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

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


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

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

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

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


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

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

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

http://www.alzquilt.org/

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

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

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

 

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

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

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

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.... 

One "Mixed Emotional" Mother's Day tomorrow.... And A Happy Mother's Day to ALL Mom's everywhere!

HAPPY MOTHER'S DAY TO ALL "MOM'S" 2016!

Tomorrow, Our Upcoming "Mother's Day" will be one of the most difficult Mother's Days to remember. As the overwhelming realm of mixed feelings, thoughts, emotions, all surround me, I am just at almost a loss for words today. 

 

My "Mom" once again did not know who I was today, nor yesterday. I got there, and she told me she had "company" yesterday afternoon and I said you did, who? She said " I am not sure" and then I asked her if she let them in the house, and she said, No, they had a key, I guess.... Well, the "company" that visited yesterday afternoon was ME. I brought her some chicken nuggets and fries for dinner around 5PM yesterday, so I asked her if they brought "chicken nuggets and fries"? She said, well, Yes in fact they did... 

I did not now whether to sit in the floor and cry, or sometimes when she "does not know" my as her daughter, I will say, Mom I AM your daughter.... yet it is difficult when I am sitting in the middle of this every day, 7 days a week, and when I am not there for those hours I go, then I worry, maybe I should not leave her, BUT, I am totally drained, exhausted, and my own pain level today is well over any "10" 

I realize my neck and lumbar spine are continuing to get worse, AND all that I am doing is not helping.... BUT she is my MOM, somewhere inside there she is my Mother, and I swore I would always take care of both my parents no matter what... so "Happy Mother's Day" to ALL of the MOM'S, Grandmother's, "Son to be 1st time Mom's" and the many that are "active" in being a Mom in one way or the other... I bid you peace tomorrow, love and hope.... and even when there is just a "shell" of a Mom you once knew, remember SHE is there always in your heart....

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....

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

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