Barbara, Can you finish the portion on dementia and dying that was not finished on your The Art of Manliness podcast?
There are just two ways to die, fast (sudden death) or gradual (old age or disease). Fast death just happens, without warning. Gradual death has a process to it. If it didn’t it would be fast death.
The process of a gradual death from disease takes two to four months (old age with no disease takes longer). Three things are the sign posts that say the dying process has begun: decreased eating, increased sleeping, and withdrawal. These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.
Weeks before a gradual death there are signs we look for that come in addition to decreased eating, increased sleeping, and withdrawal. On this continuum, in the months before death a person looks frail and sick but does not necessarily look like they are dying. In the weeks before death the person now looks like they are dying. (See Gone From My Sight for a description of all the signs of approaching death).
Dementia doesn’t play by these rules. Someone with dementia does not follow the process of a gradual death; they do not show us the signs that death is approaching. Someone with dementia can withdraw from this world’s activities for years, by being not interested, non-interactive, uncomprehending, unfocused. Someone with dementia can begin sleeping more, or even sleep all the time, and not have entered the dying process. Again, they don’t play by the rules.
Their food intake can decrease but it isn’t until they begin forgetting how to swallow or have difficulty swallowing without choking that dying actually begins. If we don’t eat we can’t live. If the decision not to use a feeding tube is made then the dying process starts. ALWAYS, ALWAYS offer food. You don’t just one day stop feeding someone. Generally, at this point the person is struggling against eating. We are the ones that are concerned. The person’s body has already begun to shut down and is probably disliking food. Offer, but don’t plead. Also beware of choking.
When the decision to not use a feeding tube has been made, depending upon the person’s weight and how much they are eating and drinking, death will probably come within weeks. Now you will see all the signs of approaching death that occur from other diseases and old age. Those signs will fit into the normal timeline that affects others as death approaches.
Something more... about Signs of Approaching Death with Dementia
I suggest my booklet How Do I Know You? Dementia At End Of Life to families with a loved one who is dying with dementia.
188 comments
Barbara Karnes
Hi Annette, your description of your Aunt Sybil does sound like a rally before death. It is like we are sometimes given a gift just before our loved one leaves us.
So often it is a fall in the elderly that begins the actual dying process. It is like we just don’t have enough "reserves in our energy bank” to keep our old body functioning and do major repairs on it at the same time. I know that sounds simplistic but seems to be true.
Love Sybil, talk with her, tell her what is in your heart even though it may appear she doesn’t hear or understand you. It sounds like you are a great niece. Blessings to you and your family. Barbara
Hi Annette, your description of your Aunt Sybil does sound like a rally before death. It is like we are sometimes given a gift just before our loved one leaves us.
So often it is a fall in the elderly that begins the actual dying process. It is like we just don’t have enough "reserves in our energy bank” to keep our old body functioning and do major repairs on it at the same time. I know that sounds simplistic but seems to be true.
Love Sybil, talk with her, tell her what is in your heart even though it may appear she doesn’t hear or understand you. It sounds like you are a great niece. Blessings to you and your family. Barbara
Annette Oliver
I help care for my aunt Sybil. She has dementia. She is 84 years of age. She was driving until last January 2017. She had a stroke in January 2017 and her health has declined since. She has been in and out of the hosptial and nursing homes. She came home in February this year, I was working with her, excersing, had her walking with walker, she was eating good, then she fell and broke her hip.
Sybil had surgery five weeks ago. She has really declined. We have brought her home with help of hospice. She doesn’t eat three bites a day, if she eats that. She hurts alot. She cries alot. She hates the taste of water or any other food or drink. She sleeps most of the time. The past three days have been very interesting to the family. She has been eating, laughing and wanting to get out of the bed. Today, she took a turn for the worse. She hasn’t eating all day, nor drinking and you can’t understand a word she says. I feel like this is a last burst of life for her and now on her road of declining fast. Thanks for any input and appreciate reading all these post. Thanks Annette
I help care for my aunt Sybil. She has dementia. She is 84 years of age. She was driving until last January 2017. She had a stroke in January 2017 and her health has declined since. She has been in and out of the hosptial and nursing homes. She came home in February this year, I was working with her, excersing, had her walking with walker, she was eating good, then she fell and broke her hip.
Sybil had surgery five weeks ago. She has really declined. We have brought her home with help of hospice. She doesn’t eat three bites a day, if she eats that. She hurts alot. She cries alot. She hates the taste of water or any other food or drink. She sleeps most of the time. The past three days have been very interesting to the family. She has been eating, laughing and wanting to get out of the bed. Today, she took a turn for the worse. She hasn’t eating all day, nor drinking and you can’t understand a word she says. I feel like this is a last burst of life for her and now on her road of declining fast. Thanks for any input and appreciate reading all these post. Thanks Annette
Barbara Karnes
Hi Brianne, in response to your blog post about how long can a person live on just juice and a soda a day—I don’t really know. It will vary with body size
(the heavier a person is the more weight they have to lose before their body can’t function) and the disease process. From your description it doesn’t sound as if what I call “labor” has begun. Labor being 1 -3 weeks. He seems too alert. Have you asked your hospice nurse what they think?
I have a booklet called Gone From My Sight which gives guidelines for months,weeks, days and hours. It may be helpful in assessing where your father – in -law is.
I am pleased you are letting your daughters visit. How we treat approaching death with our children is how they will think of death the rest of their life. Make it normal, natural, nothing to fear. Grandpa is dying and this is how it happens. He is doing a good job. Nothing bad is happening. Dying is sad but not bad. My blessings are with you and your family. Barbara
Hi Brianne, in response to your blog post about how long can a person live on just juice and a soda a day—I don’t really know. It will vary with body size
(the heavier a person is the more weight they have to lose before their body can’t function) and the disease process. From your description it doesn’t sound as if what I call “labor” has begun. Labor being 1 -3 weeks. He seems too alert. Have you asked your hospice nurse what they think?
I have a booklet called Gone From My Sight which gives guidelines for months,weeks, days and hours. It may be helpful in assessing where your father – in -law is.
I am pleased you are letting your daughters visit. How we treat approaching death with our children is how they will think of death the rest of their life. Make it normal, natural, nothing to fear. Grandpa is dying and this is how it happens. He is doing a good job. Nothing bad is happening. Dying is sad but not bad. My blessings are with you and your family. Barbara
Brianne
Hello Barbara,
My father in law has been on hospice for a couple months now. He had 3 different cancers which caused his diabetes that’s what the doctors tell us. He had dialysis in January went to rehab for a little while before going home. He’s lost so much weight now only drinks juice and Pepsi once and awhile he’ll eat a mandarin orange but its not often at all. He slept a lot before now even more. He looks at the clock tells my mother in law my husband will be there soon for lunch. He wakes up for only a few minutes at a time takes a couple sips and goes back to sleep. It makes me wonder how long his body can go with so little nourishment? So far no website tells me anything about how long you live on juice and a can of soda a day. I know each case is similar yet very different. When I was there yesterday he asked kept asking if different people knew (about his condition). At times he knows he’s getting ready to pass others he doesn’t know what’s going on. I know time is limited with Dad. One of the hospice people noticed his decline Monday and increased his caregivers to 3 days a week. We have 2 teenage daughters one with a form of Autism I’ve restricted their time with him not wanting them to be hurt by his decline. Only recently have I let them visit him more.
Hello Barbara,
My father in law has been on hospice for a couple months now. He had 3 different cancers which caused his diabetes that’s what the doctors tell us. He had dialysis in January went to rehab for a little while before going home. He’s lost so much weight now only drinks juice and Pepsi once and awhile he’ll eat a mandarin orange but its not often at all. He slept a lot before now even more. He looks at the clock tells my mother in law my husband will be there soon for lunch. He wakes up for only a few minutes at a time takes a couple sips and goes back to sleep. It makes me wonder how long his body can go with so little nourishment? So far no website tells me anything about how long you live on juice and a can of soda a day. I know each case is similar yet very different. When I was there yesterday he asked kept asking if different people knew (about his condition). At times he knows he’s getting ready to pass others he doesn’t know what’s going on. I know time is limited with Dad. One of the hospice people noticed his decline Monday and increased his caregivers to 3 days a week. We have 2 teenage daughters one with a form of Autism I’ve restricted their time with him not wanting them to be hurt by his decline. Only recently have I let them visit him more.
Barbara Karnes
Hi Don, thank you for sharing your experience with me. From what you have written it does appear that your wife has entered the dying process. Love her, talk with her as if she understands what you are saying (some part of her does) tell her of your comings and going, like “I will be back tomorrow around 2 o’clock”. Tell her how much she has meant to you, just reminisce with her even though it will appear she doesn’t hear or understand you.
Being with someone as they prepare to leave this life is heart wrenching. It hurts so much to know that time is so short. Use this gift of time to just be with her.
My thoughts and blessings are with both of you. Barbara.
Hi Don, thank you for sharing your experience with me. From what you have written it does appear that your wife has entered the dying process. Love her, talk with her as if she understands what you are saying (some part of her does) tell her of your comings and going, like “I will be back tomorrow around 2 o’clock”. Tell her how much she has meant to you, just reminisce with her even though it will appear she doesn’t hear or understand you.
Being with someone as they prepare to leave this life is heart wrenching. It hurts so much to know that time is so short. Use this gift of time to just be with her.
My thoughts and blessings are with both of you. Barbara.
Don Keiller
I am a man , 98 years of age, mentally and physically well—drive, playing member of two bridge clubs. My wife and I lived in Cumbria . It was eight years ago when my wife started doing things out of character and having trouble with walking. I and my only son decided that we should move down to Cambridge where he lived. It wasn’t long before my wife was diagnosed as having vascular dementia. She developed other complaints , including osteoporosis. She gradually deteriorated , began to be admitted to hospital several times—then six months in a special hospital. She came home and I looked after her in every way but one morning I had a bit of trouble getting her out of bed to put her in a wheel chair to take her to the toilet. I knew something was wrong, so I called for an ambulance. It was discovered that she had a spontaneous, severe fracture to her right femur and admitted to hospital again. After three months. I was advised to get her in a nursing home. She has been there, on her back for four and a half years, her mind gradually going. I go and visit her every day, For the past year she has existed on perhaps a few teaspoons of porridge, milk, and raspberries which I take into her every day. This last week, she has been asleep most of the time—I have difficulty in getting her to eat and I can only get a few mumbled nonsense words out of her . I am afraid the end is very near. I have known the end is inevitable but I still find it hard.
I am a man , 98 years of age, mentally and physically well—drive, playing member of two bridge clubs. My wife and I lived in Cumbria . It was eight years ago when my wife started doing things out of character and having trouble with walking. I and my only son decided that we should move down to Cambridge where he lived. It wasn’t long before my wife was diagnosed as having vascular dementia. She developed other complaints , including osteoporosis. She gradually deteriorated , began to be admitted to hospital several times—then six months in a special hospital. She came home and I looked after her in every way but one morning I had a bit of trouble getting her out of bed to put her in a wheel chair to take her to the toilet. I knew something was wrong, so I called for an ambulance. It was discovered that she had a spontaneous, severe fracture to her right femur and admitted to hospital again. After three months. I was advised to get her in a nursing home. She has been there, on her back for four and a half years, her mind gradually going. I go and visit her every day, For the past year she has existed on perhaps a few teaspoons of porridge, milk, and raspberries which I take into her every day. This last week, she has been asleep most of the time—I have difficulty in getting her to eat and I can only get a few mumbled nonsense words out of her . I am afraid the end is very near. I have known the end is inevitable but I still find it hard.
Barbara Karnes
Hi Cristina, in regards to your comments about your mother and her behavior: it does sound like her body is shutting down. Remember the key is her not eating and weight loss, all the other (sleeping, positioning, incontinence) can go on for a long time. It is only not eating that is your key to approaching death when dementia is the main disability.
My blessings are with you and your family. Barbara
Hi Cristina, in regards to your comments about your mother and her behavior: it does sound like her body is shutting down. Remember the key is her not eating and weight loss, all the other (sleeping, positioning, incontinence) can go on for a long time. It is only not eating that is your key to approaching death when dementia is the main disability.
My blessings are with you and your family. Barbara
Barbara Karnes
Hi Ankara, I don’t have enough medical information to know if your grandmother has entered the dying process. What I do know is any medical incident in a 93 year old person, which her fall and broken hip was, results in the person not being able to return to the physical level of activity that they had before the incident. It seems to be part of the aging process that generally the physical body cannot be better or even as good as they were after a major physical mishap. Also for someone with dementia any disruption in their routine and “normal” activity creates more confusion. Maybe she will adapt and “even out”, be less fearful, but maybe not. Be gentle with her, I wouldn’t force her to get up, Know her previous level of activity and behavior may not return. This is the time to love her. Try to find some way to find joy in each day. I know it is hard with dementia and a declining physical body to find the good. Sometimes just a smile is the good.
My blessings and thoughts are with you and your grandmother.
Barbara
Hi Ankara, I don’t have enough medical information to know if your grandmother has entered the dying process. What I do know is any medical incident in a 93 year old person, which her fall and broken hip was, results in the person not being able to return to the physical level of activity that they had before the incident. It seems to be part of the aging process that generally the physical body cannot be better or even as good as they were after a major physical mishap. Also for someone with dementia any disruption in their routine and “normal” activity creates more confusion. Maybe she will adapt and “even out”, be less fearful, but maybe not. Be gentle with her, I wouldn’t force her to get up, Know her previous level of activity and behavior may not return. This is the time to love her. Try to find some way to find joy in each day. I know it is hard with dementia and a declining physical body to find the good. Sometimes just a smile is the good.
My blessings and thoughts are with you and your grandmother.
Barbara
Barbara Karnes
Hi Cheryl, I am so glad my blog article was helpful for you. With dementia it is so difficult to project approaching death. Have you read my booklet on dementia at end of life? Blessings to you and your mother. It sounds like she is very blessed to have a caring daughter like you. Barbara
Hi Cheryl, I am so glad my blog article was helpful for you. With dementia it is so difficult to project approaching death. Have you read my booklet on dementia at end of life? Blessings to you and your mother. It sounds like she is very blessed to have a caring daughter like you. Barbara
Cristina
I am just reading to get to familiar with dementia symptoms.
I am a caregiver of 80 years old mother. She has losse so much weight, hardly eats or drinks, some time sleep more than 2 days, I have to wake her up to eat, she walks slowly and leaned to the left side, most of the time she is sleeping …
She talks words that makes no meaning… she wares diapers becasue she doesn’t recognize the restroom any more, starting to loose mobility… I don’t know if her body is shutting down.
I am just reading to get to familiar with dementia symptoms.
I am a caregiver of 80 years old mother. She has losse so much weight, hardly eats or drinks, some time sleep more than 2 days, I have to wake her up to eat, she walks slowly and leaned to the left side, most of the time she is sleeping …
She talks words that makes no meaning… she wares diapers becasue she doesn’t recognize the restroom any more, starting to loose mobility… I don’t know if her body is shutting down.
Anhara
I’m my grandma’s care giver. On Dec,28,2017 she fell and broke her hip and had to go to a nursing home for 60 days. They had her walking. Now that she is home she won’t leave her bed. She is completely incontinent. She was not like that before her hip injury. She stares off for hours and seems very distant. She has been eating good. She dont really recognize anybody. I try to get her walking but she just won’t she says she is tried all the time. She is 93 and I believe her hip fracture caused alot of her down fall. Do you believe she is starting to die? I cant even bare using the word death but I know she is suffering and it breaks my heart
I’m my grandma’s care giver. On Dec,28,2017 she fell and broke her hip and had to go to a nursing home for 60 days. They had her walking. Now that she is home she won’t leave her bed. She is completely incontinent. She was not like that before her hip injury. She stares off for hours and seems very distant. She has been eating good. She dont really recognize anybody. I try to get her walking but she just won’t she says she is tried all the time. She is 93 and I believe her hip fracture caused alot of her down fall. Do you believe she is starting to die? I cant even bare using the word death but I know she is suffering and it breaks my heart
Cheryl Ward
Nurse Karnes, I am so appreciative I found this article. My mother is 94 as of November 10th. I took her out of the nursing home on February 1, 2015, where she’d been in residence for 5 years. She was put on hospice with 6 months to a year to live.
Well, they put her off hospice twice because she didn’t pass and she’s still with me.
I appreciate you because the nurses told me many things and had me expecting death in the timeframe given. I watch videos, read articles, stories, blogs, etc… “Signs Of Approaching Death With Dementia”, gave me the insight I needed and I thank you so much…I am so grateful to have found it.
I feel so much better knowing for SURE what I’m seeing that she’s experiencing…please know you have helped me by easing my stress…Cheryl
Nurse Karnes, I am so appreciative I found this article. My mother is 94 as of November 10th. I took her out of the nursing home on February 1, 2015, where she’d been in residence for 5 years. She was put on hospice with 6 months to a year to live.
Well, they put her off hospice twice because she didn’t pass and she’s still with me.
I appreciate you because the nurses told me many things and had me expecting death in the timeframe given. I watch videos, read articles, stories, blogs, etc… “Signs Of Approaching Death With Dementia”, gave me the insight I needed and I thank you so much…I am so grateful to have found it.
I feel so much better knowing for SURE what I’m seeing that she’s experiencing…please know you have helped me by easing my stress…Cheryl
Judith Lichty
I’ve joined NODA … no one does alone… at Lehigh Valley Hospital Network- Cedar Crest. Husband died 3yrs ago. Several friends are caring for dimentia husbands . I want to learn as much as possible to be able to help them ease their stress.
I’ve joined NODA … no one does alone… at Lehigh Valley Hospital Network- Cedar Crest. Husband died 3yrs ago. Several friends are caring for dimentia husbands . I want to learn as much as possible to be able to help them ease their stress.
Barbara Karnes
Hi Ellen, about your question of is your mom entering the dying process because you are having difficulty waking her up. I don’t know enough about her body to make a definitive statement. Because dementia doesn’t play by any rules I’m thinking she has not entered the dying process. It really isn’t until she is not eating or having difficulty eating that you can be confident the dying process has begun. Blessings! Barbara
Hi Ellen, about your question of is your mom entering the dying process because you are having difficulty waking her up. I don’t know enough about her body to make a definitive statement. Because dementia doesn’t play by any rules I’m thinking she has not entered the dying process. It really isn’t until she is not eating or having difficulty eating that you can be confident the dying process has begun. Blessings! Barbara
Ellen Simmons
First of All to All You Caregivers God Bless You All...its a Full Time Job Most People Can Not Do…My mom has had Dementia for 10 yrs my husband and I have had her with us for the last 8 yrs she still eats goes to the bathroom with us helping her get to the toilet we Help her in every way ..my question is ..she is sleeping a lot more and sometimes trying to wake her up just from sitting in a chair…its like trying to wake someone up in acoma ..her eyes seem rolled up in her head and it takes us at least 10 to 15 min to wake her up…is this a near death thing or her desire to just give up yet her body is still Healthy…??
First of All to All You Caregivers God Bless You All...its a Full Time Job Most People Can Not Do…My mom has had Dementia for 10 yrs my husband and I have had her with us for the last 8 yrs she still eats goes to the bathroom with us helping her get to the toilet we Help her in every way ..my question is ..she is sleeping a lot more and sometimes trying to wake her up just from sitting in a chair…its like trying to wake someone up in acoma ..her eyes seem rolled up in her head and it takes us at least 10 to 15 min to wake her up…is this a near death thing or her desire to just give up yet her body is still Healthy…??
Bettye
My brother just pass away 2-09-2018, He had dementia for about 4 years. He stopped eating, walking, sleeping, and other things. Was put in the spiral 1-20-2018. It is so hard to watch a love one die with this disease.
My brother just pass away 2-09-2018, He had dementia for about 4 years. He stopped eating, walking, sleeping, and other things. Was put in the spiral 1-20-2018. It is so hard to watch a love one die with this disease.
Barbara Karnes
Hi Nani, you asked if I think your mother waited for your sisters to arrive before she died even though she had dementia. Yes, I do believe a person has limited control over the time that they die, even if they have dementia. I believe we are more than our physical body, that there is a “driver” to this vehicle we call our body. It is the “driver” that has control beyond the physical. The “ driver” does not have dementia. This is a controversial idea—some believe it, others not. My opinion is what do we have to lose by talking to the person that is dying, by telling them who is coming and going, by expressing our love even our regrets in the moments before death—a lot if they could understand, nothing if they didn’t.
My blessings are with you and your family. Barbara
Hi Nani, you asked if I think your mother waited for your sisters to arrive before she died even though she had dementia. Yes, I do believe a person has limited control over the time that they die, even if they have dementia. I believe we are more than our physical body, that there is a “driver” to this vehicle we call our body. It is the “driver” that has control beyond the physical. The “ driver” does not have dementia. This is a controversial idea—some believe it, others not. My opinion is what do we have to lose by talking to the person that is dying, by telling them who is coming and going, by expressing our love even our regrets in the moments before death—a lot if they could understand, nothing if they didn’t.
My blessings are with you and your family. Barbara
Barbara Karnes
Hi Kay, in response to your comment on my blog page about your mother and her progressing dementia, there isn’t a lot of guidance I can give you not having more information. I can say that dementia doesn’t play by the rules for end of life. Withdrawing and sleeping can be present for years and does not signify approaching death. Food, not eating, not swallowing are your key signs. If we don’t eat, we can’t continue to live. Always offer food (be careful of choking) but don’t force food.
About how much your mother knows: obviously I don’t know for sure but I always operate on the belief of “what if some part of them knows”. I recommend talking to the person as if they understand. Share coming and goings, thoughts of love and thoughts of regret. Say what your heart needs to say. I believe some part hears and knows.
Do I think she wants to come home? Yes, nobody wants to be in a hospital. We all will choose home and our loved ones.
I do have a concern for you. Taking care of someone that is total care is 24/7 plus so much more. As a caregiver it is not only physically exhausting but emotionally draining. What kind of support system do you have in place for you?
My blessings are with you and your family. Barbara
Hi Kay, in response to your comment on my blog page about your mother and her progressing dementia, there isn’t a lot of guidance I can give you not having more information. I can say that dementia doesn’t play by the rules for end of life. Withdrawing and sleeping can be present for years and does not signify approaching death. Food, not eating, not swallowing are your key signs. If we don’t eat, we can’t continue to live. Always offer food (be careful of choking) but don’t force food.
About how much your mother knows: obviously I don’t know for sure but I always operate on the belief of “what if some part of them knows”. I recommend talking to the person as if they understand. Share coming and goings, thoughts of love and thoughts of regret. Say what your heart needs to say. I believe some part hears and knows.
Do I think she wants to come home? Yes, nobody wants to be in a hospital. We all will choose home and our loved ones.
I do have a concern for you. Taking care of someone that is total care is 24/7 plus so much more. As a caregiver it is not only physically exhausting but emotionally draining. What kind of support system do you have in place for you?
My blessings are with you and your family. Barbara
Encarnacion Martinez
My mother suffered of demential for 4 years. She past away July 10th, 2017. I was at her side till the last minute and saw her take her last breath. Does a person with demential know that she is dying? Neither of my sisters made it over before she died but I believe that she waited for them until the last minute.
My mother suffered of demential for 4 years. She past away July 10th, 2017. I was at her side till the last minute and saw her take her last breath. Does a person with demential know that she is dying? Neither of my sisters made it over before she died but I believe that she waited for them until the last minute.
Kay
Hi my mother has FTl dementia diagnosed June 2016, she was quite normal until she broke her hip in Feb 2017, and deteriorated when she came home with poor mobility, by September she had lost all speech, from March 2017 until January 2018 she screamed all the time, and obsessed about being taken out or going to the toilet. In January 2018 she was admitted into hospital where she remains at the moment, with pneumonia and sepsis, although now awaiting for her to come home, October she was diagnosed stage 2 with swallowing and whilst in hospital diagnosed stage 1, she is very vacant and stares through us all, she is unable to communicate at all and her muscles are contracting and also lost a lot of weight, a stone and eating and drinking less than she usually would. We have been told she is now advanced stages and no longer mobile, we feel she maybe waiting to come home, as we do think she still recognises us all. The hospital seem to think otherwise!
Hi my mother has FTl dementia diagnosed June 2016, she was quite normal until she broke her hip in Feb 2017, and deteriorated when she came home with poor mobility, by September she had lost all speech, from March 2017 until January 2018 she screamed all the time, and obsessed about being taken out or going to the toilet. In January 2018 she was admitted into hospital where she remains at the moment, with pneumonia and sepsis, although now awaiting for her to come home, October she was diagnosed stage 2 with swallowing and whilst in hospital diagnosed stage 1, she is very vacant and stares through us all, she is unable to communicate at all and her muscles are contracting and also lost a lot of weight, a stone and eating and drinking less than she usually would. We have been told she is now advanced stages and no longer mobile, we feel she maybe waiting to come home, as we do think she still recognises us all. The hospital seem to think otherwise!
Barbara Karnes
Hi Tiffany, dementia so doesn’t play by any rules. I have no idea what is happening with your grandmother. She certainly has an interesting other reality. I would just talk with her and see if she would answer any questions about what she is seeing and experiencing. I see dementia as a window into another reality—the person’s reality for the moment. No harm is done by asking her about what she is seeing and doing. I don’t think this behavior means she is dying right now. Watch her eating for directions to her entering the drying process. You might find my booklet on dementia, How Do I Know You, helpful. https://bkbooks.com/collections/all-products/products/how-do-i-know-you-dementia-at-the-end-of-life
Blessings to you and your family. Barbara
Hi Tiffany, dementia so doesn’t play by any rules. I have no idea what is happening with your grandmother. She certainly has an interesting other reality. I would just talk with her and see if she would answer any questions about what she is seeing and experiencing. I see dementia as a window into another reality—the person’s reality for the moment. No harm is done by asking her about what she is seeing and doing. I don’t think this behavior means she is dying right now. Watch her eating for directions to her entering the drying process. You might find my booklet on dementia, How Do I Know You, helpful. https://bkbooks.com/collections/all-products/products/how-do-i-know-you-dementia-at-the-end-of-life
Blessings to you and your family. Barbara
Tiffany
My grandmother is 95 yrs old. She’s had dementia for a while. She’s up moving around. She can’t tell her days from nights sometimes. The other night she was sleeping. Around 3:30am to 9:00am she was talking g her normal voice, then it was like a man’s deep voice was talking too. I had to get conformation from my aunt. She said she could hear the same thing. Then she started singing Christian songs she knew. And praying and saying scriptures like she remembered. I need to find out what’s going on. Is she dying or What? Help!?!?!
My grandmother is 95 yrs old. She’s had dementia for a while. She’s up moving around. She can’t tell her days from nights sometimes. The other night she was sleeping. Around 3:30am to 9:00am she was talking g her normal voice, then it was like a man’s deep voice was talking too. I had to get conformation from my aunt. She said she could hear the same thing. Then she started singing Christian songs she knew. And praying and saying scriptures like she remembered. I need to find out what’s going on. Is she dying or What? Help!?!?!
Beth
My Mother was diagnosed with vascular dementia approx 7 years ago. She has been in a nursing home for 3 to 4 years, bedridden for nearly 2, she’s 90. I am a Brit Expat in the USA and try to get over the pond as often as I can to see her. My siblings keep me updated on Mum, and the last report was today. Her intake of food has decreased considerably, maybe a spoonful or two throughout the day, she now weighs 70lbs. Mum just sleeps.
Her nursing home, siblings and I believe her passing is not too far away.
This disease is so cruel, and as much as we don’t want our oh so brave and beautiful Mum to slip away, we don’t want to see her suffer, we want her to have peace and be free.
We love you Mum, thank you for everything you sacrificed for your family, you are our strength and anyways will be. God bless you.
My Mother was diagnosed with vascular dementia approx 7 years ago. She has been in a nursing home for 3 to 4 years, bedridden for nearly 2, she’s 90. I am a Brit Expat in the USA and try to get over the pond as often as I can to see her. My siblings keep me updated on Mum, and the last report was today. Her intake of food has decreased considerably, maybe a spoonful or two throughout the day, she now weighs 70lbs. Mum just sleeps.
Her nursing home, siblings and I believe her passing is not too far away.
This disease is so cruel, and as much as we don’t want our oh so brave and beautiful Mum to slip away, we don’t want to see her suffer, we want her to have peace and be free.
We love you Mum, thank you for everything you sacrificed for your family, you are our strength and anyways will be. God bless you.
Valerie
Hi to everyone who is connected to this page, My Mother was Diagnosed With Dementia 10 years ago, She has lose so much weight it’s mind blowing, and for years we had to put in the shower to wash her, now we are at this point where she is not eating,she will hold the food in her mouth for hours, it’s like her brain is not working like it use to, and we are telling her what to do and she still can’t get it,but after so many times of telling her, then with our help she does what we ask her to do,now we are at this point where she is sleeping all the time and her conversations are very hard to understand at times, she just stares at you with a blank look, our Mother is still here but not here if you know what I mean …just the other day I held her in my arms and said a prayer for her and told her how much I love her,…crying, crying,and crying, but before I end this, I want to thank my sisters for doing a fantastic job in taking care of our Mother’s needs while working, if it had not been for my sister April who opened her home and is still taking care of our Mother’s needs every day even when we can’t make it, I want to say, Thank you April for your heart of Gold.
Hi to everyone who is connected to this page, My Mother was Diagnosed With Dementia 10 years ago, She has lose so much weight it’s mind blowing, and for years we had to put in the shower to wash her, now we are at this point where she is not eating,she will hold the food in her mouth for hours, it’s like her brain is not working like it use to, and we are telling her what to do and she still can’t get it,but after so many times of telling her, then with our help she does what we ask her to do,now we are at this point where she is sleeping all the time and her conversations are very hard to understand at times, she just stares at you with a blank look, our Mother is still here but not here if you know what I mean …just the other day I held her in my arms and said a prayer for her and told her how much I love her,…crying, crying,and crying, but before I end this, I want to thank my sisters for doing a fantastic job in taking care of our Mother’s needs while working, if it had not been for my sister April who opened her home and is still taking care of our Mother’s needs every day even when we can’t make it, I want to say, Thank you April for your heart of Gold.
Barbara Karnes
Hi Karla, caring for someone with dementia is such a long, unsure ride. There are just no structured patterns that the person follows. Each is its own individual path. The individuality of this disease symptom makes caring for someone we care about all the more burdensome. Your question of how long just can’t be answered. It all is based on food unless something unexpected happens like a severe injury from a fall. Offer her food but if she doesn’t want it or doesn’t chew it don’t push. She will lose weight to the point her body can’t sustain itself. How long that will take depends on how big her body is now, My booklets Gone from My Sight, How Do I Know You and The Eleventh Hour will help guide you through this time.
Blessings! Barbara
Hi Karla, caring for someone with dementia is such a long, unsure ride. There are just no structured patterns that the person follows. Each is its own individual path. The individuality of this disease symptom makes caring for someone we care about all the more burdensome. Your question of how long just can’t be answered. It all is based on food unless something unexpected happens like a severe injury from a fall. Offer her food but if she doesn’t want it or doesn’t chew it don’t push. She will lose weight to the point her body can’t sustain itself. How long that will take depends on how big her body is now, My booklets Gone from My Sight, How Do I Know You and The Eleventh Hour will help guide you through this time.
Blessings! Barbara
Karla Finn
Hello,
My mom has been in and out of the hospital for the last year. She can’t walk because of two hip replacement surgeries that didn’t go well. In the last 6 months she has started to change – when in the hospital and at home, she screams out for “mommy” and she is very agitated. She has fallen several times in the middle of the night but refuses to go to long or short term care facilities. I am her only caregiver, and I quit my job to do so. Lately she has all but stopped eating. She’s hungry, but it’s so hard for her to eat she only takes one or two bites and I have to feed her small amounts. She rarely opens her eyes any more. She came home from the hospital this last time in hospice care, so at least now I have help and the hospital trips will stop. The doctors all recommended this and that she be a DNR. How long does it sound like she has based on her symptoms? She cannot communicate in any meaningful way, words are slurred.
Any words of wisdom would be appreciated. Thank you, Karla Finn
Hello,
My mom has been in and out of the hospital for the last year. She can’t walk because of two hip replacement surgeries that didn’t go well. In the last 6 months she has started to change – when in the hospital and at home, she screams out for “mommy” and she is very agitated. She has fallen several times in the middle of the night but refuses to go to long or short term care facilities. I am her only caregiver, and I quit my job to do so. Lately she has all but stopped eating. She’s hungry, but it’s so hard for her to eat she only takes one or two bites and I have to feed her small amounts. She rarely opens her eyes any more. She came home from the hospital this last time in hospice care, so at least now I have help and the hospital trips will stop. The doctors all recommended this and that she be a DNR. How long does it sound like she has based on her symptoms? She cannot communicate in any meaningful way, words are slurred.
Any words of wisdom would be appreciated. Thank you, Karla Finn
Barbara Karnes
Hi Marion, in response to your mother’s rapid decline verse her diagnosis, it does seem unusual. Fast, unexpected death, and your mother’s death was unexpected, leaves us the living with so many unanswered questions. Questions we will never find answers for. What I see beyond the shock and sadness for your family is the rapid, gentle death of your mother. She seems to have by passed the labor of dying which is generally 1 to 3 weeks and just left. Good for her. Since you did not have an opportunity to say goodbye you might write her a letter now, put all your unsaid thoughts on paper. Write about the good, the difficult, the happy, the sad, everything that you have always wanted to say but didn’t. Let the thoughts, words and tears flow then take the letter and burn it. Scatter the ashes to the winds and as they fly away let the thoughts and concerns go with them. Mom will get your message and you will have some closure to move forward in your grief.
My blessings are with you and your family. Barbara
Hi Marion, in response to your mother’s rapid decline verse her diagnosis, it does seem unusual. Fast, unexpected death, and your mother’s death was unexpected, leaves us the living with so many unanswered questions. Questions we will never find answers for. What I see beyond the shock and sadness for your family is the rapid, gentle death of your mother. She seems to have by passed the labor of dying which is generally 1 to 3 weeks and just left. Good for her. Since you did not have an opportunity to say goodbye you might write her a letter now, put all your unsaid thoughts on paper. Write about the good, the difficult, the happy, the sad, everything that you have always wanted to say but didn’t. Let the thoughts, words and tears flow then take the letter and burn it. Scatter the ashes to the winds and as they fly away let the thoughts and concerns go with them. Mom will get your message and you will have some closure to move forward in your grief.
My blessings are with you and your family. Barbara
marion
My mother who was 82, was diagnosed with MCI June 2016 and changes to the brain. we all knew it was more than MCI, but we were unable to get her help. it was just cognitive impairment, and we were told to deal with it as a family, she kept leaving the house and travelling 420 miles in a cab, to visit her younger brother in his late seventies, these trips happened twice, by November, the decline was dramatic, She was diagnosed with late dementia, phycological behaviour and behavioural problems. in January 2017. For a month she improved on medication, then she had a fall , was kept in hospital for a day, the following day 7.00 am we got a call from hospital asking us to get there quick, by 1.00 pm she passed away. Death certificate said ….. upper respitary track infection, sepsis and dementia. We are all still struggling to deal with how quick this happened, how can someone get to the late stage of dementia that quick .
My mother who was 82, was diagnosed with MCI June 2016 and changes to the brain. we all knew it was more than MCI, but we were unable to get her help. it was just cognitive impairment, and we were told to deal with it as a family, she kept leaving the house and travelling 420 miles in a cab, to visit her younger brother in his late seventies, these trips happened twice, by November, the decline was dramatic, She was diagnosed with late dementia, phycological behaviour and behavioural problems. in January 2017. For a month she improved on medication, then she had a fall , was kept in hospital for a day, the following day 7.00 am we got a call from hospital asking us to get there quick, by 1.00 pm she passed away. Death certificate said ….. upper respitary track infection, sepsis and dementia. We are all still struggling to deal with how quick this happened, how can someone get to the late stage of dementia that quick .
Barbara Karnes
Hi Polly, it does sound like your husband has entered the dying process. You are doing all the appropriate things—milk shakes and offering but not forcing food. It sounds like he is not taking in enough calories to maintain his body activity which is why he is losing weight. What he is doing is very normal. Eating gradually decreases. Just remember it is food that keeps us on this planet and as the dying process unfolds the body naturally and gradually stops eating.
When someone has dementia how much they are sleeping does not signify the dying process. Eating and not eating is the only gauge for determining approaching death when dementia is involved.
If you have not read Gone From My Sight and The Eleventh Hour you may find them helpful as a guide through this challenging time. Know when labor begins 1 -3 weeks is when you begin following Gone From My Sight guidelines.
Blessings! Barbara
Hi Polly, it does sound like your husband has entered the dying process. You are doing all the appropriate things—milk shakes and offering but not forcing food. It sounds like he is not taking in enough calories to maintain his body activity which is why he is losing weight. What he is doing is very normal. Eating gradually decreases. Just remember it is food that keeps us on this planet and as the dying process unfolds the body naturally and gradually stops eating.
When someone has dementia how much they are sleeping does not signify the dying process. Eating and not eating is the only gauge for determining approaching death when dementia is involved.
If you have not read Gone From My Sight and The Eleventh Hour you may find them helpful as a guide through this challenging time. Know when labor begins 1 -3 weeks is when you begin following Gone From My Sight guidelines.
Blessings! Barbara
Polly B
I just happened upon this as I searched for information on how you know if someone with Alzheimer’s is dying—it is so timely. My husband is 66, diagnosed officially about 5-6 years ago. He lives in a memory care unit because I work fulltime. In the last 10 months, his weight has dropped from about 170 to 135 (he is 5’11" so he looks emaciated). He is under Hospice care. When given assistance, he will eat and drink, but the staff said they have a very hard time either waking him up for meals or else getting him to sit through a meal (he is still very mobile on his own). I have been very concerned about his weight loss for months, and they are supposed to be giving him protein shakes 2-3 times per day. One Hospice nurse strongly implied she thinks he is dying and this is his body’s natural shutting down process. I would appreciate your opinion.
I just happened upon this as I searched for information on how you know if someone with Alzheimer’s is dying—it is so timely. My husband is 66, diagnosed officially about 5-6 years ago. He lives in a memory care unit because I work fulltime. In the last 10 months, his weight has dropped from about 170 to 135 (he is 5’11" so he looks emaciated). He is under Hospice care. When given assistance, he will eat and drink, but the staff said they have a very hard time either waking him up for meals or else getting him to sit through a meal (he is still very mobile on his own). I have been very concerned about his weight loss for months, and they are supposed to be giving him protein shakes 2-3 times per day. One Hospice nurse strongly implied she thinks he is dying and this is his body’s natural shutting down process. I would appreciate your opinion.
Barbara Karnes
Good Morning Paula, it sounds like you and your father are doing wonderful, loving care of your mom. 10 years is a very long time to watch someone you love slowly drift away from you. Based on your description of what your mother is doing regarding food and drink (not swallowing, choking) I do believe she has entered the dying process. How long that will take depends on how big her body is, how much she weighs, and how many calories she does eat each day. During this time offer her food, remind her it is there in front of her but you don’t have to spoon feed her. Water is particularly hard and often causes choking. A liquid with more substance generally goes down easier. Again offer, don’t force.
Have you contacted the Alzheimer’s Association during these many years of caring for your mom? They can give you ideas for the types of liquids along with many other tips for caring for your mom. I have written a booklet How Do I Know You? that might be helpful. It is also time to get my booklet Gone From My Sight. My blessings and thoughts are with you and your family. Barbara
Good Morning Paula, it sounds like you and your father are doing wonderful, loving care of your mom. 10 years is a very long time to watch someone you love slowly drift away from you. Based on your description of what your mother is doing regarding food and drink (not swallowing, choking) I do believe she has entered the dying process. How long that will take depends on how big her body is, how much she weighs, and how many calories she does eat each day. During this time offer her food, remind her it is there in front of her but you don’t have to spoon feed her. Water is particularly hard and often causes choking. A liquid with more substance generally goes down easier. Again offer, don’t force.
Have you contacted the Alzheimer’s Association during these many years of caring for your mom? They can give you ideas for the types of liquids along with many other tips for caring for your mom. I have written a booklet How Do I Know You? that might be helpful. It is also time to get my booklet Gone From My Sight. My blessings and thoughts are with you and your family. Barbara
Paula Dayton
I just found this website and I am blessed to have done so. Mom is 85 and has had dementia for about 10 yrs now. She has many health-related issues, ie. stroke, A-fib, Type 1 diabetes and blindness. My dad & I have been managing mom for approx. 15 yrs, with the part-time help of mom’s caregiver, 3x per week. Mom is still able to walk (slowly, with the use of a cane) and is able to use the bathroom. Even though she has this incredible will-to-live, I believe she may be involuntarily, shutting down. She is really not eating much of anything…or she forgets food is in front of her. We repeatedly sit with her to “remind” her there is food in front of her. I’ve also noticed that she is choking for no apparent reason. She usually chokes on liquid rather than solids. (like when she is drinking her tea). She also holds the liquid in her mouth, for an extended amount of time, before she swallows it. It’s almost like she’s forgetting how to swallow. Also, she has just recently started sliding out of furniture. Even though we have chair pads and a cloth recliner, she is still managing to end up on the floor. She can also sleep 20-hrs per day, but we desperately try to discourage that by keeping on a schedule as best we can. My dad has his own health issues at 83 yrs old, but we all do our best for mom.
I’m scared to ask the question, “is she dying”…or starting to? I am a realist and understand the cycle of life. It helps to read other blogs and helps to know I am not alone in this process. I could use any suggestion as to what we should do or expect going forward. I appreciate any input & advice and thank each and every one of you~ We are all in this together.
I just found this website and I am blessed to have done so. Mom is 85 and has had dementia for about 10 yrs now. She has many health-related issues, ie. stroke, A-fib, Type 1 diabetes and blindness. My dad & I have been managing mom for approx. 15 yrs, with the part-time help of mom’s caregiver, 3x per week. Mom is still able to walk (slowly, with the use of a cane) and is able to use the bathroom. Even though she has this incredible will-to-live, I believe she may be involuntarily, shutting down. She is really not eating much of anything…or she forgets food is in front of her. We repeatedly sit with her to “remind” her there is food in front of her. I’ve also noticed that she is choking for no apparent reason. She usually chokes on liquid rather than solids. (like when she is drinking her tea). She also holds the liquid in her mouth, for an extended amount of time, before she swallows it. It’s almost like she’s forgetting how to swallow. Also, she has just recently started sliding out of furniture. Even though we have chair pads and a cloth recliner, she is still managing to end up on the floor. She can also sleep 20-hrs per day, but we desperately try to discourage that by keeping on a schedule as best we can. My dad has his own health issues at 83 yrs old, but we all do our best for mom.
I’m scared to ask the question, “is she dying”…or starting to? I am a realist and understand the cycle of life. It helps to read other blogs and helps to know I am not alone in this process. I could use any suggestion as to what we should do or expect going forward. I appreciate any input & advice and thank each and every one of you~ We are all in this together.
Barbara Karnes
Hi Kelli, you asked if the changes your mother is experiencing could mean she has entered the dying process. I can’t really tell not knowing her disease history. Dementia is such a fickle disease. It just doesn’t play by any rules so you never really know what anything means. It is only when she consistently is not eating enough to maintain her body that we can definitely say death is coming.
I know this is a very difficult time. My blessings are with you. Barbara
Hi Kelli, you asked if the changes your mother is experiencing could mean she has entered the dying process. I can’t really tell not knowing her disease history. Dementia is such a fickle disease. It just doesn’t play by any rules so you never really know what anything means. It is only when she consistently is not eating enough to maintain her body that we can definitely say death is coming.
I know this is a very difficult time. My blessings are with you. Barbara
Barbara Karnes
John, my thinking about your question of did your mom feel thirsty in the 4 days before she died is she probably did not. She was so removed from her physical body that she was not experiencing it in the same manner as we in our healthy bodies would. What you were watching was her labor to leave her body. That labor is harder on us the watchers than it is on the person working to leave.
My blessings to you and your family. Barbara
John, my thinking about your question of did your mom feel thirsty in the 4 days before she died is she probably did not. She was so removed from her physical body that she was not experiencing it in the same manner as we in our healthy bodies would. What you were watching was her labor to leave her body. That labor is harder on us the watchers than it is on the person working to leave.
My blessings to you and your family. Barbara
john cameron
my mother died of demensia last week .. they stopped all fluids and food it took her over four days too pass away she couldent talk for years either . would she have been desprate for water in her last four days …
my mother died of demensia last week .. they stopped all fluids and food it took her over four days too pass away she couldent talk for years either . would she have been desprate for water in her last four days …
Kelli Lambert
My mom’s speech is mostly babbling now,can’t hardly understand her,decreased appetite,and now suddenly starts crying for no reason,mind you normally she’s happy and smiling and laughing,is this a sign the end is getting close?
My mom’s speech is mostly babbling now,can’t hardly understand her,decreased appetite,and now suddenly starts crying for no reason,mind you normally she’s happy and smiling and laughing,is this a sign the end is getting close?
Barbara Karnes
Hi Jill, about your father sleeping up to 20 hours a day, that does not imply that he has entered the dying process. Dementia doesn’t play by the dying process rules. What you look at is how much he is eating. As eating becomes a challenge you can start looking for other signs of approaching death.
My thoughts are with you and your father.
Blessings! Barbara
Hi Jill, about your father sleeping up to 20 hours a day, that does not imply that he has entered the dying process. Dementia doesn’t play by the dying process rules. What you look at is how much he is eating. As eating becomes a challenge you can start looking for other signs of approaching death.
My thoughts are with you and your father.
Blessings! Barbara
Jill M Blair
My dad was diagnosed with dementia years ago. The last year has shown changes. Over the last two months he’s sleeping up to twenty hours a day. Is this a sign he is dying??
My dad was diagnosed with dementia years ago. The last year has shown changes. Over the last two months he’s sleeping up to twenty hours a day. Is this a sign he is dying??