Expert: Mary Gordon - 10/28/2004

Question
Dear Mary,

Number one Iam sorry for your loss. My question is
my 80 year old mom lives with me now and she is as
unpredictable as can be. from telling stories that
never happened to violent outburst of yelling and
smacking what ever is in her way or just because
she feels like it. I keep a journal of her daily
activeties and her food intake. She now is insisting that she has to eat every 90 min, she
sneaks food and hides it all over the place she
wakes up at 3:00 am  to eat and than again at 5:30
am she wants a 7 course meal for breakfast, at 9:30 she wants sweets cookies cake whatever...
11:30 she wants a dinner instead of lunch. she is
getting fatter by the day. When I told her Dr. she told me it's the alzhiemer deal with it or put
her in a nursing home. Needless to say I refuse to go back to her. (Dr.) I will not and can not
put my mom in a home...... NEVER.......  So what
do I do to keep mom from eating herself to death?  

Answer
Nancy

Sometimes a person with dementia may eat far more food than they require. This is due to changes in the brain caused by the condition and is often only a temporary phase - so as upsetting as this is, you have to realize this problem is not going to last forever.

In some cases, overeating is explained by memory loss. The person may completely forget that they have eaten – even if they have just done so. They also lose their sense of time - we certainly noticed this with my mother in law. There were times when someone had left the room for a few minutes, and she would accuse them of being gone for hours. She had no feel for time at all - it could have been  hours since her last meal or minutes and she would have no idea. Sometimes its because the brain damage prevents them from feeling normal hunger - they really can't tell if they should feel like eating or not.

You don't mention what your doctor did to diagnose your mother - I'm hoping she was referred to a specialist and given a full work up to be sure she has AD. There is a form of progressive dementia called Pick's disease which is a frontal lobe dementia and different than Alzheimers that can cause causes oral fixations and overeating in the earlier phases. Just wondering if Pick's was ruled out.

If a person is eating excessive amounts you will want to try to limit their food intake; otherwise, they will be in danger of becoming very uncomfortable after eating or may put on a great deal of weight.

People with dementia often seem to prefer to eat carbohydrates and sweet foods. It may be that their tastes have changed and they find these comforting. However, it is important for a person's health that they eat a balanced diet.

Sometimes people seem compelled to search out and consume any type of food. You will need to be aware if this is a problem because, apart from overeating, the person may eat or drink unsuitable or even dangerous substances - i.e. bars of soap, the flowers on the table. This can happen with Pick's - its almost like an obsessive thing, where they will put almost anything in their mouths.

   * Put anything which you do not wish to be consumed out of sight or out of reach. You may want to put locks on cupboards and the fridge - which will likely be a good idea just for safety anyway, since unsupervised for a minute, she may get into things that she could hurt herself with as she deteriorates.
   * Try to distract the person's attention or find a satisfying activity as a substitute for eating.
   * If the person constantly seeks out food, try to provide non-fattening snacks such as fruit or raw vegetables.

I know this doesn't really help you to deal with a very difficult situation. There are medications that can reduce your mother's agitation, and not only make her a bit calmer and happier, but also make her a bit easier to deal with. They are not like the drugs of years gone by - i.e. they have meds which will settle her down, but not turn her into a zombie.

My heart really goes out to you. I know this is horribly painful for you to watch. A good purchase for you would be a book called the 36 Hour Day, by Mace and Rabin, published by Warner. Its one of the best books I've ever seen for caregivers. It will really help you to understand what is going on with your mom and its full of tips and ideas.

I agree completely you may want to find another doctor. You need someone who is easy to talk to, really experienced with dementias and can support you, and give you good ideas. You also want a doctor who knows what resources are out there so he can steer you to help. He sounds very insensitive and dismissive. There are a lot of things that can help you cope and make things easier before you get to the point where a placement might be contemplated - so it was very rude and presumptive for him to suggest that at this stage. He sounds like a clod.

You need to talk to other people in similar situations - not only will it help you to deal with the stress of what is going on, but it might help you to feel less  alone, and you never know - someone else might have some creative ideas and options to help with whatever problem you are facing. There may be many resources in your community that can make caregiving easier. Have you tried contacting your local Alzheimer's Association? They often have support meetings. We used to go to them, and they DID help us - if nothing else, to vent off steam with others in the same shoes.

I know how strongly you feel about your mother and your commitment to looking after her, but I want you to make me a deal. I want you to put the word "never" away. Instead, say to yourself, I will do the very best I can, and when I can't cope, I will ask for help. The only "never" you can say is...I would never think about doing X Y or Z as long as if things stay the same and I'm doing okay. You have to give yourself permission to think about alternatives as things change - and they WILL change... or you torture yourself with guilt. Right now you can do it all yourself, but that may not always be true. You have to look after yourself as well, since if you get sick from stress and overwork from trying to it all, it won't help either one of you. This disease is no one's fault.  Your mother didn't deserve this  - its unfair for both of you - and sometimes we have to do things we would never have done, had our loved one been well. Your mother will not always like everything you have to do either. You can imagine what my mother in law thought about having to have a housekeeper in the early stages of the disease, never mind other supports in her life. She thought she was fine and we were mean!

This process is a long, slow, horrible slide down a hill, and it may go on for years and years. You can't know know how you may feel or what you and she might face in later stages. You are in early days yet. Below my signature, I have attached a list of the stages of Alzheimer's so you have a feel for what might happen next. For some people, things progress quickly, and for others, it is slow. My MIL was more than 2 years in stage 7.

Your mother is so lucky to have you. She must be so proud of the fine woman you grew up to be. Hang in. Be kind to yourself.

Mary Gordon

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 refer to 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 withdrawl 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 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., paatients 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