Of all stages of Alzheimer’s disease, late-stage progression into end-stage Alzheimer’s and death may be the hardest to understand. There is no other outcome for this type of dementia. Every person’s journey is different and unique, but the destination is the same, death. Why do I find so many other descriptions of late-stage Alzheimer’s Disease and death?
Most doctors or Alzheimer’s organizations will tell you the official, accepted versions. These are often generalizations and words to ease the reality of what will happen. This type of information is a good introduction, but I’d rather hear the cold hard facts.
The official descriptions of late-stage Alzheimer’s disease that the end is near and finally death is based on a collection of averages. A generalization of how the average person with Alzheimer’s will decline and die. The truth is we are still in the stone age when understanding Alzheimer’s disease.
You can find more realistic descriptions here (I will add more about this) and other blogs and forums. Often discussed are what the person with Alzheimer’s will go through as they approach death and finally die. You will see that each person with Alzheimer’s has a unique experience. We only know what the caregivers and family members describe. Not what the person with Alzheimer’s experiences.
There are so many factors that contribute to the progression of Alzheimer’s and death. It may depend on what type of care the person is getting. It depends on what areas of the brain are affected and what degree. Any additional health issues the person with Alzheimer’s has.
People with Alzheimer’s pretty much die from the same things everyone else does. Things to expect are pneumonia, low sodium, low potassium, congestive heart failure, kidney failure, systemic organ failure. Any preexisting conditions like diabetes will be harder to manage.
The immune system declines, so people with Alzheimer’s disease become susceptible to other infections. I wish there were a more favorable outlook I could give you. Some people have what looks like an easy death and drift away.
As Alzheimer’s disease progresses, most or all memory-related abilities degrade. Normal bodily functions are the exception, not the rule. The person with Alzheimer’s dementia relies on someone to do everything for them. They need to be monitored and cared for every second of the day.
Late-stage Alzheimer’s patients may constantly stare or seem as if in a trance. This may not indicate anything. They sort of trance out, like a daydream state but more profound.
They may not respond to talking or normal noises. You can look right in their eyes and be a foot or two in front of their face. You can talk to them, and they seem not to respond. They often drift in and out of this trance-like state.
They may also come out of it if there is an unusual sound, movement, a flash of light, or the light turned off. Sometimes, my mother would not respond if I talked to her. But if I snapped my fingers, she would come out of it. As if she was somewhere else or was sleeping with her eyes open. At times it seemed like a young child when they sit in front of a television and get so involved with what they are watching they enter a trance-like state.
My friend’s father had Alzheimer’s and didn’t respond to sounds like finger-snapping. Wave your hand quickly, about a foot in front of his face, and he would snap out of it. I would often wonder if people with Alzheimer’s have out-of-body experiences.
Eating and drinking will most likely become a problem. Being able to take any pill may be impossible. Most medications have a liquid form you can use.
My mother could usually eat, but she had false teeth, and it was a daily game to get her to let me take them out to clean them. It sometimes took several attempts to replace the false teeth. She didn’t understand. So I would try for a few seconds, and if I didn’t get them in, I would try again 10 or 15 minutes later.
No arguing or fussing. Just accept the fact and try later. Act happy that they let you try. Even if they bite, you laugh it off, no big deal. If you try too long or make it unpleasant, it will only make it harder on both the patient and the caregiver.
Occasionally she would forget how or not want to chew. I could not get her false teeth in a few times, and she needed to eat. That’s when I would use a juicer and organic fruits and vegetables. She really liked it when I juiced. We juiced every day. Once in a while, she wanted it, but she couldn’t remember how to drink from a glass. Even if I held it for her.
You might want to get a couple of what I call sippy cups, often used for young children. They have a screw-on lid with a spout to sip from, and if they get knocked over or dropped, don’t spill and make a mess.
Sometimes she even had problems using a sippy cup. So I got some of those large plastic eyedroppers they use to give kids a dose of medicine. I would sit down with her and give her fresh juice using the droppers. Then all of a sudden, she would start eating again.
As long as the person is getting sufficient liquids and nutrition, the need for feeding tubes and IVs can be put off. They may sound like a good solution but, they come with its own set of problems, like trading one evil for another. Often, a feeding or drinking problem, like the disease itself, occurs in cycles.
It is easy to say, put the tubes in, but there is a much greater chance that regular drinking or eating will not resume. There is no substitute for real food. Even if it isn’t solid food and you use fresh homemade juices.
Using fresh organic juice made from fruits and vegetables is best. It gets high nutrition into the bloodstream almost instantly. It takes very little energy to digest it. I feel this should be mandatory because it makes such a big difference.
Eating and drinking problems happen in cycles too. I doubt a care facility will tell you that. They likely don’t have adequate staff or time to dedicate to one person to get the Alzheimer patient through the cycle. It may only last from a few hours to a few days.
A care facility will probably tell you of the problem and suggest placing the tubes. That’s why I took care of Edith at home. I took the time, made it fun for her, and got through it. Once the cycle has passed, it may be weeks or months before it happens again.
If the person is still mobile, imagine how easier it is to take care of them without the tubes. Even if they can’t get out of bed, it’s easier. Not to mention the kind of nourishment they get can’t compare to real food in a nursing facility. Don’t believe anyone that says different. Plus, this is another pathway for infection.
Something else to think about: they have so few pleasures left in their life. Putting in tubes is going to take away the pleasure of taste. This will be one less way to connect with them and get their attention. One less surprised look on their face when they taste something they really like. One less smile. One less tool in your toolbox to change their mood.
As time goes by and the person gets closer to late-stage Alzheimer’s Disease and death, it may affect more areas of the brain. There is no set progression, no map, ordered list, or countdown to departure. The pattern of destruction is different in every person, even in twins. In some people, Alzheimer’s seems to focus its main attack on memory, emotions, reason, and other things within the head.
Other people might also have different brain areas affected where the rest of the body has problems. Like organ function, muscle control, bowel control, etc. The brain can tell a specific organ or a complete system to work at reduced efficiency or completely shut down.
If, or I should say, as the parts of the brain that control proper body function are affected, things can start to decline. It may affect sight to the degree of blindness. Any or all of the bodily functions or organs may not work well. Urine may concentrate and become intensely colored, and have a strong smell. Even with what seems to be adequate liquid intake.
As these things stop working as well as they should, energy levels usually decline. The person may hallucinate and see things you can not see. They may become unconscious intermittently or stay that way. Just when you think it’s permanent, they wake up again.
Breathing may be shallow or a struggle. The lungs may start to sound like fluid is beginning to collect in them. Blood pressure often starts to lower, and as it does, the heart may try to pump harder, or heart rate may decline too. Even if put on a ventilator, they may be gasping for air. Some people are lucky and just drift away, while others seem to struggle to hang on.
If a natural death starts, the brain sends chemical messengers that tell the organs to shut down. If the heart stops and electric shock is used to try to restart the heart, it is thought these chemicals are neutralized. If this occurs, the body can often be kept alive. The automatic functions like the heart beating and breathing may resume. They hook a ventilator to the patient to breathe for them. People often breathe above the rate of the ventilator.
That does not indicate life. It is most likely the person is not there. Families often keep the body alive for days or even weeks, refusing to accept the person has died. They return to the hospital every day and stretch out the ordeal. But the person is dead with the machines giving the appearance of life.
Even when you are prepared for a death of a loved one, it can be hard to accept. Turning the machines off isn’t easy. Everyone needs to deal with it in their way and do what they feel is right. The person deciding to remove life support equipment for the Alzheimer’s patient or any loved one will remember it for life. I know I’ve had to do it for family members. Each time was different and difficult. There is peace in knowing their suffering is over.
If you are the one that must make the decision, my heart goes out to you. Do the best you can and come to peace with it in your heart before you have life support removed. Be at peace with it, and don’t be hard on yourself. It is probably the hardest thing you will ever have to do. It is a great honor and a blessing. It might not feel like it a first, but I hope you come to see it as a blessing, as I have.
Thank you for this blog. I’m so sorry for the loss of your mother, but I celebrate your love and care for her.
I’m completing a novel about a woman with Alzheimer’s, written from her perspective. I’m often told that people have no thoughts during the later stages of Alzheimer’s. In my observation of many Alzheimer’s patients, I maintain that there is still thought and imagination, but not the words to convey.
My question is if you observed your mother experiencing thought during her later stage. Please feel free to email me personally. Thank you for your help.
Auburn McCanta
My Nan is dying from excelled late stage alzehmiers after she fell and broke her hip in the nursing home. Within a week of returning from the hospital and being put in a large recliner chair she developed Aspiration Pneumonia. She is now 24/7 in bed, unable to move, speak, eat, drink. Everynow and then she wakes up with a look of horror on her face and starts shaking and moaning, always staring at the one spot in corner of room, she never looks at u only through you, nothing u do can calm her down. The Drs think it’s her brain tryig to shut down that this is happening but I’m not quite sure she looks absolutely terrified and it is horrible watching. What do you think this could be? She’s on 10mg of Morphine every 3 hrs and has the constant facial and body twitching but what she is experiencing is making me worryshe isn’t havin a peaceful death… I’m very helpless in this situation…
Dayna, First let me say I am so sorry to hear about you Nan. I understand how horrible it is to watch a loved one go through this. The range of emotions you go through and mental anguish can be excruciating. You can read about Alzheimer’s and try to understand it but nothing prepares you for the reality of it until you live through it. It was extremely hard for me as it would be for anyone that loves the person with Alzheimer’s..
Aspiration Pneumonia can be serious. With the timing you describe it may have started at the hospital or the nursing home. If it happened at the nursing home they hopefully took the proper precautions when it happened. Many nursing homes don’t have the knowledge or medical equipment to properly treat aspiration immediately after it happens to prevent Aspiration Pneumonia. Ideally the patient should be transported from the nursing home to the hospital for treatment. This is just my opinion.
To me it sounds like your Nan is reaching the end of her journey. I don’t know all the medications they have her on but I feel the Morphine is probably a good call. In this instance I think it is appropriate and is helpful. I feel when pain exists the body is usually slower to heal. It is often part of palliatory care. Whether it’s the right dose, only making adjustments to the dose and seeing if there is a notable difference might tell.
With Alzheimer’s you may not be able to tell, hopefully it is enough to make your Nan comfortable. Dosing is usually determined by patient input. In my opinion the first concern would be organ function and pain management.
Palliative care (from Latin palliare, to cloak) is an area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life.
The look of horror, shaking, moans and staring may be a reaction to drugs but they are also common in people with Alzheimer’s. It may be because of something real and maybe a true expression of what she is experiencing. She may be reacting to something imagined. However from what I’ve seen it may not be what’s going on inside the persons mind.
Often when a person with Alzheimer’s tries to express themselves, it starts out in their brain just like us but the way it manifests in facial expression, verbally etc is completely bizarre and ofttimes upsetting to us. It’s hard to decipher which it is without observing the person. It may involve long term observation by someone that is extremely perceptive.
Dayna I wish I could tell you honestly, something that would bring you peace of mind. One thing I know is your Nan is lucky to have such a caring and loving grand daughter. I’m sure she, at some level, still understands and loves you very much. I’m sure she wouldn’t want you to worry or feel guilty for not being able to understand more or do more to help her or more to comfort her.
Understand she is not the disease but a loving spirit in a diseased body. She would shield you from this experience if she had the ability to do so. Be easy on yourself and give your spirit the time and permission to heal from this ordeal. Peace and blessings to your Nan, you and your family.
So ur take on the end of the journey is they still have enough brain brain function to possibly hold on if a loved one hasnt come to see them. Or is able to still have the occasional thought even with the symptoms that are shutting down the brain. My mom passed and excuses aside i didnt want to see the end so im trying to resolve the thoughts i cant seem to rid myself of. The truth i can handle but the not knowing is bothersome. would very much appreciate a reply regardless of the info
Hi Cory, It’s only natural to feel like you do regardless of what we choose to do or not do. There is no right or wrong answer. We all have our own strengths and weaknesses we have accumulated over our lifetime. Without even realizing it, we all become programmed from our own experiences and what other people around us say and do.
When we go through something like this, it is extremely emotional. We deal with the things we can and try to avoid those that overwhelm us. These situations can become a struggle of feelings and thoughts. Should you do something, wanting to do something, not wanting or not being able to do it. Worrying about what we think and feel and what others think. It can be a daunting and torturous emotional journey laden with, self-imposed, what-ifs and guilt. No matter what happens in the end, we all experience this.
Even if someone that loved you could wait, and you didn’t make it, or you couldn’t find the strength to come, they would forgive you. We come into this world alone and leave alone. Even if we are surrounded by people, the journey we embark on is a solo journey. Waiting for loved ones to come before we die is probably no more than a myth fueled by coincidence.
So my advice to you is don’t worry about or listen to anyone that has anything negative to say. The most important thing is to realize you can’t change the past, stop judging yourself, and forgive yourself for anything you feel guilty about. It’s time to move in the direction of letting yourself heal emotionally. So please take a moment for yourself, forgive yourself, release all the things that have been revisiting you in your dark place, breathe, let it go. You have suffered too much already.
Hi Auburn, thank you for your kind words. Sorry I took so long to respond. I’m still dealing with the aftermath and sometimes don’t visit this blog as often as I should because of it.
I know there was still thought, imagination and an awareness of being until the end with mom. I was with her 24 hours a day and watched her closely to look for anything unusual.
This 24/7 watching also made me aware that at least once a day, sometimes for minutes, occasionally over an hour, mom was able to communicate and knew who I was. I constantly watched for those moments. I didn’t want to let one coherent second slip by. This was even in advanced stage Alzheimer’s. You need to watch for it. They might have nothing to say. They may feel fine for the moment. They may not realize how valuable and fleeting their moment of awareness is so it’s up to you.
Sometimes I would help her connect when I felt she was close. Talking to her, asking her if she was there and if she understood me. With my face close so she wouldn’t see other distractions. Snapping my fingers in front of her face sometimes, while looking face to face. Other times, when I didn’t expect it, she would just ask me a question. One that was common was, where was her husband Gaylord (he died in 2005 and she in 2009). When I told her she wondered why she didn’t remember that and felt guilty for not remembering. I wouldn’t just come out and tell her on my own, but if she asked, I told her.
Seeing how bad she felt, thinking she didn’t remember, from then on, I let her immediately know that she had been aware of it before and she had grieved over his death. I told her she had a problem remembering sometimes and this was one of those times. I would keep it lighthearted and tell her I forget sometimes too. That we all forget around here. I would talk about dad and had pictures I enlarged and printed just for this purpose. This gave her comfort and a kind of closure for that question.
One of the first things I would ask her was do you feel good, does anything hurt, do you have any questions. It was an important question for me since I took responsibility for her well being. It was during one of these times of clarity, after she almost died from a medication prescribed by the doctor, I asked her, about dieing. I explained that she was getting older and as time went by, there would be times when a comfortable, peaceful death could happen if I did nothing. Like when she was in a coma and I could have just let her slip away. She clearly understood, looked at me and said, “No, I’m not ready to go yet.” So I honored that.
She was in the hospital for an operation. She was in there almost 2 weeks after the operation and died there. Everyday I was able to connect with her and let her know what was happening. The doctors didn’t believe me, it was my imagination, wishful thinking, this just does not happen. When doctors spend 10 or so minutes a day with a person they don’t see or know much. Finally the doctor got a glimpse of her in her conscious state and how I could communicate with her.
The doctor then admitted that there had been a moment when Edith knew what was going on. The sad part is I don’t think that experience will ever leave that room. The doctor will just continue on as before because it’s easier to believe the porch lights on but nobody’s home.
Doctors and associations tell people their loved one doesn’t know anything and isn’t aware. But they are. It’s just harder to recognize and takes more time and effort to see it. If I hadn’t been with her around the clock and constantly watching I would think the same thing.
Today most people with Alzheimer’s aren’t given the chance to stay connected. People are told it’s impossible. They are encouraged to put the person in a facility or at best have home care, with assistants and nurses that have been told the same nonsense. I think this opens the door to not getting the best medical care and options (they’re old and going to die any way) and even makes it easy for abuse to happen. It’s easier to be less caring and get annoyed or even angry when you think it’s just a soon to die, animated body, with no one inside.
When someone they know is there during their moments of clarity it continues the connection. Their memories can be stimulated and helped to last. If kept in surroundings they know and if they have someone they know (a face they recognize of a person they loved or trusted) to connect with, they will remain in this world. If put in a care facility, at least the way they are now, and the trained personal following medical protocol, it’s a pretty miserable end of life experience. It shouldn’t even be viewed as humane.
I know it’s hard to deal with as a caregiver and family member. Perhaps it’s easier for the family, the doctors, the nurses and assistants to think the person with Alzheimer’s doesn’t know and isn’t aware. This is what the medical establishment wants us to believe. I think this leads people into thinking the Alzheimer’s patient is less than human. Add the fact that they can’t recall or often tell you how they are treated, opens the door for abuse, mistreatment and neglect. It’s time for the medical community to take the blinders off and stop dehumanizing people with Alzheimer’s disease.
In my opinion they are aware. When they talk gibberish or just make noises or repeat syllables or rhyme sounds, they are actually saying something. In their head it makes sense to them, but it comes out changed, distorted, unrecognizable to us. Because we don’t understand, it must mean nothing.
During times when she was making the transition between, out of it and clarity she would start talking and it wouldn’t make sense to me. I would still try to respond in a way that seemed like I did understand. Using her emotion and how she acted as a gauge and gave simple generic responses and acknowledgment.
It would get to a point where I could ask her if she knew or understood what she had just said because I wasn’t sure or could she repeat it. I might ask this several times and then sometimes, if my timing was right, she would say, yes, and then repeat it using actual words. Can I prove she said the same thing, no, but the rhythm of the nonsense sentence was the same as the second one that made sense.
Even the day she died, I felt that she knew I was there and who I was. Her blood pressure took a dive and she went into respiratory failure. They stabilized her and she had labored breathing and her face had an expression that I interpreted as dislike, discomfort, not knowing what was happening and perhaps some fear. I went over to her and started to talk to her and caress her cheek and forehead. At that moment her expression changed to one more peaceful as if she knew who I was. This happened in the morning and I continued to be with her, holding her hands, stroking the head and face, talking to her, spending all the time I could with her. Even though the doctors and nurses tried to comfort me I new what was happening, I had seen people die before, I knew what it looked like.
I went across the hall to the nursing station and took the resuscitate by any means off the care instructions. Why make her death experience worse by electric shock or cutting her open to massage her heart or some other torturous protocol. It was a long day. I didn’t leave to get something to eat or walk down the hall to the lounge. I called my older, only, brother to let him know. I wanted to be there and I promised that if it was possible I would be there and glad that I was. Finally a few minutes after 5 PM she stopped breathing as if she was holding her breath, about a half minute later she took 2 deep breaths and passed away.
Sorry, I got a bit wordy but the short version is I agree with your observation. I feel they are there and aware often from my experience.
I lost my mom to Alzheimers 2 weeks & 4 days ago. We kept her home with us, until she went to the hospital, where she died. Your descriptions were accurate. My heart is breaking. I will never be the same again.
Hi Helena, My deepest condolences to you and your family. You’re correct you will never be the same. You will experience many different emotions as you begin to heal. Everyday you will be remembering those last moments, but try not to focus on how difficult it was, or torture yourself with what if’s, or feel guilty for what you did or didn’t do.
You have a choice to replace those thoughts with a life time of accumulated happy memories. I know it will be a struggle but I’m sure your mother wouldn’t want you to be overwhelmed with thoughts of those last moments. We all grieve in our own way and how long is what ever it takes.
Make sure to share your happy memories with others and there is nothing wrong with letting other know how hard it is for you. Sharing, especially life changing events like this will not only help you but others that loved you mother too.
Every day you will think of your mother. One day you’ll realize a whole day passed and you forgot to think of her. Then, if you’re like me, you may feel guilty. How could I forget? It can trigger all kinds of thoughts and emotions. But it’s okay it’s all part of emotional healing and the grieving process. It’s normal, so don’t be hard on yourself.
It’s been a little over 3 years now since my mother died. Most of the time I feel pretty good but I must admit the are times when something out of the blue, causes a release of unexpected emotion. It can be a TV show we watched together, music, a random sound, a fragrance, finding a long forgotten picture or just about anything that slips from the past into the present.
There are times, for a moment, it can seem overwhelming, like it just happened yesterday. Just remember, you can choose to fill those times with happy memories and have another opportunity to relive one of your best shared times together.
I hope as time passes you come to see this time in your life as a blessing. We often don’t realize the gift we are given as we go through difficult times until long after. Blessings to you and your loved ones.
Hello Auburn, My mother passed away 6 months ago, at age 95, late stage Alzheimers, natural death, heart attack, all are listed on her death certificate. My mom was often in the zone, with no reactions to things around her BUT she did engage with card games, dot to dot books, Jig Saw puzzles (and this was not simple puzzles, very advanced puzzles) And 1 week before her death, I found her up and reading a memory journal in her bed. READING OUT LOUD, and smiling. She had not read a book in several years and she was an avid reader. She had barely spoken a word out loud in months.
I called it a Christmas Miracle as I sat with her and helped her with some words. It was quite an extraordinary moment.
Most sincerely, Carol McCormick
My great grandfather has last stages and he’s not in a nursing home because of the cost. He has had walking pneumonia also he’s very violent. Recently he had a seizure and broke his collarbone. Are seizure s an normal thing for last stage Alzheimer’s. Is there anyway to tell when the time will come.
Hi Alyssa
You say he’s not in a nursing home. Do you mind sharing where he is living. I am wondering if he is staying with your family. It is expensive for a person without Alzheimer’s to stay in a nursing home and even more if the person has Alzheimer’s Disease or any form of dementia.
He has had walking pneumonia which is just a weaker, less aggressive pneumonia usually easily treated. I hope no one else caught it because it is slightly contagious. Alzheimer’s patients are susceptible to all forms of pneumonia, some can be very serious even leading to death.
Aspiration pneumonia is something people that live with or take care of a person with Alzheimer’s should know about. It’s not caused by the regular pathogens that cause other types of pneumonia. It’s an inflammation of your lungs and bronchial tubes caused by inhaling foreign substances. Inhaling food, inhaling liquids when drinking, vomit or even saliva.
Aspiration pneumonia can happen to anyone but it’s more serious and more likely to happen to the elderly in general and the risk increases with Alzheimer’s. If this happens I advise contacting the doctor in charge to let them know about it to see if it should be checked out. Any time you can prevent additional health problems it makes it better for everyone. For the caregiver, just having one more health issue to deal with can exhausting.
I sorry to hear that your grandfather is violent. Was he a violent person before he had Alzheimer’s disease? A person with Alzheimer’s can become violent for a number of reasons. Medications can cause changes in a persons disposition, emotional state or temperament. If they are to a stage where they don’t know what’s going on and don’t recognize the people around them they may be afraid, even experiencing extreme fear.
They may feel that their well being is threatened and they respond with violence. The primitive part of the brain is usually functioning longer and it’s responsible for basic survival among other things. You’ve probably heard of the flight or fight response when people feel they are in a dangerous situation. Your grandfather can’t flee so he may feel his only option is fight.
How people are around him can influence his sense of well being. People with Alzheimer’s don’t have the memories they have gained that help them know they are safe. They may not realize the people around them are keeping them safe and protecting them. So they use other things to evaluate their surroundings and the people around them from moment to moment.
They look at the expressions on the faces of people around them. They watch body language. They may not understand what you are saying but they hear the tone of your voice. They respond to how people touch them. Babies and animals use these same type of signals to know if there is a threat. By the people around them having a happy face, even if it’s a fake smile, having a pleasant manner of speaking like your happy, even if your not, using relaxed and nonthreatening body language and touching the person in a loving, caring gentle way even when you feel otherwise makes a big difference.
The seizure thing. If a person had seizures earlier in life, meaning earlier than 4 or 5 years before anyone saw memory problems i would suspect the possibility of having additional seizures later in life. Seizure are more common with early onset Alzheimer’s disease and rare in Alzheimer’s that happen late in life. Medications doctors prescribe for the treatment of Alzheimer’s may cause seizures. I think you will find most doctors will deny that a medication they prescribe is causing a problem. They will blame it on Alzheimer’s. But if you look up the drugs you will find seizures are listed as severe side effects for Alzheimer’s medications.
Example: Aricept side effects at WebMD
One of the best health related investments you can make if you are responsible for someones health (that includes you) is get a PDR – Physicians Desk Reference. Look up every prescription medication you take or administer as a caregiver. Make sure to read the Side Effect, Cautions and Adverse Reactions sections. If there is a black bordered Warning Box pay extra attention to what’s inside. There must be something very dangerous about the drug to warrant a Warning Box.
Anyone can get a copy of the PDR – Physicians Desk Reference on Amazon.com
Tip: If you can’t afford to buy a PDR you may be able to do what I did in the beginning. I found the B & N Bookstore near me sold them. They also have places to sit down and read. So I took advantage of that. I’m not sure if a local library would have a copy but it might be worth checking it out. For me it got to the point when I couldn’t run out every time I needed to look up a drug. That’s when I decided to buy one. You just do the best you can with what you can afford.
Also, drugs that are prescribed to treat Alzheimer’s can effect a persons emotional state. My mother was always an upbeat type of person. While she was still able to understand and communicate rather well my father and I decided with her input, to start her on the herb Ginkgo biloba. Ginkgo biloba is generally recognize to help memory even though modern science doesn’t know how it works. As soon as the doctor heard this she said it wouldn’t help and wanted to put her on Aricept. We, as a family, weren’t real happy about the idea.
The doctor said if we don’t see improvement using Ginkgo biloba in 2 weeks (Note: it takes 2 to 6 months to achieve the full benefits of Ginkgo biloba she had been taking it a month.) she should be put on the drug. One thing I did notice was an even more pleasant disposition. Even though she was mostly happy and a joy to be around it seemed to elevate her mood a little more and keep it there. The 2 weeks passed and my Father thought it might be best to try the Aricept.
The day after she started the drug began hell week. Mom became nasty, she argued about everything, she would no longer cooperate, she would try to kick us, pinch us, block us from touching her and even bit us a few times. After a week of this behavior we stopped giving it to her and continued with the Ginkgo biloba.
It took until the end of the month for her to return to normal. We visited the doctor again and she was not happy. She wanted to continue using Aricept and increase the dose. The doctor said it wasn’t the drug it was the disease. We never put Mom back on Aricept and she never was nasty after that.
It’s hard to decide, for the family or the caregiver, when a prescription drug is a good thing or should be avoided. You are responsible for that person and they, most often, can’t tell you if they are having an adverse reaction to a drug. You have to watch them very closely for even the most subtle changes in behaviors, mannerisms, facial expressions, where they put their hands etc. Like has their mood changed. Are their hands where they normally have them or has it changed and they’re holding their head, stomach or side or groin etc. Does it seem their ability to see, to hear or their ability to move around has changed.
If the person with Alzheimer’s gets sick with something everyone else does like a bacterial or fungal infection a prescription medication is usually appropriate. If they have Diabetes then pills or injections may be appropriate. But I’m not a big fan of the drugs currently available for Alzheimer’s disease. Just my opinion. There is no proof, to my satisfaction that they work even a little. Alzheimer’s progresses at a different rate and the areas of the brain effected are different in everyone, even in twins.
It makes it impossible to prove these drugs slow down the progression when everyone is different. The hope and desperation of the Alzheimer’s patient and their family make it easy to sell them false hope, drugs and expensive tests that aren’t needed and don’t help. The only thing a person can do now is hear what the doctors have to say and then do your own research before listening to the doctor.
If an emergency situation comes up you just have to go with what the doctors recommend. Just make sure it is an emergency because doctors are real good at creating a sense of urgency when they know you’re going to look it up.
When will the time come? It comes when it comes. A person can appear to be close to death and survive quite a long time. Doctors can give you an educated guess but sometimes hours turn into days, weeks or longer. The actual time is hard to pinpoint but one thing is sure. The time will come.
You are still young and this must be hard for you as it must be on everyone concerned. It’s always better to be around someone with Alzheimer’s than to be the one with Alzheimer’s. If you have fond memories of your grandfather before he got Alzheimer’s try to see him the way his was and know the way his is, is not his choice. This episode of your life will pass and it will get better for you. Blessings to you and your family.
My Mother is in her late stages of Alzeheimer. Recently, she was in ICU for 5 days for high sodium levels. The doctors got her sodium levels down. She was sent back to the nursing home under the care of Hospice in the morning only. The doctors say she has trouble swallowing. She is on liquids and puree foods only. Some days she sleeps many hours, no intake of food or puree foods. Then, other days she is up in the wheel chair, drinks and eats the puree food. She was using her feet to get around while in the wheel chair. Some days she just stares into space, lays in bed and cold as ice.
The clergy has come in and mentioned several times last week to make the funeral arrangements. Day to Day has its ups and downs. How can she be close to death if her organs are not shutting down but, she has lost many pounds and difficult swallowing from time to time. So confused! We seem like we are on a roller coaster.
Please comment. Thanks!
Hi Kimberly
I’m sorry to hear your Mother is having such a difficult time. I can only imagine how hard this is for you. Alzheimer’s is a cruel disease to the people that have it and it’s devastating to the people that love them. It causes so much anguish.
I’m glad to hear they were able to get her sodium level down. I shows she is still able to stabilize even if it took medical intervention. Did they say what might have caused the rise in sodium level. The elderly and especially those with Alzheimer’s often have sodium and potassium imbalances. Sometimes it can be traced to diet like food that has a high sodium content or unmonitored access to salt during a meal and other times the cause is unknown.
Difficulty swallowing is something my many elderly have trouble with. For the most part, every problem a person with Alzheimer’s has, is the same type of problem other elderly people have. But difficulty swallowing is a tough one. Besides getting enough nutrition you have to worry about choking and inhaling food or drink which may lead to Aspiration Pneumonia.
Aspiration Pneumonia (from aspirate (inhale)) an inflammation of your lungs and bronchial tubes happens when you inhale something you’re trying to swallow (food, drink, saliva) or from your stomach when you vomit. Although this is not caused by the same things as other types of Pneumonia is can be very serious.
The decline of a persons health when they have Alzheimer’s seems to go in cycles. From good days to days when everything is on the decline. Then, just when it seems like it’s not going to improve it does. When there is a decline there isn’t a specific number of days before they improve. It could be one day, a few days or even longer than a week. It’s nerve-racking, watching for improvement, hoping it will improve, wondering if it will, is this the time it doesn’t get better.
It will drive you crazy, well it did me. Even though I had see these cycles dozens of times I found it hard each time. I would be in a constant state worry. But… Often the person with Alzheimer’s returns to the same level they were previously or close to it. This is part of a continuous downward spiral.
As long a these cycles continue, days when your Mother eats, is sitting up, has some form of interaction and days when she doesn’t eat, stares and seems to be elsewhere, she probably will be around a little longer. It’s not certain but from my own experience and talking to others it may not be time for her to pass. That said, you never know if it’s the last decline leading to death. There’s no way to know until it does.
Death happens because of so many factors. Something major could fail. Sometimes the multiple systems in the body are functioning poorly. Anyone one on it’s own wouldn’t be life threatening but when they function poorly at the same time it can be serious. Parts of the brain that control organs and the bodies normal functions can deteriorate and cause isolated failures leading to death. The body has an incredible ability to survive even when it doesn’t seem possible. In a normal death, which can also happen for a person with Alzheimer’s disease, the brain sends out chemical messengers that tell all the organs to shut down.
Going through this as a family member is stressful, emotional, exhausting and it wears you down. Please take time for yourself to stay healthy. Don’t feel obligated to make funeral arrangements before your Mother passes. I know when people say stuff like that it’s like they’re telling you to give up any hope.
When it comes to death nothing is predictable. Not the doctors and not the clergy know the day or the hour it will come and you have to do what you feel is right. For them it’s just another death and they will move on without a second thought. This is part of your life that will revisit your thoughts and memories the rest of your life. Do what feels right in your heart and in your own time. Blessings to your Mother, you and your family.
Just reading this article i can feel the rawness is still there from your very personal experiences. I guess until a loved one falls victim to alzheimers no one can truly understand the impact it has on others. Thanks for sharing.
Hi Deb
It does have a big impact on you, to the very core. You’re dealing with the situation for such a very long time. What bothers me to this day is how the professional medical community views Alzheimer’s patients, heck the elderly in general. The things I overheard during a few overnight stays at different times in the local hospital put it in perspective. When they don’t think anyone can hear what they’re saying. What they tell you and and how they act is totally different than the way they are. It reminded me of the song Smiling Faces Sometimes by the Dramatics.
Don’t get me wrong there were a few really good Nurses and Medical Assistants and even a couple of Doctors but they were the exception. It’s like a few beautiful flowers trying to survive in a bed of smothering weeds.
What a hugely powerful blog, should be compulsory reading for anyone suffering from alzheimers or caring someone who is suffering from this dreadful disease
Thanks Mike, If you know anyone with that has a family member with Alzheimer’s disease or someone already in the role of caregiver I would appreciate it if you would share it with them. I think it would also benefit families and caregivers if their friends would read this just to help them under stand what they are going through. I have a lot more to share and will as I find the time.
Thanks to all for sharing. I am the Caregiver for my Mom who was diagnosed 13 years ago with Alzheimer’s. After 3 years in a nursing home, I brought her to my home about a month ago. She is a bed patient and has been for over a year. She has been unable to walk for 2 years. Please know your posts have been comforting in that I forever question myself about whether I am handling things appropriately. I will share more about my journey soon. Again, thanks to all for sharing.
What a great source of information! My Dad has had Alzheimers since 2012. He is in a memory unit for last two years. I just received a text from my sister two days ago that in addition to recently being immobile he is on oxygen, Morphine and an anti-anxiety med. We are a big family of 5 sibs. My sister was caregiver for a time and she has medical power of attourney. So I researched late stage- death, everything so rosey, not the reality you give. I will miss him dearly, but I pray its not long. I am his first child and the only child between my Dad and Mom. As much as I will miss him, he needs to be with the lord. I know my sister will make the right choice. Glad I saw this and all the other comments