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My frustration is off the charts
My husband MCI diagnosed a year ago.… Memory loss, confusion, and processing issues. On top of that, his hearing is bad, even with hearing aids. And he does have focal seizuresat times. The tension in our house is constant.. my husband is unaccepting to all of this. If I raise my voice so he can hear, he gets angry. If I ask him to get a ride to a doctor appointment so I can have a break, he gets angry. ( he is not allowed to drive). If I point out some confusion or processing issue, he gets angry. He says I’m just making too much of all of this. Some days I don’t know how to deal. The confusion is extreme some days. Last week I felt some anxiety starting. Too many days without a break. Anyone experience anything like this? Any thots?
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Thanks to all of you for sharing. Life in an "intense pressure cooker" brings out the best and the worst in us.
Today, I will do my best to "not engage with him," and to just love my George.
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3 ReactionsDear @standinginfaith
This is such a heartbreaking story and I thank you for sharing it. Thank you also for being willing to fight even after his death for someone to understand the real human costs of their incompetence and inadequate management. These days we have the same medical malpractice issues to guards against and in addition an even more daunting foe: The nameless, faceless mountain of administrative offices and staff who increasingly determine who gets what treatment, with no accountability.
A recent article noted:
"In 1970, there were far more physicians in the U.S. than healthcare executives or managers. By 2009, administrators outnumbered physicians by more than 10 to one. From 1975 to 2010, the number of U.S. physicians grew 150%. Administrative personnel grew 3,200%.
This is not mismanagement. It is not accident. It is mathematical inevitability: the compounding consequence of regulatory complexity, payer fragmentation, billing code proliferation, and the political economy of hospital bureaucracies that reward headcount with status and status with survival. Administrative bloat is not a symptom. It is a system behaving exactly as its incentives demand.
Today, administrative costs consume an estimated 34 cents of every dollar spent on U.S. healthcare. Overhead is the single largest line item in American medicine. Not drugs. Not devices. Not physician compensation."
I wish you peace as you continue to live fully, as I am sure your loving husband would have wanted.
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3 Reactions@kjc48 My husband and I are both veterans; they have good support network, and depending on the Veteran's service time and other factors, he may be eligible for some and or everything.
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1 ReactionThank you for reaching out and sharing. Karla
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2 Reactions@georgescraftjr Yes, I love that. I actually laughed! Poor George, he won't have you today.....and what's funny. I tell my Eddie that I'm not talking to him, if he's nasty or agitated..........and that works sometime...Ah, but the cold shoulder, and total avoidance, now that might work even better,
Best, Karla
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2 ReactionsGoodness, hugs to you.
Yes, my frustration is off the charts sometimes with similar behaviors from my husband.
It's lessening though due to caregiver classes I am taking, and started taking my husband to a respite care facility a few times a month (he does boxing while he's there).
Also, try to find a therapist with experience working with caregivers, they do exist.
Walking away or to another room, petting your dog or whatever, baking cookies, taking a walk, doing a workout on TV, journaling. call a friend; find things that help you release that steam valve, and it's okay to yell and scream if that helps.
All the best. 🌺 🫂
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2 ReactionsYou are correct and that's a valuable point you raise. As they think you are the problem. That's the disease, and over-time, through the progression, that will resolve, "they don't think anything is wrong," because I remember my neighbor who had alzheimers, and over time, she didn't know enough to argue or "engage" with you. I think all the stages of this disease are painful but the onset is very frightening, as we don't know what we don't know, hoping for the best, planning for the worst, not knowing day to day, what's going to happen, but seeing with other's progression what has happened. It just puts life in limbo. And especially if you're up there in years, it has me questioning how much time we have left at the later stages of our life. I hate to write this, but it's real, hard-core feelings about being close to 80 years old, and seeing what's happening to his and my own health. I've been running frantic worried that if something happened to me, what happens to him with MCI - if he progresses. Why I went to the attorney, but I'm still confused, especially in a blended family where estate planning gets even tricker with kids from different spouses. Now to have to make those decisions. Please don't mind my ramblings this morning.........Best, Karla
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4 Reactions@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!!
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2 Reactions@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.
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3 Reactions@shmerdloff Exactly!! If anyone has that answer, please post! Linda
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