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!
Expert: Mary Gordon Date: 5/11/2008 Subject: Mom with AD
Question Hi Mary: My mom is currently in the hospital. The team of doctors is having difficulty finding the reasons for her symptoms. She has lived with me for 5 months and was in a senior community prior. She was diagnosed with AD about 6 years ago. But until fairly recently, was doing okay. Alittle forgetful, etc., but basically okay. She has had several falls as of late and states that she can't make her feet do what she wants them to do. She knows us. She is confused about time of year. She hears telephones ringing during the night - which don't ring. She has trouble eating/breathing at the same time. Her white count is elevated and no one knows why. She has had no appetite for a year, but the doctor has given her something for that. Without that medication, she would definitely have trouble keeping her pants up as her weight plummets rapidly.
She has spells where she sweats excessively and will spike a heartrate of 180 = 200. She is very susceptible to lung problems and has been hospitalized twice with that just this year. The doctor has said that she has Diastolic Heart Failure. He DOES NOT KNOW why her white count is high and does not know what is causing the sweating and rapid heart. She cannot sit upright anymore as she leans to the right. I thought she had hurt her back in a fall, but does AD cause people to lose control of their ability to sit and stand as she also no longer has the energy to walk. Also, does AD move very rapidly from intermediate to end stage? Do you think that the sweats and heart rate increase are caused by AD? I have watched her very rapid decline for several months and I think that if she were not taking the medication to improve her appetite, she might not even be here. Heres the kicker, she knows me almost all of the time.
And once in a while she can carry on a conversation. She however, can not tell me if she feels good or bad "How am I supposed to know" is always her answer.
Any suggestions? I love her dearly, but do not want her to suffer any longer than she has too. Do you think I should stop the appetite medication? Can an end stage AD patient have good days? HELP
Answer Hi Jeanne, below my signature I've pasted the stages of Alzheimers - the most commonly used set, developed by Dr. Reisberg back in 1982. Its sometimes called the FAST scale (Functional Assessment Staging).
She's not into Stage 7, which is the end stage. From what you describe, she's more likely in Stage 6.
Alzheimer's doesn't just impact memory, but causes global brain damage. The person's muscular coordination is affected - which means not just moving their legs, but also their ability to balance, chewing, swallowing, their fine coordination in their fingers - everything. So yes, losing the ability to walk is part of the disease, as is the leaning, the falls etc.
As you may know, there are many causes of dementia - Alzheimer's is just one. It is also possible for a person to have more than one cause happening at the same time - such as Alzheimer's, Parkinson's, mini-strokes etc. The fact that she is self aware still is a little unusual, but that doesn't mean that anything can be done.
Obviously she has a constellation of problems - the congestive heart failure (which diastolic heart failure is a form of), the sweats and rapid heart rate, the elevated white count. These things are not caused by the dementia. Other health issues like infections etc. will impact her mental status though - for example, urinary tract infections can dramatically impact cognition - almost causing a delirium, which will improve on treatment. Something is definitely going on - I presume they've looked at her endocrine function to rule out thyroid and adrenal function problems.
Loss of appetite and weight loss are a routine part of many dementias. Food looses its taste (they often lose their sense of smell early in the illness), and they also have a lot of trouble chewing and swallowing - plus quite often, their feelings of hunger or thirst seem to be impaired. A good plan of attack is to make every mouthful count - if she will only eat small amounts, give her more frequent meals, of high calorie, high nutrient foods. You can even hide extra calories by enriching foods with butter or cream. Some people will eat more in the morning than in the rest of the day, so sometimes throwing out traditional breakfast foods in favor of something richer may be a plan (if she'll eat rich custards, puddings, or dinner foods, go for it!). As I'm sure you've tried - there are drinks like Boost, Gain and Ensure. Its not common for appetite stimulants to be prescribed. Have you read over the potential side effects of whatever she's taking to see if that medication could be contributing to some of her current symptoms? Her heart problems alone can cause weakness, and loss of appetite in some people. She will eventually need soft foods, as she will not be able to chew properly, and will be prone to choking. That may already be happening, as you mention she has trouble breathing and eating at the same time (the problem is called dysphagia). Eventually, she will need careful hand feeding because she will not be able to feed herself.
Loss of the ability to understand language is part of dementia as well. Eventually, she will lose speech entirely. My mother in law stopped talking about two years before she died, and after that point, only came out with garble, with a very occasional intelligible word or phrase. Prior to that point, by Stage 6, she couldn't answer questions - sometimes she would try and get into a loopy shaggy dog answer that went on and on, made little sense, and didn't answer the actual question. A question that required a simple yes or no was all that she could handle, and after a point, even that was gone.
Fluctuations in cognition are also common - they tend to be at their best when they are rested, fed, relaxed and feeling good - so they may be fine early in the day, but not so good mentally by end of day, or they can have a good day one day and be out of the next. Delusions and hallucinations are not uncommon. My mother in law, for example, got it in her head in Stage 5 that people on TV could see, hear and converse with her. Nothing would shake that idea. She also reported that people in the next room to her were having midnight arguments - despite the fact that she lived at the end of the hall, and there was no room next to her where she insisted the fighting was occurring. She also reported to us that a lady who sat at her table was making cruel remarks to her, specifically about family members and events the lady could not have known anything about - never mind that my mother in law was very deaf. She would also report conversations and visits she'd had with people who were long dead. You have to wonder if they are dreaming and can't tell the difference between the dream and being awake. Frontal lobe damage can also produce very vibrant visual and auditory hallucinations that seem real to the person - like her insistance she can hear a telephone ringing.
She may have some time yet to live - my mother in law lived two years after she lost her ability to walk and talk. She was completely helpless like a small baby. However, she did not have your mother's other health issues, which could in a way be a merciful thing, and keep your mother from living right into the bitter end of Alzheimers. At that stage, its brutal - they essentially are unresponsive, and stop eating and drinking, and die from starvation or dehydration - they just shut down.
You will have to have a good talk with the doctors, and what they think is going on. You have some serious thinking to do, and a frank discussion with her health care providers will help, as would discussing end of life issues with other family members who may be involved, or with any religious counsel your family may rely on. This is not just about whether to discontinue her appetite medication. At what point will you opt for palliative care? At what point would you want her treated only for pain and discomfort, and stop everything else? If she developed a crisis would you want her rescusitated? Taken to the emergency ward? Given an IV, tubes, oxygen, other medications? Are there some instances where you want a problem treated, and others not? For example, you may decide you would treat a UTI which would cause discomfort but not threaten her life, but if she develops a serious pneumonia, you may decide to let nature take its course.
I know these may seem like cruel questions involving unthinkable situations, but there are things to consider that will likely arise over the next months and potentially - years. Where you live what are the rules around qualifying for hospice? In some places, the person has to no longer be able to hold their head up. I know this is heart breaking for you, and its so hard to endure seeing what is happening to her.
I hope they get some answers for you soon. No one deserves what she is going through, but it is what it is, and you are doing all the right things thinking about her best interests.
Mary G.
Stages of Alzheimers
In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.
Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982
Level 1
No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.
Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.
Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Deficits noticed in demanding employment situations.
Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.
Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.
Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
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 orient in 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 resent.
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
