My frustration is off the charts

@memoriestomoments THANK YOU!!! I myself have been battling this system "on the outside" now for six years.. and it is horrible!! We live in a very rural area.. and whew!! I blithely took an antibiotic my PC prescribed on Dec 19th 2019 ..it was double the usual dose and it blew a hemorrhage in my stomach..and hurt!! And then.. the plethora of problems that followed.. got down to 98 lbs.. gastros ..horrible.. until I found a good one.. 30 visits to ER.. one even told me..I"m not going to help you.. and you've been living alone for so long you ought to be used to it (severely dehydrated and so malnourished I had scurvy) and sent me home.. she said "go ahead and fiel a complaint..I'm the head of ER here so hahaha".. so bad.. drove 30 miles each way and the next day I called my PC and she had me tested and I was dehydrated and needed an IV.. my handy ma took his wife to this same ER and dropped her off and when he came back she was dead.. never told him why.. I had gallbladder surgery here and had a copy of my preop (I document everything) saying I was allergic to lidocaine.. 2 labels on my gown .. 2 anesthesiologists who said they wouldn't use it and as they were putting the mask on my face I heard " give her the lidocaine.. she had to call for 2 big guys to hold me at 104 lbs..so I got home and raised such a ruckus.. the hospital called and they changed their p[olicy.. no one gets anything they are allergic to..I had to call for an ambulance and we have TWO.. I got the one with no thing on it.. they gave me a "barf bag..I asked for a Zofran.and she said "I'm not authorized to give on".. so I said "can I administered one to myself.. get my wallet".. you have just explained why and what the heck is wrong with this system..!! Finally and answer!! I have ben thru hell with this stomach stuff now for six years.. and God has healed me of so much..if it wasn't for Jesus the healer.. I'd have been dead several times ..(Like a cat..9 lives) My nephrologist gave me pills I have to take that have titanium oxide as a binder and got so mad at me he hurt me last week on purpose trying to show me where kidney pain was..I did leave RFK Jr a message about metals in scripts.. thinking he might look into it.. (I'm 72 and too old for this crap.. kinda crabby about it.. drs on TV ..my Rheumatologist.. is in New York at a VA and we're here in Oklahoma.. he says (since I complained .. what are you all gonna do for me this year.. 4 years.. last year the resident just sent me home with..you're gonna have kidney or heart failure from systemic scleroderma..well the Dr has hired lots of residents ..because he got a contract with the Cherokee Nation.. and so he sits in New York and writes a new book..and lets these residents take care of us.. now I have fibromyalgia..(where'd that come from??) and oh they don't treat that... can't seem me anymore... well I got all my records and found a rheumatologist in a big town who does both..( they almost flipped when I told them) and I'm probably gonna try.. to expose this type of "doctoring".. as it is so prevalent here.. gastro in Florida and he flies in to do surgeries.. and lets residents handle it I'm 72..and they mistake me for being stupid as I have a prevalent Southern accent (more so than most Okies. born in Alabama)..I tell them "where I come from CEO's talk like this.. we need to fix this system ..and fortunately I am getting better and going to come out screaming.. just need to find the proper avenue to navigate..(I am very familiar with the VA.. but "outside is so ..big").. I thank you for sharing all of the great information!! I pray God's hand of protection over you and abundant blessings!!

Dear @standinginfaith

Thank you very much! I pray you can keep standing for the medical care that you and others deserve!
Here is another article on how "medical administrative harm" happens. https://www.medpagetoday.com/opinion/calamities/117085

Thank you fo describing your saga. I grieve for us as a nation each time I hear about what passes for medical care in rural and indigenous American communities. I have seared in my memory two lines from two documentaries:

1. A documentary about how rural areas are ending up with no hospitals and very little heath care overall since cost cutting for "efficiency" always leads to the same conclusion: Rural hospitals cannot make enough money to satisfy shareholders. This particular documentary focused on South Carolina, where multiple rural hospitals had closed and more were on the block. At a televised event, then Governor Nikki Haley was asked about this. She said that the key was for South Carolina to do all it could to help boost the business sector and once that was done, other investments like healthcare could be made. As a former business-person, if feel very comfortable asking: Have we ever seen the business sector say that they have enough?

2. A radio documentary on the prohibitively high cost of health insurance. A lady in her mid fifties had two chronic medical conditions which were not being treated because she did not have insurance; she was asked how she felt about that. She very humbly replied that she could understand that there were very important people, heads of companies and the like, who really needed and deserved excellent healthcare and so she realized that not everyone could have that. I was stunned, and ashamed. That anyone in this nation should be led to think this -- to think that they were not worthy of healthcare -- saddened me terribly and still does.

Our veterans in particular, should be able to count on competent and respectful care.

But let's be very realistic. We have to take on a lot of responsibility ourselves even when we have access to great medical services. In the course of helping family members deal with illnesses, I have found that it pays to:

- Document as much as possible about the illness, dates, symptoms, changes, things you have tried already as treatments, reactions, etc.

- Do a lot of research online. The Mayo Clinic and other leading medical centers have very good sites that explain the basics about many illnesses. After learning those things, You can also ask Claude.ai or another chatbot things like what questions you should ask when you are going to meet with a doctor. Do not share detailed medical or identity information on AI chatbots, but you can input something about the diagnosis, for example, and ask for help in generating questions.

- Persevere. I have found that some doctors want to give you the minimum information about the illness. Ask your questions, and ensure that you get real answers. When you have a disease, join a support group so that you have other people's experience to draw upon. The doctors tell you stuff based on the "average patient" -- by definition, each person is different. This means that you go home and are left to figure out if that pain or that rash or that tiredness is something that will pass or something that needs attention. Support groups are a great source of information on that kind of issue.

And don't get me started on age-ism. We have to make it clear from the start that we are not silly old ladies or gents! And that we know we deserve full care, not "people that age have a lot going on" care.

As the Italians say, "Forza"!

@standinginfaith so sorry for your loss, my husband is also a Vietnam vet, so on top of his vascular dementia we also deal with many other issues. Your story about the VA is very sad and I’ve heard many like yours. I’m thankful the VA here has been supportive and helpful.

@memoriestomoments You are awesome!! So much great info !! Thank you soo much!! I am doing most of your suggestions..and my office is full now of medical records..each dr has their own "book"..good and not so.. one of the reasons I joined some of these groups.. awesome ..so helpful!! I also watch Joni Table Talk on Daystar..lots of drs interviewed on there..I did tell my rheumatologist...it's a sad thing when a patient has to call the scleroderma foundation for answers to questions..( they didn't like that much.. perhaps that's why the diagnosis of something they don''t treat!!) Right now my 82 year old cousin has prostate cancer and can't afford his medication they want him to take..he live in Tennessee.. I remember when the dr told me the Med Dave needed would be high and went to Walgreens to pick it up.. she went "whew" and I said how much is it..?? TWELVE THOUSAND a month in 2011.. so I researched and got the 1st month for $26 from Humana.. would have been over $400 a month but the.. his oncologist , who had been a dr at a VA said the VA carries that.. about that time I got a call from the Chief of Staff at his VA asking what they could do for Dave and I told him .. get him Nexavar.. and we got 3 months free.. I told Dave ..behold these 3 bottles are worth more than your truck..but they did not tell us it only worked on liver and kidney cancer.. and we didn't know.. so I took him to the hospital (outside) and she did a scan and came and called me outside and said.." it's all over in his lymph nodes and he will die soon".. I'll never forget Dave asking her "when will I die?".. he only lasted about 3 more months.. and passed in the living room in one of those "beds".. he looked so bad..I just hollered "Jesus please help my man" and a bright white light shown all in the room and Jesus took him home..I just stood there and the nice young lady who cleaned him up arrived just them and called Hospice to tell them.. never will forget that.. we all need to stand in prayer for our health care..and know Jesus is the real healer..by the way, what does Forza mean..?? Take care and God bless and protect you!!.

Dear @grace4u
I have a suggestion that may seem completely unrealistic, but I will share it in case it can lighten the burdens for both you and your husband.

Consider quietly and lovingly Taking Control.

I have been on the Alzheimer's journey with my husband for 16 years so far. They have been wonderful years. My user name, MemoriestoMoments, has two intertwined meanings.

1. It refers to the path that our Persons are on once they have dementia. Although we can do things to stretch out the decline, once on the dementia journey we cannot reverse it. Over time our loved ones will lose most of their Memory and this may well erode capabilities, preclude valued activities, change relationships, upend plans. Over time, they will come to live life as a series of Moments in the present.

2. Though that trajectory is (currently) inevitable, we, their partners, can keep that memory loss from leading to annoyance, sadness, anxiety, incapacity, loss of dignity, and embarrassment, among other negative effects. That is the parallel Memories to Moments process for the partners of people with Dementia:

For our loved ones and for ourselves we can shape a life that:
1. Makes the most of the joys of the “Memoried” life while you can still share with your person,
2. Evolves -- with us increasingly becoming the curators of a series of pleasant Moments for our Person. The result is new joys and deep fulfillment experienced together, and separately, in the present.

I am writing now about how I did this in our life, but here is a summary that may be useful.

The default thinking that many people adopt when Alzheimer’s enters their lives is that their future is going to be dominated by sadness and suffering as the afflicted person’s capabilities inexorably decline.

When I realized my husband had memory issues, I remembered that when my mother was dying of cancer I was able to anticipate what she needed and wanted. In her last weeks, it was as if we were partnering to be her: As she lost agency, I was an able complement. Her death was the most devastating event of my life, but being able to reduce her suffering through that complementarity makes me treasure the memory of those days. Remembering this, I realized that I could do the same thing with my husband as he went through Alzheimer's.

Once you realize that your loved one is having a hard time doing things, you can start experimenting with how to step in (or have others step in) to fill the capacity gaps that emerge. There are two intertwined objectives to this "complementarity" .
• One objective is practical: It is to enable your loved one to achieve outcomes that they want, but can no longer accomplish on their own, or without stress.
• Even more importantly, there is an emotional, psychic objective: It is to minimize, and even eliminate, the stress (and associated anger, anxiety, etc.) of losing capabilities.

The more naturally and tacitly you provide complementary assistance, the more likely you are to reduce stress for the person. Nobody wants to need help. As we know, asking someone with dementia if they want your help, makes it an issue.
Providing the needed help sensitively and proactively, makes it a gift.

As you do this with the intention of wrapping your husband in your solidarity and love, obstacles dissolve. One activity at a time we gently and lovingly redefined independence, replacing it with collaborative effectiveness.

As the disease progressed, I found it important to use "adaptation" as well as complementarity. Complementarity changes Who does what the person wants to do. Adaptation changes What the person does: You accommodate losses of capability by substituting-in doing something similar -- that is within their abilities.

I know that this may seem like a lot. You have your own life to manage, plus the things he used to do for the two of you. Now I seem to be suggesting that you take on his life too. I can only report from my experience that it has made our life joyful and has created great satisfaction and growth for me. I take the chance of sharing this with you because I found that this approach can move those of us facing dementia in our families:
- From victims to agents
- From reactive to proactive
- From fearful to confident

Wishing you the best.

@standinginfaith

You are a fine person and your loved ones are lucky to have you.

Forza! literally means "strength!" but it also means "Go for it!"