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

The Garage Door Incident

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

BOINGGGGGGG

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

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

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

Someone Was Outside Alone

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

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

“Uh-Oh”–That Famous Word

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

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

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

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

Fingers Injured

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

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

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

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

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

Thank God

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

Thanks for listening and for caring. Especially for caring.

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Just a Thought

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

Ways you can help caregivers or the seriously ill:

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

Grateful. Always grateful.

 

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

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

 

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

 

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Autobiography, Human Interest News, In the News, People Health

Caregiver Relationships Are Sacred: In Defense of B. Smith’s Husband

A caregiver seeking out a new relationship while their ill significant other is still alive is not about the sex.  It is about validating that they are a human being.

Since my husband’s devastating diagnosis of early onset (mid 50’s) Lewy Body Dementia (huh?) just before Christmas, 2015, I, too, would have judged Mr. B. Smith/Dan Gasby for having a new girlfriend–and bringing her into the family home to live–while his wife is dying from early-onset Alzheimer’s.  Not any more.

First of all, early onset means that not only is the person 20-40 years younger than those normally affected but it also can mean that it is fast-progressing and manifesting in unimaginable ways.  I know in the case of my husband, who will be called “Someone” hereafter in this blog, I struggle daily, sometimes hourly, to retain my own sanity, my own dignity, my own grasp of reality when dealing with the episodes when this disease rears its bizarre and ugly “head.” (Lewy Body is not a steady decline like some of the other dementias–it is erratic and bizarre and the person that was actually comes “back” for a few hours a day here and there–until the end.)

I am sure Mr. Gasby struggled to take care of things for a long time by himself.  He and Ms. Smith could have even had private conversations about his being able to move on when she either passes or gets to the point where her normal consciousness has left.  We don’t know what their personal arrangement is nor can we judge.  These situations are all different and all so very, very difficult on the caregiver especially, who is usually the spouse or significant other.

The decision to take on a partner is not about the sex.  Believe me, it is the last or next to last thing on your mind.  I am sure, being in the thick of it now, that it is about having someone to come home to, or to be at home with, who asks how your day is going, or to admire the beautiful day with or the stars or the yummy dinner you just made.  It is almost impossible to be a whole human being without anyone to give you a hug, a kiss, even just a simple “hello” or a smile.

My Someone doesn’t even remember my name anymore and decided a few months ago that there is no sense in responding to my talking.  Sure, he can hear me but he made decision to not respond. “Why bother?” he told his doctor. When I ask things like “Honey, would you like butter on your potato?” or “Sweetie, would you like to come and watch a movie with me and I’ll make some warm popcorn,” there is “crickets” for a response as he shuffles around the house, going from task to task to task, each never started and never finished but the messes are all left strewn behind.

The Someone’s who are afflicted with these neurologic illnesses become gradually like blank slates.  The person we loved and knew is being erased or is fading into oblivion.  With thirty or forty years left of my own life, I know there will be a future (after a few years to just recover from this experience). I don’t want to complicate things now by bringing in another love.  Quite frankly, I don’t even have a minute to go find one!

That said, someone else’s way to survive this maybe be the way B. Smith’s husband is choosing.  The primary benefits–and it is not sex!–is that he gets companionship from the new person, which can make him a better, refreshed, vibrant caretaker of his wife instead of what eventually becomes a depleted, exhausted, frustrated shell of a caretaker–and B. Smith gets another caring person to take care of her, her home and her precious husband.

Before you judge, please walk a mile in someone’s shoes.  I have walked half way around the world, or so it feels, and know what this feels like, what the needs are, and have learned not to judge any caregiver’s way of both dealing with the situation emotionally nor how they get through their days–as long as the afflicted person is taken care of in love and in honor.

Afterthought…You know what I miss alot?  Someone saying, “God bless you,” when I sneeze.  It kind of feels like you just don’t matter any more when that is no longer said but rationally, I know it is just a byproduct of LBD.

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I hope you come back regularly.  Between dealing with Lewy Body Dementia (a post for another time–but in a nutshell it is dementia, Alzheimer’s, Parkinson’s, Bipolar, Depression and a bunch of others all rolled into one) and a small ranch of special needs dogs, some in wheelchairs, some with other disabilities (I will share their stories here, too), please click on the menu above this blog and give regularly when you can.

If you don’t have time to do all of that, please go to this link and leave a gift: https://www.gofundme.com/gofundmecomicantbreatheblogfeb2019  It will help me keep this ship afloat. I choose to spend this precious time with my special Someone–and I can’t leave to go to work nevermind relax or sometimes even sleep.    God knows, I don’t wish any of this on anyone so please understand that we, caregivers, all need to do what we need to do to just keep breathing sometimes.  It is that hard.

Thank you.

 

 

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