Is it illegal to stop administering prescribed non-life saving meds to someone w/dementia? Her body's alive, brain is dead, what's the point?

Seven4real you remind me of me and my granny! There are times when I get so frustrated, but later on I laugh about it...I have the same problem with the windows being open in her room at night. Now when she goes to the bathroom before bed, I go in her room, close one window near her bed but keep the other one open then pull the blinds, she asks if I closed the windows I tell her yes. She never bothers to check! I am now able to figure out the games that she plays and adjusted my behavior accordingly! I've been going thru hell here the last 2 weeks as she has had explosive diarrhea! It's all over my bathroom, the wall, toilet, shower AND then she rolls her walker thru it...disgusting! I have given her more showers this past two weeks then she probably has had her entire life. Went thru a 12 pack of socks, numerous pairs of pants, now I just keep her in pajama's. We spent 5 1/2 hours in the ER yesterday because of it. Naturally she couldn't have a bowel movement there, so I have to collect one tomorrow prior to her dr appt. Yea! Can't wait to do that! I agree that this Alzheimer's/dementia is terrible. I told my husband when I get to the point when I can't even tell if I am going to the bathroom, please put me down! LOL!I just quit my job to stay home and take care of her. Like they say, be careful what you wish for, because I am not digging this staying home stuff! Can't wait until my schooling starts back up in August! Keep in mind I am studying Human Services! At first I thought I wanted to work with the elderly but after dealing with granny I am leaning more towards hospice. I've had a few clients go thru it and found it to be very peaceful. Stay strong everyone!

missymo, thanks for the kind words. Today was much better although we have both been tired most of the day. The diaarhea finally ended yesterday afternoon after 6 episodes.
I will contact our GP today and tell her the results of taking Judy off her gout medicine. Her foot does not seem to be any worse than it was when she was on the medication although just one day is not a good test.
Yesterday and today were the first days she was able to get through breakfast and lunch without falling to sleep in several weeks.
Her UTI symptoms seem to have vanished. It does not mean she does not still have the UTI.
She is able to drink again. I was having a difficult time getting her to get more than an ounce down her at a time because she would spit it up or just would not swallow it. I had added more thickener to her water and that seemed to help a little bit.
Her garment protector had more food on it that I had dropped than what had fallen out of her mouth.
Judy cannot get up by herself but she usually walks OK. She had not been walking well for a month and I had gotten her a wheel chair. I get the wheel chair close and get her up and I let her decide if she wants to walk or use the wheel chair. She has been choosing to walk about half the time.
To get back to the question, I feel it is an obligation of the caretaker to decide if the medication is helping or harming. I went through basically the same thing in the early 80s when a number of doctors had decided 100 units of insulin was appropriate for our 8 year old daughter and 10 year old son. It was a difficult battle then, and it is still difficult now. I can tell I am still tired because I am rambling.

OMG Bob . My heart goes out to YOU and your lovely wife Judy. Even though my Daddy ( he passed away last summer) was a Doctor for many years himself and my Husband is a Pediatric Oncologist , sometimes its the person taking care of their loved one that knows best. My Husband would cringe if he knew I was typing this. Doctors are human not G-d. I gave that thought up of them years ago. When I hear about any Husband taking care of his wife I just have a soft spot right way for them. Most men would NOT! That's why I say this. My Husband would not and had my Daddy still been alive now with my Mummy having ALZ he would have placed her as we had too, in a Group Home. I'm sad that I was only able to take care of her for 3 months but it was the Sun Downing that was making it a living H%LL for me. My Husband is wonderful with my Mummy a lot better than I have been. I just don't want this to be happening to her , that's why I think I acted as I did toward her and the whole illness. Not a huge Fan of ALZ. Its just such a horrid illness. My Hat goes off to You for being the Wonderfully Loving and caring husband so it seems in your posts. Hope you and your Judy , have a better Day tomorrow.

Seven4real: you and your Mom need your own sitcom. You are hysterical!
Try to relax or she's going to put you in a home. Seriously, pick your battles and not very many. Reverse psychology will work better with her. She's a brat. You are a Saint:) xo

Oh my gosh, I need to be here on a daily basis! I learn so much and I need to vent!
My mom was diagnosed in 2008 with Alz and has tried every med they would push on her. Last time I had her at the Neurologist I said NO they cause more anxiety and behavioral problems than they help. She was actually hitting me at times, and the bad mouth! She has been living with my husband and I for one year and I was very hopeful that it would be better for all of us to have her here. I tried vitamins and she had already been taken off all of her meds by her family care physician. I think he understood her desire to not prolong he days on this earth. I still do give her a multi vitamin, the b vitamin complex "Cerofolin" the neurologist prescribed and baby aspirin a day as she has a heart valve implant and it keeps her blood thin.She wasn't even taking that when she was in the assisted living. I now keep her clean, she doesn't remember to shower or even brush her teeth. Amazingly she is strong physically and makes her bed every day, helps me fold the clothes, and is generally pleasant....But there are times that do try my patience.
Last night my hubby was out of town with our sons and grandsons camping ... he so needed to get away and so something fun.
I decided we would have a girls night out and take Mom to dinner. We got right in which was good as she is not patient. The first words out of her moth were, "It is so d**** noisy in here. I told her maybe if she took out her hearing aids it would help to curb the noise for her. She didn't like that suggestion.
I explained it was dinner time and lots of people were eating and we would order quickly. She wanted a glass of wine and said for me to order as she like everything. I got some appetizers and a salad to split. I had to tell her that we were still getting a meal so she might want to slow down on the onion rings. She was snotty and said "I know what I want to eat and I am going to eat it."
I explained that she had a meal coming and she said" I am not going to eat anymore, I have already eaten." Her meal was a shrimp plate and rice and veg so was not large but she would not touch it. I told her I was going to eat my meal which I had to do quickly .We boxed hers up and I had to stop at a store to grab something quick so she insisted on staying in the car ...it was 84 degrees out. I said no and she said" Why the H*** not."
I was at the end of my patience at this point so I explained I was responsible for her and it was too hot and if we kept the windows down someone might bother her. She cussed again got out of the car slammed the door really hard. I then said, " No you are getting back in the car for acting like a 3 yr old and are going home to your room where you can spend the rest of the evening " She always says I don't need you to do things for me I can do them for myself...but she can't. I know I lost it and I know it just made her pissier, but I feel like when I try to do nice things for her it never works out anyway. When we got home (even though she does'nt need my help and can do everthing for herself) she wondered what that thing in her room was and why it was blowing and could I turn it off. I explained the air conditioning unit in her room and how I had set it to only come on if it was hotter than 70. She says Ok. 3 minutes later she comes down in 2 pairs of pajamas and asks me again about it. I turned it off this time and opened her windows which she then says "I can do that myself if I want it opened". I ask her if she is worried about the windows being opened (for security reasons), and tell her she is on the second floor and maybe a cooler night breeze would help to cool off the room. At this point her room was about 80 degrees. I know she doesn't get it but she fights me at every turn.I worry about her dehydrating and she drinks very little water and only likes coffee. I left with the windows open and she probably shut them as soon as I left. This after noon I am getting a care person in and going shopping even if it is just for TP laundry soap and a new lipstick hopefully to make me feel better. Thanks for letting me vent. Thankfully my mom is not incontinent for the most part has had a few accidents, where she hides the wet stuff in the closet, but I agree that having the body and no mind is just horrible for everyone!

What an interesting time to see this subject. My wife was diagnosed with cortical basal degeneration almost 10 years ago. The doctor gave her a cocktail of drugs including aricept, namenda, lexapro and a whole slew of others. After about a year and a half and rapid deterioration, I told the doctor we were going to take her off everything and then try the drugs one at a time to see which ones would benefit her. It took almost a year to get her off all the drugs and everytime I would eliminate one she would have an immediate improvement. As soon as we got her off everything the neurologist informed us she could no longer work with us.
Jump forward about 8 years. Judy did well (average life expectancy at the time was 4 to 8 years) when she ended up in the hospital. Because of her condition she had to see a neurologist. His first comment, "We both know the medication does no good for her condition.
A little over a year ago she started having urinary tract infections. I would take her in a week after the medications were done, she would test negative, a week later she would start showing symptoms again and I would bring her in for a urine test and another UTI.
I do not have a lot of faith in the medical profession but I do have a good relationship with our GP. Finally I asked her if she thought it would be a good time to maybe see a urologist. Probably the biggest mistake I have made in the past 10 years. He gave Judy a powerful antibiotic, plus a low dose of nitro fer mac, and Judy was having blowout diaarhea, blood in her stools, or else just little hard stools when she went into the bathroom. I was on the phone with the doctor's nurse constantly, and she finally told me the doctor said I should call the GP about the problems.
I talked to the GP and we found another urologist who said she was going to keep Judy on the same meds. 2 or 3 more UTIs and Judy ended up with C-Diff. One of the treating doctors said it was probably caused by nitro fer mac.
She is on her 2nd UTI since April. I took her into the clinic yesterday but they won't know until 48 hours. The nurse wanted to know why the nitro fer mac was eliminated and I told her it was the er doc or the hospital doc because they thought it caused the C-Diff. She suggested I give her one at supper and one at breakfast. I gave her the one at supper. When supper was over at 6:30, I didn't quite get her to the bathroom in time. I get her up at midnight for her thyroid pill and I could smell her as soon as I woke up. Clean up took about an hour and a half and when I went to sit down she was laying in bed crying. One of the results of CBD is the loss of speech. I lay alongside her in bed for a half hour and finally asked if she needn't to use the bathroom again. She can blink her eyes for a positive answer and when we got in the bathroom it was clean up 3 time. I finally got back to bed about 4 and an hour of channel surfing before I went back to sleep.
I woke up at 7:30 and was hoping the smell was an old smell. So clean-up 4 started. I had just put a gown on her and I was wishing it had wider shoulders so I could just pull it down over her body. Finally I put a couple paper towels over her head to keep the junk out of her hair, got her up and into the bathroom again.
This am I decided no more nitro fer mac and eliminated 2 other medications she is on for gout.
I was just going to send a nasty email to the urologist telling her what I did and if she did not want to work with our GP, I will just go back to letting the GP take care of the problem every month.

Also, many drugs/chemicals CAUSE DEMENTIA. The FDA has issued a warning on Lipitor and all the cholesterol lowering drugs or statins, that they CAUSE DEMENTIA, DIABETES, DEPRESSION--the 3 D's. Inform your drug doctor of this fact. Drugs are a leading CAUSE of DEMENTIA, and are the 3rd leading cause of DEATH in US. (JAMA, 1998.) Drugs are contributing to the earlier and higher rates of DEMENTIA.

This is to Donnalee.
I think the nurse you spoke with about your husbands catheter and severe pain need a little further education.
Just because the catheter is in place and draining nice clear urine all is not necesarily OK. Patients with indwelling catheters often have severe bladder spasms which are excruciating. Vicoden can help but what your really need is something to stop the spasms so in this situation a call to your Dr or his on call service describing the problem ans suggesting bladder spasms will give them the picture and if you have an all night pharmacy they can call in the medication and everyone can sleep peacefully.
As you mentioned vicoden are his bowells being managed as it is very constipating. Anyone on this class of medication should recieve a stool softener every evening unless contraindicated and more agressive laxative and/or enemas if indicated. Severe constipation can also be very painful. Proper diet and fluid intake are also important. See if one of the nurses at your local hospice would be willing to talk to you about this kind of situation and others you may encounter on your very difficult journey. They are trained to anticipate these kinds to problems

joycews,
That is very distressing, for Hospice to be so badly operated, that they mistakenly told you he was soon to die. But that unfortunately can happen...though usually not so badly as that.
Mom's last DH had a bad health episode that had ALL the medical professionals swearing he was gonna die the last weekend of September...heart bad, etc.
They SWORE he was about to die, imminently--that very weekend.
He didn't.
He went to a relative's house with Mom, was signed up for Hospice, everyone knowing he was a goner.
Mom wanted him moved 2 States away--said she couldn't bear to stay where they were, and felt he'd have the best chance to survive if they moved in with us....THAT was a huge mistake, to bring them to our place, but I was trying to honor their wishes, as well as a promise made years earlier.....never thinking things could go worse.
HE lived 3 more months, with help of Hospice and our ministrations.
Mom stayed 6 years, while escalating her worst beaviors terribly, until arrangements happened to get her moved to another relative's.
We're still cleaning up Mom's messes 2 years later.

We continued to get billed for services rendered for HIM,over 1 year after he died--as if we were responsible parties--including threatened by bill collectors trying to get money from us [not blood relatives even].

ALL those agencies that swear they never sell contact/mailing lists, DO sell them we kept getting mailings from companies, non-profits and others, who'd gotten his contact info from those agencies--even the BoyScouts kept soliciting donations from the dead guy for over a year, despite my contacting them to get off their list, and, telling them he'd died, demented and impoverished as he'd lived.

The Hospice people were -generally- helpful,
However, it was pretty clear those who assess conditions, fail to adequately assess conditions and needs, unless a family advocate intervenes firmly.
Some workers sent to do home care are in such bad condition themselves, they should be on disability, certainly cannot adequately care for frail elders--I sent one of them home and just did her job myself--she moved as if she had a broken back. THEN I learned that welfare offices often force welfare recipients to work as home healthcare workers, to get off welfare--never mind they are incompetent to do so.

Home nursing agencies too often fail to adequately assess a person's true conditions. And/or, they recommend tests, labs, procedures, medications, etc. that a person in Hospice, dying, really does not need.
Sometimes it's really hard to figure if they would actually help quality of life, or, just prolong misery.
Pain meds can be a hard issue, as too many Docs still have a hard time balancing pain control meds; and, fears of addicting a person who is genuinely in Hospice dying, is ridiculous.

It's tough, no matter what, whether one is signed up for Hospice, or gets badly assessed in an acute hospital. Anyone in the medical care systems, needs good Advocates helping guide their best care.
We all need to be raising our own Advocates--those u=of us doing all the caregiving, ARE advocates--who will be ours?

It is so sad that your FIL got badly assessed. It sounds like there may also have been some medication errors as well.
How did who discover he was not really dying? Was it only because he lasted longer than 6 weeks? Other?

Not all persons in Hospice are on narcotics, or, the bulk of the pain relief comes from using Anti-inflammatory meds that are not narcotic, allowing them to "have a life" while they can.

Please keep us posted how he is doing.

I understand your feelings about your mother being prescribed medications that may or may not be needed at her stage of life. I would suggest that you speak with the doctors about your mothers medications, why is she being prescribed this or that, what the benefits are, and what would happen if she did not take such and such medications. I would also suggest that you pray to understand if it is the will of God that your mother be given medications that you think that your mother needs or don't need. Has far as how long your mother has to live is not up to you, You should be more interested in keeping your mother as comfortable as possible, and even though she doesn't remember you and your sister, be happy that she is still with you. I know its hard to see your mother suffer through it, I know, I take of my 76 year old mother who is between the beginning stage and stage 2 dementia. But I'm happy that she is still alive. she also takes a lot of medications that are critical to her health. GOD bless and hope everything works out for you and your mother, be patient !

Sounds like a lot of us are in the same boat. My dad has severe dementia. He is bedridden for the most part and incontinent. He sleeps most of the time. He has parkinson's. The shakes aren't too bad, but his voice is so soft I can barely make out a word he says. He was on Hospice for a nasty infection but that has cleared (so he is off hospice). His body is stable, but he can't do anything for himself other than feed himself. Even that isn't 100%. He knows his name and my name. He is lost somewhere in time. He always talks about work (he has been retired for 15 years). He is on comfort care, but he is still taking meds for high blood pressure, copd, etc. I am strongly thinking of taking him off the extra meds and letting nature take it's course. He isn't going to get any better physically or mentally. Watching him decline this past year (at a rapid pace mind you) has been the hardest thing I have ever done. I have his medical and financial DPOAs. I will also consult an eldercare attorney. I am greatful to have seen this post. Up until now, I never even thought of this as an option. (It makes me incredibly sad to keep his body alive while his memories and thought process are dying).

It's important to emphasize, that things like bladder infections can and are, treated while a person is in Hospice programs, IF the POA or Advance Directive stipulates it. That would come under "comfort measures".
Food and water are comforts.
Pain meds are comforts.
It is a wide variety of things people can pick from, to have, or not.
Choices.
It is very hard to tell what is going on with someone who is non-verbal...there might be cues, or might not be. Sometimes we just have to watch their behaviors, in context of what else is going on--like a catheter--which is a likely place for infection.

missymo 1962
As it turns out, my husband did have a UTI and the folley cathetor was not correctly installed so it was causing him lots of pain. So hard to know what is really happening when they can't tell you. I try not to overact but if the pain keeps up, I know something is terribly wrong. Thank you for for your response. I learn from all of you and only hope I can be of help to others. When you can no longer communicate with a dementia patient, the next best thing is to pay attention to the symptoms.

This is such a painfully hard situation to go through!
Stuff like this, is what makes Advance Directives and POA documentation so important!
And even if you have these, some medical and nursing staff have a very hard time relinquishing control over whether an elder gets or stops medications keeping them alive.
Hospice is most appropriate if the person has conditions that will most likely cause their death in 6 months--
Do you or her Doc think that would that happen by withholding those 2 medications?
It is possible, too, to get an extension of hospice classification, under certain circumstances.
There may be classifications that allow hospice-like classification, to allow withholding meds like that, for some of the end-stage dementias or other medical conditions that will result in a person's death, but which last longer than the usual 6-months limit for Hospice.
Ask the Social Worker at the facility she's in, what classifications exist where you are, that might allow "comfort measures only"--then be prepared to have to put your foot down to say what those are for your family--food? water? Oxygen?, pain meds only? etc.

It is up to the family member[s] who have legal authorization over a sick person's care, how this get handled.
Otherwise, a Doctor is mandated to keep providing standard care, to avoid being accused of "patient abandonment" and other terrible charges.

It all needs to be in writing, Legal, authorized by whoever is legally allowed to speak for the patient.

There is nothing inhumane or crazy about stopping meds that extend a life that has lost all quality, which the person living it would never have wanted for themselves when they had their brain intact.
But proper policy and procedure must be followed, to avoid anyone thinking there was anything done wrong.

In working for an in-patient hospice, one of the strongest persons I knew, was a patient who consciously chose to let life go.
There was no quality left to her life. All her systems had been failing for some time, related to many chronic ills.
She couldn't take it anymore; there were no treatments or meds to fix anything, and meds only sustained the total misery she was existing in.
Her Doc, her family, the Hospice, her extended family, all supported her choices.
She was admitted to Hospice, supposed to get pain meds and basic comfort measures--she got to choose some on that--she chose no food, no water or other fluids--only rinse mouth.
She wanted to be turned.
She had a choice of pain meds, which could be adjusted as needed.
Very quickly though, I learned even some nursing staff had issues surrounding this, as did any on-call Docs not familiar with Hospice.
Nursing staff routinely charted "comatose", never administering pain meds.
On-call Docs feared addiction to narcotic pain meds, so refused to change the prescription--nursing staff who cared enough to get pain meds going right, had to work around those Docs until her Doc was available.
Each day I came to check on her, she lay in bed, eyes closed, not moving--it hurt too much to cry or respond.
But she DID respond to my requesting she squeeze my hand if she needed pain meds....which I charted and gave, and passed that information on to next shift....as if they would follow up on that...they didn't.
Only one other nurse over that entire time, followed up on that information.
It took her 2 weeks to die in that situation.
During the time she was supposedly "comatose", about 10 days into it, I answered the phone at bedside from one of her relatives back East, who spoke loving words in her ear, and to which the patient DID try to respond verbally, though it only came out as soft sounds. I had to listen in, to know when to hang up the phone. The call lasted several minutes.
The patient tried to respond verbally several times.
All of us were crying--the caller, the patient and me, by the time it was done.
The fallout from charting all that?
The director of nursing of the unit, mandated that I better re-chart my notes, to make sure the hospital didn't look questionable--I had to make the notes more generic, and less apt to cause a lawsuit, she said.
She was not worried the patient got improper care, only how it made the hospital look.

The take-aways of that:
==Hospice makes a Big difference--it can be very helpful.
==Each patient is an individual, with their own twists on similar diagnoses--so care for one does not always equal care for all with same.
==Even demented people pretty far gone, have some shreds of awareness left, and often try to act on them, even if clumsily--if you know the person and their history, you can better figure out what they are trying to communicate or do..
==The staff in the hospice makes a difference--hopefully, they are trained for it.
==Patients still need strong advocates to keep care properly administered, whatever that care is.

I hope things work out more smoothly for you and your Mom.

ive been less than impressed with our hospice organization but the more i learn the more i realize that their nonchalant bungling is quite a science. my mother has been administered haldol and the fda absolutely dont like to see that in dementia patients. it can kill them from a heart attack . the thing is, nightmarish visual hallucinations and agitation is destined to do the same thing only with more heartbreaking trauma for the patient and loved ones.. tranq's are the lesser of the two evils.. ray charles could see that..

Please be careful when calling in Hospice. We were told my FIL had a matter of 6 weeks or less to live and he became addicted to the pain killers. They also stopped doing things for him and he ended up worse. He is now in a nursing home facility doing rehab and they are trying to undo the mess partially caused by Hospice. If your family member is not close to death -- be careful because calling in Hospice can actually make their condition worse. We had a visiting nurse and a nurse practioner both swear he was near death. The nursing home staff said they cannot imagine why Hospice should have ever been called in for him that he was stable and improving.

I agree with everyone on here. I have a 77 yr old "adopted" grandmother that lives with me. She too has been diagnosed with moderate dementia and Alzheimer's. She is strong as an ox, physically, but mentally not all there. She takes aspirin to prevent a stroke, oxybuytin for her overactive bladder and Cymbalta for her back pain. Her former doctor wanted her to have a colonoscopy but I told her no, what is the point. When it came time for her mammogram, her new doctor asked her if she wanted one, then asked granny if they found cancer, would she want to go thru chemo? Granny stated no. So no more mammograms either. She was on Ariceft for a while, but I stopped that, it wasn't doing any good, plus it was very expensive! I just started looking for a CBRF due to her incontinence and bowel issues, which have become very stressful for me. With no other physical ailments she could live another 10 or 20 years, as her mother lived to 100!

Realistically there is just NOT an easy answer. I think you need to talk with her Dr's and talk with others in the family who you love and trust, and then make a decision. My Grandmother's hip broke and she fell, she had the surgery and then gave up. She was done, SO I got to be the "bad guy" who talked with the Dr and told them just to keep her comfortable. He understood and was VERY kind. My Father has bladder cancer and it spread, we did conservative treatments and kept him comfortable. Often conventional medicine does NOT handle the idea of death well, it is looked upon as failure on their part. They will listen to you and they really should. take care...

My mom was diagnosed about 10 years ago with Alz. When she started resisting her meds, we gradually discontinued them. All she takes now is
an antidepressant and a pain pill. We also have her on hospice but I imagine she will live longer than 6 months. I would think a discussion with her physician that you want a palliative approach would be appropriate.

Horserider.....I asked my/his doc months ago if I could get a nurse or anyone to come to the house. To take vitals, just check on him. She said no, there's no service like that. I believe she lied to me. He gets tired standing in the shower so walking to the car would be rough IF I could get him to agree to it. The sounds he makes get very loud, angry if I mention doctor. The arms go in the arm, swinging around. I am not going to make him like that, just to go to the doctor. And that has happened more than once or twice....I have had to cancel, change appts.

My answer was for Donna Lee (sp)

Sounds to me like he was very constipated. Also make sure he does not have a UTI. Good Luck. Hope you can get some rest.

Two points: My mom with moderate dimentia was taken off her cholesterol meds some time back. They don't even check it on her lab work. We do not administer any of the normal test, colonoscopy, etc. These descisions have either been suggested by myself or the doctors and we agreed. Hospice has been caring for my aunt for many years. Her diagnosis is congestive heart failure. They are great! I never heard of a 6 mos. time frame.

They actually took my dad off of some of his meds and he did a little better for a while too. The statin (wasn't lipitor but a different one) had obviously not worked to prevent his dementia, for all I know it contributed instead. You might not want to stop osteoporosis meds as that could prevent fracture and pain, but cancer screenings are supposed to stop after a certain age also. Meds that make someone feel better or function better are the ones you may want to continue. I had to argue with hospice so that they did not stop my Mom's Sinemet because we had pretty carefully titrated that to where she could feed herself reasonably, and she found it awfully depressing to have to have someone feed her. It probably helped keep her swallowing in better shape than it might have been otherwise too. If you stop an anticoagulant of any sort even if you think maybe it was not working, there may be accelerated complications. Quality and quantity of life tend to go hand I hand but not always. A friend of mine had a loved one who was put on hospice and the stopping of some of his meds actually led to a nearly full recovery and going home from hospice, still alive and well to this day.

The moral of those stories is just 1. YMMV and 2. Side effects can suck big time...but so can the diseases the meds are trying to help with; refer to #1.

I completely understand. When my moms physician wanted to recommend a vitamin for my mom.....the look on my face apparently told him everything he wanted to know...He said "oh, your not doing vitamins?" I said, " No, we are not doing vitamins".

Mom no longer knows me, where she is, nothing.....but yet she is as strong as an ox. Not one health problem does the woman have other then dementia. We stopped the aricept because it was no longer working. My mother's only meds are for anxiety. I would not allow meds at this stage even if she were to be diagnosed with something.

Maybe too many people hold to the old school belief that "Doctor knows Best" and do not question prescriptions. I think most caregivers are way too smart and experienced for that. Bottom line, to me: squeaky wheel syndrome. I've got it. What meds should I take?! None!!! I'm going to keep squeaking loudly!!! Lol

Our situation had a similar, but in no-way-identical component, with my mother-in-law's dementia. At one point, when I got the most recent pharmacy invoice, I noticed that she was being given Aricept [used to temporarily reduce memory loss and thinking problems]. I had noticed she had recently seemed to be more confused and upset about things she had previously begun to ignore, or at least no longer dwelt upon: the behavior of other residents [shouting, crying, wandering into her room]; when was the bus coming to take her home?, etc. I asked why she had been placed on Aricept and pointed out that the only thing it seemed to be doing was making her suddenly aware of her unfortunate plight and depressing situation,and making her more miserable with that awareness.They agreed, but said the doctor had ordered it so they had to dispense it. I asked the supervisor to ask the doctor if it was necessary and to see if it could be discontinued. Bottom line: it was stopped immediately and I realized that some things may be done routinely because of the "general situation", but without regard to the specific needs and welfare of the patient. It was only increasing her misery, and ours when we witnessed it, rather than improving her quality of life.

I approached hospice nurse about certain drugs Mother has been on. After consulting with her doctor, too, he agreed that she did not need to be on anything but her thyroid prescription and Depakote ( shivers) to keep her calm. Disgusting disease. Five years ago when I became her proxy, I asked her then doctor about the validity of 21 prescriptions. Disgusting x 2.

My sibs and I were assisting an elderly relative who was in a nursing home for an orthopedic injury that was not healing. When the docs told her the injury was not healing and that they could not perform surgery because shoe would not survive surgery (she was 92) she fell into a deep depression. She didn't want to live if her life would be restricted to the bed in the nursing home. And since she wasn't receiving rehabilitative therapy, Medicare wasn't paying for the nursing home, she was out of her meager savings. We found it interesting that as long as they were being paid privately, the nursing home people were very eager to give her anti-depressants and all of her regular meds. When she began to display typical end-of-life behaviors (like visits from dead loved ones) they put her on anti-psychotics. We questioned the need for those, since she was making it very clear she just wanted to die and she did not have dementia. The medical folks insisted she HAD to have those meds, and they would improve the quality and length of her life. Well, the day finally came when he savings were exhausted and she would have to go on Medicaid. Surprise, Surprise! The medical folks at the nursing home took my brother aside and asked him if we really wanted them to continue the anti-depressants and anti-psychotics and some of the other meds for non-life-sustaining issues. My brother told them no, that we were trying to have those removed for MONTHS! The medical staff agreed to take her off of anything but pain meds, and she died within two weeks.

I'm not saying that it was all about money, but the timing of the nursing home staff being suddenly agreeable to removing the meds was pretty interesting. We're glad our relative is now at peace.

meatjeanne - Talk with the Dr. before taking him off the meds -- I don't know if they are a "step down" med, where if you take the person off suddenly it causes problems (ie him coming unglued/agitated). The Aricept and Namenda slow the progression of the disease IF they work for him (you can look up the research studies online to better understand the statistics & how long the meds are likely to work). According to what I have found in the print-outs IF they are working and your husband comes off of them his condition will decline very rapidly to the point that it would have been had he not been on them at all (possibly bedridden, not able to go to bathroom, etc). Putting him back on them will not restore him to where he is now. If they are NOT working there should be very little change . So basically you can't tell if they are working unless you take him off and he declines, and the decline is irreversible -- sort of a rotten choice to have to make.
Is it possible to get home medical care from a visiting nurse or Physician's Assistant (PA)? Kaiser "prescribed" home nursing/physician's Assistant visits for dementia patient because they determined that the dementia made him "homebound" when it came to going to the Dr., (it was a bit of a fudge, since he could walk a mile if he wanted), but what was relevant was that he was mentally incapable of going to the Dr.s office due to his disease. It did make it MUCH easier to get medical care for him.