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.