Dementia, Alzheimer's, "A Quilt to Remember", getting back to somewhat of a normal, life, Advocacy work, & making a "Quilt Block" in Memory of my Mom & both Grandparents

Alzheimer's, Dementia, Quilt to Remember,Mom, my Grandparents, and for our generations to follow


YES! IT is 4:30AM and I am UP!

 I have not been able to sleep again in a couple of days. I am not sure if it is just being "down" during the day with my ankle, or feeling a bit "edgy" that I am NOT up and doing some of the things I need to be doing. Both pups have also been restless, especially tonight. In fact the little one my Peanut Holy Terrier, :) was a bit sick to his tummy. But, that pup will EAT ANYTHING! I have to constantly keep a watch on him...because if he can get his paws on it, it's going in his mouth, and more than likely he will eat it. I hope it is a "puppy thing" for I know my Tazzy did that when she was little. But after she turned about a year old, she got out of that picking it any and everything in her mouth. Plus he CHEWS on everything! My other two did, some, also when they were in their first 6 to 9 months, but after that, they began to ONLY CHEW on what they were supposed to. I hope Peanut does the same. But he is definitely, "a pup of a different color" for sure...LOL! Stubborn as a Mule, yet he is coming out of that a little now. He also thinks my hands are "chew toys"...so we have really been working on NOT "chewing, nipping" at Mom's hands and on Bub's ears... They seem to get along good, but there are times since Bub's is older, he gets enough, so he puts Peanut "in his place"... he never hurts him, he just gives him this "look", and Peanut KNOWS to BACK OFF playing for now... :)

They both like me to sign to them, and I did finally get Peanut a "song" I made up, plus he already is getting a couple of nicknames, I catch myself calling him "Pea-knuckle" (spelling like the game Pinochle" - or LOL something I bit "off" color, since he was neutered, I call him "Peanut-less" at times.... LMAO! Well, believe me ALL of them have had several names and always learned that by either that name, OR my TONE or BOTH, either things were good, or they had done something "not so good".... just like kids, these fur-babies, seem although at times to continue to be fur-toddler's most of their lives... They have really been "trooper" though.

Through all of this with my Mom, I had to be in and out so much here at the house with them, and that was something they have not been used to, I know there were days they both could not wait for me to "cling" the keys and open the doors and both standing, jumping, barking, and crying for joy that "Mom is finally HOME"! So, it has been a difficult time for them, a totally weird schedule, and not our "normal routine", although I tried to give us "our time" each evening together... and then I know they have sensed me being upset, in a turmoil, and also both of them especially Bub's knows when I am not well myself, and it is almost like he "watches" over me, sitting beside me, and even at times he will be there, and he will just let out this kind of almost a "cry" wanting me to "sit down" with them, and be still for a little while. So, having me "home" the last couple of days to themselves more or less, and spending time down with my ankles, they have been in heaven right beside me.


Okay... now to another reason for this POST, I want to do a "quilt piece" for the "Quilt to Remember" tour that is going around the nation in honor of those who have had these horrid diseases of Dementia, and have taken away their minds, in so many different ways, time frames, and so forth. I had been an advocate already in many ways for the Alzheimer's Association but I had forgotten about the quilt. So, when I wan in getting information on where to donate in honor of a loved one etc, or in memory of someone, I saw that website about the quilt.

Since both of my maternal Grandparents had some form of Alzheimer's and Dementia, and now my Mom, I want to do a quilt piece to go with this quilt around the country. I've submitted my "story" and asked for instructions about the quilt block, which for an individual is 4 feet by 4 feet.

Since my Grandmother made MANY quilts completely BY HAND, not one machine stitch in them, and I have also been able to do a quilt, and have actually a oversized, probably King sized almost top finished for a quilt, I decided what better way to "give back" and also hope to help to find the reasons for these horrid, mind taking diseases, and give hope that we find reasons, find more help, have more research, find a cure, or find out what we can do to completely STOP some of these types of dementia's. I am enclosing the "link" here for this project. I have several ideas already and really already have materials etc, (some I found over at Mom's, and I think it is still good enough to use in the quilt) and am waiting to hear back on details about the quilt block and getting it to them -

http://www.alzquilt.org/

Here are a few example of blocks made by people for the "Quilt to Remember"

Created by Colleen Anderson,
Fargo, ND,
in honor of her mother, Patricia Kelso

 Created by Phyllis Bednarek,
Woodridge, IL,
in memory of her mother, Mary Estelle Ruppert 

 

Created by Bernadette Discon,
Jackson, NJ,
in memory of her husband, James Russell Discon

Created by Kimberly Fondaw,
Grand Rivers, KY,
in memory of her mother, Geraldine M. Brown 

ALL of these are from the website about the quilt! Plus there are many, many more that give me some wonderful ideas for doing one in memory of my Mom. 

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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.

Refrain

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.

Refrain

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.

Refrain

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.

Refrain

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

Me, Ill again, sprained both ankles, yet made it through the funeral, and things are "okay".... more later...

Quickly, of course all went well actually with Mom, the funeral, and so forth. Things turned out nice, but simple as she would and did tell me many times she wanted. So, for that I feel blessed. I will miss her more than you can know, right now, I feel I am still in "shock" because it all happened so very fast. Yet, if it has to happen, that honestly was the best "outcome"... no longer her suffering, no longer her not knowing anything, and I just am "grateful" in many ways, that if this had to be as is, it did as it was... The Lord knows "how much" we can handle... thus He also allowed me to accidentally slip Sunday morning off my own porch in the very wet grass, while on the phone with Amanda Batson- Matheny and I SPRAINED not just ONE ankle but BOTH, the right one extremely bad. I did go and have them X-rayed Monday afternoon after the funeral, and they feel there are no breaks BUT due to the immense swelling, he said I may need to have especially the right one X-rayed again in a few weeks, depending on how it does... Amanda Batson- Matheny, Jimbo, Jason Harber and other friends and family, I am so very appreciative of the kindness. the help, and how many of you surrounded around each of us and Mom so we could find some "peace" in that Valley.... I shall later again tell more about last Thursday when she passed away, her little frail hand in mine, but honestly I AM SICK! I "thought" that us having all the of stress, eating out so much, and I am not used to that, not sleeping, and being so busy with everything had just worn me down but I woke up running fever this morning... so I guess that is God's way of "keeping me off my feet"... I can "endure" the severe ankle sprain pain, BUT I am a baby when it comes to fever, even just a degree gives me the worst headache and just makes me sick as hell. So, I am dealing with that this morning, which for now is okay... we got a great deal of things going and done, and of course over the next weeks and even months there will be more... but for now all of the most important things are done, and we all need a bit of rest and time to reflect... so if you don't "see" me here or hear from me, I am just feeling lousy between all of it and I am not really even online, nor answering the phone unless it is Amanda, Jason or someone "important" for now.... Again from all of my family to all of you our sincerest Thank you's.... Life is truly fleeting.... Rhia

Thank you Extended Thoughts, Gratitude, Life, Lupus,RA, & All of the Health Issues In between...

First of all, I want to extend a very heartfelt Thank You, in behalf of myself, and my family for all of the support, thoughts, prayers, and the many that lifted myself, Mom and family UP, while she went on to be in a much better place last Thursday morning.


It was serene and surreal - both - me there with her, holding her tiny hand in mine, as I "knew" like I said I would that "time" was near, and she was ready to go "home" to be with my Dad, and all of the loved ones, that had passed away before her. As I sang several hymns to her, all of which were songs that she so loved to hear my Dad sing, and did here him sing, many, many times over, and I finished the last of the old hymn "Pearly White City", Mom drew one last breath, and that was it, and it goes "Tis' finished".

There was such a mixed emotion there just the two of us, so silent, yet the moment spoke in volumes that I knew she was at peace, no more pain, no more suffering, no more of laying there, having no quality of life... and I had lost not just my Mom, but someone I had grown very close to over the past 10 years in different ways, and the thoughts of all of our laughs, fears, talks, trips to the Winstar over the years, and all came flooding over me, like some of the floods we have experienced as of late, yet much in a good way.

I suddenly felt "peace" also. I suddenly in my heart of hearts knew, that all we had "endured" over the past at least 8 to 9 months and really much longer, now was over, and we could both rest in the fact, that she moved on to be "better" and my own "job" here on Earth is far from finished.

Not just "things" to do because of her passing, but LIFE to live, that I know now was waiting for this to happen. NOW, is when after things are settled that I shall finish my 3rd book, because "her story" shall be a part of that book.

I want to once again extend such a thank you to our Physician's Choice Home Health Care here in Ennis, as well as our Family First Hospice. All of them, especially that last week with the Hospice people would been so much more difficult had it not been for them. They look this horrible situation, and made it a bit easier to bear.


I am in gratitude of Keever's Funeral Home, Father John from the St. John's Catholic Church here in Ennis also, the Ennis Flower Shop who did such a beautiful job on the casket spray, and everyone else who sent their wishes, flowers, donations, and put their love and arms around my family, as we dealt with and continue to deal with a very sudden loss.

As the days move forward I will now be able to begin another realm and branch of my journey here, in my writing, and in my life. Of course there are still many things on the "list" of to do's, yet as I do those, I will now be able to get more back into my own writing, and pray that my "voice" shall once again speak to me in order for me to complete my 3rd book, and publish it.


I also have more advocacy work to do, since Alzheiemer's/Dementia, especially Lewey Bodies Dementia, will become a huge part of my advocacy work....

I wanted to catch each of you up, and let you know what is happening, give you some links also, and again tell you how much I so appreciate your reading my posts, and continuing to follow this journey we call life.....

http://www.jekeevermortuary.com/home/index.cfm/obituaries/view/fh_id/13137/id/3742850

http://www.physicianschoicehomecare.com/

http://www.familyfirsthospice.com/contactus.aspx

   http://www.alz.org/

http://www.alzfdn.org/?

http://www.alzquilt.org/

World Blood Donor Day Today June 14th 2016!

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