia.”  One minute you can be supervising someone who goes to get the mail at 3 AM in his BVD’s (everything has an alarm and bells on it now to thwart these episodes) to the man you knew before he became ill–just physically declining, suddenly “showing up.”

At that exact moment, when he flips back to consciousness, he is himself and cannot understand why everything is locked up, taped up, why I am hovering, exhausted, and repeating things over and over again since in the dementia state, you have to repeat the exact same instructions day after day and sometimes hour after hour. There is a sharply declining short-term memory.  I have even tried making signs like, “Turn off the TV,” or a schedule of eating and activities but they are simply ignored and in his “normal” state, he is offended by it all.  Hearing issues/mistakes happen often and while some are hilarious, others offend Someone when he misunderstands what was said and it is really uncomfortable.  Hearing and eyesight decline–almost every single light in the entire house is on all night long and TV’s and/or the stereo are on as loud as I can stand it.

Television is the be all and end all. It captures the LBD mind and he will stand in front of it like in a zombified state for hours if I don’t intervene. TV is on 24/7 on two sets.  On one TV, he sets the channels up for the dogs–we have one, Rocky Rocks, who actually can watch the shows with Someone and so Animal Planet and Vet shows, etc. are on all the time.  (I have to take a movie of Rocky watching TV.  It is too funny! He loves porcepines and horses–and of course, dogs! My beloved Poppy was the only other dog I have known who could watch TV like this.)

On the other TV, which is in the bedroom, Someone will try to watch all kinds of very noisy war movies or history shows but since I sleep on a futon couch perpendicular to my “Sigh,” “old” bed,  I intervene and put on some things that are more peaceful. My mind has got to rest a bit!  I get a little grump or two directed at me like, “Why don’t you just go to sleep…” which means, “Go to sleep so I can change the channel back and turn the lights on,” but my eyes, ears and mind just get too tired to have that noise drilling into my mind all the time. I finally decided to take an hour a day and go sit in the guest room and do my prayers and rest when Someone finally goes to sleep. I just enjoy the quiet and stillness. Once he falls asleep, I go into the bedroom and turn just the screen off on the TV. He will wake up if the sound is turned off–and I need a break–so I leave it on low!

They hoard things–everyone has different things but let me tell you that this is mind-warping to deal with.  One night, I saw a row of ants going across the wall into the office.  “What in the world…” I thought at 3 AM.  I found a cache of candy stuffed behind the door.  I began to look for more.  After finding two garbage bags of candy–all clearance candy he picked up and hid from whenever we went grocery shopping and there was nothing special imparticular–from lollypops to tootsie rolls to Sweethearts–anything for less than a dollar.  I let him pick a few things out and had to throw it all out. It has been accummulated from the clearance tables for years apparently. He only has $20 in his wallet for emergencies so he had to get it cheap and there is no discrimination of what it is as long as it is on clearnace.)

Between his weight issues and the disease destroying his teeth and gums and skin (he was a tooth health fanatic so this just breaks my heart for him), I could not have these outdated, children’s sweets squirreled away all over the house.  (Any sweets angels send, like special treats, hams, breads, cheeses and cakes, I keep in the refrigerator and share a little at a time. He can definitely have the fruitcakes and goodies that you send–he loves fruitcakes especially!)  I now have to supervise Someone in the store like a hawk which makes it very difficult to concentrate–or to relax at all. Walmart is the number one go-to requested stop–so we stay away from it! Candy is just one of the things that Someone likes to hoard.  Cardboard is another huge issue. (One day, the pictures I’ve taken will speak a million words.)

They also develop habits that are harmless but test your last raw nerve.  For instance, if I serve ice cream for a snack, he eats it and then scrapes the bowl at least 300 times if not more to make sure nothing is “wasted.”  When I stop and pick up salads, I get “ordered” to leave the kitchen because he now has taken over my precious spice collection and spends an hour creating his special salads.  I am glad that he is doing something with such enthusiasm especially more than sleeping or watching TV so I emotionally let go of my spices (I used to love to cook–and Someone loved whatever I made even when I goofed!) but it hurts a little to see the spices that I collected from all over and used to cook great meals with, no longer organized nor usuable for more than Someone’s salads.

Since everything is on lock down, only the basics happen now in the kitchen–a beautiful chef’s kitchen is now unrecognizable no matter how many times I re-organize it.  I look at the pictures of what it was and just want to cry, hence the need for gift cards to bring in meals for Someone and for the dogs.  There are days and nights that I can do no more than hand out burgers to all, take a shower and collapse because my body just hurts so much.  (I still have to stay awake though until Someone gets tired enough to lay down–then I wonder what quality of sleep I am really getting one hour or half an hour at a time.)

Someone loves getting cards in the mail.  It is the highlight of his week.  The few people, the very few, who send them, will be blessed for their compassion, I am sure. His family and friends ditched him when he got sick and so his world is me, the dogs and his mail, his doctors, the clerks at the grocery stores and occassionally, the handy man who his wife thankfully sends over to help me around the yard/house. To see the happiness that comes from opening a card–he cannot do email anymore–and now he asks me to read the cards to him–is a special moment.  I thank God for those who do this and who continue even though he can’t write back. It has been a few years and a few more to come.

When the weekly mail comes and there are no cards some weeks as time goes on especially, I notice his disappointment and am sad for him.  To see a man, who was so selfless and gave everything he made to help people and animals and to perfect the cure for canine distemper, be abandoned by almost everyone, is heartbreaking. Even his own mother wrote to him a few months ago telling him to just get his act together, come take care of her like most sons would do, and go back to work!  (He would give anything to go back to his beloved geology!) Even she, knowing the diagnosis and prognosis doesn’t get that just because he is walking (albeit slower and stiffer) and talking (albeit more confused), that he is dying slowly and painfully.  This is why it is called “the slow goodbye.”

There is levity at times when I have had some sleep and he is “himself,” we do belly-laugh at the things that have happened or that he has said or that he mistakenly hears instead of what was said. Someone says he is glad that I can “entertain” myself in this situation. The moments can last for an hour or a few hours but I always know that Lewy Body Dementia is going to return–the beast that I had no knowledge of before this and the beast that I am determined won’t get the best of us. I thank God that I believed in Him and in Jesus so strongly–in fact, my entire life–before this happened.  I talk to the Divine, pray a lot and ask for strength, for mercy, for stamina even as I run through my day and the long nights.  I don’t know how someone who didn’t have an established faith would do in this situation.

The dogs are a blessing even though some people, including his mother, have said to get rid of them or even euthanize them if I can’t find them homes. They are not adoptable or they would have been adopted a long time ago.  We took them in when no one else would. Yes, it is super difficult to juggle all of this but with some help, which is dwindling at the most needed time, it was easier.

The dogs play with Someone and give him a reason to get out of bed or away from the TV and they just adore him.  He talks to them with such love and adoration and they respond in kind. They play catch and tug and a couple of them sleep with him or nap with him. It is a beautiful thing to watch. He is a dog whisperer really. If we didn’t have the “Herd” to care for, I think the situation would be so overwhelming for me–there would be no distractions to a situation that is devastating.  At least this way, there is love, entertainment and play time for all of them and Someone–just the work of keeping it going all falls on my shoulders alone now–and I can’t go out to work to support the crushing expenses or even to go to the doctor by myself.

Yes, there are locked memory facilities that admit Lewy Body patients.  They cost about $12,000 a month–so it is not possible to do at this time plus I don’t want Someone to be locked up when he is still flipping into conscious awareness.  It would just destroy his spirit.  So as long as I can manage, I will continue what I am doing–learning to laugh at the bowl-scraping and the hoards and piles of things and the, and the, and the…Some day, I will be able to live a “normal” life again and in the meantime, I just have to flow with what is going on, making sure Someone is safe and that everyone is taken care of.  I pray for the strength to keep going and for the patience to do so as well–sometimes minute by minute.

Today, when you would rather stay home from work, be joyful that you can go to work.  When you are tired and have to cook dinner, be thankful that you have a kitchen to use and the ability to make whatever you want, when you want.  When you want to go to a movie, to a doctor, to have dinner with friends, be grateful that you can get out to do these things and also that all you have to do is grab your keys and wallet/purse and get in the car–without planning for hours on how to just get to the store for some milk!

…and when your dog/cat/horse needs to eat, share your table scraps–as long as they are foods they can eat.  No dog should “pass on” without having tasted pizza or ice cream or peas or lettace with ranch dressing or mashed potatoes with melted butter! Cats have their own special treats as do horses and hamsters and turtles!  Never walk past or over an animal without stopping to massage their shoulders or pet their heads or buy them a new toy or tell them that you love them. The same stands for the people in your life.  Never take anything or anyone for granted.

In other words, be kind, compassionate, sharing of yourself, caring and loving whenever you can, as often as you can to those you know and even to those who just cross your life’s path.  Live life with a grateful heart no matter what life brings your way.  In the end, it is all really just about love.

God bless you always in all ways.

Jane

Mike.Mebs.Pops.Grand.Canyon.2.2007.a.lighter

Yes, ours dogs–our babies really– (Mebs and Poppy) even went to visit the Grand Canyon with us!  Just after this photo, the Rescue Ranch opened and we took in our first dog–a little Cocker Spaniel, Kasey, in February, 2007.  

 

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Kasey was the dog of a soldier who was deployed to Iraq.  He had been left with the soldier’s mother in North Carolina but we found him in the Los Angeles area while we were on vacation!  We contacted the phone number on his tag and his family relinquished him to us.  God called Kasey’s name in April, 2016 and then Poppy was called just six weeks later. We adored this gentle little dog and always will.

 

Remember, please click on the link below in your email of this post to see the featured pics as well as the edited posts.  I always edit after I publish–it is easier to correct posts in that format.

 

IF you want to help the Rescue Ranch–or write to Someone–the mailing address is:

Rescue Ranch

4057 Riley Fuzzel Road

Suite 500-130

Spring, TX 77386

 

Anything e-  credits, cards, (amazon credits are needs as are generic gift cards, gift cards to McDonalds, Burger King, Wendy’s and HEB (grocery stores) should go to: a.rescue.volunteer@gmail.com

 

Thank you for caring.  Especially for caring.

 

quote.poppy.letyourlightshine

 

PS  Sorry I have not been writing so much these days.  I used to get up every day at 5 AM and just write.  Now, I have to put it on a ‘To Do’ list or I have resorted to writing “Write!”  on the palm of my hand!  One day just blends into the next and there is never time–except for once in awhile–to sit for hours and just write.  Those were the days I thought would never end…cherish yours while you can.

 

 

 

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"Do Good" Opportunities, Autobiography, Just Gotta Laugh, Uncategorized

It’s Always Something

Thankfully, this past week, I had listened to a Deepak Chopra show on PBS about the spiritual laws of the universe.  (I keep the screen off on the TV and listen to the sound while I work.  While I don’t agree with everything he says, I love to consider all different points of view.) I remember him saying that everything happens as it is supposed to and that we are to only live in the present–not carrying anything from the past or expecting anything from the future.  “Food for thought, ” I thought as I mulled it over.  His three or four hour lecture was fresh in my mind.

I have been working all week on a project that was over 400 pages and needed to be Fed Ex’d PDQ.  I kept reading it and reworking it–about eight times–to cut out any repetitive sentences, thoughts, or even paragraphs and got it down to 265 pages.  That would cut down on the copying charges, the weight of the Fed Ex and the time that someone else’s tired eyes is going to have to read it!

With three hours to spare, it was time to leave to copy it and send it out.  Four of six doctors had responded with letters that I needed and records to support what I was writing about. The others I asked couldn’t do them until next week but I really needed to get this in today–or so I thought.  (I told Someone to get dressed and to get in the car at least a few hours in advance.  I took five to actually get him sitting in a seat.)  “Oh,” I said, “I need a credit card.”  The machines are now automated.  You can’t just pay cash at the counter after making copies.  “I’ll get it,” Someone said.  “Great.  Then, let’s go,” I said.

We drove there and I got everything set across the counter, Exhibit by Exhibit, to copy. Someone kept putting the card in the “reader” and it kept coming back.  “I don’t know why it keeps rejecting the card.”  “Let me see it, ” I said.  It was the correct bank card. Then Someone said, “It is a 2018 card.  The new one doesn’t come until the summer so it should work.” Oh.

My Someone has Lewy Body Dementia.  It is not a disease with a steady decline so you kind of know what to expect day to day.  LBD changes hour by hour, day to day.  While physically weaker, some times, Someone is “himself.”  Other times, there are clear signs that something is wrong–some things I will not talk about until he is no longer with us.  I don’t want him to lose his dignity but know that no one could ever prepare for this disease.  It is a mind-bender.

Well, we took the document and the card and headed home.  There is nothing you can say in this situation other than, “Well, I’ll get the right card and we’ll come back tomorrow.”  Now, I know I need to watch for another level of impairment.  I know I would have destroyed the old card and double-checked it before I left to go out.  How he found an old card I will never know.

On the way home, headed for McDonald’s for doggie burgers, Deepak Chopra’s voice was telling me that everything is as it is supposed to be.  Let nothing upset you.  Expect nothing.  Thankfully, I don’t get upset easily so other than a little extra stomach acid rumbling around,  it doesn’t matter.

“Tomorrow is another day,” my mother used to always remind me.  Maybe there is something I forgot to include.  Maybe one of the doctor’s who didn’t get included will send their letter earlier than next week.  Maybe maybe maybe.

It will take a couple of hours now to feed the dogs who won’t eat dog food or can’t eat dog food but not having the burgers, would mean I’d be up all night into the morning. Taking care of special needs dogs is so outside the normal “pet,” or even fostering, experience. They feel like eating–or drinking–one day and then not the next.  I have to have all types of things available for them to eat–sometimes, they only want my cheese sandwich or my cheese pizza–then I have a juice box for dinner!

When you get frustrated, just remember to stay in the moment.  Things are going the way they are supposed to. Let go and just go with what is happening. (I sure pray lots of prayers, most that I learned way back when and read prayer cards for reinforcement and at the same time, too, as I’ve been told, to praise–say, “Thank You,” for all things, even those that haven’t happened yet instead of begging for things yet to come–or not. Even the hard things, the things you wish weren’t, the things you are glad about.  All things.

“Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:18 (NIV)

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IF you want to help me continue my “mission” caring for special needs animals, and there are lots of them at the Rescue Ranch, please help in any way you can.  Thank you!

You can:

Send Prayers are always welcome and much appreciated.
*
E-anything–from email to much needed amazon credits and gift cards–from generic Visa to fast-food restaurants, please use: a.rescue.volunteer@gmail.com (or the mail)
*
Mailing address: Rescue Ranch, 4057 Riley Fuzzel Road, Ste. 500-130, Spring, TX  77386
*
Rescue Ranch website: http://www.firststop-laststop.com  (I will update the site/blog after I am done with this project. I will let you know when I am posting there again–probably mid-March.)
Grateful.

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“Giving connects two people, the giver and the receiver, and this connection gives birth to a new sense of belonging.” ― Deepak Chopra

 

^^^^^^^^^

“If you could really see that tree over there,” Merlin said, “you would be so astounded that you’d fall over.”
“Really? But why?” asked Arthur. “It’s just a tree.”
“No,” Merlin said, “It’s just a tree in your mind. To another mind it is an expression of infinite spirit and beauty. In God’s mind it is a dear child, sweeter than anything you can imagine.”

 

 

 

 

 

 

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