QUESTION: Please speak to Hospice Approval Denied due to only major diagnosis code being Alzheimer's and not considered to be in final stage. But person not eating, ~70 lbs now, sleeping or resting most of time, too weak to get out of bed even to wheelchair now, doesn't seem like there's any way to live more than six more months. Do many people die this slow death without ever being approved for hospice?
What I have learned about patient’s with dementia (no matter by what clinical name the dementia is called) they do not play by the rules for signs of approaching death. It is very hard to determine if the patient has six months or less to live even if they are 70 pounds.
Why? Because with dementia the person can be sleeping a lot and withdrawing from the world about them---for years. The key signs of approaching death from disease, on a continuum from months before death to actual death, are a gradual increase in sleeping, gradual withdrawal from the world around them and a progression of decreased eating.
Eating becomes the key to admitting a person who has only dementia (and no other disease progression) onto hospice. When a person with dementia reaches the place where swallowing is impaired to the point a feeding tube is being considered---that is the time hospice can be considered. If artificial feeding is ruled out then bring in hospice. If a person doesn’t have nutrition, they will die---hence the need for hospice.
I know that there are all sorts of protocols for when to admit a person to hospice, of when a person is appropriate for the hospice benefit. Personally, I think it is very simple. If a person has a life threatening illness, whether they are receiving treatment or not, and in spite of all the medicines and treatments their condition continues to deteriorate, they are sleeping more, not interested in what is going on about them and eating less, they have probably entered the dying process and have a prognosis of months. This is when they are appropriate for hospice. Unfortunately, people (patients, families, physicians) wait until the actual labor of dying begins (one to three weeks before death) before calling hospice,
For the last few years hospice has been admitting dementia patients and because of their slow decline have been able to document their appropriateness. However when the medical records show patients with dementia consistently on the programs for a couple of years, red flags begin to wave. This is where hospices are now. Many hospices are reluctant to admit people with dementia because of all I have described above.
This brings us back to if you don’t eat, you don’t live. Consistent documentation of inability to swallow, choking, and aspiration with the choice of no artificial feeding seems to me to be an appropriate hospice referral. All this said it is up to the individual hospice. If one turns you down, try another.
Something more about Alzheimer's, Dementia Patients and Hospice...
As I've said before, dementia doesn't play by the rules. The usual signs of approaching death are clearly spelled out in Gone From My Sight.
6 comments
Barbara
Oh Theresa, dementia is so hard to understand. Each person with their dementia is different and that is what makes it so confusing in how to respond and what to do. It sounds like you are doing an excellent job of expressing your love for the mother who once knew you. You are there, you are trying. Do I think your mother has entered the dying process——probably not yet. Food is the gauge and she is still eating even though it isn’t much. Tell the nursing staff to offer her food at each meal but to not force her if she doesn’t want to eat. In regard to PT, don’t force her. Do everything to make her life comfortable and pleasant. Your goal is comfort, not fixing problems that arise. The pressure sore is comfort and do all that can be done to heal it. If getting out of bed is too stressful, let her stay in bed. It sounds like her condition is deteriorating (falling, weaker). It may be helpful to read my booklet How Do I Know You? and Gone From My Sight. I know it is hard to be with a mother whose behavior you no longer know or who knows you. Have you contacted your local Alzheimer’s association? Join one of their support groups. You and your sister need guidance and support during this challenging time. If you have questions please contact me. Use my personal email Barbara@bkbooks.com. My blessings are with you and your family. Barbara
Oh Theresa, dementia is so hard to understand. Each person with their dementia is different and that is what makes it so confusing in how to respond and what to do. It sounds like you are doing an excellent job of expressing your love for the mother who once knew you. You are there, you are trying. Do I think your mother has entered the dying process——probably not yet. Food is the gauge and she is still eating even though it isn’t much. Tell the nursing staff to offer her food at each meal but to not force her if she doesn’t want to eat. In regard to PT, don’t force her. Do everything to make her life comfortable and pleasant. Your goal is comfort, not fixing problems that arise. The pressure sore is comfort and do all that can be done to heal it. If getting out of bed is too stressful, let her stay in bed. It sounds like her condition is deteriorating (falling, weaker). It may be helpful to read my booklet How Do I Know You? and Gone From My Sight. I know it is hard to be with a mother whose behavior you no longer know or who knows you. Have you contacted your local Alzheimer’s association? Join one of their support groups. You and your sister need guidance and support during this challenging time. If you have questions please contact me. Use my personal email Barbara@bkbooks.com. My blessings are with you and your family. Barbara
Theresa Allen
Hi Barbara, My mother has dementia and is in a home.One of the nurses that has become close to my sister and I says she is getting worried about our mom,Patty.Said she refuses to eat and they keep trying to get her to eat.Said she is only now eating about 25 per cent.She is very aggressive to the aides and nurses.She keeps telling us she is scared and holds on to our hands and the staff also till her grip starts to hurt us.She can not walk due to a fall and broke her hip.Her left foot turns in and P.T. does not help.She sits in her wheelchair all the time.Hates to go to bed all tho now they have been putting her to bed as she has a bad sore top of her butt.Called in skin doctor,finally and going to try different cream on her.She keeps begging me and my sister to please kill her while crying.It is so hard to watch.She just turned 88 years old.Do you think she is near death or not.She can not communicate with us when we ask her for instance when she says she is scared.No response when we ask her what she is scared of. Talks real low like a baby and sometimes we can not understand what she is saying.Then tells us to leave her alone and she wants her other daughters there instead.She has no other daughters.Just us.Please some kind words back very appreciated..Thank you and God Bless..Theresa
Hi Barbara, My mother has dementia and is in a home.One of the nurses that has become close to my sister and I says she is getting worried about our mom,Patty.Said she refuses to eat and they keep trying to get her to eat.Said she is only now eating about 25 per cent.She is very aggressive to the aides and nurses.She keeps telling us she is scared and holds on to our hands and the staff also till her grip starts to hurt us.She can not walk due to a fall and broke her hip.Her left foot turns in and P.T. does not help.She sits in her wheelchair all the time.Hates to go to bed all tho now they have been putting her to bed as she has a bad sore top of her butt.Called in skin doctor,finally and going to try different cream on her.She keeps begging me and my sister to please kill her while crying.It is so hard to watch.She just turned 88 years old.Do you think she is near death or not.She can not communicate with us when we ask her for instance when she says she is scared.No response when we ask her what she is scared of. Talks real low like a baby and sometimes we can not understand what she is saying.Then tells us to leave her alone and she wants her other daughters there instead.She has no other daughters.Just us.Please some kind words back very appreciated..Thank you and God Bless..Theresa
Barbara
Hi Barbara, about your wondering what to expect regarding your mother’s behavior change: End of life is so challenging to predict when dementia is part of the disease. How much a person is eating is generally the only gauge that is in anyway predictable. Your mother’s food intake sounds like she is not taking enough calories to maintain her body — that begins the dying process. Sleeping with her eyes partially open is also a sign that alerts me, although not always, when dementia is involved. The red patches on her skin, if they are in areas that are against the sheets on the bed can be the beginning of pressure sores and need to be addressed by your hospice nurse. The rapid decline can be from a variety of possibilities but I do not have enough of her history to have an opinion. Sometimes when a person, even with dementia, can no longer be active they decline and let go of their bodies. This may be what is happening with your mom. Love her, spend time with her. You have been given a gift, a gift of time. My blessings are with you both. Barbara
Hi Barbara, about your wondering what to expect regarding your mother’s behavior change: End of life is so challenging to predict when dementia is part of the disease. How much a person is eating is generally the only gauge that is in anyway predictable. Your mother’s food intake sounds like she is not taking enough calories to maintain her body — that begins the dying process. Sleeping with her eyes partially open is also a sign that alerts me, although not always, when dementia is involved. The red patches on her skin, if they are in areas that are against the sheets on the bed can be the beginning of pressure sores and need to be addressed by your hospice nurse. The rapid decline can be from a variety of possibilities but I do not have enough of her history to have an opinion. Sometimes when a person, even with dementia, can no longer be active they decline and let go of their bodies. This may be what is happening with your mom. Love her, spend time with her. You have been given a gift, a gift of time. My blessings are with you both. Barbara
Barb
Hi Barbara, My mother was admitted to Hospice at the end of May. After four falls in one week – and four trips to the emergency room – she ended up with a compression fracture in her back and finally hospitalized. She was diagnosed with dementia many years ago and lived in an semi assisted community until the falls occurred. She is currently living in an adult family home completely bed ridden. Some days she knows me, others not. Her speech is really slow and difficult to understand. She is still eating a small amount everyday, but looks like skin and bones. She is beginning to get red patches on her skin. The last few days she appears to be sleeping with her eyes open, sometimes smiling and laughing softly. Her eye, and body movements are very slow. It is heart wrenching to witness.
What amazed me was how quickly she went from basically independent to completely helpless, seemingly overnight. Is that common? I’m wondering what I can expect to see going forward?
I appreciate any insight you might be able to give me.
Thank you,
Barb
Hi Barbara, My mother was admitted to Hospice at the end of May. After four falls in one week – and four trips to the emergency room – she ended up with a compression fracture in her back and finally hospitalized. She was diagnosed with dementia many years ago and lived in an semi assisted community until the falls occurred. She is currently living in an adult family home completely bed ridden. Some days she knows me, others not. Her speech is really slow and difficult to understand. She is still eating a small amount everyday, but looks like skin and bones. She is beginning to get red patches on her skin. The last few days she appears to be sleeping with her eyes open, sometimes smiling and laughing softly. Her eye, and body movements are very slow. It is heart wrenching to witness.
What amazed me was how quickly she went from basically independent to completely helpless, seemingly overnight. Is that common? I’m wondering what I can expect to see going forward?
I appreciate any insight you might be able to give me.
Thank you,
Barb
Barbara
Hi Lisa, As you know first hand living and caring for someone with dementia is exhausting and heartbreaking. The not knowing (since there seems to be no hard and fast guidelines that the disease follows) makes all this even more difficult. I don’t know if your grandfather has entered the actual dying process yet. He will but now it is hard to tell. Watch his weight loss for a steady decline. With dementia the only indication that a person has entered the dying process is not eating enough calories to maintain the body. I would think 2 bowls of cereal is not enough but how much does he weigh now? Does he have body fat to draw from? These are things that affect not eating. I can say that from what you have told me we are not looking at weeks (unless something happens not related to dementia) and it could be many, many months. You might find my booklet How Do I Know You? helpful. https://bkbooks.com/collections/all-products/products/how-do-i-know-you-dementia-at-the-end-of-life
I know how difficult this is. My blessings and thoughts are with you. Don’t hesitate to reach out to me anytime. barbara@bkbooks.com
Hi Lisa, As you know first hand living and caring for someone with dementia is exhausting and heartbreaking. The not knowing (since there seems to be no hard and fast guidelines that the disease follows) makes all this even more difficult. I don’t know if your grandfather has entered the actual dying process yet. He will but now it is hard to tell. Watch his weight loss for a steady decline. With dementia the only indication that a person has entered the dying process is not eating enough calories to maintain the body. I would think 2 bowls of cereal is not enough but how much does he weigh now? Does he have body fat to draw from? These are things that affect not eating. I can say that from what you have told me we are not looking at weeks (unless something happens not related to dementia) and it could be many, many months. You might find my booklet How Do I Know You? helpful. https://bkbooks.com/collections/all-products/products/how-do-i-know-you-dementia-at-the-end-of-life
I know how difficult this is. My blessings and thoughts are with you. Don’t hesitate to reach out to me anytime. barbara@bkbooks.com
Lisa mcnab
Hi my grandad has vascular dementia think he’s had it about 4 years not too sure he is 86 years old, he now has lost so much weight, having maybe 2 bowls of Cereal in a 24 hour period and not drinking really anything, he can talk but not good maybe just a couple of words but he also feel like he’s struggling for breath although he says he’s not, do you think he is in the dying process , this disease is horrible as you don’t know what is coming next would be nice just to have a bit more insight as too how far along he is please help me :(
Hi my grandad has vascular dementia think he’s had it about 4 years not too sure he is 86 years old, he now has lost so much weight, having maybe 2 bowls of Cereal in a 24 hour period and not drinking really anything, he can talk but not good maybe just a couple of words but he also feel like he’s struggling for breath although he says he’s not, do you think he is in the dying process , this disease is horrible as you don’t know what is coming next would be nice just to have a bit more insight as too how far along he is please help me :(