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My mom has had Alzheimer's for about 8 years. She's 81 and has been in a nursing home- a memory care facility- for a year and a half. Recently, Alz drugs were discontinued and then she developed a bad cold which lead to pneumonia. Beginning about 2 weeks ago, she began refusing care most of the time. She also pushes her food away, isn't drinking much, and she's refusing her meds, some of which she gets to reduce agitation. This is not all the time, but at least part or most of every day. Could she be trying to check out, or would she be able to make that decision? My MIL who had Parkinson's did make the decision to die, but she had her wits about her. Mom can't communicate much anymore. She gets some words out, and seems to understand words. She's even still able to read some words (former English teacher!). She rallied for a visit with my adult sons 4 days ago. But yesterday was awful. She wouldn't even open her eyes when I was there, which is very strange. They can't get her to cooperate for a urine test. I don't know if she's trying to tell us something through her actions. Do any of you have experience with this with an Alzheimer's loved one?

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It is so sad, and feels very hard, to be in this situation. My heart goes out to you. Do you have supportive people helping you cope? Those could be a real help.
It can be very heart-wrenching to be in that Med.Directive/Advocate position of making end-of-life choices for someone who no longer can.
It can Feel like it goes against everything we ever learned...and certainly, against inner survival instincts, to have to be the one to stop life support activities [food, water, meds, etc. treatments].
Often, people "rally" before they go. It sounds like maybe yours did that.
The pattern usually always is followed by relapsing into their illnesses and/or dementias...science has nothing to prevent or improve that.
It has been my experience, during patient care of elders and in hospice, that even those with severe dementias, including Alzheimer's, can often show some evidence that they do have some thoughts left, which they might wish to act on...and will try to do so. Stopping eating and drinking, is often that.
Whether that is intentional, or related to them "forgetting" to sustain themselves, is a moot point...they are too sick and science has Nothing to help it with.
They might, or not, be able to express them clearly to others.
To those not paying attention, the evidence that they have any cogent thoughts, can also resemble behaviors of a dementia'd mind...unless one knows that person, or has watched their behaviors closely for some time.
Things people might be ask themselves, might include:
---- Would your elder want to exist long-term, in a facility with no way to communicate and _no quality of life_?
Many, with minds intact, express strong feelings about NEVER wanting to end up in vegetative circumstances, much less prolonged using advanced life-saving techniques.
Most just say they wish to "be kept comfortable"...which can differ, per person, but bottom line, they don't wish to have their lives artificially extended, at the very least, not beyond reason.
---Inside yourself, is it OK to allow loved ones to naturally dwindle and die due to their illnesses/conditions, faced with only worsening of that?
You are her Advocate...make sure the facility honors her wishes in the most humane ways possible.
Search yourself; see what your beliefs are, and how those might help support allowing someone in her circumstances to die more naturally, with as much Grace as possible.
----If there is an Advanced Directive on file there, to prevent anyone from using advanced lifesaving, artificially prolong life, are there some staff who might be struggling against that? Some do. Even some dealing with writing orders for hospice patients.
We cannot prevent death; nobody gets out of life, alive. We miss those who go before us, terribly. We want to keep each piece of our hearts with us.
But we cannot, no matter what, prevent anyone dying.
We only have a certain amount of control over some of it, for a certain amount of time.
Sooner or later, we must allow them to die, with as much _Grace_ as we can muster, holding tightly to the good memories.
Imho, they are still there in our hearts...we can still talk with them...only their bodies are gone.
Keep talking with her. It is said that the last sense to go, is hearing [unless it was already gone].
In those precious, brief moments during the dying process [minutes, hours, days or weeks..sometimes months], one might experience that sense of Grace, sort of like attending a birthing for them into another level of existence.
Kinda like witnessing and feelings at a birth into this life. Just at opposite ends of the lifespan.
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skanea, I don't think so. The NH staff may have some thoughts on the subject, based on frequent and repeated experience. Hospice probably has the most experience along these lines of any group, but they are often wrong in their predictions, too.

As Shakespeare put it, “Death, a necessary end, will come when it will come.”
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My husband has been in a nursing home for 2 years with alz disease. He has reached a point where he rarely speaks, recognizes no one, is unable to get himself in/out of bed (needing a machine to do this for him) but he is still eating very well. Is there any way to predict his death?
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See how he is doing over the next few weeks but don't make any rash decisions about taking him home.
You can try for a W/E if he is mobile enough and you can get him to go back, or before that try taking him out for meals or a drive.
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My husband has been in the NH for a year. Months ago he went through a stage that he did not wanted to eat, tired, unable to get out of bed, and uncommunicative. I also thought he was "giving up". During the past weeks, I have noticed a big change. I must say that today, he was another person. He seemed to me like a completely healthy man. I talked to the nurse about this change, and she said that is part of the process. She said that at the time of the Sundowner syndrome, he is also another person. I am still feeling the hurt of leaving him there looking so "normal" and pleading me to take him home.
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Yes- she has had a DNR in place for a number of years now. She did this when she WAS of sound mind. She isn't now- she has Alzheimer's. We discussed all of this when she was in her 50s. I have already talked to my kids about what I would want for myself, as well- we all should. So I have no qualms whatsoever about letting her go. As I've stated, I just wondered if she could decide to die as a patient with advanced dementia.
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She can if sound of mind, make a DNR order. She can refuse to take medicine and care. usually the humans around will then say she is NOT in her right mind and get her considered incompetent, so they can force it. I am NO expert, I am a person who is a rare few. this may or may not help but. A Human being is supposed to be free here. if they could charge you when you commit suicide the powers that be would. The poor woman is 81 and suffering, Only she knows whats going on in her mind. She has had a life. Help the Dr's determine if she is sound in mind. Then ask her-talk to her and be calm and do not treat her like an idiot or incompetent because she might want to let go, she's tired. All you should do is whats right, make sure it's HER deciding. Alot of people who keep life support on or push hard for severe elderly to hang on, why? is it in there best interest or yours? is your inability to part with them keeping them suffering?. I do Not know wether this helped. if it did not I apologize , but if it did in someway help her to have a choice still then it helped.
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Chimonger, That was a wonderful post. Thank you
Iwentanon You will know when the time comes. Your 86 year old will accept less and less. If she can't refuse will clamp her lips shut. As she slips she will simply let food sit in the mouth, let it fall out or actively spit it out. Continue to offer tiny amounts of easily swallowed food but do not force give small amounts of liquid with a straw, or sippy cup if she is able. Water is no always palatable but some other drink you know she likes. Ginger Ale is good. If it soothes your conscience try a little Boost. Personally I hate Ensure but the chocolate Boost is just like chocolate milk but contains no dairy and is very easy to digest. If she is unable to swallow you can use a 1 ml syringe without a needle or kids medicine dropper to drip liquids into her mouth to keep it moist. Never squirt it into the back of the throat as she is likely to choke and get aspiration pneumonia.
Medication are also of little use and can often be stopped with the exception of those for pain or anxiety.
Your job as a caregiver is to take care of the whole person. Eating is only a small part unless your job is simply to go in and feed her
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These are very difficult decisions, I know my turn with this will come soon enough
these sites are very informative and people do tell their stories,
so we are not alone.

Our 86 year old has dementia and yes, I do worry about keeping her alive,
against her will, but in her case, like some forget the days of the week, she does that too, but her issue and has always been forgetting to eat.

My job as her caregiver is to make sure she eats.

When would I know that it is different and this time has come?
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Deardau: As waddie said, she made her choice when she was of sound mind in her Trust and DNR orders. You are her caretaker to make sure her wishes are carried out.

God Bless You!
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We went through this w/ 2 Gma's; have I've cared for patients who went thru similar.
It's heart-wrenching; we've been taught our whole lives, to do everything to get them well again.
One Gma had Alzheimer's, & died of the almost inevitable pneumonia.
One Gma, slowly more demented, worse by her shrinking scope of contact with the world-- fell, broke her back again, in terrible pain, felt afraid to die [she never had been afraid before]--but, also, she said, was afraid of missing anything [it was her great grandchild's 8th grade graduation that very evening]. It took heavy pain meds to relieve her stress enough so she could think a bit better, & all of us giving her permission to let go & let God.

Yes, I DO believe, based on studies & observation, that even in a demented &/or damaged mind, incapacitated to some extreme levels due to illness, injury, etc., that
a person has some capability, at some level, to decide some things for themselves--including when it's time to let go & meet Death.
Even tho unable to verbally communicate, people do things that show a congruent idea IS intact in their mind---they just can't discuss it---may lack words or, can't can't process complex thought, or, can't talk back-&-forth too much about anything, etc., but still are able to think a bit of a thought, & try to act on it….They have a right to.

Love is the continuum everything & everyone, exists in.
Even knowing this, STILL doesn't make it easier to say goodbye.
Death is a natural part of life. Hard to go through. We HAVE to let them go sometime.
Even though we can't see, touch or hug them anymore, Love, I believe, goes on forever, across all time & space;
...like air we breath but can't see, those who've died, go on:
Caregiving is some of the most rewarding, most frustrating, most painful work anyone can do.
We do it because we love & care.
It's never enough, yet it's too much; it's so much more than we expect; it's overwhelming; sometimes we don't know how we will survive it.

An elderly person with dementia or chronic ills, leads a compromised life--what -quality- can that be?
Some linger long; some happily existing sitting by a window; others disturbed, roaming, seek something never found, or battle internal arguments.
ALL those I've cared for, were able to communicate some way, maybe bits & pieces--but they had ways to communicate what idea they were stuck on.
Who really listens?
Who pays attention to subtle or non-verbal clues, in so-busy lives & schedules?
If it's a form of subtle communication we are incapable of understanding, only someone familiar with the person can pick up on--most folks are gonna miss those clues.

A very sick person who recognizes they no longer can deal with being repeatedly sick---pneumonia is that, & it generally means the death of Alzheimer's patients--
---the person may internally understand "this has to stop", or "it's not stopping fast enough", or "they keep giving me meds to keep me alive", or "I want this to stop".
They may only have some control over whether they allow a spoon to enter their mouths---but if they have that, they can act on it.
With some levels of illnesses, too, there is an internal feeling that -feels- like on-coming death…I don't know how else to describe it--some may act on that feeling, take to their beds & wait for it.
Refusing to eat, is one of the clues.
"Rallying" some days or hours before dying, is also an indicator, particularly if the person then again starts failing after the rally--that death is closer.

Be comforted in your Love, your caring--the person going through this DOES understand Love to--no matter how scrambled their mental processes.
Even the most mentally ill or brain-damaged person, understands--even if it's only a tiny bit, when someone does caring things for them--even if they can't express themselves to say that--they do understand when someone cares.
It matters.
YOU matter.
You matter to your loved ones, even if they can't say so, even if some of them can't control their behaviors or words, even if they act-out badly at their caregivers
--that's not the real "them"; the real person inside is masked by those imbalances--they are still in there, appreciating what you do for them.
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Your mother may or may not have made an active decision to die. What you are observing is the natural process of a body slowly decreasing function as it prepares to leave this world. As others have described their experiences and the way they handled this are good ways to proceed and will bring comfort to your Mother and ultimately peace for you. medications don't matter at this point unless for pain or agitation. offer her a drink or a little ice cream or jelly but do not force it. If she doesn't want or need it, it will just run out of her mouth. Hospice is definitely the way to go, but don't move her to another location if the hospice nurses think she is actively dying. Blessings for you and your Mom. Remember that hearing is the last thing to go so keep talking to her even if she seems unconscious
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I truly know that death is a process just like birth is a process. At some time, the body begins shutting down. This may not be an kind of obstinacy, but her time. When its mine, I hope that there is love and peace around me. By your actions, she will know that she is loved, honored and remembered. And that is the greatest fear of death -- not pain, but that we will not be carried after our death by our families and culture. There is SUCH a fine line between helping someone to get well if they are sick, and letting go with grace. Trust her body. Trust her heart. And know YOU are loved. I am sending as much peace as I can with this note.
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Absolutely call hospice. They will de-mystify this whole process and will be a big help to you and other family members as well as to your mother. You have help available through them and yes, it's covered by Medicare.
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"I just wondered if an Alzheimer's patient has the capacity to willfully choose to die."---deardau

Deardau continues to ask very pointed/focused questions about what can be a very confusing, and heart wrenching time in a loved one's life, and especially for those who love them. If I'm understanding Deardau correctly...she isn't asking for people's opinions on general end-of-life issues. She's asking if people who have been determined to have declining mental ability, due to dementia/alzheimer's, have the mental capability of making clear, logical, without doubt, decisions concerning their medical care. I think it depends on when they make decisions...how deep into dementia/alzheimers are they? If early after their diagnosis and/or they are determined to have mild or early dementia, I think they may have the capacity to make decisions about their future..."on a good day".

But, when they are at a weakened, declining state..for instance when some might say "they're wanting to go"...the answer is NO. This is part of the reason why the medical community has created and encourages people to have advance directives and living wills created, while healthy and mental capacity is good. Because when we age or due to an accident or disease, we may lose capacity to make clear, absolute decisions. Especially with dementia/alzheimer's patients (meaning dead & dying brain cells) they were diagnosed with the illness due to reports of ongoing lack of memory, poor logic, foggy thinking etc. If they have not expressed their wishes pre-diagnosis or while their mental capacity was good, then I could not be assured that what they say they want now, at this weakened state and further mental decline, is absolutely what they are wanting.

It doesn't make sense to me...that with dementia/alzheimer patients we question their mental capacity and decisions they made in the past (which led to diagnosis & knowledge)...but suddenly we trust everything coming from their brain? We don't question or doubt their decisions at a weakened, further-declined state...like if and what treatment they want, or let them go? I think it's very easy to let our personal opinions, religious views and other factors get in the way of logical, common sense thinking. Who is really being served here by what we may hastily, for whatever reasons, decide for another?
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Everyone has given such great answers for you to go by. My father passed away in 2006 and he had developed pneumonia, he was ready to go and really just wanted a "shot" to end his life. The doctors put him on morphine to keep him comfortable and he passed several days later. The doctors tried to get us to put a tube in his throat and told us he would die a horrible painful death if we didn't. It was a lie! They pushed for a feeding tube as well, all of this was covered under his DNR as something he did not want done. They tried to lay a horrible guilt trip on us, even though my father told us he no longer wanted to fight it, he was ready to go. DO NOT LET ANYONE GUILT YOU INTO DOING THINGS LIKE THIS!!!

My mother has dementia and I am her 24/7 caregiver and have been for about 8 years. If it was my mother in the hospital, I would keep her comfortable, but let her go. If she has a trust and DNR, read it several times and rest assured you are making sure HER WISHES are being carried out.

God Bless You!
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I firmly believe they have the capacity to choose, they see the light of eternal rest, but they linger, they wait for a loved one to visit and then pass. They hang on until you tell them it's OK to go. Talk to her about the past and the future and who might be waiting on the other side. Sometimes you see them reaching for someone, and you tell them through your tears that it's OK to move on.
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As I have stated, she has an advanced directive and I fully support her right to choose to die if that's the choice she's making. I don't feel guilty about it. I just wondered if an Alzheimer's patient has the capacity to willfully choose to die. Ferris1- she will not be rallying for an anniversary or a birthday. With her Alz, she doesn't know one day from another.
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It could be that she has no so much "decided" to die, as that she recognizes what is happening in her body and is accepting it. The recognition wouldn't have to be at a conscious level that she could articulate.

I strongly urge you to have hospice care for her at this time. They can provide service right where she is.
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Oh my gosh--my heart is breaking for you and your mom. Yes, I think this is the beginning of the end. This is what happened w/my mom (who was 90) just a few months ago. 8 days before she passd away we rushed her to the hospital because she was all of a sudden unresponsive. she had started with the not wanting to eat--and she had been eating like a truck driver! I had just been talking to her and that fast it was like she fell asleep but wouldn't wake up. I thought she would die that day. Later in the hospital she said--and these words haunt my every minute--"I've got to go. I'm sorry. Don't forget me. I will always be with you." This was a Sat. By Mon she had rallied and went shoppiong w/her aide! By the afternoon, though, the same thing happened, and by the following Sun she was gone. PLEASE DO GET HOSPICE INVOLVED. It will make things easier for her and you. I am so grateful for the help we got. I miss her every day. You are in my thoughts.
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Yes Deardau this happened to me also with my mom. She was in a nursing home too and in some pain. She refused food and water also. Stayed in her room/bed during her final week. When I went to visit she did let me spoon feed her some pudding and sipped water. She told me they were getting her room ready for her(in heaven). She had pneumonia but refused meds. Before reading all of the above responses I wasn't really sure if she was controlling the end of her life. I couldn't believe a person could do this. But now I am sure that is what happened. It is sad but they are at peace now. Now I keep waiting for my peace to begin and after reading these other people here with similar experiences I think I have started to feel some peace. Take care.
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I went through this with my husband of 46 years. He developed vascular dementia after a massive stroke. The last couple of days he would still take his medication, which took about 1 hour, with lots of patiently waiting for him to open his mouth. He was a diabetic and a heart patient (heart attack, 2 bypass surgeries and he had an cardiac defibrillator implant) he seemed to know he needed them. But food, drink became another matter, and I could see in his eyes he was ready to let go. So I did, as smg2013 did - I massaged him, talked to him, reminiscing about our life, the wonderful times we had (the stroke took away his personal memories), how much I loved him. He would sometimes squeeze my hand, or just smile. It is so very painful to do and to let go, but it made him relax, peaceful until the end. And that was for me the only solace I had - he was finally at peace. I wish the same to you and your mother.
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My mother exhibited the same symptoms, I let her be and tried to make her as comfortable as possible, she passed about 5 days later. I stayed with her the whole time, through her dying process. I think it was a comfort to her. It is not an easy task for anyone, I pray things go well for you both during this difficult time.
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"I was just wondering if she has the capacity to understand a choice to die considering her dementia."---Deardau

You are absolutely correct Deardau in realizing that is indeed the question and issue here. My father, siblings and I faced this two years ago when my late mother with dementia began showing similar characteristics as your mother. There was no advance directive or living will. So, the family was in the position to make decisions. We didn't agree. My father and brother took the neutral position. My sister and I had opposite opinions on whether we should let mom go or intervene.
To this day, and I would suspect for the rest of my life, I do/will harbor animosity towards my sister (and a little towards for my father) for how this was handled. IMO, she let her personal beliefs, misguided opinion, and unsupported theories lead her/them to make some poor decisions. They misfocused. My sister "took charge" and made sure her opinion was carried out. For a variety of reasons, she seemed to take a "one-size-fits-all approach" (which she thought was right and the only way), rather than evaluate the situation and based on specific circumstances with my mother, discuss and make decisions. Over the years, I have read numerous comments on this site, which sound similar.

Since your mom has an advance directive in place, my suggestion would be to let that be your guide. I would assume she completed it when she was lucid and aware? However, in general, if there are questions about someone's intent or wishes and there is no living will/advance directive or it is not clear what they want, I would suggest looking at these two things. 1) Have they ever expressed in the past their opinion about such matters? Perhaps how a family member or friend was or was not treated? 2) What is their general health? If you got them past this "episode" could they live a happy, normal and pretty healthy life?

For what it's worth. I wish you the best Deardau...and peace.
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I hope you are able to find comfort while performing your difficult duties. You are doing a very good thing for your mom. Let me add insight as a lawyer (licensed in Pennsylvania only). You state that your mother is refusing food. As ilshuyster821 mentioned above, that is common for someone who is terminally ill, no matter what state they live in. The United States Supreme Court has recognized a individual's right to decline medical treatment, grounded in the Fourteenth Amendment's guarantee of personal liberty.(The Cruzan case in 1990).

I would like to mention two additional things. You state that you are the agent under a medical advance directive, and you might be reluctant to act because you do not know if your mom has the capacity to understand the choice due to her dementia. That is your job as the agent, to make the choices, when she cannot. Do not feel bad about it, she asked you to do that. Your standard is to do what your mom would do if she were able to make the choice herself. If your mom was okay, would she want to continue to live, or would she want to die? None of us readers know that choice better than you do. Please to not feel guilty about your choice, your mom is blessed to have someone available to make that choice for her.

Please also look into hospice and palliative care, both of which are covered under Medicare. You can receive hospice care and recover and that is okay. Recovery does not frequently, but it does happen now and then, and that is not a problem. But hospice will also provide some benefits for you, too.
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I just experienced this at the end of September. The nursing home had my mom so messed up and they put her in the psych ward of a crappy hospital and tried all different drugs to try to help with her anxiety levels. Nothing worked and they had her strapped in a wheelchair all day. It was horrible to see but I know that she was so unsteady on her feet that she would fall if she would get up and she did fall numerous times during the night getting out of bed. That being said, mom would pretend also that she was sleeping when we would visit. I had not been there for a little over a week and my daughter had asked to visit her grandma. When we got there to our surprise, mom had declined so much that it took our breath away and I actually cried when I saw what had happened within a weeks time. She still knew us which made my happy that she saw my child. However they told me mom had not been eating for about 5 days. I came back two days later and she was still not eating. I knew in my heart she had given up and was dying. I told the social worker and the doctor she was dying and needed to be in hospice that day and they agreed and did the paper work. Mom was moved the next moring to hospice. Thank God for them. They helped mom relax and we were all there for the next 4 days saying our goodbyes and spending those finals moments on earth with our mom. Even though mom was sleeping most of the time when her brother and sister came into the room after not having seen her for months she started to cry even though she could not speak. She also cried to me when I held her head and prayed with her. It was one of the most difficult things I have ever had to endure in my life as I was her caregiver for 9 years in my home. It was also the most rewarding experience because I was able to help mom through this horrid disease even though at times it was so difficult. I was able to be with her when she left this world and my heart is happy because she left the way she lived her life. With dignity and respect. If you loved one is not eating or drinking, please let them go the way my mom went. It is the greatest gift you can give anyone you love. Let them leave this world knowing they are so loved but yet they are leaving on their terms. God Bless everyone who has to make this decision going foward. I'm proud of my decison and did what my mom wanted.
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Yes, her body is starting to shut down, and it will only get worse. Remember, Alzheimer's disease is a terminal condition. When your brain doesn't want to work anymore, then your body will follow. Does she have an Advance Directive in place? If she has a DNR (Do not resuscitate) order with the nursing home, then they will follow her instructions and not give her any life-saving methods. Probably the awake person you saw with the visitors, was a rally, but the next day she didn't have anything happening, so she slept. People will last for an anniversary, or birthday, or some big event, followed by death. Pray she is making her wishes known by her actions. God bless you all.
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My dear husband of 63 years had Parkinson's and chose to not eat or drink fluids. Many years ago we had our wishes known and written out - DNR and no heroic measures so I made him comfortable and went along with his wishes. I am blessed that I had the health and strength to take care of him and was able to keep him at home and for that I am forever thankful for prayers answered. It was a peaceful passing and hope your Mother will have such an experience.
Joy
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Mom has an advanced directive in place and I fully support her right to choose to die if that is what she's doing. I was just wondering if she has the capacity to understand a choice to die considering her dementia. Thank you smg2013 for your supportive comment. On a side note, my brother visited her yesterday- he hadn't seen her since July (lives far away) and he felt that Mom didn't know him or his wife. So sad for him. I just feel so bad for Mom that she's so unhappy. I hope for all our sakes that the end comes quickly and peacefully. She wouldn't want this life. No one would.
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We are fighting these exact choices, in a different situations and setting with my mom now. She's had TIA's and dementia following a TBI from acute increased carbon dioxide after a surgery 5 years ago. over the last five years she has really struggled with everything she loses and can't do anymore. Two weeks ago she decided she was done, since then it's went down hill quickly. Yes my mom probably has an infection, though they can't figure out where, but she has decided it is time to go. This is the hardest thing I have ever faced and I wake up everyday waiting. My prayers and thoughts are with you. My only sanity now is this is mom's choices and she will not be sad about all she has loss soon.
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