Why give "maintenance meds" (blood pressure, cholesterol, vitamin D, potassium, etc) to a person with late stage severe dementia?

this must be a "stump the audience" question haha

Is this person your mother?

Is this person receiving medical care from a physician to manage the symptoms of advanced dementia? Is she in a nursing home, your home, her home? Please provide more details so we can help. Is she being comforted, in a calm environment? Your second post seems rather cavalier and the subject is tragic. What's up?

It is kind of a stump-the-audience question, isn't it? You didn't get 15 members jumping in immediately to give you an answer.

Sometimes I think those maintenance drugs are there from habit. They were needed/useful once and nobody has bothered to evaluate whether they are still useful.

The first year my husband had dementia the symptoms were very extreme (probably the result of inflamation in the brain, which we didn't know then). We got a wonderful geriatrics specialist for his primay care, and she took him off all of his drugs except those prescribed by the dementia specialist to treat those symptoms. As Hubby's symptoms lessened and it became clear he may not be near the end, the geriatrician gradually added the maintenance drug back. If he was going to be around, possibly for a few more years, he might as well be as healthy as he could be.

Sometimes it is not clear-cut what is for quality-of-life and what is life-extending. For example, my husband has heart issues. He'd really prefer to die of heart disease than to die of dementia. Why is he taking heart medications? When I discussed this with a cardiologist he said the drug could be considered a life-extender -- that is why he prescribed it for me -- but it also protects against stroke. People don't necessarily die of strokes, but suviving a stroke with dementia would be defintiely a decrease in quality of life. So to continue it or not is a judgement call.

All of Hubby's other maintenance drugs reduce his discomfort or improve the quality of his life. But it is a question we revisit at least a couple times of year, with a doctor who specializes in treatment of the elderly.

So, I think your stumper question is an excellent one. Is this patient eligible for Hospice? I think that they could help the patient's family sort out what drugs could be dropped. And they could add other drugs to keep this person calmer and more at peace. If the patient is not yet eligible for Hospice, I think a frank discussion with the doctor is in order, by the person who has medical proxy for this patient.

Good question.

This is in fact my mother. She is in a "dementia care" unit of an assisted living facility. It is FAR from a calm and comforting environment, anyone with experience of this type of arrangement knows what I am talking about. She has people touching her, following her, climbing into her bed in the middle of the night, spitting on the floor, talking "martian" to her, etc etc etc. I cannot afford to bring her back home with me as she wuld need 24 hour care. (She lived with my husband and I for 2 years) Her doctor tells us she has "dead brain tissue" and I have personally witnessed several episodes that seem to be strokes. MRI's show progressive loss of active brain matter. Her days are mainly spent sobbing and begging to die and I am not exagerating. They keep mixing up medication cocktails to see how much of the day they can get her to be sleepy without falling on her butt and breaking something. she has lost "her voice" , her dignity, any quality of life, and I feel that I am failing her by not being able to advocate for her wishes. Hospice , I am told, is not involved until a medical doctor states a person has less than 6 months to live. Sad to say this but I actually pray she has a heart attack or gets cancer, like other people get....Is that twisted??? With those ailments there are medications that control the pain and bring comfort during the process of what "is to be". Mental pain is just not quatified the same way physical pain is. It drives me crazy when she is asked 100 times a day "Does anything hurt?" WHAT??? Every molecule from her head to her toe hurts--just not in a "physical" way. Just curious why doctors continue to use heart medications to extend this "life" , and is it barbaric for family members to ask why??

Such a sad, sad situation for both you and your mother. I agree with everything Jeannegibbs posted - My mother is in a facility and hospice was called in last year due to the severity of the pneumonia she had. She has since recovered, but it was hospice that sorted out the medications she was on and changed some and added new ones to help with the breathing and discomfort.

She improved within a day or two. Your mother is obviously suffering. As Jeannegibbs said, there are medications that could help keep your mother calmer and more at peace. Has your mother been evaluated by a Hospice representative? They are the ones who come into the facility and review the chart and visit the patient and then decide. In my mother's case, the nurse manager of the floor contacted Hospice and I met with them after their review.

What I learned was there are medications that are only available through Hospice. These medications had to be delivered to the facility at the request of the Hospice nurse practioner. Your mother is suffering mental anguish and as Jeannegibbs said someone has to talk to her doctor about this. Not only does Hospice provide the medicines, but they also have volunteers that come in and visit with the patient and can offer so much comfort.

In my mother's case, her doctor wasn't responding quickly enough and things were delayed bacause of this. The facility was calling ,him, as well as the Hospice person. So, I called him too, and was told he wasn't available - I described situation and told them if he's not there, I wanted to speak with his partner. Taking things into my own hands expedited the process. We are the patient's only advocate. In my case, the sqeeky wheel gets the oil. Hope you can get help for your mother. Bless you and take care.

I am caring for my mother in my home. She is in the last stage of dementia and is on hospice. Hospice has been absolutely wonderful and has helped me with this question. The goal is her comfort. She is on oxygen for a lung issue and I still give her a vitamin (keeping up her nutrition helps prevent pressure sores which are very painful). She takes a med for her reflux (again, for her comfort), and a cough syrup. I have meds for her mental comfort as well and a sleeping pill. I have morphine on hand for when we need it. One of the biggest benefits of hospice is the nurse being available for questions such as this and to discuss any concerns I have. She moved in with me after being in a nursing home until money ran out. No-one thought she would live this long, but she has been here nearly a year because she improved and stabilized for awhile, but she is again going downhill now.

See what you can do to get her evaluated by hospice and make that an independent hospice group not necesicarly the one(s) used by the AL. Not all hospice are equal. The choice of hospice used should be your decision.I've found that sometimes the DON at the NH has their pet providers and not always in your best interest. Medicare will pay for all medical services once they are on hospice too but the room & board part is not.

This is my experience in getting them evaluated:
my mom, who is mid 90's and Lewy Body dementia, moved from IL to NH last year. Last fall she had 2 TIA's back to back, 25% weight loss in 6 weeks, critical H&H. When we had her care plan meeting, I brought up hospice and that I wanted her to be evaluated by Vitas.Vitas was the group that my MIL was with and I found them to be very, very good both for my MIL (a most difficult person) and in dealing with all the family members, none of which lived in the city. I also suggested Compassus, which a friend had been with as a hospice patient - they were also great - but not in my mom's area. I wanted Vitas because they have a free-standing unit that patients can get transferred to when it really, really is near the end of the hunt in the city where my mom is. This one is an old women's & children's hospital that has been retrofitted to be a hospice - it has a whole different look and feel than a hospital or NH, very calm and soft as opposed to the NH. If you have either in your area contact them.

As 3pink said, I too found was that not all hospice providers are equal. Only a few carry the more serious pain management Rx's on them that cancer patients need. Some only do vitals and basic evaluation and have minimal training. The bigger hospice groups have enough staff that if your mom needs a class 4 drug they can administer it right there and then during the hospice visit, otherwise, they have to have the nursing staff contact the MD at the NH and put in the recommendation and that whole process takes time...often a day wait. Not good.

My mom rallied and no hospice needed, she's a tough old bird.

Ohio, can you call in a different doctor for another diagnosis? It sounds like One Flew Over the Cuckoo's Nest over there. She should be in a "calm and comforting" environment, and they are out there. Have you called the Ombudsman for the care facility? There is no reason for her to be suffering so. So sorry for you both.

Hospice is a huge help

The hospice usually does either FAST or MRI score to evaluate:
FAST - Hospice Prognostic Systems:
The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss over 10% within six months).

Functional Assessment Staging (FAST) Stages
-

1. No difficulties
2. Subjective forgetfulness
3. Decreased job functioning and organizational capacity
4. Difficulty with complex tasks, instrumental ADLs

5. Requires supervision with ADLs
. 6 Impaired ADLs, with incontinence

7a Ability to speak limited to six words
& 7b Ability to speak limited to single word
7c. Loss of ambulation -
Inability to sit, Inability to smile
, Inability to hold head up
.


************
The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. Mitchell (2004) developed and then validated the MRI by examining data from over 11,000 newly admitted nursing home patients. Among patients with a MRI score of over or equal to 12, 70% died within 6 months (mean survival time not reported). Compared to FAST Stage 7C, the MRI had greater predictive value of six month prognosis.

Mortality Risk Index Score (Mitchell). MRI is
p
oints system based on risk factors:


Complete dependence with ADLs
1.9; Male gender
1.7; Cancer
1.6 Congestive heart failure
1.6; O2 therapy needed w/in 14 day
1.5 Shortness of breath
1.5; less than 25% of food eaten at most meals
1.5; Unstable medical condition
1.5; Bowel incontinence
1.5; Bedfast
1.4; Age over 83 yrs.
1.4; Not awake most of the day
1.4.


Risk estimate of death within 6 months

(based on NH residency)
Score Risk %

0 8.9

1-2 10.8

3-5 23.2

6-8 40.4

9-11 57.0

= 12 70.0

The other thing is that once they go on hospice, the rules are pretty strict on seeing doctors. They pretty well have to be seen by the MD’s affiliated with hospice. If she goes to see her old MD or you take her to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit, hospital or ER cost. Everything medical has to go thru the hospice.The NH get this but this can be a real issue for hospice at home situations. Often this can be hard for family to go along with but that is what the hospice system is about. Good Luck, none of this is easy.

Ohiodaughter, I know what you mean about mental pain not being quantified. I was in ICU several years ago and I've never been more miserable before or since. I was hallucinating and delusional. It was awful. It seemed like they came around every hour with that smiley face chart and asked me to rate my pain. I was never in any physical pain. But I kept thinking "Where is the anguish chart?"

It would not have been appropriate for them to stop treating me because of my anguish. I had an excellent chance to recover (and, obviously, I did). But if I'd had terminal cancer or was in late stage dementia, I would have wanted comfort measures above all else. Hospice understands that.

Ohio, sometimes the facility caregivers are really wanting to introduce hospice care into a situation but are afraid to mention it (and in some religious-based facilities, are barred from mentioning it) to the family. It sure sounds like they could help. Have you asked directly for a hospice consult? If you don't get one, ask the reasoning behind why not. My heart goes out to you and your Mom. She clearly raised a loving and compassionate daughter.

Palliative Care: My mother does not qualify for hospice either and there's nothing more medically (like surgery or even non-invasive treatment) that can be done. She has a plethora of things wrong with her and just needs whatever can be done that will keep her comfortable. She is receiving care through the Visiting Nurses Association and one of the nurses determined that Mom needed palliative care (which they provide). Once a week, sometimes twice, the palliative care nurse comes out to see how Mom is doing and takes on whatever issue needs to be resolved. She's been a very supportive part of our "care team". Although my mother is not in the same situation as yours, palliative care may actually be an alternative that is a workable solution for you.

Wow, I am so sorry for your situation. I do believe there are things much worse than death and with all the advances in medicines, I would lean towards whatever makes you and her calm -- not maintenance type drugs extending "life".

Once enrolled in hospice care, their staff will advise and help manage the patient, lessening the burden family members/caregivers may feel about what, when, how to medicate.

Check out our news piece that talks about how increased communication between doctors, patients, and their caregivers, may lead to better outcomes for people.

Doctors Encouraged to Discuss Care Options, and Goals With Patients and Caregivers
https://www.agingcare.com/News/doctors-discuss-care-options-with-patients-149886.htm

I am no expert but I thought as i read that the person still has feelings and to provide end stage love and affection. I know its late stage but would an anti depressant help eradicate the sobbing/crying? Or, what about an ativan per day to relax this person? It might be anxiety driving all these symptoms and ativan will work nicely. Trust me, I use it for my panic attacks. I take 1 mg as need but i believe it comes in lower dosages. Its worth a try. And, the subject of dignity. Keep the person cleaned, hair combed and nice clothing whether its street clothing or pajama type clothing. i plan to provide my mom with dignity until her last breath.

I had planned to provide my mom with dignity also but now it is impossible. Dignity is not sobbing and shaking all day and begging to die in front of 25 strangers all day and smelling from a wet "pad" no matter how many times a day it is changed by caring aides and dribbling applesauce down your chin because your hands are shaking so much you miss your mouth. She gets her hair done every Thursday at a salon in the facility, she wears clean street clothes every day and cries because she can't remember how they got on her body. As for ativan...she gets so much medication she can't make her lips move to form a word. Ativan didn't work to stop her crying so they switched to klonipin 2 times a day on top of trazodone. They have tried every drug to the point that she was hallucinating and couldn't stand up and she ended up in a psych ward for 15 days. I realize what your "plan" is...it was my plan too. My point is: those plans go swishhhhhh out the window when a person gets to the point my mom is at. We have been doing this now for 2 years...this NON-existent "quality of life" the dementia patient has to endure day in and day out. It's the "ground hog day" from hell. Trust me.

My heart goes out to you, Ohiodaughter. You are facing what all of us caregivers of demented loved ones dread. Not all persons with dementia go through what your dear mother experiences, but we all know it is a possibility. And no plan in the world can ensure it won't happen to the one we care for. It sounds like her medical providers are trying hard to come up with something to ease her anguish. Keep doing your best; it is all any of us can do.

And I know this sounds trite and impossible, but please try to take care of yourself, too. It is what your mother would want.

The key here- and "Hospice" and "Palliative Care" and "Dementia unit Assisted Living " professionals will not be able to argue this: FOOD...I repeat...FOOD. As long as my mother continues to put a spoonful of applesauce or pick away at the chocolate cake (she no longer eats the main course...she only eats tiny amounts of sweets...obviously enough to keep her metabolism going... she is not a candidate for any "end-of-life" programs because in fact she is NOT at the end of her life. Her "brain" passed away about 8 months ago, her heart "pumps" but it doesn't "feel", her "eyesight" is excellent since her cataract surgery last year but she can't "see" her family or friends, they are now strangers. her "legs" work fine leaning on the walker but they move in a different direction than her eyes are telling her to go. She has never had a UTI....her "bladder" couldn't be healthier...She's very "regular" thanks to her daily dose of Dulcolax, which extends her belly to the point where her pants are now too tight. She sleeps okay...as soon as the trazadone kicks in, and if she gets edgy during the day the klonopin will knock her out for a while twice a day. THIS is NOT a life! The assisted living staff knows in no uncertain terms that we are not interested in "extending" this life for any religious reasons or any other reasons. We as a family pray every day her misery comes to an end and we can finally know that she is not suffering this mental pain.

I Just had the HEAD nurse from the "dementia care assiisted living facility" call me to tell me that they are doing a UTI test for the millionth time (which in our case has been negative every single time) due to our mom's agitative state and her incessant "scratching" and "wiggling"....and I was informed by her that since our mom has never told any of the staff " I just want to go to sleep and never wake up" or "get me out of here right now"...that our mom is "PLAYING US". Good thing I can't jump through the phone line right now.

I have asked the same questions about the flu and the pneumonia vaccine. When is it time to be grateful that their ARE deadly diseases still around?

Ohiodaughter, I'm sorry I don't understand what you mean by FOOD. Many people continue to eat even in the end-of-life stage, until perhaps the final few days. My father ate ice cream the day he died. A fellow dementia caregiver reports that her father had not been eating for several days and then had a large and normal breakfast and seemed more alert the day he died. I don't understand your post about food.

Your mother is "playing you"?!! Well, now you have an explanation for all her suffering. Can't professionals sound like total idiots sometimes?

Ohio daughter, have you ever called the nursing home ombudsman representative; they are the go-between for the families and facilitiy to ensure your loved one is receiving proper care. I have been in my mother's room when this person has stopped by unannounced; which I think is a truly good thing. She told me to call her anytime I had concerns. The one I deal with can be found by calling Elder Services.

Also, when I am not satisfied when my mother is having a problem, I track down her doctor - he is the one we chose for the nursing home - and is not easily available. Don't know if the nurses like me going over their heads, but there are times that they are extremely busy and I realize this, so I just go ahead and call the doctor and leave messages until I hear from him. My heart breaks for you and your mother. And, yes isn't it something when the professionals can be total idiots saying your poor mother is "playing you". Blessings to you. Take care.

I talked with the "geriatric psychiatrist" on the phone when our mom was transferred from the "psych ward" to the assisted living and she was crazier than my mother. She told me on the phone after I was questioning meds and amounts " I don't just go around snowing old people you know." I am NOT lying. I even asked her to repeat the statement. When I expressed concern at the assisted living I was told that she is the premier geriatric pyschiatrist in the area (a large city in N.E. Ohio) and that I DO want this particular doctor on my good side....I do NOT want her mad at me...according to them. I came right and told the doctor on the phone that if I have any more questions in the future I will have to have one of my briothers call because she and I "don't click". I thought that was pretty polite! I am not saying the assisted living people doing what they are paid to do. My mother is fed, dressed, showered, and medicated. They are NOT trained psychiatrists...they are not "one-on-one" caretakers and can't address each individual patient...I understand that. But they also should not accuse a person suffering from dementia and in complete mental distress of "faking it" for her family members! I also want to choke the nurses who say " I wish my mother was still around so I could hear her voice. I don't even care if she's complaining." That is NOT TRUE, false, stupid, not comforting, and makes me want to choke you. Why can't they be real?

I am so sorry. It sounds awful for her and for you.

to "jeannegibbs" : what I mean by FOOD is this: The only way my mom is going to escape this hell on earth is to stop using her own hand to lift any bite of food and put it into her own mouth. Until that happens- it's game on. One year or 10 years...modern medicine can keep her "body" running and you don't have to have a working brain to "exist", the aides will do all the rest for her...and time marches on. She doesn't HAVE to be comfortable, she doesn't HAVE to smile, she doesn't HAVE to feel love, etc et etc....that's what I mean.

To LindaGS: I hear you sister....I am so ashamed to admit that when friends of mine lose their parents "naturally" and peacefully and quickly I say under my breath "Do you even know how lucky you are?" I often think this mental torment is worse than any cancer. Cancer has medications to control pain and it has an END.

I'm so sorry about your talk with that psychiatrist - guess that is the reason some are called "quacks" cuz they are. Just the fact that you were told that you don't want to be on her "bad side" is pause for thought. Sounds like a huge ego driven one to me lacking in empathy and decorum.

I agree with you about people who pass away naturally and peacefully - it is referred to as a blessed death and truly it is. I wish you could get Hospice in there to take over - this seems to be out of control and not the best example of our medical professionals. Your mother is suffering mental anguish and so are you by having to watch and not be able to help her. At this stage, she should be resting comfortably and at peace.......hopefully someone will come along and help and guide you. I will keep you in my thoughts and prayers. I just feel really, really badly you are gong through this. It is quite upsetting to say the least.