This is our first visit with Mom after her stint at St Clair, aka medicalhellonearth, and my stomach crisis that sent me to the ER etc etc. Today I think I'm mostly ok - didn't have to add any pain meds, so that is goodness, and exhaustion turns to nervous energy when I feel "unheard" in the system or inneffectual or both - crap - if you could have seen the raw skin where they strapped her in her bed - actual restraints. I know at WSH restraints, physical, or via medicine is to be avoided - although I'm sure there are extreme cases where they must go to that dark place.
If our State government chooses to impose certain guidelines and limitations, which strongly frown on Medical Facilities, specifically dementia (aka alzheimer's) patients, to restrain any patient against their will, such as tying both legs and arms to the bed, instead of trying other techniques such as attempting to redirect certain behaviour, and to make and take time to try to understand the reasonfor the patient's unpleasant behaviour. Even Medical sedation is discouraged.
Homeplace also mentioned that part of their inability to get Mom's medicines in her system, was because they weren't allowed to "force" food, or "force medicine". IMO a part of their problem was being understaffed. HomePlace had one RN for 45 residents! This meant they didn't have anyone who would or could take time to keep coming back to Gerry with multiple attempts for her to take it. As I mentioned way back in my Mom's story, they couldn't make /take the time to keep her medicated with a minimum does, but always in her system, instead, they used one of the drugs as a "bandaid" to the pain or sadness or whatever mood. To this date, I perplexes me that they could manage to have Mom take her Rx, which not long before, they were unsuccessful. "Curiouser & Curiouser" as they say...
Therefore, I imagined that St Clair would be under the same cautionary umbrella regarding a patient's wellbeing, dignity are care.
It was not at all like that, at all. My poor Mom. She seemed pretty good and had only a flicker of memory of "something" when I pointed out her very raw arms, and the many attempts at getting an IV in. She touched it lightly and flinched in pain. Mom is very very agreeable when it comes to IV or a simple injection, but if a person keeps trying and trying and trying and trying within a 1/2" area, it starts to hurt her tender and [truly a technical term-->] "fragile skin".
Concurrent with my own ER trip and desolation at having it recur - my stomach pain that forced me to scream despite myself, I feel shamed, but it was after such a long time, a year, of being safe from that, thanks to clear passage. Wow - definitely knocked me on my a!
Since this most recent weekend, I can now start to see, after talking with many of the people involved, or on the peripheral, or in the medical field, just what could I do to change the way events unfolded [I didn't even get a call, as her DPOA, about their wanting to admit her...that could have been changed by us driving down and being her "voice" etc. and the noisy, squeaky wheel that makes sure she isn't over 15 hours with 0 drugs and 0 food re: her sugar dropping and diabetes.
I also wouldn't have gotten the scare that implied that Mom was "not here" in a more ethereal way when I phoned from the ER, and no one knew who she was, then ooops, let me get my supervisor -- phew, just a room change!
Hence, my latest "task" or "homework" -- I will see what I can do to try to identify each piece of the potentially dangerous issues, and offer suggestions on how to plug all those holes (not only at St Clair, but at WSH and the "hand-off").
The people I spoke to all seemed to be telling me that basically "sh happens", i.e. records get lost, such as from ambulance EMT to ER admission, ER admission (6 hour wait) to hospital admission.
Another way to lose data, including specific to that case with my talk with a PA or MD or RN is when the people who are with Mom, they don't look at the chart, or history of her previous stays at St Clair that they have already, or the important words the PA, Randy and I talked about, nor do they even phone WSH for any verification.
I also told Gerry's PA that Mom does not speak of pain unless it is really there, she has a strong threshold for pain. I mentioned her recent Rx start of Zyprexa, the timing is pretty good for a possible episode, and when he mentioned one test was to test to see if there was a heart issue, I mentioned that she JUST had an echo-cardiogram which should give sound data, that he could build upon, rather than redo each test. I also told him that Mom has Diabetes II, and that she hadn't eaten yet [this call was about 6:00PM].
I don't know if any of you ever ever experienced a blood sugar drop, but it is a hard strange disorienting feeling, which is frightening for anyone, but Mom's "base line" begins with fear and confusion, where she can't count on any of her learned skills of talking, or communicating, or how to phone someone, names are not her strong suit, nor what year, or time it is, and where her family is, even those who are now Dead.
When an overnight stay for a transfusion was discussed, I had written a letter, along with many different phone calls, trying to put into place a plan that if Mom were to stay over somewhere, that we make sure we have a familar face, someone who was from WSH, to help navigate the bureacracy, and paper trail, at St Clair, often reminding them about typical care and "handling" Mom, and interpreting her "isms"; certain gestures, words, or behaviours and explaining what they typically mean...etc etc. In other words, simply offer Mom continuity from WSH to St Clair, with a familiar face, some history, some reminders etc. when someone doesn't check the records first, or loses them, or do whatever it is to avoid what got Mom into such a state...place of pain both physically and emotionally.
And HALDOL? What were they thinking? They were not thinking at all.
Truly it brings up images of "The Snake Pit".
And that is only one set of holes I need to try to plug, there is a lot of other things that have come to fore that I have to try to negotiate the best possible chance Mom will have when things like this happen.
I love my Mother so much!!! She looked very pretty, and I got a lot of kisses and hugs. She adores Gordy, she loves to hold hands with him and get hugs. She likes the place setting, and the "centerpiece" of lights, and the music I bring, and the food -- mmm mmm goood.
Kim came to work today and took Karla's last lemon square for the "good cause" -- Mom's delight and surpise. IT was the only dessert she ate in full. Thank you Ericksons!
I have a double of her blue fuzzy bathrobe, and so we took home her dirty one - ugh - and she now will have the new one 'til the next time we come, and we'll switch out then.
She's still beautiful, and still tries to be the hostess, and wants to take care of Gordy and me. She loves the visits, but my personal guilt eeks through -- hopefully prior and post visit ?!? I can't stand it. She still is light, and teases, and gossips, and laughs, and says nice things about Gordy or me. Each visit is unique.
This visit, her arms looked like the "Aushwitz" Jew's arms - bones with some loose skin. And so very very bruised, raw, tender, and yet, her spirit is strong right now. She continues to amaze me. I miss her and want her back home with me, Gordy, and the kitties. Home Sweet Home!
05:39 AM - link -
Well the short of it is that FINALLY Mom returned to WSH early eveningish Sat nite. St Clair truly is not alz friendly...again later on details -- but I am angry and helpless re: their lack of listening /care /communication skills - yes I called and was "cruise director" from the ER even.
I am also still in tummy pain and have been told it takes about 3 full days of my resting completely to heal after a tummy bout. I believe based on what I'm going through, and I know my getting so upset about Momstuff is no help, but I have no recollection that it took time like this to recover. Holy crap. And Dr Waite leaves end of this month - double-crap. My throat is losing some of it's rawness after tossing my cookies full o' bile, but I had totally forgotten there was an after-effects-recovery time to cope with. Surprise?
Anyhoo, I've xrays to be took, hopefully manana, and I also have an appt w/Julie, hopefully she can ease my tummy some...but dang, this still hurts. Gordy has an appt with Waite, and I asked him to make an appt for me -- sneak one more in before he leaves, I hope. After being shook to the core, I could use some stabling guidance.
I am still bloaty, I still have sharp pain, I'm not eating, although I had some jello just a bit ago, I cry a lot about Mom and my helplessness, and the crap she went through. I'm hurting in my heart and soul that I couldn't make things happen. I was on the phone a lot, and thought I had gotten through, gone up the "powers that be ladder" at both WSH and at st clair, but apparently not enough to make the impression I needed.
Finally from the ER, someone got Mom her medicine crushed as told over and over in some pudding so she could help her pain and her tummy w/out any food, and also managed to get them to remove her restraints - how dare they! I was livid and beyond able to be civil much longer, so the phone was handed off to Gordy, while we were in the ER (yes, I had my GI cocktail and meds so I could finally speak to them v. just groan, but I was just feeling the effects from it hence able to phone and talk).
To add to my total misery, that I had a stomach episode of huge proportions like this, unable to do self-control at home, well that shakes my world to it's core...it has been a year since this has been a part of my life, and to think /fear that this could become my life again...? well that is pure hell and I can't imagine it as my future again. I pray this was a single instance, but I fear it was the "on switch" after having it turned off so successfully by CPT in Fla last Feb. I got "spoiled" and my focus re: my tum was pretty much turned off, except re: the meal with extra hard to eat food, I'd avoid etc. et ... I though I could think travel with no fear, like AJG's upcoming wedding in September, and a visit to Jenny, Billiam, Robyn & Evan's house...it just became an issue of time /money to go there -- but that isn't the case anymore.
I'm breaking down, and I don't know what to do, or where to turn...
05:04 PM - link -
Stuff came down on me hard the past 24 hours.. I am forced to believe that Chicken Little *WAS* right!
Details later, but I'm fighting a losing battle re: Mom is now admitted to ST Clair for overnight testing and observation - and they [WSH] didn't even contact me, the DPOA to see if it was ok! It's not, but I'll flesh it out later.
And, woke up from severe tummy pain -- it's been 1 year since I did a ER /tummy run!
Yes, it came back, and it hurt like the dickens, I had no recollection about the type of agony the pain was. Moaning and loud groaning were on my personal agenda -- and even after taking my meds, I still was getting worse, so we went to WGH's ER!
I lucked out in having Bruce being the RN and triage gent. Dr Sherman was a warm and smart fellow also!
So, pain was lessened via Rx in hospital, after I did "toss the ol' cookies" [a pretty fair amount and, as you may have thought, thinking back to my previous posts about this cycle of agony and horror]. Although this may be too much info, for those of you who just can't help but look when they pass an accident, what I "whoopsed" was pur bile!!! Dangitall.
So, I'm home now.
I'm hoping for some rest, 'cuz I even spoke to St Clair while in the ER to follow up, and I finally handed off the phone to Gordy to be my go-between as I was getting steamed and more miffed while I tried to communicate with this particular RN at St Clair - which did not help me to rest and let the ol' gut relax some.
I should be asleep, but already I'm venting and doing some internal chastising and fighting instead of letting it go so I can "heal" repair whatever so I can avoid any more tummy ER status.
06:15 AM - link -
Wednesday January 16 2008
PSA -- Newscast special re: election 2008
05:03 PM - link -
I'm really angry about the Primaries and the way that they, the media, and maybe the other Dems too? seem to just dismiss John Edwards.
He is the only one I think is sincere and wants to change, and is able, due to his background in politics, to enforce those changes.
I'm sorry, Barack just doesn't have the clout, or practical knowledge to try to work a 180 on how things are going now, such as the war, and health care, and the budget et al. He doesn't have the life experience to be able to not be persuaded by others "on his side" at this time. He needs more years under his belt, and experience, and they he'd make a decent prez, if at that time, he has these same beliefs he expresses this campaign, these seemingly lofty goals to change things.
Hillary, well, I think she has the goods, but I don't think she will ever garner the respect from the other politicians to make it happen. They don't like that she's female, and they don't like that she's a "Clinton". They still don't forgive Bill his sexual indiscretion.
People's priorities are so darn messed up and foolish. How Bush gets away with his horrific acts of stupidity, and lies, and smirks, and wrong decisions, and the terrible choices, and he's not taken to task for them, and why poor Bill, with a consenting adult, ended up getting tried and impeached for sex, or something like it, is beyond me.
John has the talent, the charm, the intensity, the background, and the drive. He can effect change. He spells things out on his site - check out this document:
and despite all this, he's dismissed...or is it manipulated out of the spotlight? I hear the pundits and news shows speaking only of Hillary and Barack -- heck, the nerve of this reporter on PRI to say, Kerry backing Barack was because his voting record is parallel, and Hillary is a moderate...but no one spoke of John Edwards as if he was still in the race, and /or what a nasty thing it was to not back John, and what how stupid message he's sending about his own pick for a VP way back when.
What is wrong with these bozos?
G said that big biz is afraid of John, and is using it's strength to ensure he's not even in the race, or in the news, or getting any press.
I don't know if they [big biz] has this power or not, but if they do, doesn't that scream to everyone to vote for the person that is being suppressed and that power and money is being spent on to keep him down?
I'm behind John, and offer him what little donations I can here and there, but I am so afraid that the choices that will be left, based on these loud and censorious powerful, narcissistic, big bizness, people manipulations create will be unacceptable to me. Did you know that John Edwards is the only candidate that has not taken a "single sou" from corporations so he will be unencumbered when he takes office? Can you imagine that strength of character?
A ticket I'd like to see is Edwards /Clinton! What a dynamic team. John would be too smart to let his Veep be a puppet and used for just show, he'd give Hillary plum assignments that would use her history and passion to the US's advantage. She's done a lot of groundwork in health care for one, and I can see them working side by side and making great strides from ground one.
I'm afraid that if Hillary was president, she'd be having to spend a great deal of her valuable time defending herself and her "femaleness" which is a terrific shame. But life is not fair, and the golden rule is only used by many as an attack of the righteous, twisting it, while being anything but empathetic or supporting as they would expect, nay, in this case, DEMAND for themselves.
It's a scary and sad world that people with power are so narcissistic and simplistic in the world being all about them, and their resources being used to perpetuate it. And, I use this term in the clinical sense of the personality disorder -- I bet it you looked it up, you'd see a snap of W, and Cheney, and oh so many on the Republican side, as well as bi-partisan too, as long as you are one of the rich and powerful sort:
Narcissistic Personality Disorder -- Diagnostic Criteria
A pervasive pattern of grandiosity (in fantasy or behavior), need for admiration, and lack of empathy, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
has a grandiose sense of self-importance (e.g., exaggerates achievements and talents, expects to be recognized as superior without commensurate achievements)
is preoccupied with fantasies of unlimited success, power, brilliance, beauty, or ideal love
believes that he or she is "special" and unique and can only be understood by, or should associate with, other special or high-status people (or institutions)
requires excessive admiration
has a sense of entitlement, i.e., unreasonable expectations of especially favorable treatment or automatic compliance with his or her expectations
is interpersonally exploitative, i.e., takes advantage of others to achieve his or her own ends
lacks empathy: is unwilling to recognize or identify with the feelings and needs of others
is often envious of others or believes that others are envious of him or her
shows arrogant, haughty behaviors or attitudes
Does this sound familiar regarding our Governmental choices the last ~8 years?
I have a favor to ask you. Please check out John Edwards' site, and blog, and other goodies, and see if what he has to say make sense to you before you believe you only have a choice between the two people the press implies is the only option. One thing I like on his site is his posted "to do list":
- Global Warming
- Health Care
- Jobs & Poverty
Thank you for listening. Pax.
03:11 AM - link -
Just a quickie about Mom and our visit tonight. She looked like Mom! She acted like Mom! She was eating so politely, and being the hostess, and flirting and asking questions and telling stories, and teasing the folk who came in to visit, and /or give her her meds.
The stinker is that she doesn't speak words that are put together into an understandable sentence. It hurts so horribly much.
I also noticed that she had more trouble than previously when eating to swallow her food, and her getting out of the chair was slow and a bit wobbly and with pain.
They started her on Zyprexa, and she is more "calm" and not "sedated" i.e. logey and not "herself", but I'm on guard for the two possible symptoms /side effects mentioned above.
I love her incredibly much and I can't ever put it into the right words -- I'm as unable to communicate the intensity and the down to the core of my being and soul how I feel about her and care for her and want for her. But I do. I hope she has a clue somewhere to know she's loved. She does not know why Dad and Jay and the family don't visit.
At least she eats well when we've visited the last few times. We're hopefully back on the weekend visits again. Trish mentioned that she just loves watching Mom eat the way she does when we are there. I wish we could do it more often, but we just can't do it without totally beating ourselves down.
I don't know if I mentioned we had xmas with Robby, so one more family to go here in Wa, Katie, Mike and Colby, and still we need to fire the prezzies off to the IA Gillman's.
The 18th this month is Gregg's b'day, and the 24th and 25th are Robyn and Jenny's. Gotta try to send them off in time.
12:27 AM - link -
In case I forgot to mention it...
He made it home just in time for their Anniversary [Jenny & Bill's]!!!!
He flew in just shy of 3:00 AM Jan 1st. We spoke to Jenny prior to his arrival as Candy had left a voice mail about his heading home [thank you Candy!] on Gordy's line, and so we had to phone and share the excitement.
As you may imagine Jenny was on cloud 9 [but with her feet firmly on the ground, planning for his arrival]. She didn't tell the kids, but made them get to sleep earlier. She then woke them up, and with Robyn, she teased her about if her Dad was coming home would she want to wake up...and then said "well, he is" to the sleepy-eyed girl, who immediately woke up all psyched, bright-eyed and bushy-tailed!
The plane full of military folk, were shuffled to the gym on base. Jenny, Robyn and Evan waited with other Ft Carson folk for their loved one's to arrive. Evan knew his Dad immediately, which is so fine, since he had not spent much, nor nearly enough, of his 3 years with him. So it was a lovely homecoming and William sandwich!!! Hugs, love, kisses and laughter and chatter all around. Such a great family.
Oh, it takes such a load off!!! I'm so happy he's HOME!
This family has been through the wringer with Iraq and stuff, but after 15 months this time, his 2nd time, he is supposed to be home for 2, dos, deux, two, II, YEARS...! I pray that they get this time together - they so deserve it.. and I hope that if he can't come to Ft Lewis, then he gets whichever base they want, and that the war is way ended by then, and there are no more need for the military to be in harms way anywhere on the planet.
We did speak to Billiam a bit on speaker phone, and it made it so real for G and me. Poor lad, he's caught a wicked bug, but he's home, and Jenny and the kids will make him well soon enough. Methinks that since he's home, he felt safe enough to simply relax his guard, and generally that means all those nasty bugs seize the opportunity to attack the system.
They have 9 days off, together.
Gordy and I plan to be very very very good and not call!
Peace on earth, good will to all.
01:40 PM - link -
"walk this way..."
Igor [prnounced Eye-gore] from "Young Frankenstien" [pronounced Steen] --