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.
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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
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.
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
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
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 …
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