End-of-life care is a critical part of client-centered care. Learn the three signs of when your clients are approaching death.
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). There are three signposts that indicate the dying process has begun:
These three things are on a continuum, gradually beginning in months before death and going right up to the moment of death.
Signs 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.
Death and appetite
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.
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. Make sure that you are prepared and have the right training so that the process goes as smoothly and comfortably as possible.
Is it normal for a person with Alzheimer’s to feel very tired all the time inspite of sleeping well
Hi Rose. It can be very normal for patients diagnosed with Alzheimer’s Disease to have more fatigue or seem like they are sleeping more hours of the night and day. The body definitely has a different clock of sorts as symptoms change with any disease process. As long as you know that there is not another reason for the fatigue, like a urinary tract infection or an actual concern that can be resolved, it is okay. Adjusting to plan activities and meal times during the most wakeful “good” hours is a process and constantly adapting will be important if that clock changes again. Best of luck to you!
Absolutely
My son is only 52 and his Alzheimer’s started 2 and a half years ago. He is already having trouble dressing and showering by himself. He has to have his food cut up. Sometimes he barely gets to the toilet in time. Do younger people Alzheimer’s advance faster than older persons?
Thank you.
Hi Eve. It sounds like you are very dedicated to helping in the care of your son. Alzheimer’s Disease can advance at varying levels, depends on when a patient is diagnosed and what other conditions that they may have which also can contribute to cognitive issues. Your son is young and for Alzheimer’s to be diagnosed at a younger age, it means the signs were clearly more prevalent and the disease is considered “early onset.” Perhaps because of the younger, usually highly functioning age group of your son, the common Alzheimer’s symptoms stand out more. It is hard to say if an age group advances faster or differently than another because the disease itself can be different in the individual. The Alzheimer’s Association at https://www.alz.org has great information on current research studies and special populations that might be interesting for you to look at. They also have a great online support group option, ALZ Connected at https://www.alzconnected.org. Sometimes finding support groups locally or even remotely can help you find people experiencing similar circumstances and it might help you process everything in a different way. Good luck to you and your son.
My mom is 93 with dementia (last stage). She went from sleeping a lot,confusion,not eating as much to being bubbly and good spirits,eating well but now she isn’t talking. Has the dying process started?
Hi Karyn. It is hard to make a determination on your Mom in this kind of setting, and not knowing her medical history. Dementia symptoms can certainly change and seem to become worse and then better and back again. It can be a roller coaster of emotions for everyone involved. I urge you to reach out to your Mom’s medical team and ask questions about her diagnosis, firm up her end-of-life plans generally, and just make sure you are prepared as much as possible for when the time does come. Remember that no question is ever a bad question and trying to understand a dementia prognosis can be challenging for everyone involved. Everyone’s dying process looks a little different as well, but Barbara Karnes has dedicated her life to helping folks work through that part of life, she has some great resources linked in the article. Best wishes to you and your family on this journey.
My 86 year old mother-in-law has some form of dementia (undiagnosed) but also multiple myeloma, which had just started coming back six months ago after being in remission. Since she is on hospice, they will not do any diagnostics, so we have no idea how her cancer and dementia are progressing other than by her reported symptoms. There have been several times in the past months where she has slept all day, refused to eat, was too weak to walk or even feed herself, and was basically unresponsive. At that point the hospice team and assisted living staff felt that she was “transitioning”. We prepared ourselves for her imminent passing. Then a few days later, she is up, walking with a walker, going to meals and eating, etc. This has happened several times and it has been such an emotional roller coaster. Is this normal? Thank you for your input.
My mom has late stage vascular dementia. More recently she’s become non verbal, sleeps more, eats much less (she’s been on a pureed food diet due to trouble swallowing and because she pockets food). She cries intermittently for no apparent reason. She appears much more frail and weak and confused now. Are these signs death is close? If so, how long might she have?
I have learned a lot reading this ,it’s been a good help to me.
today I learned that my father has stage 3 dementia. He is unable to bend over and has issues going to the restroom in his pants. he has been in and out of the hospital and they said he took a turn for the worst and doesn’t expect to live long. I have been searching for info on this disease and have not been able to find information. can someone help me understand the stages and how it begins?