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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

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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.

 

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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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