A Letter to children (mine included) if something happens such as Alzheimer's or Dementia to me....

Here is a wonderful but hard to think about article with a "letter" to their Children from someone who thinks about Alzheimer's and what they want to share with their children....

https://chermor2.wordpress.com/2013/08/21/what-ill-say-to-my-children-if-im-diagnosed-with-alzheimers/

And after witnessing what this horrid disease did to my Granny, my Papa and some with my Dad, and now what it is doing to my Mom at such a rpaid rate... a woman that just 7 months ago was just waiting for my two abscesses to get well enough so we could go to Winstar for a night, that now cannot turn her washer, dryer, microwave, TV, or just about anything "on" or use it... has no clue how to "drive" her car, & cannot recall how to take her medications, but also I have watched her go down in physical appearance, she is shriveling up to nothing, she barely eats, but will right now drink the Ensure's and drink Diet Drinks, and she NEVER used to like any type of soda that much, she has not put on "street" clothes in months, she "cut up" her card to the Casino, lost her SS card, her Medicare card, 3 credit cards within 2 weeks, can't pay a bill, or make out a check, has no clue what any of her bills mean, and even though I have just about all of them on auto pay, two of them I am going to have to put on just emailing them to me, she was almost late on one this past week. I did not know she got it in the mail, and finally she happened to show it to me, many days she is almost bedridden, thank goodness yesterday was BETTER, for a change... she was up and out of the bed yesterday, and was "more alert' and understood more, although again, I had to start her washer, then put the clothes in the dryer.... she thought her money was "running low" and I told her Mom, you are NOT spending any money, other than your regular bills, so nothing is wrong with your finances... she cannot recall the day, month, or day of the week most of the time...

 I have never seen her home as in a disarray as it is now... and even her, she no longer barely cares for herself in appearance, and I feel does not care to.... anyway that is just a few things that Lisa Lisman Walker, you totally understand and more, and you helped me so much... I am now more aware of why or why not on some of the things she is doing... plus Mom is also in chronic pain too... I feel it is her lower lumbar spine, plus arthritis in other places also... she had it already in her hands and so forth, but with her back, and she has some stenosis, some discs that are not good, and bone spurs etc... but the only thing they can do is give her medication... they did one round of injections, but unless she gets a bit better mentally, I do not think she would even think about going back for those... and she cannot take NSAIDS due to kidney functions... so she will be on medications the rest of her life... and if she does not take them as she should, then it puts her in bed worse due to the pain.... 

SO, THE MESSAGE HERE IS... this "letter" is also to my two children Amanda Batson- Matheny and Jason Harber - I will write you both to tell you many of the things this woman says in hers... IF I EVER GET THIS HORRID DISEASE... just put me in a special "home" for these types of patients, especially when I am getting this bad... because I NEVER would want either of you to have to deal with me in this capacity... I am trying my best to keep Mom at her home, and feel it is "too late" to try and "build on" to put her here with me... plus I feel she would not be happy, if we did... if I can keep her in her home as long as possible, with the help of Home Health Care, Meals on Wheels, and myself, then I shall do that... but I want you both to be able to always LIVE YOUR LIVES...Mandi, with your family, and Jason, you also... you have a life ahead of you, and you may too have a wife, and someday kids if you chose that route, and I do not want either of you to have to deal with what I see and hear daily. I want you both to remember that I love you both too the "moon and back" twice, and that if it came to me being like this, I still love you and I would understand if you could not yourselves take care of me... do how I am doing Granny, and let me stay with my own home and puppies, as long as I can... and if with help from Home Health care, and so forth, I still cannot be "alone" then I want you to put me where I can be cared for, but not have to be a "burden" in your lives.... I love you both and miss us not being close, "physically" as to where we live, but that does not change the fact that I love the both of you more than life itself.... Mom Rhia Steele "All things Autoimmune"

Updated Information on My Daily Newspaper, adding a new title and more information including chronic pain, and other diseases...

Notice I have change my Daily Newspaper to include in the title Chronic Pain. I feel I need to make sure everyone does know this paper published and updated at least twice daily includes not just AI illnesses, but much information about all aspects of Chronic Pain, of Alzheimer's, of Dementia(s), and how each and every one of these can totally destroy a "normal" life... and it can happen within a "breath's space"... as I always say...

My last months now for at least 6 or more honestly, have been more than a terror daily... my "mountain top" has not been stood upon in a long while, and between my own chronic severe pain issues, my Mom's almost "overnight" development of some type of very severe "Dementia", where she is basically unable to take care of herself at all... and even yesterday was more or less bedridden, and also complaining of severe pain that began about 4 months ago and is progressing... my life has been turned upside down, and inside out even more than before all of that began.


I desperately need two spinal surgeries, my neck, which I have again had to "reschedule". It should have been done on April 4th, but due to Mom, and not having things in place for her, since I will basically be unable to do much of anything for several weeks, now I have it scheduled for May 4th... and my lower lumbar spine is progressing to get worse... these past several nights and mornings have almost taken me to the sofa due to the severity of pain once again, the weather, humidity, and things I have had to do, causing me all types of issues.... so I want all of you to know this just not just "AI" illnesses but so much more....

Daily NewsPaper- Life with AI, Chronic Pain & So Much More

Dealing With More than you Want to When An Elderly Parent is getting more "ill" by the day with Dementia and/or Alzheimer's

Before I begin other things I must get done today, I wanted to get an update on Mom here. Things are just not looking good. I was there everyday I think this past week again, but maybe Wednesday. The days run together for me now, and I seem to also almost be "lost"... I was there for a brief time on Friday, and noticed she was out of things such as paper towels, Kleenex, probably low on toliet paper, since she had a roll of it in the kitchen for "paper towels"... and she had drank two, 2 liter Sprite Zero and Diet Dr. Pepper's and a 1 liter of diet Pepsi... and the strange thing is Mother used to never drink those. She would keep one for me when I came over, and I had really stopped drinking them a while ago, but I would have a glass while I visited her. She also was nearly out of the Ensure drinks... so I never said anything, but yesterday, I needed to finish mowing as much of my lawn as I could before it rained, so I got that done, and then dressed and went to the market, and picked up a couple of boxes of Kleenex, some double rolls of toliet paper and a 6 roll package of paper towels. 

Plus more Diet Drinks, Ensure, and a couple of cans of soup I knew she would eat. I was not sure what else she needed but I knew to get those, and then get a list. Well, I got there and she was in bed, and this was at like 1:30 in the afternoon yesterday... she has knew I was supposed to come, so the door was unlocked which was a miracle... so I went in, put everything away, and she finally got up and came in the kitchen. I had also picked up medications I knew were ready, and she is complaining of itching so I bought some Benadryl, because she never will get any, and I always have to take some of mine over there. So, she was hurting, and itching (and I don't think it is the pain meds causing the itching, I think hers is just more dry skin because she will NOT put lotion or anything on her skin, and it is just like scales it is so dry)... in fact I need to buy some lotion because the woman from home health care said they would make sure they would put it on her skin when they were there. Well, we sat down, and I told her what I bought and told her to get a list ready and I would pick up more items she needed, but it may be Monday, since I knew the weather may be lousy today. 

And it is, cool, windy and rainy outside today, thank goodness I mowed... which even with the new cordless mower almost killed me... I am only going to be able to mow some, and will have to have someone mow also and help me in between. I will not be able to especially once I have my neck surgery, which I DID CANCEL AGAIN... until the first week in May... right now until I get every else set up for her, there is no way I can have neck surgery. She is so far gone in her mind, she I do not think even comprehends the difficulty this surgery means for me... I really will probably be in a neck brace at least 6 weeks, and this surgery, due to having to remove all that he put in the 1st one in 2012, means this one will probably be more advanced, and lots more hardship that will take a lot longer to heal.

 I noticed he is ordering some type of bone "stimulator" for bone growth... not sure if he means internal or external, but he must think due to my issues with another severe compression, that I may have issues with the osteoporosis causing me to not heal as quickly, which if he has to remove what has grown in place now for 4 years that would make sense... so I felt I needed to wait to see if I can get some help myself here at home. I may need him to write a script for me to have some temporary home assistance come in, and also have my girl that does the dog sitting Samantha to come in and help me with the dogs, feeding them, changing their paper etc... because I will not be able to bend forward etc for weeks after surgery... so a "caretaker" may need to be in place for me also for at least two weeks after surgery.... anyway, I FOUND HER SS CARD! I do not know where it was, but it 'suddenly" appeared in her purse after I looked and looked for two days for it... and it was there, but NOT her Medicare card or the insurance card, which I already have the insurance card, and the Medicare Card is on its way... but then she hands me a "bill" that I had not seen, and it was for one of her credit cards she uses to pay bills, buy groceries etc for the month, and then pays it off when it comes in...well she must have gotten it in a couple of weeks ago, because it was due this coming MONDAY!

 So, fortunately, I went into bill pay and got it set up so it will pay on Monday, thank goodness so it is not late... other than that I may have not gotten it in... SO I SET IT UP to come to me via email and I will pay it electronically. That was just about the only bill left that is not set up to either email me so I can pay it, OR pay electronically without her getting the bill... and now there is one more, that I will set up also, because she cannot recall even when that came in or she did not even realize it was a bill.... I watched her "fiddle" around with a pen, scissors, this little box from a "pie" like you get an individual pie from like Wally World that is already baked, and a brush, a nail file, a mirror, for like 45 minutes while we talked... they sit on this little what used to be a lamp stand and magazine rack all in one, but the lamp has been gone for years and it is so old and almost ready to fall apart. It needs to be thrown away, and something a bit more sturdy put there, but I tried to hand her a plastic container I brought over there to put pens, paper, scissors, etc in, all together, so they are not just scattered loose on this table... BUT I could not make her understand, and she just kept putting them off, on, moving them, etc... and I never did figure out what the heck she was trying to do with it all... but she would pick it up, look at it, and then lay it back down... I do not think she "knew" what any of it was for honestly...

What made it worse though, is that she had some cards there, most of them old business cards maybe from the bank, people no longer even there, and she kept asking me if she could throw them away, and I told her yes... then she came to the two cards from the Casino's, our new one from Winstar, they just gave out new cards when we were there gosh just a couple of months ago, and then one from the other Casino in OK.. and she looked at me, and said I am cutting these up, and I said MOM, those are our card for the Casino's! You don't want to get rid of those, and she looked up and said" I may as well, I have no intentions of being able to ever go back again"..... 

I was floored... that is the ONLY THING MOM EVEN REALLY ENJOYED! Us having Free rooms, and sometimes free meals, and we would go usually about every 3 months, most of the time now spend the night if I did all of the driving, and she was always excited about getting out and getting to go... Now, my fears of what I suspected about a month ago come to reality... MOM IS GIVING UP! In her mind, she feels she will no longer be "able" or even "want to" get out and even go to the Casino again... the other day when the home health nurse was there, we were talking about how we enjoyed that so much, and Mom looked up at the woman and said I just want you to be able to give my daughter enough "rest' by helping me out so "she" can go to the Casino... she feels she can't leave me alone long enough right now to go, so when you have your schedule in place, she can finally get to go back and enjoy it... and the woman looked at her and said well Ms. Steele, we can get you up and going and you can go again and enjoy it with her.. and Mom said, Nope, I won't be going back again... 

I just am not able physically or mentally.... I so wanted to cry, to scream at her MOM, DO NOT SAY THAT! YOU CAN GO, YOU JUST HAVE TO WANT TO FEEL BETTER, AND HELP YOURSELF BY EATING RIGHT, AND TAKING YOUR MEDICATIONS, AND HELPING YOURSELF GET STRONGER AGAIN! But, I knew no matter what I said, nothing would "change" what she thinks and feels... I am having to come to deal with Mom will never "come here and live in the new room we wanted to build on for her".... she has in her mind decided she does NOT want to fight, to be stronger, she will NOT eat better or healthier, she will NOT help herself get stronger... she never goes outside, in fact unless I go there, she keeps the blinds closed now, she will not open up the front door anymore. she stays locked up in the dark all day, either just sitting in that chair, or laying in the bed... I got the curtain rods up and put her curtains back up in the living room, and got the new mini blind up in her bedroom finally... and fixed the front door knob, threw away ALL of those little dangerous throw rugs, that were a trip and fall hazard... 

but even with the new microwave, as simple as it is, I have had to "bake" the potatoes for her... and I am in a state of "shock" that she has reached a place that she is giving up... she is losing more weight, she will not eat anything "decent" or nutritious... she just is "refusing" to get better... and no amount of me encouraging her, or trying to reason with her at this point does any good.... I just have to try and "love her" and get her the help I can, and do what I can, to my best ability... but at this rate things are deteriorating fast... and frankly it scares the hell out of me... but I also know from my experience with my own Dad, and my Grandparents, and what my friend Lisa Lisman Walker told me at lunch the other day and what I already know, I cannot "change" her mind.... it is what it just is.... Rhia

Latest Addition on Saturday of "All Things Autoimmune""

Latest Saturday Addition of Rhia's Newspaper "All Things Autoimmune" - Chronic Pain, Health, Laws, the CDC, technology and so much more... feel free to subscribe to have it come to you daily via email!

http://paper.li/ravishingrhia/1438808814#!headlines

More on Dementia, Your Parents, And the Extremely Tough Decisions to Make, When YOU ARE ALSO CHRONICALLY ILL and in CHRONIC PAIN...

(My firend Denise that I went to high school with is struggling also with a 2nd round of cancer of her ovaries I believe, and it has spread down into her thigh and presses on the nerves in her legs so she is also dealing with lots of drama in life )   -  I appreciate you so much Denise Tekell...(I am speaking of Lisa that I had lunch with yesterday, another friend from high school)  We both spoke about your struggles, and just how brave and strong you are. It is so difficult to watch someone who deserves happiness to have to struggle through despair that they don't deserve. And (this lady is a FB friend, but she is like a dear "physical friend who is right here with me at times)  Lourdes Villegas-Anaya even though we are not close "physically" you remain a dear friend also. You have also helped me through some difficult times, and I hope someday we can meet in person! I am still struggling with getting things settled for Mom, before I have the neck surgery. I have decided to postpone it until the end of April or first part of May. 

 

I thought by now I would have the Home Health Care and more of the things I need for Mom done by now. But it all takes time, and I am still working on some aspects of getting her people in there to help her, and to get this new phone that has an emergency button on it set up, and pray she can understand how to use it. When I had lunch yesterday my friend was explaining some things she went through with her Mother In Law and her having Alzheimer's... and now some of the things Mom does or does not do, begin to make sense. So, I now have more information that helps me to understand her reactions or actions at times. I went over there yesterday afternoon kind of later, around 3:40 or so. After lunch I had stopped at "Wally World" to pick up a couple of things, a couple of which I needed to take to her, and when I got to Mom's house, and opened the door... it was so odd, she was standing there by her chair, in a blouse that I have not seen her in gosh, in months. 

 

She always remains so COLD, and usually she had some "house dress" or gown on, and I've not seen her in actual "clothes" in a while. But, she did not have on any bottoms... And I asked her what she was doing, and in fact I had bought her a pair of Capri pants while I was out, because all of her clothes are much too big for her, so I got them and told her they were an "early" Mother's Day gift... but I don't know if she was "dressing" thinking that "we" were supposed to go somewhere and I just caught her in the middle of getting dressed or what. She never really "told" me why she had that blouse on, and I made light of it, and said "Mom you must have known I was bringing you a pair of Capri's that will fit"... anyway, I did not stay, it was getting later in the afternoon, and I had a few things to do at home, so I told her I would be back today, but I have SO MUCH to do for myself, and I need to wash her car, it is so covered in thick dust that it would be like mud if it got wet, and I have a new curtain rod she needs hung, and a new mini blind I bought, and all of those things take time, even with my cordless screw drivers... 

 

so if I go there it will be a full day plus in order to replace her Social Security Card she lost, I have to drive over to the next town about 15 miles away, to the nearest SS office in order to get the replacement. So, that is another couple of hours depending on how busy they are... but my lawn needs mowing, and I have clothes to wash, and my own house to clean, and need to get busy on painting a bedroom, the spare room... along with trying to get the outside of my own house painted... that is what I mean, and my friend said it herself, even her and her husband with her Mother in Law living with them, it was over a full time job for BOTH of them, and there is no way I can do it ALL myself, even with home health care... if she continues to go down as quickly as she is mentally, I may need much more help than I have now... and the decisions that have to be made are not easy ones at all. That is also what makes it so difficult, it is the tough decisions through all of this... 

 

I NEVER, and I said it a billion times would EVER put my parents in any type of "home" but if Mom continues to go down as quickly as she is, even building onto my home and having her here may not even be enough... that may not be the answer as much as I want it to be... so all of the decisions to make and the "footwork" I need to do, those are difficult issues to deal with.... so keep me in your thoughts and prayers... I need a "break" but I just don't know how to get one, and I need the surgery, but it just seems like now is not the time.... 

 

I recall when my Mom had to come to make the decision to my put Granny (her mother) in the nursing home. Even though Mother had a sister and brother (who have both now passed away) their health, and the size of their homes were not conducive with bringing my Granny to any of their homes after she fell, broke a hip, and the doctors said she could no longer live alone. But, my Granny was 92 years old and had lived alone from the time my Grandfather passed away of Alzheimer's and Lung cancer at the age of 77, so she took care of herself for many, many years, and if she had not taken that fall and broken her hip she may have been able to stay by herself a bit longer.  She had osteoporosis, like myself, the severe range which frightens me, so they feel her hip "broke" and then she fell... that the osteoporosis caused the fracture which led to my Granny falling. 

 

So, these truly tough decisions in our lives about parents or loved ones, are often times something we never "see coming" until they are upon us. I know that my Mom had been showing "signs" of Dementia/Alzheimer's for a long while, but it was not until the past 4 to 5 months that things went South extremely fast. That is why through my own research, and what I have been told, I feel this is not a "regular" type of Dementia, but one that comes on much more quickly, and takes its toll very soon. It is not like some types of Dementia and Alzheimer's that seem to come on slowly, and sometimes the patients may live for years and be able to function in a good deal of capacity before it really gets bad, but this is so very, very different than even my Grandfather, who had full blown Alzheimer's... this has taken my Mom from being able to do many things herself, just 5 to 6 months ago, to not even being able to turn on her oven, her washer, her dryer, know the month, date, time, and not understand MAnY things, and I feel she does not even recognize some items. Like she was telling me on the phone that the "phone" light was blinking, and I tried to tell her Mom because you are talking on it, the "base" light will blink in use... but when I got to her house, it was the alarm clock blinking because of a storm we had the night before had caused the power to go off for a few minutes, so it was not the "phone" at all. And she cannot recall the names of things, or of people, and now she tells me "YOU know it was "different' when I lived "over there"? And Mom has lived in the same home since I was about 3 years old! There is no other "over there".... So, unless she is talking about when she was still living  home with her parents, I had no clue where "over there" meant....

It is very difficult to watch a parent, or any loved one lose their capacity to manage things on their own, and especially difficult when it happens so fast... 

All I can do, is try to do my best to help her and support her, but I also have to take care of myself.

I should have that neck surgery next week, that I am having to put off again. I am not getting things in order quickly enough for her before I go and have cervical neck surgery that will incapacitate me for several weeks. And now, a few months ago, she would have "been able to understand and even maybe help me", but now, I don't think she even realizes what it means for me to go through this complicated surgery, or that I won't be able to life things, drive for a little while, that I will have a neck brace on for six weeks, and that many of my daily activities that I do at my own house will not be able to be done by me.... 

So, if you are in a situation such as this, and I know many of you are, please try and not feel guilty, or selfish, or like you are disappointing a parent or loved one if you must make hard decisions that you never felt you would have to, such as putting them in some type of assisted living center, or nursing home... it could be the best for you and them also... they need 24/7/365 care, and lots of it... 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Lesson In Life About Taking "time" to laugh, to catch up, and to be out of the "hellish" times so many of us have....

As I was typing out about having a lunch and it has been a long time, or being with an old friend from High School or College, maybe a job from your past, all of the hopes, dreams, plans, the "faith and hope that can move mountains" go with you, and in a small town such as Ennis, it never dawns on you that it maybe YEARS before you see those people again. Whether it is family, a friend, or whomever that was a "pat" of your life back then, all too often becomes "lost" in "life". We have "corners and curves we don't often expect. Things that were supposed to happen, didn't or they did yet something changes your path, and what you felt and thought would happen, is far from that memory in your mind. I know when I was in especially High School, I had a "few" really good friends. Due to the fact, that I felt "overweight" and I was a bit back then, and at that time Mom 9bless her heart not her fault because she was not taught either)... didn't know how to "fix" my hair, or how to put makeup on, and dress more in "fashion" ... I realize my parents did the very best they could, and I thought about that in the shower this morning. I was "fortunate"... 

 

I had a home, both parents, Mom never had to work, so I was never "alone" after school. Dad worked at the same place all his life from the time he was 16 when EBF was Ennis Tag back then... I always had 3 meals a day, I was always able to take a bath, have clean hair, and clothes on my back. Those were things that all too often we don't realize until we are older there were families that were not and are not that lucky. Kids that may have one or two meals, and those are at school, or go home to an empty house because both parents work, and they may not have food on the table every night, or clean clothes that fit them, or new shoes... and more so today, we have kids that go to bed hungry in this nation, in this state, in this county, and in this town... Anyway, what I am trying to get at, is that I did not realize just how "lonely" and "alone" I have felt now for months, and months, probably at least a year..

 

I have had to do my very best with what I know to help my Mom in any way I can... most of my time is spent either helping her, whatever that might be, especially now, she cannot even start her washer, or turn on her oven... and if I am not there, I am at home, with two awesome puppies, but they are "WORK" also... I love them and they keep me "sane" when my world feels insane....yet they have to have care also.... and then my home has to be cared for, whether it is daily things, dishes, sweeping, mopping etc.. taking my own medications correctly, and then the other things mowing the lawn, getting the house painted, getting the back "forty" mowed, and all of the "deeper" things we have when we own a home need to be done... so until I went to lunch today with a dear friend, I didn't realize just how "I have not laughed", I have not "smiled", I've not been with anyone my age, who understands my situation, and just getting to go out of the house away from it all, and have lunch was such a special treat. IT is almost like a Kid in a "candy store" for me... that is something I have not gotten to do very much over the past year... I had wanted to go dancing, yet I always "feel guilty", or I feel I should stay home with the puppies or not spend the money, even though I don't drink a drop, and that "old feeling" of "what if like high school" no one asked me to the high school prom or out on a date... none of the guys from school ever asked me out.... in fact my cousin from Mesquite came down and went with my to my Senior High School Prom, so I would get to go.... 

 

I still recall the dress I wore... LOL... but we get "lost" in "transition" of marriages, illnesses, families, jobs, moves, all of the "stuff" in life that as Seniors leaving High School never in a million years would have thought would happen in our lives... Our nation is NOT the "nation" of the USA that we knew back then, not many "towns" are "safe" like Ennis was back then... things move faster, and if you don't keep up, you are left behind in the stone ages, almost like my own Mother, who even before this horrible Dementia/Alzheimer's or whatever it is hit her, she knew nothing about cell phones, or cordless anything, or even how to put gas in her car... 

 

...all of the technology we take for granted these days, she has no clue of how to use a computer, or what the "internet" really is all about. She hears me of course, and knows what I tell her, but she has never had that experience... so we are "wound up" in a ball of "life"... and we often "lose out" on a "lunch date" with a high school friend, or a great conversation with someone you had not seen in years, or all kinds of "small things" that when the do happen, you "CHERISH" them forever. Age gives us a space, where we no longer "take so much for granted each day, or even each hour. We learn what was important 10 years ago, means nothing today... we take those "small times" and keep them locked in our heart, knowing life again can get us lost in "transition" once again... it is sad... but it is true... so TODAY, to be able to experience a smile, old memories, and make new ones, catch up on the years between, and laugh about some of the old happenings.... Today remains that way for me, as well as Carrie Wilson Taking time to take me for my surgery to have my new pain pump put in, .... I will cherish those times, that Denise Tekell and I get to talk for a moment in WalGreens, or run into an old friend you have not seen and be able to find out how things are.... those are the true things I know now I cherish... Laughter, people who truly care, someone that helps not because they have to, but because the want to, and I hope I can "take more time" for "me" to write, to do my advocacy work, to play with the dogs, to have a laugh with a friend, and not be "stuck" and "stagnated" in the "moments of hell on Earth" that most of us know all too well.... Rhia