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This patient spends every waking moment sobbing, shaking, begging to die, does not recognize any family or friends, doesn't know where she sleeps or eats, is highly agitated when not heavily medicated, basically not one ounce or "quality of life" or "dignity" remaining. Why?

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Responding to girlhart's concern of hospice only paying for 6 months, that is not correct, at least in some cases. In order to be accepted to hospice, a doctor has to state that the patient is expected to live only 6 months or less, but if the patient gets on hospice and the decline continues but more slowly than expected, a recertification can be made. My mother (dementia) lives with me and has been on hospice 17 months so far. Yes, Suzmarie, hospice is great. They did provide us a hoyer lift which we used earlier but now not often. As far as maintenance meds, hospice recommended keeping Mother on aspirin to help prevent more strokes, but a few months ago, I asked about taking her off that and they agreed it's fine to discontinue it. We have her on osygen, vitamins, a stool softener & laxative (her muscle tone is very poor and has trouble with bm's), a cough medicine, and Ambien. All for comfort only.
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She doesn't have to get any med that you don't want her to get. As her child, you are her advocate. You speak for her. What would she want, if she could see herself like this? If you have a dr. who insists that it's wrong to stop these maintenance meds, find another dr. A gerontologist would be best. Hopefully, you have a DNR order on file at her facility. I did this for both of my parents who were demented. The agitation and fear are also treatable symptoms that are more important to treat at this time than blood pressure, high cholesterol, etc. Medicare only pays for hospice for 6 months, I believe. That is why most drs won't get hospice involved if they think it's too early. However, Palliative Care would certainly be beneficial in this situation. There is a great pall. care website that you might be able to google. I would not feel guilty about not giving your mom meds that will prolong her life, if she is miserable. Just keep her as comfortable and calm as possible. I feel bad for you. I went thru some of this recently with my dad, who mercifully died about 6 wks ago at 93, although I miss him terribly. He had lung cancer, which we did not treat, so we were able to have hospice come to their Memory Care Unit for him, and they were wonderful. But he no longer suffers. Now my mom's dementia has gotten worse, but she is not as bad as he was, so am keeping her on her meds. I'm not ready to lose them both so close together. But she is not agitated, crying or afraid. She likes where she is living, likes the staff, says how nice everyone is. She doesn't seem miserable to me. There may come a time when I stop her meds. Good luck!
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Wow. A lot of great insight here. I am the united airlines retiree. I am looking to get mom home with me. She qualified for Medi Cal so they would pay a caregiver I believe, an 8 hour day at 11.50 an hour. I don't know how they work back ups if main CG is sick or needs a vacation:

I know I would need a break I just know it because I had her here for 2 years and I was burning out.....She only gets to keep 35 dollars a month for herself; the rest of her SS goes to the NH. I'd get my UAL retirement and could receive the 11.50 an hours as mom's caretaker but there is no way we could afford respite.

For the person wanting to take mom outside in the fresh air; medicaid medi cal or medicare and hospice all or some of these, will lend you a hoyer lift; an absolute miracle. My friend was able to move her father into bed and out of bed and into wheel chair with this and he could sit at the family table or be taken outside. I know hospice will provide one for sure! it is a must have!

Mom gets a sleeping med about 8:30 p.m. each night sometimes it works and sometimes she gets up a few times.. whenever I am next to her on the bed watching lawyer shows in the afternoon she sleeps without difficulty; when she spends the night she sleeps all the way through...is it being with me or coincidence
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Because we live in a medically dominated culture that finds death to be some failure on the part of the doctor determined to "save the life". Add a society of litigants and you can understand their fear. Then factor in our general unwillingness to accept death as normal and inevitable for all of us and our beloved parents suffer as we are tortured watching them diminish incrementally and miserably until they ultimately do die anyway! I find this incredibly thoughtless and cruel and then think of the screams of people who thought "death panels" as a terrible thing, rather than the possibility of help to end life with compassion, dignity and understanding.
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Antidepressants may help your mum's mood.
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How sad. This disease is an ugly one. It is cruel not only to the person in it but, to those caring for them. My Mom is in teh moderate stages of Dimentia. On Mothers day she went onto cardiac arrest. My older brother was able to revive her. She spent a few days in the hospital. She had no potassium in her system. Which causes death. Before this occured her companion had packed up his belongings and walked out. He could no longer take the meaness. I have her at my house. we are getting her the medical care she needs. She will not sell her house and move here. She lives 3 hours away. Until we can get her to make the decision to sell and move here, we just go back and fourth between places.

I look back now and wonder if it would have been better for her to have died on the day she went into cardiac arrest. I feel guilty for feeling that at times. I want my Mom to leave this world with her dignity. For her life is changing quickly. I love her so much yet, I know she has already deid . This is not my Mother.

We put our pets down when there is no hope and we do not want them to suffer, yet humans must stay alive and loose all quality of life, dignity etc. I have already told my partner that if I get this disease, I will end it when I feel , I can no longer control my words, actions etc. I wish we as humans had more compassion and mercy than we do for our pets.
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Hi SuzMarie. Yes I'm blessed in so many ways and don't realize it sometimes. There has to be a way for your mom to get better care. Check with the Department of Aging (DADS) in your area if your moms income and assets qualify you could actually get paid for keeping her at home. Of course it's not a high salary - whatever the home health aides in your area get paid - probably about 9.00 an hour (up to 40 hrs a week). Like I said not a lot but it is something if your mom qualifies. I tried it but my mom had too much insurance, SSI and assets (her home and auto). You may be able to get volunteers like from your church or friends and other family members to come in and give you a break from time to time.

I'm hoping my sister who lives 15 minutes away will help out some this summer while school is out. The Hospice that provides moms care has volunteers and I do have a couple of good friends that come and sit with mom occasionally. I hate to ask, but they are so willing and I know I need time away. I do run out to the store or pay bills and I go to church on Sundays, but I don't like to leave her by herself for very long. As the end draws closer I know it will become more stressful and mom will require more attention.

My mom is bed-ridden she has a new scooter that she has only been in once but I can't get her up by myself. I would love to be able to get her out of bed and take her outside for some fresh air at least. It's so hard to watch her slowly fade away, but I'm so glad I'm here and she's not in some nursing home. I cherish the time we have together and just try and make her as comfortable as possible.
I no longer worry about her diet whatever she wants she gets - used to limit her intake of coke, but the doctor said no need to worry give her what she wants.

There are resources out there, but you may have to do some research go online and see what you can find. Try calling VISTA,s Innovative Hospice Care listed on this site 877-658-2908. I wish you strength, courage, patience and persistence. God Bless
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You are so very lucky to have a military retirement. I retired for united airlines early but I could not live on it. I am glad you can, and also take care of your mother. I can dream and I will and i will still look for a way to bring mom back home with me.
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Dear OhioDaughter. I'm feel so bad for you and your mother. I would go along with what most everyone else is saying. That is push for Hospice. There are some actual Hospice facilities if having her at home is not an option.

I moved cross-country in Nov 2011 to take care of my mother who has dementia/alsheimers. It was not easy but since I was a window I was too far from family and it felt like the right and logical thing to do. In May I had to take mom to the hospital because her blood pressure was really low and she was very weak. That is when we got the diagnosis of Cancer. Not just cancer but pancreatic, liver and gallbladder cancer in advance stage. My mom is 85 and the docs said with her age and condition there is no treatment. So she is at home now under Hospice care. However the majority of the care still falls on me, but the Hospice team has been great. I know as the disease progresses that the Hospice team will come more frequently and stay longer.

The Hospice doctor said I can stop giving mom all the supplements she was taking (Vitamins B,C,D calcium, multi-vitamins). So now I only give her the prescription meds - especially the dementia meds and blood pressure. I want her to keep her dignity and faculties as much as possible. I think it would be too hard for me to care for her if she didn't know who I was. It's not easy by any means, I have no social life right now other than 1 1/2 hrs that I go to church on Sundays. However, my mom is important to me as she sacrificed many years for me so now it's time for me to give back. I know everyone is not in a position to put their life on hold and take care of their parents. Trust me if I didn't have my military retirement then I probably wouldn't be able to do this either. With my retirement and stipend from my GI Bill (I'm a full-time student)(online) I can maintain my bills and responsibilities and still take care of my mom and earn my degree. So it's a win-win situation in my case.

I hope you can figure out a better solution for your mothers situation so she can live the rest of her days out in dignity, comfort and most of all peace. God bless you both.
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I was told last evening bny a very caring nurse's aide that in her 16 years of caring for dementia and alz. patients she has neve seen one suffering like my mom where it wasn't a matter of tweaking the right medications..however she also said that for any medication it takes at least 30 days to even assess whether the medication is helping or not. She's right...30 days with this one..nope...not helping mom, 30 days with the next...nope, causing hallucinations, thirty days with a new one, nope...causing falls...and ON and ON and ON. We are going on our 14th "30-day" trial period and some people have to do this for 6-10 years! My mom's a suffering guinea pig running around in the wheel at 100 miles an hour getting nowhere.
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Ohio, when my mother finally gave up fighting a cancer that ravaged her body, my dad told us he had stopped giving her all the vitamins that she had been taking. I believe he continued giving her prescriptions for blood pressure and thyroid up until she could no longer swallow though.
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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.
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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.
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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.
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I am so sorry. It sounds awful for her and for you.
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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?
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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.
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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?
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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?
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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".
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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.
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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.
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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.
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