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

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

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

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

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

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

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam

 

 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 

Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

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

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

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Pics of my Home Made Kolaches! NOt as Pretty a my Grandmother's but they Taste Good!

Wishing Our Nation A Happy and United Memorial Day - Nevver Shall We Forget Those Who Keep Us Safe and Free

May We ALL REMEMBER Each and Every Life that is Given and Shall be Given So We Can Continue to Walk in Our Nation and in Our Towns with Freedom's so many do not have. Even though All of the Darkest Times in History, We have Remained FREE! Let's Hope that shall always be for our Children, Their Children and the Others that Shall Follow in Greatness!

Wishing each of you a Happy, Safe, and Wonderful Memorial Day Holiday, From Sea to Shining Sea!

Hello From Ennis - The Home of this Year's 50th Polka Festival that is an Annual Event!

CELEBRATING 50 YEARS OF ENNIS TX WHERE THE ONE AND ONLY NATIONAL POLKA FESTIVAL HAPPENS!!!!!

 

 

Czech people know how to celebrate, dance, eat, and enjoy all the realms of what Czech the Lifestyle that continues to come down from one generation to another. People from all over the USA, as well as Internationally come each year to our small community and Celebrate with the BEST Barbeque, Wonderful Klobase' (an awesome sausage spiced with black pepper and hand made by many still in our community), Saurkraut, Kolache' (a special light pastry with sweet dough and fillings in the middle such as Apricot, Cream Cheese, Poppy Seed, and many more choices of fillings, as well as our own special way we do new potatoes and parsley, green beans, and more... and of course we cannot forget the Beer! 

 

The Polka is known by just about everyone from the time they can walk, and the colorful costumes are a delight... some so very intricate, some hand made here and in the "Old Country" as my Mom would say... It kicks off every year with a huge parade in the center of town, lots of activities for young and old, even dancing in the streets, some of them still the old brick, many hand made crafts to choose from, plus the Halls The KJT, Sokol Hall, and the KC Hall, along with others all have food, dancing music and beer.... 

Home Care for the Elderly, Hospice, Choices that are difficult to make for all of us with elderly parents suffering from all of these types of Dementia's

Here are a couple of links that maybe helpful to some of you also.....


 https://www.homeinstead.com/742

http://www.caregiverstress.com/

These are the people that are going to help me with Mom and this way I can possibly keep her at home, and not put her anywhere else... I found out thought that they are like an "in home" adult day care not "true" Hospice. When you go into the "true hospice" scenario, then Medicare pays 100% of the bill BUT, no longer can you see "your own doctors", your medications are taken care of by them, and basically they take over all of it, and I can have the choice, say Mom came down with pneumonia, and needed to be in the hospital, I could stop "Hospice" immediately so her own PCP etc can take care of her, then restart it after her being in the hospital. 

I was kind of taken back when the Home Health Nurse told me that they could "no longer" see her if I went to Hospice, when the woman that came and spoke to me about "Home Instead" said that I could keep Home Health and have Home Instead here also. That is because they do not "take over everything", they provide more help as far as staying with her in the home as many hours as I want a week, day etc... 

they will help make sure she eats, has something to drink, does not "fall" again, can change sheets, do light laundry, and even run to the store for her, if something was needed, or say I come down and I am too ill, or when I have surgery, they can fill in and do all of their part staying with her, when I can't go over during that time... which is WHY the woman I talked with from a true "Hospice" ran by Medicare said in the 1st place they would "probably put her" in one of the "homes" NONE of which are even located near me! And basically it is $3,000.00 a MONTH! or more depending on the place, and she was more of a "sales woman" trying to make me spend Mom's money to put her somewhere than trying to do what I want and need at this time, and that need...

... someone to be there a few hours a day, a few days of the week, so she is being seen about, like I feel she gets up and falls when I leave... so sometimes in the late night or early morning, that is when this either falling, or she spills things, does not drink her Ensure, or eat... after I leave... I can pick the times, how many hours a day, how many days of the week, including weekends if need be that I need these people... again all here at her home NOT in some "nursing facility"... and they are very well trained... and have monthly updates and training meetings, so they are very versed in "dementia" Alzheimer's type of care... 

Anyway, I HAVE to get someone in ASAP! After her being on her knees by the bed, wit all of the sheets and everything pulled 
After and then she could not understand I just needed her to put her feet under her and push a bit, and we could have had her up on the potty chair, BUT, she holds onto things like the bed, and then she can't "get" to put her feet under her. I even noticed when I had the fire guys come in with an "assist lift" rather than allow them to just lift her and sit her down, she was trying to hold onto things making it difficult for them to put her where she needed to be.... I am also going to buy a bedrailing... 


I am checking on that today in fact. I believe I can get one that will fit on the bed, and now I am also putting her in the middle of the bed, and not allowing her to stay at one side. Plus I am going to look for a couple of "sippy cups" for her drinks. Then I can put the big tray I have on the bed where she is, and things will not spill... plus then things will be within her reach... I feel she does not even know to "look" at the nightstand and "see" drinks, Ensure etc are there.... I am just exasperated with the entire ordeal.... never in a billion years did I think things would be like this.... Life can deal us a heavy hand of no good cards at times for sure....


OH and by the way, MOM IS RUNNING OUT OF PAIN MEDS FOR HER BACK! She is on an Opioid but not something extremely strong. And she had not been really having to take them all that much, until this dementia has put her more in the bed etc. making her back worse... BUT I CALLED THE PAIN DOCTOR... told them the situation, that Mom cannot barely walk down her hall way, even with her walker, there is no way, I can get her out of the house, down stairs in the car and take her up to Dallas for a check up.... 

I just know I cannot even get her to sit in the living room for the most part, much less put her in a car and have her try to get into the doctors office for a visit! BUT he REFUSES to give her a refill (even though she has not had to have a refill since February) without HER COMING FOR AN OFFICE VISIT!!! It is insane and OUR CDC AND CONGRESS AT WORK DAMMIT!!! So, I told my PCP about it yesterday ( I am still in a very bad Lupus flare with a severe headache, and hurting all over) and even HE will NOT prescribe them and he KNOWS FIRST HAND what is going on!!! She is going to run out by next week and what do I do from there????? She is already unable to "move" without screaming out in pain, if we try to get her up and moving, unless she has a pain pill and it begins to work.... so this is just another bunch of crap to pile upon my shoulders.... and they wonder why "pain patients chronically ill" give up and just die... I feel they want us to... I am just livid about the entire ordeal.... 

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FINALLY, A Beautiful Day, more Wondrous than I have had in literally months and months!! Family, time away as a caretaker, as a patient, & feeling somewhat "normal" for at least a day or two.....

FINALLY WHAT IS AND HAS BEEN AN INCREDIBLE DAY IN SPITE OF LUPUS, RA, SJOGREN'S, DEMENTIA, AND ALL OF THE OTHER HORRID DISEASES AND CHRONIC PAIN!


This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda  and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :)) 


She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her. 

The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia

 LOL!!! For some very Odd reason this just seemed like the photo to publish!