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We just had my mother in our local hospital due to one of her TIA spells she has. My wife and I were were explicit as to Mothers' degree of understanding and ability of reasoning, she has little. We found out that if a patient can not do everything for them selves, brushing teeth, shower, go to the restroom, choose selection of meals, operate call button, etc., the staff has no clue. My wife had to dump her bed pan, change her depends, give her a shower, clean her up after a BM because no one showed up. Mother had no breakfast because she was served pancakes. No one bothered to asked her if she liked them or not.
Yes we were on call 24/7 for any questions. Yes the staff assured us they understood about her condition. Is this common for most hospitals? This incident has driven our confidence down to nil in hospital competence.

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Amen, "quakerite"!
I hate to think it could be the reason, but I wonder how much hospitals budget for income from Medicare. There seems to be no logic or concern for quality of life when these procedures and tests are ordered. Obviously, any person over the age of 80 has a LOT of symptoms for which tests could be ordered and procedures done. When did doctors stop caring about the patient as a person who wants a life, not just to continue breathing while cognitively deteriorating. And, you're exactly right, loved ones are easily bullied because, even though their head tells them they should not give consent, their heart is listening to the doctor talking about "doing everything you can." The information the doctor doesn't share is the enormous, prolonged suffering that can result from some of these procedures, pacemakers in particular. I think that, before a pacemaker is installed or replaced in a person who is in the advanced stages of terminal dementia, that the doctor's order should have to pass an ethics review. Sadly, I'm sure that would just stir the pot among the 'death panel' crowd.
Colonoscopies seem to be a favorite. One of the many doctors treating my father-in-law during his final hospitalization ordered one while he was actively dying! We were able to put a stop to it, but couldn't stop the replacement of his pacemaker.
I've told my family that if I'm one of the unlucky ones and am diagnosed with dementia of any kind, I don't want any medical intervention that's non-palliative; no BP meds, no aspirin a day, no cholesterol meds, nothing. I'm not a religious person, but if I'm fortunate enough to live to a ripe old age, God's will is how I want to go out. Not being kept alive as a cash cow for a perverse health care system.
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As an RN who has worked in day care surgeries, I'm appalled at unnecessary procedures that were done on very elderly or very frail patients who also were mentally incompetent. Often the caregiver was bullied into giving consent - because no one wants to be thought of as not doing everything possible, right? (Good for you, peoplepleaser, for refusing the colonoscopy). I saw a man, already dying of an advanced, aggressive cancer, put through a colonoscopy - for what? There was no information that was going to change his outcome. I saw a 100-yr-old Alzheimer's patient have cateract surgery -- the doctor said it was for "quality of life." The patient died 3 days later (not from the surgery). Luckily my aunt's doctor and I are on the same page in terms of her care - he tells me, just keep spoiling her, keep her happy, she's doing great. She's 95 and only on 4 meds. I put a Full Spectrum light on her every morning, take her to day care twice a week, and give her 2 tablespoons of coconut oil with every meal. We just roll along with whatever the day brings -- and I stay away from hospitals as much as possible! But you have to be firm!
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"I would do anything in my power to prevent another stay in the hospital." This is how my father and I felt. One time, Mom had a GI bleed and needed a blood transfusion. We begged her doctor for some sort of "outpatient" arrangements. He did allow us to have her blood drawn first, then he called us the next day (instead of having us take her to the ER immediately). The hospital refused to do a direct admit, and she still spent hours in the ER (tore out her IV twice even with Dad by her side), then had to spend the night and all of the next day there. ERs must be big money makers for hospitals and you can no longer bypass them. It makes it difficult for caregivers to know how aggressive to be with care. We did decline a colonoscopy for Mom and fortunately, the bleeding stopped. But the docs really wanted to do a colonoscopy. I do believe there are palliative care docs who maybe would be more appropriate for some medical issues that occur with dementia patients. Never the less, there are issues that have to be dealt with in a hospital, and the situation is extremely difficult for the patient and caregiver. I did obtain a free pamphlet I believe from the Alz. Assoc. regarding this very issue.
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I agree w/ all of these comments. I was appalled when my Mom recently had an overnight hospital stay following a pacemaker exchange. The cardiologist wanted her on intravenous antibiotics which required a 24 hour hospital stint. I arranged family shifts, because I knew my Mom would be confused (especially since coming down off the anesthesia made her way more confused than ever to begin with.) On the night shift from 10PM to morning, which my daughter took, it was chaotic. My daughter had a cot beside my Mom. Mom kept trying to get out of bed as she couldn't understand why she was there. The hospital staff hooked up a very obnoxious alarm that blasted "Mary Had A Little Lamb" at a volume that would awaken the dead! Everytime Mom attempted to get out of bed that horrible thing blasted off. This freaked out my Mom more than ever. (it would freak me out, too.) My daughter repeatedly told the staff that she would handle things, and the alarm wasn't needed. They said if she tried to get out of bed again they would put her in restraints! It was really bad. They had not an ounce of understanding or empathy for dementia. It was a nusiance to them, and they acted as though Mom was being deliberately uncooperative. I could say more about the experience, but suffice it to say, I would do anything in my power to prevent another stay in the hospital. (Large, reputable hospital I'm talking about.)
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My mom has been hospitalized 6 times since her dementia diagnosis. One of us stayed with her 24 hours. Hospitals are not staffed adequately to provide the care and supervision that dementia patients need. Some will provide a "sitter" if requested. I am a nurse, but noted too how ill prepared the professional medical staff is in dealing with dementia patients. We have been at multiple hospitals also, and it hasn't seemed to make a difference.
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There is a good book on this subject. "Improving Hospital Care for Persons with Dementia" by Silverstein and Maslow. It includes research about the current state of care and experiements for improving care. It was published in 2006 ... wish we could say things have really improved for our loved ones! :(
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I have had similar experience. earlier this summer my dad went to the ER. I just happened to have a copy of all the meds he was taking. I was asked for it about 4-5 times. I assumed that someone would take them and type them into the computer for all to see. very frustrating and sad.
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Given the fact that the baby boomers are all headed to their golden years, it's shocking how ill-equipped hospitals are in dealing with elders who are cognitively-impaired.
We had the same situation with a family member. Though he was experiencing hallucinations and was completely disoriented, a doctor had him give consent to an invasive procedure even though it clearly stated on his chart that his daughter had medical POA. That procedure bought him an additional month of suffering.
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The few times I had to take my 95-year-old aunt to the ER, I would mention to everyone about her having dementia & was assured they knew what that meant. Nevertheless, several staff, including the doctor, took a history from her, not even noticing that all of them were getting different information. She told the admitting nurse that she'd been in a car accident when the car she was driving was hit and that her niece (me) had been killed. She told the radiologist that she had been walking in the woods and tripped over a root. She told the doctor that really, nothing had happened. He said, "I see. So you just got a sudden pain in your hip?" She said yes, and the doctor looked at me seriously and suggested that the recent wet weather had probably caused her arthritis to flare up. I said yeah, could be -- or how about that she fell down a flight of steps? The doctor said it was "funny" that she hadn't mentioned that.
Even at the adult day care where she was, when I complained about the verbal and physical abuse I had witnessed, I was told that "even" if that was true, the clients would forget about it anyway. And these were professionals!
You have to be very vigilant, & don't assume that medical personnel know what dementia means.
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It is extremely common that hospital staff has no clue how do deal with persons with dementia. Our local hospital has been rated one of the best 100 hospitals in the nation. I had surgery there and understand how it consistently gets that rating. It was a wonderful experience, as hospital stays go. But when my husband was there they had no clue how to deal with dementia. None. Obviously that is not something taken in account in rating hospitals.

Each time my husband is hospitalized I make sure there is family with him 24/7. I did this myself one stay, and don't recommend it as a one-person job! The next time our children and I rotated shifts.

My advice? Explain the condition to the head nurse and also have family present 24/7.

As our population ages and dementia becomes even more common, I think the hospital profession will learn to deal with this. They are not there yet!
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