My Mom nd the Physical Toll This Horrid Disease has taken upon her in every way.....

 This photo I took Today May 7th, 2016 of her.

This photo I took at Christmas 2015 of her.

For those that do not know, this lady was able to do her own shopping for the most part, cleaning, cooking, and just getting out of the house when she wanted not but about 7 or 8 months ago... she went from 150 pounds to she weighs around 114 pounds now... so it is not just the mental and cognitive changes, it effects someone in every way possible... it is hard to fathom she is the same person, My Mom.... and that is sad... she usually does not know who I am, nor does she realize she is in her own home.

Trying to Contend with a Mom with Dementia and my own Body reeking Havoc over me... ( OH and looking into NURSING HOMES)

IT has been another insane WEEK for me! Mom would NOT really participate in any Physical Therapy, basically did not eat for a couple of days, would NOT get up, would not "speak" when I asked her what she wanted to eat, etc.... and FINALLY YESTERDAY, when she realized she HAD NOT TAKEN ANY MEDICATION for a couple of days, and HER BACK WAS HURTING BADLY, and that she needed to try and get up, let the aid give her a shower, change her sheets, finally woke up enough to eat, take her medications and so forth, so I got all of that taken care of, and I have been there every day, and several days I went twice. But, as I told her, when she lays there, and just ignores me after I have asked her about eating and so on, 4, 5, 6 times, and I continue to get no answer, (she is awake and hears me) she chooses to just not answer or she just says NO,

 I do not want anything.... I finally give up, tell her I need to get home to do my own house work, and my own things and I leave. Well, I got everything done, and said something to her, and she said, "Well, my daughter" has the same problems.. so once again she had NO CLUE who I was... and this "woman" she keeps talking about coming over is ME! She just does not know anymore most of the time that she is even at her own home, she does not know whether it is spring, summer,fall, winter... she has no clue what day it is, what month it is, refused to go to her heart doctor's appt yesterday, refuses to go see her own doctor, she claims she is not "strong enough" even with a walker to get there... 

which NO she is NOT because she stays in the bed most of the time, not moving, not eating, not drinking anything again but diet drinks... and some Ensure... and ALL of us have tried to get her to understand the pain is worse when she continues to not get up, move around, she is weak from laying there, not eating, not taking her medications unless I stand there and force her practically, and it is taking its toll on me in every way.... but I have just had to come to the place this week to realize that is NOT my "MOM" there, but just a "shell" of the person my Mom once was... 

her mind, and all is "not my own Mother anymore" and that is very difficult to deal with. I had to forego my neck surgery, which now my lumbar spine is getting worse, and even sitting here is causing my hips and legs to hurt and my feet to go to sleep from the nerve issues. My pain level just as I told her is HORRIBLE BUT I still HAVE TO GET UP, NO MATTER HOW BADLY IT HURTS AND KEEP MOVING! I cannot have the luxury of lying around, and doing "nothing"..... whom else will do it if I don't? Anyway, I "think" the main woman to evaluate her is supposed to be out today, but I have NO CLUE for sure if or when she is coming. So, I am trying to find that out. I am not rushing over there early this morning if no one is coming, because Mom will NOT be up to even know I am there if I go too early..... so continue to keep your prayers and thoughts coming... Love all of you, Rhia

BY THE WAY, I found out, that a "nursing home" can cost as much as 4160.00 A DAY after the 1st 20 days, so that means $12,000.00 a MONTH for someone to be in a nursing home! how Insane is that??????

Hopping Over the Hurdles of a small town, with no shuttle to Dallas to get there for surgery more on the Horrors of Dementia & A Parent

This may sound like a ridiculous question to many people, but what do people do like myself, that live in a small town, and have no really "close" relatives, and need to be taken to somewhere like Dallas to have surgery, or a procedure done, yet they don't have a "spouse", or anyone they can call upon to do so? Sure, if I lived in Dallas, I could probably find some type of shuttle service, or at the very least take a Taxi, etc.... but unless I am just not informed, I gather there is no type of shuttle here in our community that does that type of thing? So, are there people out there that will do something such as that, drive a person for a day surgery, or for a test of some type, or to a doctors office, that for some reason they are not able to drive themselves? We must have someone around here that does that and charges a certain amount to take you and bring you back home. My son can't get off work, due to him having been off himself for an arm injury so he can't get off this next week on Wednesday, of course my daughter is 8 hours away, my Mom, well even if she was OKAY, Mom could not even drive me across town when I had double pneumonia a couple of years ago to Urgent Care...

I was "too sick" to drive alone, so she came over, and I had to drive us there, and then drive myself back home, and I have no other "relatives" or people that can do something such as that. I guess it would be something someone in our area should consider. Because there has to be more people than myself that wind up in this situation. And of course even if I "felt like" I could drive home, there is no way, no how my surgeon would ever, every agree to that, especially it being neck surgery, and I will have a cervical collar on... Any thoughts from any of you? I know there is "Uber" in the larger cities, but I am sure we don't have anyone here that would drive anyone from Ennis to Dallas and then back to Ennis.... I've just about taken all I can...

I've put this surgery off, and thus that means my lower surgery has been put off also, and now my fingers are numb all the time, I can barely turn my head, and my lower back and legs continue to hurt like hell... I guess I am going to have to go and have my pain pump medication increased, which I did not want to do.... and then like today, I go to the market for Mom, I take food over for her to choose what she can eat, well, she never said a word, just mumbled a couple of times, "nothing" I guess it what she said... so I put stuff up, cleaned out the fridge, took out the trash, put up the clothes in the dryer, happened to have ran into the gentleman that does my Mom's lawn work, and found out she did no pay him from last time, so I told him to go ahead and cut the yard again, and I had to pay him for that... then I had to fold laundry, get her medications together for the next week, pick up her scripts from the pharmacy, clean up what she had left out give her a new glass of something to drink, take her an Ensure that was cold, and by that time, I went in 3 or 4 times, and she never said a word...

I had asked like 3 or 4 times about eating... so when I finished, I gathered up my stuff, and just came home. I am totally exhausted, and I got to thinking, I am a main, a cook, a grocery shopper, a car detailer, a trash person, I do laundry, I "exterminate" for ants, I vacuum, dust, sweep, fix her meds, make sure she takes her meds ... and the list just goes on and on,.. a bill payer... an accountant... chief, cook and bottle washer... and you know what... I am totally exhausted.... so I am headed to the sofa to watch a movie, and then will get dinner ready here in a bit... I am just so disenchanted with it all... and I "watch" and see everyone else "living their lives"... and mine seems to "not be of my own"....


Alas, I am just going to have to postpone it again, and I know my Orthopedics Surgeon's office is going to throw a fit. I've had to postpone it twice myself already, and he postponed it once due to some thing that came up for him. So, they also at times suddenly postpone at the last minute. But, I am just going to have to let his assistant know that this time rather than trying to "reschedule" in a month or two weeks etc... to wait, and I will call them back to reschedule once I can "set in stone" find someone to take me to have the surgery and bring me back. I do not want to do this again. It is difficult on them, and it is difficult on me, to feel "rushed and in a panic trying to find someone"...I even looked up in our area some type of "shuttle" service that may take me up there. I know my neighbor across the street goes in a shuttle frequently, but she is on dialysis, and I think they may take her to Dallas, but just a certain area. 

The only one here I can find, just does a shuttle in our county, and if I lived up in DeSoto or in that area, then the Star Transit could take me, but that is about 20 miles away... Anyway, I am going to have to make some very difficult decisions this week about Mother anyway. I am sick this morning, and the weather here is horrible. We were supposed to be "sunny" and no chance of rain... LOL... what a joke, the thunder and lightening woke me up around 6AM, and it is raining, and we have an electrical storm over us still. It is just a terrible day out there right now... I had to get the trash out to the curb and I HATE LIGHTENING... it struck my car one year while we were driving in an unexpected storm on a major highway, and it hit the antenna of our car, knocked it off and it literally FLEW over an 18 wheel tractor trailer, and it "stopped" the brain of my car! We were in a brand new car with dealer plates still on it! 

But it "reset" itself after about 15 minutes or so on the side of the road, but that was one of those "spring storms" that came up so suddenly we did not even have time to find shelter... we were fortunate enough to get under on overpass and had a truck driver in front of us and in back of us... and a tornado literally passed within a quarter mile or less right in front of us over the highway!!!! Cars were stopped for miles on both sides of I-35! It was a total nightmare! So, I am not a "fan" of any type of electrical storm or hail. I've had a roof ruined by that, windows knocked out in fact I still have a window that desperately needs to be replaced because it is just barely holding in with cardboard and duct tape now! But, I need someone to help hold the pane in place so I can get the "pins" in it to hold the glass in so I can put the glazing around it.... so again, until I can find someone to help, I am "SOL" as the saying goes....

 I was so totally upset over this past weekend, between Mom and some of the crap she pulled and said to me, and between not having any way to get to have my surgery, and my neck is getting worse... yesterday my fingers went to "sleep" on both hands and were burning and stinging, then by the time I got through the market, and got what I needed and picked up Mom's stuff, hauled it in her house, put that away, folded clothes and done everything there, put all of her trash out etc... then came home and had to put all of my stuff up, my hips and legs hurt so badly I wanted to cry! Now this morning, I woke up with a sore throat, and my glands are swollen under my neck worse on the left side... so I hope I don't have another infection...

I went over there this morning. She was "up" standing in her living room. No cane, no walker, and no emergency cell phone on her... so if she fell, there would be no way for her to contact me or anyone. So, I asked her what she was doing... and she mumbled "straightening" things up... and I just commented, well Mom everything should be pretty well straight.Then I went through the "laundry" list of things I did. I asked her if she had eaten... her reply of course was "No"... I went to put up some drinks I had gotten her, and there were items again in the fridge that did not belong, and she was just "fiddling" around with things, not really doing anything. 

I went and got her medication, put it in a small little cup, laid it on the table, and mentioned she did not eat yesterday and she replied, NO one brought me anything!...Okay, there I had been there the day before, brought in all of the groceries, asked her numerous times to eat or what she wanted, and I either got no reply or just a "no"... so I explained that I did come, and she did not want to eat, and she said I don't recall anyone being here... and I could tell, she was in "one of those moods"... so I finished putting up the drinks, and told her, her medications were on the table... and I said I see you must have things under control, so I am going home... and she looked at me and said. YOU have NO HOME!!

 I TURNED and replied Well, I guess I do, and that is exactly where I am headed... call me if you need anything. So, I shut the door and left. I am not feeling well today, I woke up with swollen glands under my neck, and a sore throat and the weather is cool today, and I was not about to stand there and allow her to "belittle" all of what I've done, since she just cannot recall what those things are... I called off my surgery and will reschedule a bit later in a month or so, once some things are not so messed up... but for now, as I told my doctor's assistant, until I can get a firm "way" there and back to Dallas for the surgery, and get someone to watch after Mom or see where all of this goes in the coming weeks, I did not want to reschedule, and then find out something is amiss again... Anyway, I am headed for the sofa... I just don't feel very well, and I just need the rest. I sure as heck cannot afford to come down with a "flare" or some type of infection right now.

Being Totally "Beaten down" by Life... or Lack of Quality of Life...

I TRULY feel HORRIBLE for even thinking this, but I am so disgusted, upset, resentful, and feel as if I have been a "prisoner" on a short leash for so long now.... 1st is was my own illnesses, surgeries, and all that came with the Lupus, RA, Sjogren's and so forth. Then, next was Jim's car accident. WE both felt like VICTIMS and felt TIED DOWN due to how severe all of his injuries were, and HOW FOR A LONG WHILE HE WAS UNABLE TO DO ANYTHING... and NOW IT IS THIS NIGHTMARE WITH MY MOM... I am trying to REMEMBER this is NOT her, and it is NOT HER FAULT, BUT TODAY I am just plain and totally "resentful" of what has been thrown in my lap... She talked to me as if I were a low life today, she accused me of "taking stuff" and Moving stuff... and told me "when she got home" some woman has messed up the whole house"... and I asked her "where she had been" and then she says < Well, at home!" and then I say well Mom where are you now? And she said "HELL I don't know"...

wherever you or some other "woman" takes me.... I "knew" sooner or later" due to her personality being much like my Grandfather's, that the "derogatory" part of her personality (for lack at this moment for a better term" would probably "rear its ugly head at me"... and today it did... and she was telling the "aid" today, that "whomever that woman is" she is mean to me... in other words, she has NO CLUE who I was, and furthermore, that I was her daughter, and I have been nothing but busting my ass to help her! She wants to refuse any help, she does not want the aid to help her shower, etc... she thinks she should never have to "shower"...

and I found drinking glasses in drawers in the kitchen, and things all spread around, that were NOT like that when I left yesterday! She does NOT recall getting up when no one is there, and she digs through stuff, and puts stuff where it does not belong, and then accuses the "women" or "woman" who comes by all the time of moving stuff and making a mess.... In less than 4 weeks she lost 6 more pounds! She just will "barely" eat when I am there, and even though the fridge IS FULL of things to eat, she will NOT get anything out and eat it... then she said it had been "days" since anyone came by to check on her... PLUS here I have this awesome opportunity to go to the Conference in Nashville, and again - I am a "prisoner" and can't even leave for a weekend!

 I am so fed up, and I have told her, and the nurse that comes by also told me himself, when the doctor finds out she is not eating, losing more weight than ever, will not get up and help her own self, will not do the work with the PT, and so forth... he is going to want her in a nursing home... I've cut the gas off to the heater, because she tried to turn it on... I am almost ready to turn it off to the stove.... I found out by "watching her" today... that it is NOT that she does NOT want to watch TV, she has no clue how to turn it on, or change channels... because I finally turned it on today, to make sure the new antenna was working correctly, and I could tell her has no clue how to use the remote.... anyway I apologize for seeming "hateful"... but I am "tired of" my own life always "on hold" because of something, either my own health, now this issue with her or whatever it is, comes along and rips out the parts of my own life I want to live.... I am 56 years old, and after already suffering a heart attack at 40, then being told I would NOT survive another, so I moved away to Seattle, in order to get away from whom was "killing me" in a matter of speaking, only to have other illnesses bog me down, surgeries one after the other, then the massive and horrid car accident with Jim, and now this with Mom... I have survived a 2nd MI when I was 50... but you know I would LIKE TO HAVE SOME KIND OF LIFE, before I am TOO old or TOO ILL to enjoy it! Sorry all of you, I am just in a spot of being knocked down that damned mountain, and feeling battered and bruised... and I am not sure I can climb again....

Decisions - Of ME Wanting to Attend an Arthritis Conference, Neck Surgery two weeks before, and dealing with my Mom's Dementia and absurd behavior... at times... I need suggestions

My internet has been down most of last night, then I turned my computer back on this AM and I sill did not really have but "off and on" internet until about an hour ago... so I have stuff I have to do for Mom, BUT I NEED SOME ADVICE or some suggestions etc. Mom is of course STILL not the best... and even the "Home Health situation" IS NOT really going well, but because of HER - she does NOT want to cooperate with them, and if she will not allow them to do their jobs, then she will not get better, and I told her that yesterday... so she "acts" like she cannot get up, but I made her walk to the bathroom about 20 steps away from the bedroom yesterday AM...

 THEN she really would not eat much, so I had to go back over the PART TWO EVENINGS, and make sure she eats something... anyway, as you see below, I have this wonderful opportunity to get to go to Nashville to this Conference, and I am so totally elated... I applied for the "Travel award" a couple months ago, & never gave it a thought until I got a phone call last evening. So, that is going to be MAY 20-22nd - Friday thru Monday... and I am so wanting to attend... but I have to figure out a way to get someone to at least check in on Mom from at least Friday afternoon, thru sometimes Monday, one time a day will probably be fine... SO does ANYONE KNOW OF ANY BODY who does this type of thing? If you do I would love to have someone let me know who does, the expense etc... and I am sure that my pups will be taken care of by Samantha my dog sitter.... 

BUT I also have the neck surgery scheduled on May 4th which is just over 2 WEEKS after surgery... of course I will still be in a cervical collar for 6 weeks, BUT the only thing I see is to make sure I get up some, move around, and even wear compression stockings due to blood clots that soon after surgery... that sometimes riding a long ways in a car or in an airplane can bring on... and I apologize for "not talking" much this past over a week. I had promised to call someone and I have just been in such an overwhelming, overwrought, and almost "maddening" place emotionally, that I just cannot make myself talk on the phone at the moment. I really needed to straighten some things out in my own head, and think things through... lots of things happening, and needing to be done... so that is where I stand... any suggestions would be deeply appreciated! Rhia

Update of My Daily Newspaper - and also an "Update" on just how Insane" a disease like Dementia /Alzheimer's Truly is.....

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

It really DOES for the most part have many articles and information relating to our AI, RA,FM,Chronic Pain, Lupus and so forth, because am able to "pick and choose" what types of information is printed in it daily. So, I have chosen the specifics of what I know many here are dealing with. 


Now I have added "Dementia/Alzheimer's" to the "pot" of things that bring in articles. Never would I have ever in my life thought that about 9 months ago, my own Mom would go from doing her own grocery shopping, driving to church, doing her own house work, cooking, and I just helped with other things... to NOW... she at times does NOT even know WHO I AM, nor that she is in "our home". She cannot go and fix much to eat, I have to make sure she eats, drinks and takes her medications properly. She cannot shower or bathe herself, she cannot clean her house... and she has not driven her car in over 2 months maybe longer, nor been to church... she cannot "operate" her oven, stove, washer or dryer, and honestly the phone (regular home phone) she at times does not know how to use it... she stays in bed more than not, and the list just goes on and on and on... of what in such a short amount of time, not just "mentally" but physically incapacitated these illnesses can be... 

I am of the belief she has a "certain" type that unlike many, starts gradually... and for a couple of years there were "signs" but to go down hill so quickly. It is a "fast type" of dementia called Creutzfeldt-Jakob Disease .... honestly I hope and PRAY I AM WRONG, because usually it comes quickly, and they pass away pretty soon for the most part, and I am wanting my Mom to go with me like we did just about 4 MONTHS ago to the Casino overnight!!!! She "cut up" her players cards and said she would never be able to again... plus she went from no cane and no walker, to a cane, and within weeks to a walker... and we have to watch her, she now has problems with balance and is a huge fall risk... she has not clue how to pay a bill, she does not even go outside, check the mail, or anything, but due to her falling right now it is best she does not go out... she has several steps down in the front to go down... 

I am totally exhausted, worn out, drained, and in almost a "state of shock"r" for the lack of a better term right now, mentally, physically and emotionally now... I have to go over every day and really should be there more, but I have of course my own home, my pups, and me to take care of also.... WE NEVER KNOW!

Brand New Clinical Trials Sponored by Cure Click One New for Rheumatoid Arthritis and Osteoarthritis, Cushings, CLL,COPD, Pediatric Asthma, Diabetes Trial Search, Alzheimer's & More coming soon!

I want to give out the great news to all of you who suffer from RA and Osteoarthritis! There are two new Clinical trial Studies, for each of these horrid illnesses.

The Information is below, and will also be on my pages of my blog around where all of the other great clinical trials are. Actually several new ones have been added just in the past week or so, including  Chronic Lymphocytic Leukemia (CLL) including a new video link below, Pediatric Asthma, Diabetes Universal Clinical Trial Search, and still there are ones for COPD, Cushings Syndrome, and Alzheimer's Mild to Moderate.

There are also upcoming new Clinical Trials very soon on other very important illnesses that plague our nation, and the world..

So, below are some links that you can go to, and find out more about whether the clinical trial is in your area, if you qualify, and also spread the word to others who maybe interested in some of these. Many people find they are better, some even "cured" by certain clinical trials, and most cost the patient nothing, and in fact many also compensate the patient for their time, their gas money and so forth. So, please take a look or pass these onto others you may be thinking would benefit!

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Another Week of an Elderly Mom, some type of "Dementia", me trying to cope and deal with her, and all of my severe pain, and missing surgeries, and doctors appts because she is ill....

I am MOSTLY on the sofa today I HOPE! This has been another week of hell... to say the least... Mom "seems" to do better on the days I go over there... but yesterday I was trying to get my yard down enough so with this rain it would not get any taller than it already was.... so between my cordless weedeater and my cordless lawn mower it was even hell with all of the weeks and it still being so wet from the humidity... I cleaned out from under my mower at least 4 times trying to clear that mess out from under it... but I got "most" of the tall stuff back and front down for now... I am paying for it today... and have been paying for it all week... I NEED THIS NECK SURGERY and now I KNOW I HAVE TO HAVE THE LUMBAR/SACRAL surgery also... I keep "putting them off" because of Mom mainly... until I know that the Nurse, and the Home Health is going to go over, and she is getting one meal brought to her daily... I feel I cannot go through with the surgeries... I feel she does NOT even grasp that I will be "down" for at least 2 weeks, I should not drive, even though I will probably have to around town... after a week, but that means I can "barely" take care of me and the pups, and I will NOT be able to lift anything heavy, or be taking lots of stuff over to her, or be able to go over there every day, for at least a week or so... after that, then I still will be in a neck brace at the very least 6 weeks maybe longer because this surgery calls for taking OUT all of the "hardware" he put in , in 2012 and redoing it plus the new issues with discs compressed... so then he also is calling for some type of "bone growth stimulation" which I gather he means on the outside, I will have to wear because due to my osteoporosis, the RA and Lupus, he fears I may have further issues with my vertebra and getting all of that to fill in and heal... which takes 6 months or longer for "my own bone fragments" to heal in the "cage" they put in and if they have to use "other types" it may take longer.... I rescheduled the cervical neck surgery for May 4th and unless something horrid happens I HAVE TO HAVE THIS SURGERY NO MATTER WHAT! I will be "well enough" to go down to Corpus Christi to what my Granddaughter graduate, and hopefully stay a day or so, then come through and stay in San Antonio for a night, and see the Riverwalk before heading home... I will have to see how well I am feeling.. with the 1st neck surgery I felt GREAT even before I left the hospital, all of the pain in my shoulder blades and down my arms was "gone" almost right after the surgery, I can only hope I do that well this time... that has been 4 years ago, and lots can change with a body in 4 years.... anyway, 

Mom is NOT EATING! In fact, I got PISSED at HER yesterday! I told her if she continues to LAY IN BED, NOT EAT, NOT DRINK (AN NO CARBONATED ANYTHING), and NOT think she can live off of Ensure, and get back to eating some, supplementing it with the Ensure, and begin to move around some, that her "bowels" (which is what she keeps griping about) were NOT GOING TO DO RIGHT! Plus if she continues to NOT TAKE HER MEDICATIONS, she will NOT be well, or feel well. So, I MADE HER TELL ME SOMETHING SHE WOULD EAT... and I went and got the chicken strips (although fried anything she would put in her system), mashed potatoes, and a roll... plus I brought her LARGE GLASS OF UNSWEETENED TEA, and told her she needed to drink ALL of IT! She is also "dry and dehydrated which does NOT help either... she cannot expect her stomach NOT to hurt, if she puts NOTHING in it, and for her intestines to "work" without getting up moving around some and taking her proper medications... when I ask her if she too her meds... 

I get this answer "Well, I took something"... NO she took NOTHING of her regular daily medications, they were in the pill box on the table! Plus she is drinking milk, which Mom NEVER drank milk or ate much of anything with "milk" in it.. SO I TOLD HER SHE COULD BE LACTOSE INTOLERANT" and may not even know it... because up until the past month or so, she never ate much cheese, never drank milk, never ate much of anything other than breads, bisquits, etc... other than that not much dairy stuff... and if I take her to a doctor he will basically TELL HER THE SAME THING I AM SAYING... she has to EAT some, TAKE HER MEDS AS SHE IS SUPPOSED TO, get UP and MOVE, and quit laying in that bed 24 hours a day... and LAY OFF THE COLA'S AND THE MILK... 

I told her to drink water, drink "green tea" some, but nothing dairy, and nothing carbonated at all, no coffee, nothing with caffeine in it, and continue to drink the ensures but EAT WITH IT! Anyway, when I left yesterday afternoon, she had taken all of her medications, she DID EAT SOME, and of course she can't hold a lot at a time, because she is NOT eating.... and she was drinking the tea, I left a pitcher of water and a glass there, and gave her one pain pill. 

Then I told her after that pain pill begins to kick in to get up and quit laying down all the time... to at least move around to the kitchen, get up and sit in her chair in the living room, but MOVE AROUND SOME... and today through the next several days our weather is supposed to be HORRIBLE, THUNDERSTORMS, FLASH FLOODS, HAIL... no telling what from today through at least TUESDAY.. so I told her I was NOT well either, I've been in pain, unable to sleep, my stomach is not the best either, but mine is nerves and stress more than anything, and the nurse and the aid are supposed to start next week, but I prefer they not come until our weather is a bit more stable after Tuesday or so... I will NOT get my car out in possible hail if I can avoid it.... anyway, I had to get all of that off my chest., it hurts so bad to sit here and write dammit, and I need to write and do some things online, but it is hell for me to sit here very long... keep us in your thoughts and prayers... it is going to honestly take a "miracle" I think for her to get "better".... Hugs, Rhia

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

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... 

 

 

 

 

 

 

 

 

 

 

 

 

 

UPDATES ON MOM, the Dementia, Home Health Care, MY CERVICAL NECK SURGERY COMING APRIL 13TH, and EVERYTHING ELSE.....

I wished my "mind" would rest, but I just cannot stop thinking about what ALL has to be done. There is so much to get done for Mom, but also my own stuff, it seems endless. To add to that, I have not felt the best myself, my night terrors are just horrible, and I have had a headache from hell now for at least two days. I know my doctor told me I had a sinus infection last time I was in, and he put me on antibiotics, but at night I wake up so stopped up I cannot breathe. I have to use some nasal spray, and then I can try and get some sleep, but I feel like I am suffocating. I know part of it is this stupid weather.... 

 

we have had NO winter, and now one day it is almost too hot, then the next, like yesterday and even today, it is very cool... it is sunny, but we have had rain for a couple of days now, so my back lawn HAS to be mowed before it gets too tall for me to do it with my new mower. But, our mornings the dew is so heavy it is like rain. So, there is no way to mow it, until later in the afternoon once it dries out.,.

 

I have to go and get Mom a microwave today, and I need a few things, so I have to go do that first, and then I guess I will try and get this back yard mowed... I am also trying to knock down some of the taller grass on my back lot before the city starts griping and then I will have to pay someone to come in with a tractor to mow it... I had gotten some of it down and then sprayed the weed killer on the weeds, so I had it kind of coming under control. Then of course it rained, and without the sun, now it is getting tall again, and I still have not had time to get the people that may get these bees out of that old piece of bus back there... so it will be hard to find anyone who will help me try and get that back "forty" as I call it cleared and cleaned up... I have so many dead trees, and limbs and the grass now is getting too tall, plus my neighbor never got all of his crap from the goats and chickens he had back there before he had to take the goats somewhere else... it was so nice with them back there they kept the grass, weeds and even all of the trees trimmed for me...LOL.. 

 

They would stand on ther back legs and reach up into the trees as far as they could and eat the leaves out of them, so even the trees stayed nice and trimmed back there... anyway, I hae been trying to do a couple of things here I needed to do at home, and now I am going to take my meds, eat some cereal, get dressed and go and see if I can get that microwave and pick up the other stuff I need... then I have to go over to Mom's and check on her... get her medications reorganized, and see how she is doing... she was in bed again yesterday when I went over, and I gave her some of her pain medication for her back, and got her the phone, some water, put some Ensure on the nightstand, and left everything that she needed and came home. I have not talked to her this morning yet but I had to apply for a new insurance card, SS card and her Medicare Card... somewhere down the way she LOST those in the past week or so... I cannot find them anywhere, so I got that done this morning... but I still have to go to the post office, with the form I filled out and her Drivers License and Birth Certificate to get her SS card... I thought I maybe able to do it online, and could everything else, but not the SS card yet... in some states you can order it online now, but TX is not one of them yet... anyway, thanks all of you... I need to get going... I HOPE TO BE A BIT MORE SETTLED TOMORROW SO I CAN CATCH UP HERE, ON MY BLOG, MY NEWSPAPER ETC...

 

I am so far behind on my advocacy work, blog, and everything... I am just frustrated I cannot find time to do my own stuff... and I am supposed to have surgery on my neck on April 13th!!!! I just do not know if I will be able to... if we get HOME HEALTH coming out for MOM by then, MAYBE I CAN HAVE THE SURGERY, but I MYSelF MAY NEED HOME HEALTH HELP AFTER THE SURGERY FOR A WEEK OR SO... I will be in a NECK BRACE 6 WEEKS! And I won't be able to LIFT, BEND ETC... until that begins to "heal" which takes at least 6 weeks for it to begin those BONE GRAFTS TO BEGIN TO ATTACH TO ALL OF THE HARDWARE IN THERE... OMG YOU SHOULD SEE ALL OF THE STUFF HE TOLD THE INSURANCE COMPANY HE HAS TO DO TO MY NECK... HE HAS TO TAKE OUT THE OTHER HARDWARE, AND TRY AND FUSE THIS OTHER DISC, THEN PUT IN NEW HARDWARE TO HOLD ALL OF IT IN PLACE... so this is really much more complicated than my 1st one.... plus my lumbar spine is giving me fits also, so I know I face having that surgery also... Hugs to all of you, Rhia Steele "All things Autoimmune"

Elderly Parents, Alzheimer's, Dementia, Falls, ER's, and so forth....

Please continue to keep my Mom, myself and family in your thoughts and prayers. Things are just getting worse. Mom was on the floor when I got there yesterday, she had fallen and had been laying there for she said 2 hours. She "thought" she tripped, but I am not sure that is what happened. Thank goodness, I had the paramedics come out, and we did take her to the ER to be checked over. She had a bump on her head, and was complaining of her neck hurting, and being of course "sore" all over... nothing showed to be broken, and she has a couple of bruises, and a couple of small "wounds" but nothing bad enough for stitches. This situation is just getting worse by the day. I was there on Sunday afternoon, and her medications once again were all mixed up. I had just had them all correct in the pill box for 7 days on Saturday. So, I got there and found Sunday, part of them "moved" around, and 3 or 4 days of them "missing"... I explained again, about that she cannot take 2 or 3 days worth of medications... or NOT take any at all. But, I honestly do not think she "gets" any of it. She was so "out of it" Sunday, I was extremely upset and concerned when I left there. But, I also was not feeling well myself, and I am dealing with my own pain pump NOT set correctly, and I am not sure what the hell is going on with my own pain doctor, but he was "off" himself week before last when I went in to have it refilled. He had the settings "way off" and I wondered why my pain was still so bad. I knew we had not gotten it all the way back up to the normal range that he old pump had, simply because we did not want to overload my system with too much all at once, but it is definitely NOT near being correct. Even the 3 boluses I take daily are set at 0.1 and should be (1.0)!!! So a HUGE DIFFERENCE... and I had been taking I guess my oral medications a bit more than usual because I have been compensating for the pump not being set correctly. Anyway, I go in this afternoon, but not until 2:30PM which is so late in the day to have to go to Dallas and then get out of there before rush hour and try to get home... plus MOM has STILL NOT GOTTEN ANYTHING FROM THE MARKET, and that is what I was supposed to do yesterday, until I got there and she was on the floor. Then I was really pissed at the ER. They NEVER CAME IN AND TOLD ME ONE THING. THEY REALLY NEVER ASKED ANY QUESTIONS OR TRIED TO ASK ABOUT OTHER HEALTH ISSUES, and in fact I DO NOT THINK ANY DOCTOR EVEN SHOWED THEIR FACE. 

There were two women, one of which I knew was a nurse, and she was not pleasant at all, and then another woman, who possibly was a physician but I did not know and she never said so. They did not ask me any questions, and I had left when they were taking her for the CT of her neck and head... the girl told me it would be 45 min to an hour before they would have the results, so I needed to run home, and check on my pups. 

I did not know I was going to be gone that long when I left the house, so they needed to be checked on. By the time I got back to the hospital no more than 25 minutes later, she was DISCHARGED and sitting in a chair, and they were trying to call me to come and get her!!!!!!! Again, no word from a doctor, no questions, nothing... they barely got a wheelchair to bring her out! And at the time all of this had happened at the house, she was not able to stand up by herself... so needless to say I am NOT pleased with anything I saw, and even the paramedics were not all that "pleasant".... 

I won't go into details, but basically I called the regular phone number and not 911 because I did not consider it a life or death emergency... Mom was talking, breathing, not screaming in pain, but she was not able to get up and she was complaining of her neck hurting... so I call the regular ambulance line... well when the paramedics got there and I met them outside, and told them she fell etc... and one of them said do you want to take her to the hospital? And I told him well if something appears to be broken, or she is not feeling well or in pain when you get her up, then yes, BUT, if she is able to stand up, or not complaining of pain then maybe I will not take her to ER but call her doctor... and he got about half smart with me and said well then why did you call 911? 

And I told him I DID NOT CALL 911... I called the regular ambulance number so if they from there made it sound like it was a 911 call I cannot help that... anyway, I did not get home until 4PM or after and I am mentally, physically and emotionally drained, even this morning... 

I have to get a home health care nurse set up to go out and see her when I am not there, or in between me being there, because I can't be there 24/7 and even though I go everyday, or call if I don't go, someone else needs to come in and check on her, her vitals, make sure she is taking medications properly, and so forth... I don't think she is eating properly... and there is just lots of stuff that is just not right, and this has happened way too fast... within 3 to 4 months she went down this quickly.... anyway, I have to get her stuff done this morning and then get myself to the doctor in Dallas this afternoon, and I hurt from head to toe... so again keep us in your thoughts and prayers.... Rhia

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more...

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more... A cry out for answers, as I wade through this monumental amount of research and searching I am doing!!!

 

 

 

I also would like for anyone that has dealt with a loved one, or someone close to you who would know about a "fast type of dementia" or Alzheimer's and so forth. This situation has went from mild "memory" issues, and forgetfulness, to telling certain "stories" I felt may not be entirely true. That was about 2 to 3 years ago... as I watched I began to see worse issues, could not keep up paying bills, making doctors appts, and many other things that were "off"... Then about 6 months ago, it went nuts....

 

 We went to losing 2 different credit cards THREE TIMES within a WEEK, not "recalling" how to put a car in "drive" or reverse, not able to turn on and use an oven that has been there and fine now for 12 or more years, either taking TOO MUCH medication, or like last week DID NOT TAKE ANY MEDICATIONS, stays in the bed till noon now, has not watched a television in 6 months and used to watch daily. 

 

Not eating anything healthy, just junk basically, cannot even make out a check correctly, fill in paperwork of any kind at all by herself, losing things, cannot remember after being told 7 times within an hour what the "day" was, which was Tuesday, plus that information is ALWAYS ON A CLOCK, WITH THE TIME, DATE, DAY OF THE WEEK, MONTH and even temperature on it. Never realized it was "time to change the clocks", suddenly cannot "dial my or no one's phone number correctly, most of the time), now is complaining and has been lately, of not just having issues with going "Number 2" toilet wise" but is "obsessed" with "toilet habits, and I "think" I am came to understand now, sometimes just does not know they need to "go", so there are now "accidents"..not going to the restroom when they should, cannot recall "talking to me" later on the same day she called me, and not recalling what she even said. Has no clue most of the time about naming "objects" or rooms, etc... at least 85% of the time... not recalling even the month it is... these are but a "few" of the many, many things I've seen over the past about 4 to 5 months with my Mom. And it leaves me with "all kinds of issues" that I have to get her to talk about BEFORE things are too bad and her memory is so much worse...

 

 I almost think I can add "hallucinating" maybe at times...I know a doctor told me that sometimes when someone has one of these illnesses, and they "forget", they just kind of "make up

" and fill in the gaps with something that can remember... so it will make sense to them and everyone else or is supposed to.... 

 

PLUS from another post of mine today! :) 

                                HELP NEEDED ON THIS also!

 

 

I have several issues going on, a NEW ONE is the Honey Bee's in this old piece of bus in my back forty, behind my house! They had built there before then went away, and now they are back again making a "hive" and swarming a part of that old bus. 

I also WANT TO GIVE that bus to anyone who wants to take it, and sell what is there for scrap metal. Plus there are lots of downed trees, or some that would be easy to get down, and some of it is pecan wood, so it could be someone may want some of these dead trees and limbs... plus I Know I am going to probably have to PAY someone to bring a small tractor in and mow that back "forty"... with all of the rain, and such, I've tried to knock some of it down, but now with the bees on one side, and as tall as the weeds are getting, even me with the weed eater yesterday, 

and got some down, some I have already sprayed with weed killer, and still I feel the city will be by wanting me to get it mowed down... so there is a large enough gate on the back of that property where a flat bed trailer, or small tractor can get through with no problems... I have some trees in my back yard, one in particular that needs to be cut down, again, several are dead, and I have gotten a great deal of the things off of it I can but I cannot reach much of the tall stuff, 

plus I don't want to try and stand on a ladder to try and cut more off of them.. so I really want to get rid of the bees and the old bus, plus all of those old trees and limbs, and get that back lot mowed where I can keep it under control.... PLEASE anyone YOU MAY KNOW, OR WILL DO THIS FOR A REASONABLE PRICE I WOULD APPRECIATE IT... JUST Message me here and we can go over details thanks, Rhia