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.
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: firstname.lastname@example.org
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:
4057 Riley Fuzzel Road
Spring, TX 77386
Grateful. Always. Grateful.
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!
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.