Showing posts with label Lewey Bodies Dementia. Show all posts
Showing posts with label Lewey Bodies Dementia. Show all posts

Friday, October 14, 2016


Again this is so critical to me in such a very personal way. If you and a loved one has been diagnosed, or shows "signs or symptoms" of this extremely rapidly degenerating type of Dementia, you can screen for a Clinical Trial sponsored by Cure Click. I watched it take my Mom within 6 months. She had "some signs" of dementia, forgetfulness, and several others about a year or two before. Yet, none that led to a real diagnosis, then this horrid disease seemed to "take over" suddenly, and I literally watched her "change" day by day, as I've told the story so many times. This is NOT your "typical dementia or even Alzheimer's) not that they are not awful, yet Lewy bodies as a whole different type of dementia, aggressive in nature... and honestly, they still lack a great deal of the "why's" of this particular one.... Please share this with others. I would so appreciate you giving out this to others that may have someone they have seen in this type of rapid declining of mental, physical, and emotional realms so suddenly.

Been told you or a loved one have #LewyBody #Dementia? Participate in a clinical trial! See if you qualify. 

Wednesday, October 5, 2016

Surviving - Being a Caretaker even after the person passes away, dealing and coping with loss & still "feeling" someone still having a hold on you from the "grave" - Decisions when you are chronically ill, in pain & trying to make everyone "happy"

I've been trying to "get over" what all has been left behind for me to deal with since June 9th, 2016 - Actually more like the start from about 9 or so years ago, when I came back to TX, to help my Mom.

Most of you that follow me, know I was an only child, my Dad passed away in 2005, and by December 2005, I moved back here from Seattle, to help my Mom. I've talked about due to Dad's upbringing in the "Depression" back in the 20's and 30's Dad's "way" of handling life was much different than those who were younger. Not that he had "bad ideas" but there were many things he could never accept, that were just a part of life, as it evolved and changed.

We each know life does not remain standing still. Each day, there is something new, whether it be something horrible like the "wars" overseas, and innocent lives, even children suffering for no reason but greed from others who want to "rule" over people,

There are also many good things that almost change daily, from cell phones, to technology, jobs, the way our country is ran, and all types of good things that can change within a breath's space.

My life, as well as many of yours have changed, evolved, grown, fallen, gotten up, and tried to march on, even through the pain and suffering, the embarrassmentand the good, bad and indifferent of this world.

Speaking of, our nation and world are in such a torment, chaos and it's hard to fathom other humans can do some of the things they do to those like them, humans. Each day the news seems to worsen over not just all of the overseas fighting, hatred, war, and such, but right here in our nation, each evening, I watch almost in horror of what act of violence has happened that day.

I was left to "take care of" all of Mom's affairs, of course Executrix of her Will/Estate, as you can call it.

Mom had made some really "bad" choices when she was alive. She did some things that as much as I had tried to help, explain, and give her insight along with her financial advisor at the time, to get her to understand, some of what she was trying to choose, could cause family issues someday after she was no longer here.

I never "told" her what to do or not do, but helped her, by explaining why I felt one way or the other, as well as her advisor also helped to guide her into not causing family grief, anymore than we would already have after she had passed away.

I had been here over 10 years, and for most of that time, I helped her with just about  everything, from bills, to putting gas in her car, to helping her and doing her taxes, explaining things she did not understand, you name it, I did it... I am an only child, and I felt it was my responsibility to help her in ALL ways, that I possibly could. I can hope that I did for the most part a decent job at it.

Although a couple of things fell through the cracks, and as I said years ago, NOW, we have a family "uproar".... that although one member "seems" to not be hurt by what has taken place I feel badly that it has, and even more upset that the other 3rd party is NOT helping, and is acting like a damned toddler, rather than a grown up adult.

I am going to go ahead and publish this although it is not finished... I will finish it and post the rest very soon...

Saturday, August 20, 2016


Amanda looked like a tiny baby doll when she was born. She was only 1 and a half inches long, and weighed a tad over 7 pounds. I wanted a girl so badly, and from the moment I knew I was expecting her, I KNEW she was a girl.

My son, who was 5 years before her, was just a little blonde (cotton headed) as they used t say, and small too. He started Kindergarten like only a week after Amanda's was born. It was amazing to have one beginning school and a brand new one at home! I've always been thrilled they were 5 years apart in so many ways. Amanda and Jason remain close and have as always. He was always the "big brother" who could watch over her, and they later in high school knew a lot of the same people, so when Jason and her left to go out on a weekend night, I knew he would watch over her.

Yet, it seems like just yesterday they induced labor with her.  I didn't have the certain "hormone" to cause me to go into labor with either of them, so they had to induce with Jason, and they just planned on it with Amanda. Now this was BEFORE the sonograms, and knowing what the baby was before it was born etc. Sonograms were only done then if they suspect problems, so with a "normal pregnancy" that was just not something they did.

My best friend from High School Carrie and I were expecting within 2 weeks of one another. They told me Amanda would be somewhere around the very last of August, and Carrie's little girl RaeAnn was supposed to be like 2 weeks BEFORE Amanda... but alas Amanda made her entrance into the world a bit early on August 18th, and much to our surprise Carrie's pregnancy went over by two weeks and RaeAnn was born right after Amanda by about 10 days or so. I can recall Carrie being frustrated that hers didn't come as expected and I had Amanda a bit early. Carrier ate enough Mexican Food to feed Ennis back then!!!!LOL!!!!!! She would eat anything Mexican 3 meals a day, every day of the year..... and I really did not have many "real cravings' BUT I could NOT STAND the smell of bacon frying or Joy Lemon Dish Soap, both made me sick to my stomach and even after I had Amanda, for a year or so, I could not stand the smell of bacon frying... and I NEVER got over the Joy dish soap.. I hate that smell even today after 31 years!!!!

I wanted to share that with all of you, and let you know I am still painting on "house #2" trying to get over there daily and paint. I have decided to "try" and move in over there in October... but that probably means me having to hire some people to help me finish up the paint, putting the fence up,  & of course the "list" can be endless...mainly finishing the inside painting and getting the floors in "decent shape" which does mean also I have to have new linoleum or something like that laid in the kitchen dining room, small bath and right at the front door entrance.

Right now there is an "industrial type" of carpet in the kitchen and dining rooms that is of course glued down, so trying to save the dining room would be a mess. The kitchen already had linoleum under it at one time, and the bathroom is tiny but I also "may" have to have some plumbing work done in the bathroom. The pipes coming into the bath through the wall to the commode are "rusty" and already leak a tiny bit. I know that even that floor at one time had been wet enough that Dad had to have it enforced when they put in a new commode years and years ago. So, I figure with what water damage might have been there and then when Mom threw a washcloth down the toliet (after she got so "bad" with the dementia) and I had to call a plumber I tried at 1st to unstop it, not knowing it was a cloth in there, but she over ran it twice at least until I finally locked it down enough she could not open that door. By then she could not even walk to the toliet and had a potty chair by the bed, but it also done damage to the hardwood flooring in the hallway by the bathroom... I am going to just do the best with it because I will have a carpet runner to go into that hallway, so it won't be that noticeable anyway... but I also think that old sink needs to go and be replumbed, plus if it CAN BE DONE, I would like to break up that old iron tub (which so many houses built around the early 50's had those iron tubs, with the porcelain over them... so that tub has lost about all of the porcelain, plus I want a shower only, that I could just step into, and have one seat in it... BUT, to break up that old tub with that small bathroom is a freaking chore!!! We did it in this house, and put my "big honkin tub/sauna/shower" in it... and I still love it, BUT hell I use the shower, and nothing else really...

I cannot sit down into the tub really or a may never be able to get out, and with it just being me now, it is really way too large for now how it is used... it really is a shame, because one of my reasons, was to use the whirlpool, sauna etc... for my joints and muscles... but by the time I have had all of the surgeries, the strength it would take me to sit down in it, then try and get back up, well I would fear being here alone, and not able to get out.... I still love that huge shower, tub BUT ALSO, IT is insane to clean... I keep it mostly clean since it is just me now, and I spray it down with the Daily Shower Cleaner, which keeps it dry, and it keeps me from having to scrub the heck out of it so often BUT, it still has to be cleaned, and it's a job....

I have to literally get into it, to be able to clean it properly, then keeping the mold and mildew out of it, I keep diluted bleach that I put around the places because certain spots if they stay wet will get to be a mess to clean.... so it takes work to keep it clean and free from lots of germs and so forth....LOL My DOGS probably enjoy bathing in it more than I do..I can put them in there, they have plenty of room, and I have my shower nozzle that I use so they kind of get a massage, then I can have them almost dryed off completely before letting them out... so that way they don't slip on the hardwood floors when they get out... they used to chase each other after a shower, and one time Tazzy accidentally fell going around a corner, because her feet were still wet and she had a hip that hurt her for weeks... so I have to dry their feet before I let them out of the bathroom...


 I should KNOW BETTER!!! I NEED to have my pain pump upped, but I also need to see my Rheumatologist... neither know (well my pain doctor found out yesterday) that Mom has passed away, and that NO I am NOT OKAY, BUT I'VE NOT HAD THE TIME NOR STAMINA TO DRIVE TO DALLAS FOR DOCTORS APPTS~~!!!! While Mom was so sick half the time I "forgot" my 3 boluses a day for my pain pump SO it still has more medication in it than it would have had I been using it as I usually do.... but AFTER WATCHING THE PAIN MY MOM WAS IN.... I kind of WENT NUMB WITH MY OWN PAIN I GUESS... even when I SPRAINED BOTH ANKLES THAT SUNDAY OF HER VISITATION, I REALLY DID NOT "FEEL" THE PAIN.... but I WAS IN SUCH A SURREAL, AND SHOCKING SPOT, I JUST FELT NOTHING... MY PAIN, EVEN THOUGH I HURT LIKE HELL, SEEMED NON IMPORTANT.... Thus my reasoning for putting off my own Pain issues....

I AM BEGINNING AGAIN NOW TO KNOW I NEED SURGERY ON MY NECK, I NEED MY PAIN PUMP UPPED, AND WE NEED TO CHANGE MY RA MEDICATION OR DO SOMETHING BUT I just do NOT have the STRENGTH NOR WHAT I FEEL THE TIME... to spend on those things... like a couple of weeks ago, my Chiweenie, Bubs, broke a front nail on a front paw off below the quick... well it was MY FAULT... I always DREAD TAKING HIM TO THE VET... he usually puts up a fight, and we have had to muzzle him one time before... so I HATE HAVING TO DO THAT... so his nails get longer than most women's before I take him... and again they were way too long, and then he limped around for over a week because of one broken so far down into below the quick.... I finally took him in, and the last two times I've held him, and let the assistant just talk to him, while the Vet cut his nails, and we didn't have to muzzle him and in fact he did great.... so I was grateful and am going to try and keep it up and get them cut before they get TOO LONG!!!!


YET, as I typed in my Title, we cannot just sit down, and take a "time out" for many reasons... it is up to ME, for things to get done... whether I DO IT MYSELF or I HIRE SOMEONE... somehow all of what needs to be done, are things that have to be done, no matter the illnesses, pain and so forth....

One of the guys that was two years older than me died this past week! He was only 58 years old! By just looking at Sammy, no one would have ever suspected he had any health issues... I'm not sure exactly what happened, but my feeling is that maybe he had some type of cancer....


Tuesday, July 5, 2016

Donating Your Organs for Research, Burial or Cremation, Chronic Illness, how life has so many turns, & trying to cope with Lupus, RA, Chronic Illnesses, and living..,

I've had something on my mind, especially after going through what I watched my Mom go through, along with knowing my own health issues, my Grandparents health problems, and family backgrounds. Since I am already an "avid" advocate as far as Lupus, RA, and other Autoimmune Illnesses, as well as Arthritis and now Dementia's.... I've had something on my mind. For some, this may "gross" you out, but for me (and this is after a bit of thought), I feel like when my "time comes" I maybe able to make one more extremely beneficial act, that could help others in the future, even my own family down the line someday. I've been giving serious thought to "donating my tissue and/or organs" for research. Knowing the chronic diseases that I have, and that effect my own family, and seeing that "dementia's" tend to also run in my family, especially my Mom's side, I feel like that is a way, that I maybe able to help stop, find a cure, or give hope to the millions of others out there that suffer from these horrendous illnesses. This is a subject, that I am sure many people don't want to think about... but once you have had someone so close to you and you watch them go through some of these horrid illnesses, you have a deeper sense that you "need to do something" for your kids, Grandkids, and so forth on down the line, along with so many others that need to also find a reason why many of us suffer from them, along with how to "stop" these before they even happen, or "cure" them, put them into remission, or find some way to change what so far we still are fighting with. I also think after seeing the expense of a funeral, and fortunately my parents already had their things in order for that part of it, but the expense of a burial plot, and then the casket and so forth, I can see me doing a cremation, rather than going through the motions and expense of the things that go along with being buried. Now, I am NOT trying to gross anyone out, nor am I (hopefully) upsetting my own family with these thoughts... for they are just that.... 

things I've had time now to think about, and do some research on... and if I could help to make this world a better place in some way, then I feel I should do, just that. I also see that there is such a "guilt" at times, and a burden, even with funeral arrangements... I know that many go through thinking, well I cannot be "cheap" and not have a beautiful casket, or a huge amount of flowers, or have a very nice memorial service... yet when it comes down to it, the person, such as anyone close to you, does not care, more than likely if they are in a "pine" box, like used to be, or in a 10,000 casket, that is going to be in the ground, and certainly of no benefit to that body, for your soul is long gone, nor does it help the ones you leave behind. 

To me, leaving a "legacy" of being a decent, caring human being, that tried their best to love their family, take care of them, and know in your heart, you did everything you could to do the "right" thing, is much more important than a 750.00 flower casket arrangement, that shall wither and be gone within days. Anyway, I've not been here "online" much. And I will be in and out for awhile as their are things to be done... and things for me such as even my neck surgery, that I've put off now almost a year, that I do need to do... so as I make a list of the crucial issues, and line up what is important, and what is not so important, I will be here, some, and then be out and about getting other things done also. I have to get my eyes checked. 

My up close vision has gotten worse, plus I've not had that test due to me being on Plaquenil now in over 2 years, and I should be doing that yearly. So, that is one of the things that I need to do hopefully this week, and then of course the paperwork thing is almost a "hurry up" and then a waiting game. There honestly is no real "hurry" in any of it, other than how quickly myself and my kids want to work on it. Anyway, I may be away for again most of the week. I've got LOTS of painting to do, and getting those hardwood floors done... not sure yet exactly what I am going to do... I don't think completely redoing them is necessary... I think if I can get them cleaned properly, then apply the proper wax, and buff them, I maybe able to get by with that rather than go through the entire ordeal of "sanding, etc... on them..." 

but one day and one step at a time... with the weather in the process of getting HOT, lots of things will have to be done "around the heat"... thank goodness a good portion of things are on the inside, rather than the outside for now.... keep my family in your continued thoughts and prayers... we are all just in still kind of a shock, and somewhat of indecision on some things... yet it seems all of us tend to be on the same page... so that is a good thing... Rhia

Sunday, June 26, 2016

Alzheimer's, Dementia, Revisiting Life, Loss of Family, Lupus Flares, A Horrid Headache and Upset Stomach, stressed, & needing to FEEL BETTER!

I received my really nice Shirt, my wrist bands and my pin for my jackets etc. yesterfay from the Alzheimer's Association. As soon as I get dressed and wear it, I will post a photo, with it on. I have added "Dementia/Alzheimer's" to my advocacy plans and I will also be adding my own personal story about my Mom, and just how quickly this dreadful disease took her from just being a "normal" 80 year old, to almost a toddler/infant within months. I know over the past couple of years, I saw and talked about her "forgetting" thin

Monday, June 20, 2016

Fight ALZ! "The Longest Day" Brain Health, Cementia and Alzheimer's June 20th and the Month of June


I AM A voice for my mom, WHO JUST PASSED AWAY A WEEK AGO LAST THURSDAY OF ONE OF THE MANY HORRID DISEASES OF DEMENTIA! I Also watched her parents, both of my Grandparents suffer from these diseases, and I am concerned not for just myself, but my kids, their kids, and the generations to come... of ALL families... we NEED to END ALZ!

Thursday, June 16, 2016

To that Pearly White City.....

Again I want to come in and thank everyone for their love, prayers and support during such a very difficult time in our lives. Dad passed away 11 years ago, which seems almost impossible. In fact, it fell this year that March 27th, was Easter Sunday again, which was when he passed away. By the Lord's grace, He allowed me to take care of Mom, and be there to watch her leave this world, and pass onto where she was met with open arms by everyone who went before her. I had not told it here yet, but on that fateful Thursday morning, I went in to give Mom her "comfort" medications supplied by Hospice, as I did every few hours, and during that morning dose, I "knew" it was time. I had said that I would "know" somehow, someway, it would come to me, and it did. She seemed almost a bit more at peace in some way, yet, I could also tell she was almost "trying" to tell me. So, after giving her the medications, as I always did each morning early, I walked outside, around in the yard, just thinking, praying, and finding my own "way" also to make it through another day, and pray all I did helped her. When I came back in, I sat down beside her on her left side, and took her tiny frail hand in mine.

She never moved, and most of the time, even when giving her medications she would make a bit of noise or move a bit, so, all I knew to do, is what came to my heart. I began to sing a bit of several hymns that she loved to hear Dad sing. Of course "Pearly White City" was one that Dad always sang, and it was always requested that he sing many, many times at church, at other funerals and such, so that last chorus I began to sing of Pearly White City, this sense of calmness seemed to fill the room, and the tears flowed down my cheeks, and as I finished the last few words, Mom literally took maybe 2 breaths, and then just stopped. I sat there holding her hand, talking to her, and knowing, her pain, her confusion, and all she had endured was now gone. We are "selfish" as humans, and of course I did not want Mom to "leave", yet I could feel her within my own heart, and I knew no matter what her body was no longer able to do, she will always be with me, everywhere I go. I told others that it is almost like when I finished that song, it was Dad telling her to "come home". I want to thank everyone once again, and Joy it is so good to hear from you and your family. I truly would love to get to see all of you, it has been so very long.

Uncle Macon and Aunt Cleo were always my favorite Aunt and Uncle, and it was always a blessing to be able for them and sometimes your, your family and Mike to come also. Craig, thank you also. We have known one another since we were very young, and I appreciate your thoughts and prayers. Ron, I appreciate your prayers and condolences also, and it is funny it seems like just yesterday we were all working at EBF, or would be seeing each other in town, and although I've been back now for almost 11 years, I don't see many people, as much as I would like to. Thank you Jim and Frances, and thank you for the beautiful plant. I LOVE plants, so it will fit in very well with my collection for sure. I have to again give a huge thanks to Keever's, everyone helped me out and as always were so compassionate and caring. I thank Father John for giving the funeral service, and for all of the family and friends that stopped by on Sunday and Monday. All of you truly made this situation "easier" on our family.

We love all of you, and what a blessing it was to have my daughter Amanda and my Son In Law, Jimbo, and my two Grandsons here, plus having my son Jason with me, we even under not such great circumstances were able to have "quality time" together, and that is something we over the years have not nearly had enough of. I want to thank Family First Hospice for all of their support and comfort, for Mom and for me, as well as Physician's Choice Home Health Care, who were there to help me and Mom out for a few weeks before things had to go into "Hospice" care. I again are am so thankful and blessed. As one day, rolls into another, and as my heart is full with love, and as my mind and body try to "heal" long story, but of course I got sick, and was sick, mainly my Lupus acting up, but then I slipped on wet grass Sunday morning, and sprained BOTH ankles, the right one severely, so I am trying to take it easy for the next couple of days and allow my body to try and mend. -

Pearly White City Hymn Lyrics

There’s a holy and beautiful city
Whose builder and ruler is God;
John saw it descending from Heaven,
When Patmos, in exile, he trod;
Its high, massive wall is of jasper,
The city itself is pure gold;
And when my frail tent here is folded,
Mine eyes shall its glory behold.
In that bright city, pearly white city,
I have a mansion, a harp, and a crown;
Now I am watching, waiting, and longing,
For the white city that’s soon coming down.
No sin is allowed in that city
And nothing defiling or mean;
No pain and no sickness can enter,
No crepe on the doorknob is seen;
Earth’s sorrows and cares are forgotten,
No tempter is there to annoy;
No parting words ever are spoken,
There’s nothing to hurt or destroy.
No heartaches are known in that city,
No tears ever moisten the eyes;
There’s no disappointment in Heaven,
No envy and strife in the sky;
The saints are all sanctified wholly,
They live in sweet harmony there;
My heart is now set on that city,
And some day its blessings I’ll share.
My loved ones are gathering yonder,
My friends too are passing away,
And soon I shall join their bright number,
And dwell in eternity’s day;
They’re safe now in glory with Jesus,
Their trials and battles are past.
They overcame sin and the tempter,
They’ve reached that fair city at last.

Mom's Favorite Song

Candle In The Wind (Elton John - for Princess Dianna Tribute)

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed itself
Where lives were torn apart
You called out to our country
And you whispered to those in pain
Now you belong to heaven
And the stars spell out your name

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Loveliness we've lost
These empty days without your smile
This torch we'll always carry
For our nation's golden child
Even though we try
The truth brings us to tears
All our words cannot express
The joy you've brought us through the years

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Goodbye England's rose
May you ever grow in our hearts
You were the grace that placed yourself
Where lives were torn apart

Goodbye England's rose
From the country lost
Without your soul who missed the wings of your compassion
More than you will ever know

And it seems to me you lived your life
Like a candle in the wind
Never fading with the sunset
When the rain set in
And your footsteps will always fall here
Along England's greenest hills
Your candles burned out long before
Your legend ever will

Your footsteps will always fall here
Along England's greenest hills

Your candle burned out long before your legend ever will

Friday, June 10, 2016

My Mom has Passed Away - and some information about that..,

I am sharing this with each of you because I feel my daughter, Amanda is expressing ALL of our feelings emotions, and thoughts at this very, very difficult time in our lives. Life is so very fleeting, and I witnessed that within all scopes this past few months. Mom and I got to go to Winstar one last time in January. I knew about 3 weeks later, that would be our last ride while she slept and I drove to the Casino. :) She "cut up" her player card one day while I was there, and I kind of "scolded" her a bit, and then realized she more than anyone knew we would never make that trip together again, not in this world. Mom had a very peaceful passing at 10:20AM this morning.

 I sat beside her, and in my heart of hearts, I knew it was "time". I sat there, and sang 4 hymns, that she loved to hear my Dad sing.... and everyone loved Dad to sing in church, at weddings, and funerals. When I finished what pieces I could recall of "Pearly White City", she took another breath, and that was it.... Her hand in mine, just us two quietly, and me in "tune" as well as could be expected. That was my "time" to fall apart.... and I did, for a while I sat there holding her hand.... and then so happened the Hospice Nurse stopped by, honestly at the right time. 

Most of everything is arranged, Mom was a very simple person in life, she never wanted a "fuss" over much, so I knew her wishes were "simple" as far as after that. So, as I await for Amanda Batson- Matheny and her family to come from the Corpus Christi area, and to hear from Jason Harber - who I feel right now needs everyone to surround him with their love and support... He and "Granny Steele" had and will have a special bond always, and I know this is an extremely difficult thing for him to deal with.... yet all of us handle this things in our ways unique ways... so He will do the same.... We will have visitation and a Rosary on Sunday, from 4 to 6 and receive family and friends then. The funeral will be held at Keever's Chapel on Monday morning at 10AM with the Catholic Father residing over the service. There will be information on Keever's Website tomorrow about everything and the details. I will post that when I have a URL.

 I want to thank each and every one of you that have "held up me" through this... you are such a wonderful group of friends.... I also want to commend Physician's Choice Home Health here from the Ennis area, as well as First Choice Hospice, who took over last Thursday, and everyone were wonderful through all of this.... Words, I guess now, elude me, again but to say I appreciate and my family appreciates everything and all of the thoughts and prayers.....

From my daughter:

I would like everyone to please keep my family in your prayers, my grandmother passed away this morning. It is never easy to loose a loved one & this time is really tough!Granny was mine & my brothers last grandparent & my mom is her only child! She was the kids only great grandparent that they had left and it is not easy to explain to them that she is gone! ( I know the kids will always remember all the goodies she baked for them when they would go visit her!) I know she is in a better place now and her & papaw are back together again, so that helps ease the pain a little! We love you & will always miss you Granny

Mom's Obituary:  

Last photo of Mom, Dad and I in 2004. I was here from Seattle at the time, for my daughter's wedding, and I saw her and Dad then. This is the photo of all of us three, Dad passed away  March 27th, 2005.....

Tuesday, June 7, 2016

Mom and Sharing a bit more.....

I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc. 
But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part. 
Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele
The last pic of the 3 of us in 2004, before my Dad passed away...

Saturday, June 4, 2016

Moving Forward.... thru the realms of Life, where it takes us, chronic pain, family, and all of the things we "learn" along the way..... Alzheimer's

They did not give Morphine due to Mom being allergic to Codeine, but Dilaudid instead and since I know more about that medication, I am glad they chose it. They also gave me "Ativan" that I can give her, and then a combination of meds in a "cream" that goes at the pulse points for nausea, agitation, and to assist in breathing... so far, Mom has been able to swallow just fine, but they gave me the Atropine because it may get to where she does have problems swallowing, and that is what is another part of the "comfort medications". I am able to give her the Norco just as before, she now has really stopped eating all together, which as they said was "normal"... and she still gets a dry mouth of course the medications themselves can do that, so she will drink of all things it is so funny, Mom never drank any type of "Cola's", or carbonated drinks... but when this first began, she wanted nothing but Diet Dr. Pepper, Sprite Zero, and sometimes Diet Pepsi.... 

so if she does tell me she wants a drink it is usually the Sprite Zero, with some water in it, so it is not so "strong" with the carbonation. I changed her a couple of hours ago, and got her all on clean and dry sheets, and a dry night shirt, and her diapers on, then they gave me some cream I put on the heels where the blisters were... actually the nurse told me unless they are "weeping", to allow them to "dry"... rather than put anything on them... so really the one heel is the only one needing much care... 

most of the other places where her skin is so thin, and like me, she has very huge places that appear almost like "blood blisters" but flat, and not blisters, just more broken blood vessels... and the Lupus causes me to have those... I told her that I had to look at those "new" types of diapers, because it has been so long since I used diapers on my 2 kids I was out of practice... LOL... and I told her that I wished we were at the Casino, and that everyone here online, and around town that knows tells me to say hello and tell her they are praying for her... but I try my best NOT to disturb her... 

I realize she "hurts" all over... and just even trying to roll her gently from one side to the other to change a sheet, diaper etc.. just plain hurts... so I give her the pain drops, and meds, and then I try to clean her good, but not put her through any more misery of being tossed and turned in the bed... and today she said "ouch" a few times, but I would tell her it was me, and that I was trying to do a "better job" that the aide as far as not making her hurt worse... and by the time I had her dry, cleaned up and gave her meds, she was asleep and peaceful again.... I don't know whether I should be "posting" this stuff or not, BUT it "helps" me honestly... have some way to "say" the feelings and emotions.... and then I am not so "frazzled" - thus the posts help.... my back is so messed up, I could sit in my floor, scream, cry, and gripe due to the intense burning in my hips and down both legs.... 

I may have to go to my pain doctor if I can next week and have him "up" my pain pump meds until I can get into surgery.... but we shall see.... As I said in another post, I continue to "learn" a great deal from those from Hospice, and I have a high and new found respect for the people that I have been in contact with so far.... they are definitely Angels... what a difficult "job"... that has to be.... Anyway, back to the sofa for me... I have to try and get my back to calm down a bit... I did not sleep well at all last night, and had severe nightmares all night long... so I am drained......

Thursday, June 2, 2016

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"