AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Mary,
We moved my mother into an Alzheimer's nursing home at the beginning of August. At first she thrived and seemed to actually be getting physically stronger and mentally more alert. However, in the past two weeks she has totally lost the ability to walk/help transfer herself, is wearing adult diapers, sleeping more and eating much less. Today, after having not visited in a week due to illness, I found her no longer able to sit up or hold her head up. I coaxed her into eating about 20% of her dinner, which included 8oz of Ensure. She barely spoke and showed no interest in doing so or in trying to hold her head up. In a strange moment, she asked my 22 year old son if his girlfriend was pregnant. I am not sure what she thought she heard. When the staff and I got her back to her room, she told us several times that we were so nice to her and that she loved us. I'm not sure she knew at that point who we were. Mostly, during the last hour we were there, she slept, even though it was just 7:30 p.m.. This was after having been in bed until 3 p.m. that day.
After doing a lot of reading it seems like this is the beginning of the end, which is very hard to digest. My question is, does it appear this way to you? I know you can't tell us how much longer she will live (and I am not sure I really want to knwo that), but is there some way to predict, guess, or anticipate the end?
Thank you so much for your time and help.
Connie
Answer Hi Connie, any time there is a precipitous decline like this, something has happened other than the progress of the illness. My first thought would be some undiagnosed infection, like a UTI. It seems counterintuitive, but the very smallest thing can throw them almost into a stupor. It's like they are just holding on with their fingernails and trying their very best with what they have left - and an infection that might make you or I feel a bit off or sleepy or out of it - will make them appear dramatically worse on the cognitive front.
UTIs are a very common culprit, and often go undiagnosed. The elderly may not show any symptoms at all, other than the dramatic change in cognition and behavior.
Other possibilities - other illness that hasn't been detected, or even a small stroke. It's entirely possible to have a real constellation of health problems ganging up in the frail elderly, particularly those with existing dementia. Alzheimer's itself is generally pretty slow and steady - it doesn't routinely take big leaps like this on its own. Having said that, she may be entering a spiral - but my first assumption would be from something other than straight forward Alzheimer's.
Below my signature I've pasted the description of the last two stages - these are from Dr. Reisberg's functional assessment staging or FAST, which are the most commonly used set of "stage" descriptions.
As you can see, it normally goes (over an extended time of many months and even a couple of years) continence, speech, walking, sitting up, head control. That she can still talk, and has taken a leapfrog to such weakness so fast is very suspicious - the doctor or nurse practitioner should be really checking her out to figure this out.
My mother in law died from end stage AD, and she took a leap down from a fall - so for her, the end of walking (from a broken hip on a carpeted floor) led to incontinence (if you can't walk, you can't get yourself to the toilet). Surgery for the hip and the general anesthesia also really knocked her back mentally. Her speech went about four months after the fall. After that, it was a very slow and gentle failing over 18 months or so - she got less and less alert, ate less and less despite coaxing. The spiral was predictable - she got weaker and thinner and frailer, she slept more and more, she was less and less aware of where she was, or who was with her - they become more susceptible to infections. It's not a kind ending to a good life. Finally, they stop eating and drinking (which doesn't seem to cause them any discomfort or distress), lapse into a coma and pass away. I know this is an awful prospect - but my mother in law's last days seemed very comfortable and peaceful. We were the ones who were suffering, just because there was so little we could do for her other than sit by her side.
Hope this helps. I'd be asking about the possibility of an undetected infection as a first step.
Mary G.
Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall
their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may
continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost
