The Head-Banging Never Stops…

This is going to be short.

The best thing about banging your head against a brick wall is it feels great when it’s over, or so I’m told.  Whoever came up with that phrase didn’t have to care for someone with dementia.  Why do I say that?  Because the head-banging never stops.  A while ago, I told you about a product called Tile, and that it helps you to locate things that have been misplaced.  However, it only works if the person you want to help cooperates.

About two months ago, I had to go TDY to Indiana.  Carol had $100 in her wallet, as well as her driver’s license, which is her only photo ID [and which I’ve replaced once already].  I gave the money and the license to Greg for safe-keeping in case they were needed, such as if she had to be seen by a doctor while I was away.  A couple of weekends ago, Mark visited us during his spring break.  While he was here, Carol asked Mark to help her look for her wallet, because it had the $100.  Once Mark told me this, I turned on my phone and activated the Tile app so the Tile I put in her wallet would start squawking.  The good news is that the Tile worked as it was intended.  The bad news is that it wasn’t with her wallet.  Then I asked Greg where the money and the license were.  He told me that Carol had taken them back to put in her wallet.  I didn’t bother to ask Carol why she removed the Tile from her wallet, because it would have been an exercise in futility. 

After the letdown of not being able to find the missing wallet [it’s in this house somewhere], she complained about a missing set of keys.  Her key chain had its own Tile.  When I activated the Tile for her key chain, same result – a squawking Tile that was easy to locate, but no keys.  She took the Tile off the key chain, just like she had with her wallet.  The hits just keep on coming…

Why do I bother?

This week I started working from home because of COVID-19.  Also, this week, Carol decided she didn’t want to take her evening meds.  Ever since she was put on a morning and evening meds ritual, she’s been complaining about having to take the same thing over and over again.  Then she said she didn’t need them because she falls asleep easily and doesn’t need them.  I’ve explained the evening pills weren’t for sleeping, but to help her mind.  That message hasn’t stuck and probably never will.  This evening, I asked her if she would take her pills, and she said no, she didn’t like the way they taste.  This time I said “you’re getting further and further away from me”.  She said she wasn’t going anywhere, and I explained that wasn’t what I meant.  I told her “sometimes you don’t even remember my name.”  I still have a hard time convincing her that she has two kids.  She doesn’t believe me.  I can’t MAKE her take her meds, and I don’t know how to convince her to do so.

Why do I bother?

I know why I bother, but it’s no comfort.  I know how this will end, but I fear the end will be coming sooner.

Her Brain Threw a Knuckleball Today

Just when I thought we’ve settled into “new normal”, Carol’s mind threw us a knuckleball.  She now has conversations with herself whenever she sees a mirror.  She thinks the person she sees is an actual, living, breathing entity.  Every night she’s usually in bed by 8pm.  But last night she was up until 1am [way past her bedtime].  She thinks the person she sees in the mirror lives here.  With Mark away at school, it’s just Greg, her, me and three cats that live here.  But she always thinks there’s more people here.  She went about making her a bed to sleep in the spare bedroom.  I have to tell her without raising my voice [I do that when I’m frustrated] the it’s not really her, it’s just a reflection, a “mirror image” of her.

Today she wouldn’t shower because her reflection hadn’t done so yet.  It took me 45 minutes to convince her that the person in the mirror really isn’t someone else.  She looked at me and said “I know.”  Her lips said that, but I wasn’t convinced her brain said it.  I was going to cover the mirror with a sheet so she wouldn’t have to see it, but it’s mounted too close to the wall to be able to cover it.  Lisa suggested taping newspaper over it.  That might be the ticket.  I just don’t have any newspapers.  We don’t subscribe to the local rag.   I guess I’ll have to buy a few.  Maybe I won’t have to – we’ll see.

When she told me that she knew the person in the mirror wasn’t real, I asked her to prove it to me by taking a shower.  She did it!  After she came downstairs, all clean and dressed, I asked her “how do you feel?”  Her answer surprised me – “I’m free!”  She said she had been “putting all my stuff into that”, but now that she understands the reflection isn’t exactly “real” she feels unburdened.  I hope that feeling lasts.  I know her brain is giving her a hard time, but I can’t be doing things this intense every day.  If I do, I won’t make it to 60.

The "New Normal"

Since Carol [aka She Who Must Be Obeyed] got her dementia diagnosis, we had to go through quite the period of adjustment to where everything is somewhat stable.  As Bill Rutherford told me, it was going to take a while to figure it out, but we’re finally stabilized into a “new normal”.  What would have been unthinkable a couple of years ago is now a daily thing.  These are just some of things I can think of off the top of my head…

I am her Pez dispenser

She Who Must Be Obeyed doesn’t drive anymore.  She made this decision when she got her cancer diagnosis.  She has since kicked cancer’s ass, but now with her being cognitively- impaired, she decided to stick with the whole “not driving” bit.  Accordingly, I’m the one who goes to the pharmacy.  Since I know what meds she takes and when she’s supposed to take them, I arrange her pill box.  She has taken that one step further.  When she remembers that it’s “pill time”, she brings me her pill box.  I take the pills out and give them to give her.  She’ll ask me “haven’t we done this already today”?  And I tell her “yes, we do this two times every day”.  She nods, takes the pills out of my hand, and takes them.  Sometimes [usually at bedtime, whenever that is] I have to chase her down and dispense her meds to her.  Sometimes my mind will be elsewhere [usually Netflix] and before I know it, she’s already asleep.  I have to wake her and give her the meds.  Luckily for me she’s able to fall back to sleep fairly quickly.  Although my head doesn’t tilt backwards on a hinge, and I don’t have a hole in my throat, I feel like a human Pez dispenser.

Inanimate Objects are Migratory

In this house, things have a tendency to be in a different place than where you last saw them.  It could be a tissue box, a cat litter box, a trashcan, her pill box, the TV remote, my car keys, or even my toothpaste.  Whenever I ask She Who Must Be Obeyed how something gets from one place to another, she doesn’t remember having moved it.  For my own sanity, I concluded that everything in this house has grown legs.  If she isn’t moving things around, that’s the only possible explanation.

The Tree People are Seasonal

The other day I asked She Who Must Be Obeyed if she had seen the “Tree People” lately.  The answer kind of surprised me.  She told me she hadn’t seen them in awhile because there weren’t any leaves in the trees. This solved a mystery for me.  When we visited her sister Lisa in Wisconsin for Thanksgiving, all the leaves were off the trees [they actually have four seasons in Wisconsin, unlike Florida].  I asked her then if she saw the “Tree People”, and she said “no”.  I didn’t ask why, so I left it at that.  But the last time I did ask why, and she told me.  They only go up in the trees when there are lots of leaves on the trees.  Mystery solved!  We have more than one “spring” in Northwest Florida.  Since we don’t have harsh winters here, sometimes when it feels like spring the trees are tricked into growing their leaves.  But when it gets cold here [it does happen sometimes], the trees shed their leaves again.  This happens several times a year.  I expect when the leaves do reappear [and disappear again], so too shall the Tree People.

What Used to Be Bad is now Good

She Who Must Be Obeyed used to really dislike certain things to eat.  I don’t know whether this is due to dementia or that her taste buds got all screwed up by chemo.  Here are just a couple of examples.  Take chunky peanut butter, for instance.  For a long time, I have been safe in the knowledge that I was the only one in a family of four that likes chunky peanut butter.  Everybody else goes for the creamy stuff.  Recently, I discovered that we were going through chunky peanut butter faster than I can eat it.  Then I found out why – she’s been eating my chunky peanut butter!  I asked her why, since in the thirty-five plus years we’ve been together she has gone out of her way to express her disdain for chunky peanut butter.  She just says “I don’t know – I like it now”.  The same can be said for Whataburger and Bundesliga soccer.  She used to think Whataburger burgers tasted like cardboard [silly person].  Now she likes them.  Before she got sick, whenever a Bundesliga match came on the television, she’d flee the room.  Now she watches them with me.  She likes to see the ball being passed all over the field, and she likes that the action never stops, unlike American football where the average play lasts six seconds.  She also likes to make fun [with me] of the players who act like they’ve been shot whenever they receive the slightest injury.  She appreciates the game now.  Maybe it’s just a passing phase…

A Year Later...

It has been little more than a year since Carol was diagnosed with dementia.  At the time, we had no idea about what to do or whom to ask about what could be done to help her.  Luckily I had a medical professional in my corner, Nurse Jackie, who told me Carol needed a head CT immediately if not sooner.  Also luckily, I guessed Grouch Marx’s “secret word” that would get a doctor’s attention to get the ball rolling [in our case, the word was “hallucinations”].  Lastly, I have a work environment [co-workers and my employer] that understands our predicament and unanimously told me “take care of your family first”.  Two of my closest friends/co-workers [Bill and Tom] told me “it’s going to take time, but things will work out”.  So far, they’re right.  Not everyone is so lucky…

The most frustrating part of our experience has been learning how to navigate the twists and turns of medical bureaucracy.  Sometimes I felt like an expression I saw on a T-shirt years ago – “Patience? Hell…I’m going to kill something!”  Of course, that shirt was made in the context of deer hunting rather than me being a homicidal maniac.  One time it was having to fill out the same paperwork many times for different people in the same hospital.  The hospital in question is a Catholic hospital, and one would think that since the Catholic Church has more money than God, they would have enough money to invest in information-sharing technology.  To give them credit, some branches of this hospital are good at sharing information.  For instance, Carol’s neurologist is in Pensacola, 45 miles to the west of us.  The labs where we can get her lab work done for the neurologist done are 30 miles to the east of us, in Sandestin.  Those locations in Sandestin, like the neurology office in Pensacola, can access the patient portal.  But the imaging lab and the blood work lab in the same hospital as the neurology office hospital still rely on paper copies of everything.  Although they are in the same building, they don’t have access to the patient portal.  Go figure…

I got a boost of confidence a couple of months ago from a friend of mine who lives in New Jersey.  He is a psychiatric nurse.  He read my last blog about Carol and her visions of the tree people.  Rather than argue with her about whether or not the tree people exist, I just tell her that although she can see them, I can’t.  And then I ask her questions about them, and she tells me.  I got a message from him telling me that my handling of the “tree people” issue was “textbook”.  I thanked him for the feedback.  It was good to hear from a professional that I was doing something the right way.  Thanks, Ed!

Carol and I went to Wisconsin to see her sister Lisa and her family for Thanksgiving.  It was my first vacation in five years, and it was the first time Carol and I made a trip out of town without our kids – ever.  Lisa had been to see us in June, and we told her we’d do a return visit in November.  I cashed in frequent flyer miles, and it cost us a whopping $22 to fly round-trip.  Lisa practically ordered us to do as little as possible, and we obliged.  Our money was no good in Wisconsin.  Lisa had noticed a marked improvement in Carol’s demeanor since her June visit.  Carol was more “with it”, was engaging in conversation, and was “happy”.  Carol told us she would like to see her parents, so Lisa and I put our heads together and said we’d all meet in Fort Collins [that’s where her folks live] in June 2020.  We missed the last family reunion years ago, so we’ll be making this one.  Wisconsin was good for the soul.  We’ll see about Colorado.

We saw Carol’s neurologist the day after Christmas.  He asked if the medicine he prescribed seemed to be working.  He asked specifically about Quetiapine [Seroquel®].  Having done my homework about each of the meds he prescribed for her, for once I felt smart enough to answer his question.  I told him “if the idea of the Seroquel is to get her to stop seeing the “tree people”, so far it isn’t working.”  He doubled the dosage for that medication.  He shared with us that many neurologists are loathe to prescribe anything to help their patients, and he was incredulous that some doctors are that way.  I think we lucked out when we got this doctor.  Carol has improved a lot with his treatment.  I told him that everything else he prescribed for her seems to be working.  She doesn’t forget who I am anymore [so far, knock on wood…], and she remembers her kids.  She still misplaces things from time to time, but I do that too for that matter.  We haven’t had any major episodes since she misplaced her wallet and I had to replace all the credit cards [we found the wallet, BTW].  The times of sheer panic have gone.  I told the neurologist about Lisa’s observations of her visit in June and our visit in November and the differences between the two.  He seemed pleased enough that we don’t need to see him until after we get back from Colorado.  We were on a three-month revisit cycle, so now we’re down to twice a year. 

For whatever reason, there has been a turnover of doctors at our local medical center.  For the first fifteen years we were here, we each saw the same doctor.  But when his last kid graduated high school, he pulled chalks and moved to Pensacola.  We got another doctor who was from Kazakhstan.  I liked him.  But his wife couldn’t deal with the warm climate here, so he had to move on elsewhere. The internal medicine doctor we saw that got things in motion for us is no longer at our local clinic, much to our sadness.  We really liked her, but other opportunities lured her away.  Last week we had to see a new family practice doctor to do the whole “transfer of care” thing.  She seems like a nice doctor, and time will tell whether she is a good doctor.  This week we hit a snafu.  The “new” [or should say “latest”?] doctor wanted lab work done to aid her evaluation of Carol, her new patient.  So far, so good.  We knew the drill – show up to the front desk, tell them we’re supposed to get lab work done, and tell them that Carol is fasting.  Things didn’t go as we had planned on Tuesday [Dec. 31^st]. 

We showed up at the lab bright and early [neither of us are ‘morning people’]. The lab tech said "there's no lab order for your wife in the system". He hands the paperwork back to me to take to family practice. I told them what the lab tech told me and they said "this should fix it". I got back to the lab, and the lab tech said that the doctor Carol saw yesterday (new doctor to the clinic - old doctor left for "new opportunities") didn't put the order for lab work under her own name, but under the name of the last doctor, whose last day was Christmas Eve. I walked back to family practice, told them what the lab tech told me, and added "I don't have time to keep doing this. We'll be back Thursday!" I dropped Carol off at home, went to work, then I called the clinic, asked for a patient advocate. They don't have one, but the operator put me through to the family practice supervisor. When all I got was a voicemail, I let her know that she's going to be on the receiving end of a very loud and very angry complaint. 

About an hour after I left the phone message, I got the call back.  I thought maybe I’d scared her off with my voicemail, but she braved the Wrath of Tony.  When I explained to her our predicament [Carol’s dementia], she was sympathetic.  As it turns out her mother also has dementia and is confined to a wheelchair, so she knew exactly what my frustrations were.  She looked up Carol’s “order” [or lack thereof] and pinpointed the problem immediately.  I told her “this may come off as crude and rude, but fix your shit!”  Her response was “we’ll be ready for you Thursday morning”.  Today is Thursday, we showed up, and true to her word, they were ready for us.  The lesson – if you don’t speak up for yourself, nobody else will.  Be fearless when confronting bureaucrats.

To be continued…

Another Visit to the Neurologist

Late last month we saw the neurologist in Pensacola so we can go over the blood tests involving the “Tubes From Venus”.  To recap, we wanted to check her glutathione levels and whether they are normal.  Glutathione is an anti-oxidant produced by everybody that helps with memory.  It also helps prevent damage caused by heavy metals.  To cut to the chase, Carol’s glutathione levels came back as “normal”.  Until now, he’s had Carol on two meds [Donepezil and Quetiapine].  After our visit this week, he added a third - Memantine HCL.

The neurologist has her on three meds.  The doctor said for her to take these a bedtime:

Donepezil [aka Aricept®] - Prevents the breakdown of acetylcholine in the brain. Acetylcholine is a compound which occurs throughout the nervous system, in which it functions as a neurotransmitter.  She started at one 5mg pill/day, but has since increased to a 10mg pill/daily. 

Quetiapine [Seroquel®] – Antipsychotic.  This one is primarily used to manage psychosis (including delusions, hallucinations, paranoia or disordered thought).  These are very tiny pills – just a little bigger than a period that you would see on this page.

Memantine HCL [Namenda®] - Blocks the toxic effects associated with excess glutamate and regulates glutamate activation. Glutamate is a powerful excitatory neurotransmitter that is released by nerve cells in the brain. It is responsible for sending signals between nerve cells, and under normal conditions it plays an important role in learning and memory.  The exact dosage escapes me at the moment, but it is such that we have to take a month in order for her to get up to the daily dosage that the doctor wants her on.  For the first week, she took one per day.  We’re in week two, now she’s up to twice daily.  There will be another increase on Saturday.

The neurologist spent some time trying to convince Carol that the “tree people” she sees don’t exist.  I told him that I avoid arguments on that matter by simply telling her that I can’t see them.  I gave up trying to convince her the people aren’t real, so to avoid any arguments or anything that would make her feel bad, I just tell her that I don’t doubt that she sees them, just that I can’t.  I don’t deny their existence, but try to reassure her that as long as they remain outside in their tree kingdom, we’re fine. One time I asked her what they look like.  She told me they look like hippies with different colors of hair.  Luckily we don’t have to deal with the smell of patchouli oil.  Sometimes they sing songs.  I asked if they sang anything I would know, but she told me “no”.  The thing that really annoys her is our new next-door neighbor.  The guy who lives there is pretty cool. He’s quiet and keeps to himself.  He has a dog who really likes Carol, and she likes him.  It’s the guy’s wife who annoys her.  She’s loud, and that’s her only volume.

There is some really good news on the home front.  The adult day care folks I hired worked out very well.  Carol likes them.  She told me that each person who came to sit with her wanted to help with laundry and other housework.  Carol just enjoyed the company and was very glad to have them around, especially after the sun went down.  Those are the times that worry her.  I am supposed to go TDY to Indiana for a week.  Mark has quit his job, pending his return to school in January, so I may not have to utilize the adult day care for this trip.  I’m kind of conflicted here – I don’t want to saddle him with looking after his mother while he’s on a break between work and school, but I’m not sure I want to stick a crowbar in my wallet and fund Home Instead for another week.  But after he returns to school in January, I have another trip [this one to Northern California] for two weeks, and I’ll definitely need them.

There is one thing that startled me the other day.  After Carol finished chemotherapy for breast cancer almost three years ago, I had to put her in the hospital for a week and she has no memory of it.  In March 2017 she did her sixth and final round of chemo [once every three weeks, you can do the math].  Not only did the chemo take all of her hair, it took her fingernails as well [they’ve since grown back].  She called me at work to tell me she was freezing.  This is a normal thing for her since she is the type who would be cold if she was sitting on the surface of the Sun.  This time it was different.  I could hear her shivering on the phone, and she told me she needed me to come home right away.  I hurried home, and we both decided it would be a good thing to pay the ER a visit. 

After spending a few hours at the ER, the doctor on duty decided to admit her.  She had an infection.  “Infection” is not a word you want to hear when your wife has a compromised immune system.  While the hospital staff administered round-the-clock antibiotics, it took them a while to determine the source of her infection.  It turned out that she had cat scratch fever.  Until then, I thought it was just a Ted Nugent song, but it’s a real thing.  She didn’t get scratched by any of the five cats.  She got it through the fingertips that had no fingernails.  After a week, the hospital discharged her, but we had to see an infectious diseases doctor for IV antibiotics for 28 straight days.  Last week I told her all about it, but she told me she doesn’t remember a thing about it.  She remembers going through chemo, and she remembers the radiation therapy she had to endure [33 treatments].  Although her antibiotic regimen overlapped with her radiation therapy, she remembers one but not the other.

Maybe it's just as well she forgot about her hospital stay...

Tubes From Venus

The last time we visited the neurologist in Pensacola, I asked him about Carol getting tested for a glutathione deficiency.  The nurse who visited our house a couple of months ago told us that she has such a deficiency.  Glutathione is a chemical the brain makes that helps us with our memory.  As we get older, the brain makes less of it.  When I told the doctor about it, he was a bit skeptical.  He excused himself for a few minutes.  When he returned, he said he did some quick research.  He said he would authorize such testing, but he cautioned me that it might cost me a "small fortune" since it isn't standard treatment that insurance might not cover.

After a month of trying to convince She Who Must Be Obeyed (and a gentle reminder from the hospital to 'get it done'), we went to get it done last week.  The last time we tried to get something done locally, things didn't work out since our local medical center and the hospital we go to in Pensacola suck at sharing information.  Since we were in the hospital's system, we opted to go the hospital's 'local area' lab (more on that later).  I knew of one such facility that was a little east of Destin.

Last week we ventured to that facility.  We were familiar with it because that's where we found an autoimmune specialist who diagnosed Carol with Sjögren's Syndrome (it's in the neighborhood of lupus).  When we got there, I suspected we weren't where we needed to be.  I was right.  The lady I spoke to told me to go further east where the Sandestin Resort is.  We went there, showed them what I needed and they told us to have a seat.  We were in the right place, or so we thought.  After about 20 minutes, we heard Carol's name and off we went.  The lab tech looked at our paperwork, then started looking for the blood tube she needed.  After searching all over her little cubicle, she told us "we only do the basic tests here. She needs a special tube that we don't have. You'll need to go the Sacred Heart hospital".  My heart sank because I thought she meant the hospital in Pensacola. "No!" she said. "There's a Sacred Heart hospital just two minutes east of here". I started to breathe again. She called the lab at the hospital to tell them to expect us.  We thanked her for her help and set off toward our third destination of the morning.

The lab tech gave us perfect instructions about how to find the lab in the hospital.  Once we got there, an older gentleman volunteered his help, so we took him up on it.  He took us straight to the lab, whereupon we thanked him for his help.  We gave the lady at the window our paperwork and waited.  Luckily the Air Force gave us excellent training on "hurry up and wait". Carol's name was called, and in we went.  One lab tech (I will call her 'Grumpy') was asking us why we were there.  I told her if she wanted an argument then she needed to call the lab tech who sent us there because I wasn't in the mood.  Grumpy searched high and low, and it turned out they didn't have the 'special tubes' either.  She checked another place - no joy.  So, she asked them to order some special tubes.  I asked her if the special tubes came from Venus or something, which gave Grumpy a chuckle.  She said it would take about a week for the Venusian tubes to come in, and she told me to call back in a week

Meanwhile, there was another test to be run.  Another lab tech (I'll call her 'Happy') asked whether we should wait for the Venusian tubes and do all the tests at once.  I told her "as long as we're here, let's do the one you CAN do so today's trip won't be wasted".  While that was being done, there was another lab tech (I'll call her 'Doc') who told us her mother has Alzheimer's and that she and her daughters are "at risk". She said she's too chicken to take the test.  I can't fault her there.  Then I thought back to a previous visit with the neurologist and when he told me there wasn't a test for Alzheimer's.  But I guess there's a different one to see if you're "at risk" rather than one to see if you actually have it.  So Happy did the other test, and Grumpy gave us the number to call in a week.  Off we went…

We had Monday off for Columbus Day.  It was only six days (not a full week) since our visit to Sacred Heart in Sandestin.  The lady who answered told me the Venusian tubes hadn't come in, but could I leave a number where I can be reached.  They would call me.  Sure enough, I got the call on Thursday.  Friday morning, we were off back to Sandestin.  As it turned out, a tropical storm was forming in the Gulf of Mexico and it was heading our way.  We've had many tropical storms and a few hurricanes come through here in the 20 years we've lived here.  Despite the doom and gloom that seems the be the Weather Channel's stock in trade, we tend to brush off tropical storms around here.  We're used to them.  The danger from such storms is that people around here forget how to drive when such storms come through - they're overly cautious.  Adding to the incoming storm is the road construction east of Destin.  Highway 98 is being widened.  The last time there was such construction it took five years to finish the two-year project, but I digress.

We got to the lab without any difficulty.  It's 33.5 miles door-to-door from our house to the hospital.  Then we waited for about an hour and a half.  We saw some interesting things while we waited.  There was a woman dressed in a duck costume who was walking up and down the halls, advertising a local "Duck Regatta".  Then there was a cute little white dog named Duffy who was being wheeled around the hospital.  He's got all the right badges for going around the hospital to visit patients.  Such a friendly dog…

After a while Carol's name was called.  Happy was there, as was Doc.  It must have been Grumpy's day off.  Happy remarked "we have some special tubes for you".  I remarked "yeah, we think you had to order them from Venus".  That made her and Doc giggle.  Doc said something about not remembering things.  I told her my affliction is called 'CRS'.  She looked at me quizzically, and I told her it means "Can't Remember Shit".  She grinned and gave me a thumbs up.  While I was waiting, I noticed Doc had some tattoos on her arms.  I asked about them - on one shoulder is Rosie the Riveter; on the other is Wonder Woman. Once Happy was done draining Carol of her blood, she took out the package of the 'tubes from Venus' and said "if you ever need another test like this done, we're ready for you."

And now we wait.  The next visit to the neurologist is October 29th.  Stay tuned.

An Update...

Nothing too dramatic has happened since the last time I wrote something.  She Who Must Be Obeyed has her good days and her bad days, but mostly they are good these days.  I have a few random thoughts that I figured I would share today.

When she misplaces her purse, I’ve gotten better about “where to look first”.  She has three places where she misplaces it – either in her own closet, in one drawer of our chest of drawers, or between the mattress and the box spring of our bed.  If I can’t find it in any of those three places, then I resort to using the Tile GPS finder-thingy.  Having the Tile device, and knowing where her “hiding spots” are, has been a great stress reducer.  It’s unfair for me to say “hiding spot” because that implies intent, but I don’t have a better phrase at the moment.  Every now and then she will have a new spot, like in the garage.  Why the garage?  Our washer and dryer are out there.  Since she likes to have her purse with her, sometimes she puts it down while she’s out there and then forgets to pick it up and take it back in the house.  Luckily for us, the purse and everything in it hasn’t disappeared outside the house – not even in the car.  She misplaced her keys the other day, or so she thought.  As it turns out, they were attached to one of her belt loops.  I had an extra set made anyway, and I bought another Tile for the key ring.  We’ll need the extra set soon, anyway.

Why do we need the extra set of keys?  Because I think I finally found someone to look after Carol if I should have to go out of town.  This is important for us because she still sees and hears things the rest of us don’t see/hear.  This makes her somewhat afraid for her safety, so I started to look for an adult caregiver.  The social worker that paid us a visit gave me a list of places to choose from.  Almost all of those choices were in either Pensacola [45 miles away] or Panama City [66 miles away], which doesn’t do us any good.  But there was one company that is local, and they are part of a nationwide, certified adult caregiver.  Here are some of the services we’re looking for:

Offer Companionship & Conversation Provide Respite Care

Monitor Diet & Eating

Check Food Expirations

Assist with Evening & Tuck-In

Provide Medication Reminders

Aid with Reading

Stimulate Mental Awareness

Assist with Entertaining

Answer the Door

Reminisce about the Past

Play Games & Cards

Monitor TV Usage

There are more services that these folks offer, but seeing these items on their list makes me breathe a little easier.  That is the good news.  The bad news is that I have to pay them out of pocket.  Our insurance doesn’t cover it, which I expected.  The price?  Twenty-one dollars/hour for a minimum of six hours in any given day.  The boys and I are going to have a talk about staying home to look after their mother on their days off from work when I’m away.

When the social worker visited us, she told us how to get a durable power of attorney.  At first I thought I was going to have to deal with a lawyer to do this, band pay the money that goes with the service.  As long as Carol is still lucid, I don’t have to deal with a lawyer.  The social worker told me that all I need was the durable power of attorney form, that she needs to sign it in the presence of a notary, and that we have two witnesses.  I asked her if my sons could be the witnesses, to which she responded ‘yes’.  Now I have the durable power of attorney.  I’ll scan it as a pdf document so I’ll have it with me wherever I go.  I’ll probably file it at the courthouse as a “just in case” thing should something catastrophic [like a hurricane or fire] happen to us.

What have I learned so far?

1.      Patience – this is still a work-in-progress.  This is a big one since I’m impatient by nature, but I’m learning.  Sometimes Carol will be telling me something, and I haven’t the first clue what she is talking about.  When that happens, I’ll telling her I’m having difficulty following her and I’ll ask her questions about what she means.  Sometimes she can’t find the right word [that’s why we had the speech pathologist], but eventually we get there.

2.      Don’t argue – Carol will occasionally tell me about the “tree people”.  Instead of telling her that they aren’t there, I just tell her that I can’t see them.  That way I take that off of her and put it on me.  I ask her if the people try coming into the house, and so far the answer is “no”.  She’ll be getting new glasses soon, and maybe “tree people” sightings will decrease when she gets the new glasses.  However, sometimes she’ll tell me about something she thinks she heard from them.  I’ll ask her what they said, and try to reassure her they don’t mean her any harm.

3.      Don’t mess with the routine – Carol doesn’t react well to sudden changes to anything.  We were already somewhat used to this because our oldest son Greg has Asperger’s Syndrome [high-functioning autism].

4.      Get out of the house – Carol sometimes feels like a prisoner in her own home, especially now that she doesn’t drive.  Whenever I have to go somewhere, whether it being grocery shopping or getting food for take-out, I take her with me.  She likes to get out of the house.

5.      I “stress eat” – this is another work-in-progress.  This one needs a LOT of work.

6.      I need to pick up the guitar again – even if it’s only for 30 minutes a day, I need to get back to this for my own sanity.

7.      Don’t be afraid to ask for help – the folks at work have been very understanding about our predicament.

8.      She’s not giving me a hard time – on the contrary, she’s the one having the hard time.  There is a difference, and it’s not her fault.

When my sister-in-law Lisa was here in June, she told me that Facebook’s chat feature has a video chat capability.  We checked it out briefly while she was here.  We finally put it to use over the weekend.  It did us all some good.  Lisa told me that Carol sounded and looked better than she did when she visited us.  It was good to hear that feedback since I’m too close to notice the changes.  I texted my father-in-law today about this good use for Facebook. He replied Lisa had told him about it, so sometime in the near future we will have a video chat.  I hope these chats become a regular thing.  Carol hasn’t seen her folks in a few years, and none of us are getting any younger.

Carol’s next visit with the neurologist is October 29^th.  After that the next big event is a trip, just the two of us, in November.  We’re going to get out of Florida for a week and visit Lisa and her family in Wisconsin the week of Thanksgiving.  I cashed in some Delta miles and the trip will cost me a whopping $22 dollars to get there and back.  November can’t come soon enough.