Back to the R.C.M. P. as Promised!

Never Thought Crying Could Put Someone Behind Bars!!

Late one afternoon I discovered (had been told, I'm told, but I forgot supposedly) my daughter was heading away for a visit with her sister. She'd be gone a number of days.

I'd been asked to oversee the younger generation left at home, but I became upset realizing I was to arrive to my role, AFTER my daughter had already left. All was well at her home. One of her older sons was watching the flock until I was to take over the following day.

I texted my daughter (while she and her husband were enroute) in a sense of anxiety and emotion about their leaving without including me. It quickly became obvious to her that I wasn't under good emotional control and she couldn't reason with me. She volunteered to call me when they stopped for Gas, but I said not to. The texting stopped and I began to cry.

Without my awareness and after we'd stopped communicating, she called to tell her older son that I wasn't capable of caring for the stay-at-homes.

All my things were packed, the following morning. My unhappiness was still present but my crying was under management. Then the bottom fell out of my boat.  My grandson didn't arrive for me. I called him.

He let me know things had changed and I wasn't needed after all.

To say my unhappiness slithered into full, blown tears would be an understatement. The crying began, and did not cease. I was crying when I called my other daughter to see if the first daughter had arrived safely. No one responded to my call. The crying continued.

I could add more drama, for drama lovers, but today is not the day... I'm certain when my daughters read this, they will see I've not reported events entirely or correctly... but that's okay. I've got Lewy Body Dementia and among my varied symptoms are... "paranoia, delusions, anxiety, etc."

This is how MY brain processed events... I kept crying, and crying...

Somewhere along the continuum of tears, I do recall my granddaughter telling me all was well and they'd arrived safely. Everyone was having fun.


You'd think that might have shut down my tears, but it did not. After 18 or so hours of crying, and trying to determine what I ought to do to shut off the tap, I remembered there was a Nurses Hot Line in our province and I made a call asking for any suggestions or recommendations.

The first nurse and I spoke for a while, then she said (because I was still crying), she'd have the Dementia Nurse call me.

I don't know how much later that call came, but I cried through that conversation as well,  She told me I needed to go to an Emergency Centre and see a physician. I promised her I would do so in the morning when I could call for a Handibus (I reside in a very small town) which could take me to a close by larger centre. She asked me if she could trust me. I told her yes, and we parted ways, with my ongoing crying.

Laying on my bed sobbing, I heard a knock a short time later and two Lodge staff members and two R.C.M.P. officers walked into my room. To say I was stunned would be an understatement, but it didn't stop the crying.

One officer mentioned something about the 811 nurse being concerned about me. I tearfully repeated the promise I had made to the 811 nurse. The officers indicated they were going to take me to the ER. Amid my tears, I knew there was no point in making a fuss... besides, one of the two staffers looked annoyed and the other looked bewildered. For anyone who has seen the movie the Green Mile, I walked behind the officers, still crying, all the way down our green carpeted hallway and was escorted to a truck. One officer went to his car and disappeared. The other officer opened the door for me - Oh I should mention he offered me a front seat ride, but I couldn't stop crying so I opted for the privacy of the back seat, with no awareness of bars, lack of door handles, etc.

I continued to sob quietly all the way to the ER, while stacking up wet tissues, one upon another.

Having a history of ER visits with children, foster children, etc. I know the layout. There are beds with curtains all in a row, but there is always a room with a door. If you guessed,  that is where I was seated crying, you'd be correct! Everyone else has a curtain pulled around them if desired,

Not Geri!!!

Geri was the CRYING PSYCHO FELON in full view of the nurses station and anyone happening to go past, toward one of the curtained beds. Even then I couldn't quit crying. 

Then, adding to the worst event of my life MY LUCK would have it... I was cared for by a physician on call, WHOM I KNEW FROM MY PRE-RETIREMENT (working with 40 physicians) DAYS. He entered the room. I kept crying and began apologizing. I was sorry to be a bother, sorry I was crying, sorry to be creating work for him, sorry I couldn't stop crying, ... probably more but that's sufficient.

I'm famous for apologizing. Ask anyone who knows or who has worked with me over the years.

My tombstone, or URN will host a plaque... 

"Geri is sorry she has inconvenienced everyone 

by having died!"

Later, with a prescription in hand, I was grateful someone had found me a Handibus ride back to the Lodge. I hid out in my room until the crying stopped (about 36 hours in total).

I should admit my first meal with the residents was "show stopping" as well... Some residents had actually witnessed my being carted off by the R.C.M.P. They wondered what I had done to rate two vehicles service.

Don't worry, I was able to laugh it off.

Experienced Humiliation is a talent I've acquired over 70 years...

I've laughed off lots of events in my life, but this one deserves a blog spot. 

Talk with you again soon.... I haven't determined what our conversational topic might be, but inspiration will hit eventually.

R.C.M.P. Adventure ... Part #1

QUICK QUESTION... Am I Alone???

In my first post I introduced myself and my current symptoms. Today I'd like to share one symptom that leaves me swinging from branches in the Lewy Body Dementia (LBD) Tree of Life.
After reading this and the posting that will follow, I'd really like feedback from others as to their experiences with my new symptom.

Trying to reach you ...

I've tried, and my grandson has tried to post my first blog report in the past few days. I selected a design page, modified its composition and colors, saved it and went to write the first post, added images, used colors for display and text and felt successful until I discovered THERE IS NOT NECESSARILY CORRESPONDENCE BETWEEN THE RULES AND THE RESULTS (perhaps only for me and my expert "techie" grandson Matt - a young adult).

First my design did not combine with my post. Rather, my post was placed (by this system) onto a generic display option originally selected in PREVIEW mode. But thinking I had somehow misplaced my design (after all I suffer from LBD), I left it for a few days and came back to it all when I felt  my thinking was clearer.

I won't bore you with the additional details, but when Matt put his expert mind and hands into my blog world, he too found actions he took, did NOT produce the expected results. He kept at it for about an hour and eventually all came together and he checked my laptop and HIS phone and could clearly see what I'd created and written appeared online. He said it looked "professional". It still refuses to show up on my laptop, but does on my phone. I was glad for his approval. Years ago I actually designed nonprofit websites, so I had thought this blog would be a piece of cake.

The laugh's on me! 

Next morning I went online to look at my site and to begin to share it with the world.

The correct display was present, but not a word nor an image from my written post.

I'll keep trying. I'm a determined woman! When a posting miracle happens, the world will know I've succeeded.

NOW... Back to the Intent of This Second Posting.

My most disturbing symptom of late has been emotional control. Please don't imagine I'm shouting at people as yet, nor having temper fits. No, those I've learned to bury deep inside while I was married and raising all those children.

My emotional surprise has been CRYING!                                                     

#1 CRYING JAG
My first "irrational, out of control, and disproportionate emotions to the situation" (my RN daughter stated during the event) outburst took place as I began my gardening one morning (I think it was morning). The day previous I had found such joy in a tall, lonely asparagus rising bravely from the soil. I'd planted it a year earlier. But, according to my "new" garden plot plan, asparagus was coming up (yes, a surprise) in a spot that was now too close to my makeshift greenhouse to be safe from accidental tramples.

I had taken the roots of the asparagus, potted them for protection until I had another plot spot for them. I carefully placed the pot in what I believed was a safe location, because the roots were my brave babies and so precious.

The morning of my cloud burst of tears (I'm not exaggerating), I discovered the "nursery/incubator" pot was tipped over and the roots were gone! My imagination conjured up my young granddaughters as culprits, but my daughter, responding to my overwhelming crying, insisted it wasn't the girls. Moments later it became apparent the family dog, Butter Cup, was the probable hungry intruder. 

NO, solving the crime did not end the tears. I was moving about the backyard, crying and crying without any feeling I could cease. My adult granddaughter joined her mother and they stayed a distance from me (perhaps I had done something????). They tried reasoning with me. But to my recollection I was irrational!!!

I'm not stating these facts to be rude, unkind, or fault-finding. When "Geri's" true mind returned, she too knew something was not "right" with her tearful outburst. But it truly is ALL I can remember. I don't recall how the crying  ended, how long it lasted or any other details.

#2 CRYING JAG
After going through an incredible volume of tears in the rapid, unplanned (on my part) departure from my RN daughter's home, I,  5 or 6 days later (after living in motels) knew I should seek accommodation. I sought out possibilities (limited in a very small  town) and after a visit to a new doctor, it was recommended I try a senior's facility. 


I've since been told my daughters believed they should avoid participating with my long term accommodation planning. They wanted me to be independent and to be in control of my situation.

I drove myself between communities, to medical appointments, found the right forms and had the physician sign them, met with staff at the senior's facility to ascertain if the facility would be an appropriate placement (based upon all the LBD symptoms cited by the physician and which I offered in the first post) and the following day I moved in. The crying during this transition was more than I can truly recall. I know it went on for days.

#3 CRYING JAG
Crying was intermittent after situating in the facility, but this next incident, even to  me, was "crazy". 
One evening, weeks later, I was going to miss the last meal of the day. We are supposed to let kitchen staff know and I did. I could see the evening menu included BACON. It was written on the white board with other menu items. BACON is so, so, so seldom offered here because it's unhealthy for us, according to the government dietitian ??? in this final season of our lives???

I asked one of the lovely staff members to save my bacon for another meal (thinking breakfast). So when we were being served breakfast, I asked for the cold, refrigerated, plastic wrapped, saved bacon from the evening before. The server quickly let me know I could NOT ASK FOR BACON. She said, if I did so, others would do so and it wasn't on the menu. 

I burst into tears, at the table with five "almost" strangers, and walked like a crying piggy to my room.

The server was at some point given the facts by people at the table, and a short time later she showed up at my room, bacon in hand with an accusation about the shortfall of the staff member from the previous night. She tried to make herself out as the victim and restated bacon isn't good for us, and shoved the bacon into my hands, and left.

It only upset me more after she stated she'd never made anyone cry in her 23 years of working with the facility (found out later that was NOT TRUE) added to the "bacon is not good for us".

Something inside me (still crying), a short time thereafter, wanted to make a statement to our facility manager. I arrived at her door, still crying, bacon in hand! I dumped the bacon on her desk, stating, "if it's not good for us, then here have it back". I recall her reassuring voice trying to explain to me about the government dietitian, and attempting to make sense about some government third person actually making a good decision for any of us.

I do recall stating harshly that if keeping us healthy means depriving us of things we intermittently enjoy eating, because it might kill us, that supposed discretion was both nonsense and irrational. People in this facility range in age (save one person) from 80 yrs to 97 yrs of age. We've been making eating/dietary decisions for decades while still enjoying food (when we could afford what might give us joy) without any dietitian keeping us healthy. My senses tell me there might be some facility cost  considerations in dietary decision making. I'm confident saying this because I've never seen so much processed food on my plate, ever! 

The bacon crying jag lasted about 4 to 5 hours ... it was exhausting.


Part #2 of the R.C.M.P. Adventure ... will detail how CRYING can find you in the back seat of a police vehicle (behind the bars). Please tune in for post #3. 

RCMP

In the Beginning...

The first beginning... Very, Very Busy!!!!

It is difficult to know where to begin with this FIRST post. BUT, I'll muddle through. Strikes me that I should state why I'm writing this blog.

To say I have Lewy Body Dementia (LBD) is an understatement, but to also say how few people know what it is, and "HEAR" what is happening to me, including my physician, is a frustration. I believe that I have an obligation to speak to as many people as possible to spread information about the second most frequent dementia (Alzheimer being the first) in North America. I invite each of you to follow me for at least one or two postings (if I don't fail to fulfill this commitment) so you can be my voice in days, weeks and perhaps years to come. I'm about half way through this adventure, that I'm told lasts 5-8 years. I'll come to a point along the future way that I won't have the capacity to keep writing, but I don't want people to learn about LBD from "caregivers", professionals, foundations/institutions, etc. The presumptions, perspectives, thoughts, hopes and voice of anyone outside the LBD person will always be second hand. "Go to the source!... Follow the buck (even if the buck stops here), was my journalistic approach. It never failed!

So here we go!

My name is Geri. I've been married twice. All my six children are mine and are siblings within my first marriage.

This is Geri/Me today. 
I laugh easily, love people,
and truly love my children ...
and their children ...
and THEIR children.
Should mention I LOVE to swim, in lakes, oceans and sometimes pools.

I've been the breadwinner for my family for almost all of my seasons of life and marriages (29 yrs first married at 18 yrs of age, he was 25... ; 10 yrs second ... someone from my youth, ... yes I didn't seem to grow up after one marriage) and for the final 15 years. Both partners have died. The first after my divorcing him (he lived about 1.5 yrs).

FOR A LAUGH!

The morning after my divorce was final,

the phone rang and the father of my

children said... "OK you got your divorce,

now when are you coming home?"

SHOULD STATE...

He had the home, the furnishings, the dishes,

the keepsakes, etc.

I left it all because it seemed right!

The second husband died after I separated from him, helped pay his bills, brought him goodies, etc. I'm not a runner, but I seem to have a problem finding companionship that does not include abuse of one kind or another. I loved each, but each taught me love doesn't mean daily pain. So much for that portion of my historical introduction.

SECOND LAUGH...

When I visited #2 in hospital, before he passed,

staff curiosity brought forth the question...

"Who are you?"

"I'm his wife."

"No, that can't be right. We've been

receiving phone calls from his girlfriends,

checking on him. Other women have called as well.

Everyone said he is NOT MARRIED!" 

Should I have laughed or cried???

My breadwinner careers have included but not been limited to: managing a Calgary Airport Car Rental kisosk,  journalism, advertising, marketing, nonprofit executive positions, teaching grades 1 - 3 on a Hutterite Colony, Fundraising for a regional hospital, Regional Fundraising for 12 hospitals and auxillary hospitals, (yes they were two entirely different positions), Foster Care (26 special needs foster children over 30+ yrs) while also working at some of the positions cited above. PLUS, always working with my church within children's or women's groups.


Still Very Busy,  But Transitioning!!!

Retirement at 66 (four years ago) has not been exactly what I'd planned. I did have my retirement set up with a lovely tax free income caring for disabled adults. My experience in that realm came from within my parenting background... (One of my own children is now 47 yrs, is intellectually impaired, and he's living with his sister) - but that's another story!!!

When the spirit suddenly moved me to leave my wonderfully, well lined retirement nest, to become helpful to some of my children who found themselves with impaired children, I dumped my retirement plans, literally. Gave away all the household trappings, threw my vacuum into the dumpster after final cleaning of my 3 bedroom apartment, and hit the road for my first "visit"...

It meant living portions of the year in households which were not my own. It meant trying to learn not to infringe on the lives/family dynamics of my children and THEIRS. I wasn't very good at that at some moments/hours/days/weeks, but I've improved (I hope!!!). I've come to admit I can be obsessive compulsive. I'm truly working on greater "silence is golden" methodology. And until it was brought to my attention my health was not OK, I imagined I'd keep driving grandchildren to school, planting potatoes, mowing lawns, pruning hedges, maintaining vegetable gardens, doing laundry, tidying and picking up toys, cleaning, caring for my son and intermittently making or purchasing meals to convenience households, while always helping them establish impressive food storage - in lieu of rent, or giving funds when needed.

My "grandmaternal" image began to change before I retired, but  I was capable of camouflage. I kept saying to myself, "I'm tired"...  and I really believed nothing was wrong.
But sharing my life with my disabled son and families evidenced...
- driving, but intermittently not able to ascertain where I was in the city...
- more exhausted...
- forgetful...
- grouchy...
- impatient...
- saying what I thought at times when I should have been quiet or politically correct...
- feeling disorganized for the first time in my OCD life (hoping nobody else noticed)...
AND MORE.

It wasn't until I was again living with one of my daughters (a nurse with 30+ years experience with hospice care, floor nursing, surgery, and some mental health training) that she spoke with me to tell me she could see my unaddressed health issues had been growing. She was assertive, but realistic and listed some of the following:
 - sleeping 2-4 hrs most afternoons and at times awakening to no recollection of what time of day or even day of the week it was...
 - quickly changing from a woman who wore high heels from her teens through her adult career (skirts or pants) to being unstable on my feet while feeling dizzy, then shifting to flats...
 - suffering hallucinations (driving into a turning lane for opposing traffic)...
 - forgetting activities or completed tasks OR forgetting to complete tasks (lots of forgetting)...

 - crying at first for hours and within months for days until I was medicated for it...
 - shuffling slowly like a duck when I walked ...
 - unable to turn without mini steps ...
 - trips and falls (forward and backward)






 - neuropathetic pain, lots of pain ...

The list goes on, (drooling, difficulty swallowing, muscle stiffness and weakness, blood pressure fluctuations, weak voice, visual distance, spatial and depth awareness problems, even more hallucinations)  but I've probably already given sufficient details.

Perhaps its another transition which has brought me, to begin this blog??? (WHILE I CAN.)

If all goes well, I'll write you again next week.