Expert: Mary Gordon - 1/10/2009

Question
Since my fathers death 2 months ago, I have seen an abrupt decline in my mothers behavior.  She had moments, but seemed stable.  Now she has become unpredictable--she has forgotten what to do in the bathroom.  She is still continent, but does not know what to use to wipe with--sometimes it is my face towels, sometimes it is the shower curtain, and she has even stuffed feces down my air vent.  She puts her dirty clothes back in her clean clothes drawer and has forgotten how to speak English--her native language is Greek, and she thinks that everyone understands her.  She needs to be told to brush her teeth, and shown how to put the toothpasete on the brush or she will completely not use it.  She has brushed her hair with other peoples toothbrushes.  I have dealt with these changes by accompnying her to the bathroom and makeing sure she does things correctly.  Since I work fulltime, I cannot assist at all times, so I have a full time aide living with us during the week.  She is very resentful of the aide helping her in the bathroom, and has become combative toward her.  What can I do to make her understand that she needs assistance in the bathroom and with hygiene at all times?

Answer
Irene, I think in your gut you probably already know the answer to this one. She has Alzheimer's disease, so she has a relentlessly progressive, incurable, irreversible disease that causes global brain damage. Right now is as good as it gets, and from here, it gets worse - much worse. I wish there was something else I could tell you. You are standing past the crest of the hill looking down.

You cannot do anything to convince her she needs help. Not only is she losing her understanding of hygiene - what to do, why she needs to do it, the impacts on her health or the people around her of NOT doing it - but she has no self insight. What is readily apparent to you, she cannot see. She will not see the dirt on clothing or herself. She cannot smell herself (an impaired sense of smell is actually an early symptom). She is losing her sense of social niceties.

My mother in law did very similar things. She went through a phase of putting used toilet paper into the waste paper basket - which was awful - you can imagine the smell and the mess. Then she started doing what you describe your mother doing - using anything available instead of toilet paper, such as towels, her cardigan, other items of clothing. She had a vague idea that feces was disgusting, so after she'd soiled an item (or had a toileting accident), instead of putting it into the laundry, she'd hide it. We had to search her room and wardrobe constantly as we'd find dirty things rolled into balls and stuffed into the pockets of her coat, in the toe of a boot, the back of a drawer, in a purse or suitcase etc.

I've also heard of people hiding feces in various places before. Just recently I had a question from another person whose loved one was wrapping it in toilet paper and hiding it in various places around the home.

There was nothing we could do to persuade my mother in law to do anything different. Even if we had succeeded in getting through to her, she would have forgotten the conversation in two minutes. Your mother is living in the eternal NOW. She may still remember things long past, but she can't recall what happened just a few minutes ago. Her ability to form and retain new memories is gone, along with her judgement and ability to reason.

Sadly, your mother needs support and supervision with all bathroom activities, and just can't be trusted to do any of it on her own. She's being deconstructed by her brain damage. She's like a toddler in the bathroom now - she needs guidance for every step. And as you have observed, you never know what she might do if she's on her own. You might want to consider putting away anything in the bathroom that she might try to use inappropriately, such as cleansers, medications etc. or anything she might try and put in the toilet (a family friend at this stage flushed some very valuable jewelry down the toilet).  Very sadly, incontinence is not far away.

Your mother's lack of self insight (which is part of the disease), also means she doesn't believe she needs help - in her reality, she's perfectly competent, just as she has been all her adult life.  If she has always been a private person, she may have a hard time accepting assistance. After all, most of us have learned from early childhood that what we do in the bathroom is deeply personal and private.

My mother in law used to claim she had taken baths when she hadn't - after all, she had had a regular routine, so even if she couldn't remember, she thought she MUST have taken her regular bath, and she was quite insulted when we suggested she hadn't, or worse, that she needed one.  She also couldn't tell when her clothing needed changing.  I can recall her being VERY upset with me when I'd go through her closet and take things away to wash them.  Some of her clothing would be absolutely filthy - just covered with food and dirt, but she couldn't see it, and she would insist they were clean and I was being silly. Same goes for dirt in her apartment - she had been quite fastidious, and all of a sudden, the dirty floor, the greasy sink, the stains on the sheets - she just couldn't see them for herself any more.

Trouble with sequences is something that turns up early for people with Alzheimer's. They start having a lot of difficulty with tasks that require doing a number of things in a specific sequence, such as your example of putting the toothpaste on the brush, and then brushing your teeth. Think about taking a bath. It requires doing quite a long list of separate things that require a number of skills - and each action must be done in a particular order. We take all of it for granted with our intact brains. If you deconstruct taking a bath, you need to realize you need one and form the intent to take one. You need to know you require a towel and a flannel/wash cloth, soap, shampoo. You have to know how to put the stopper in the tub, turn the water on and adjust the temperature. You need to know when to turn the water off. You have to take your clothing off, and step into the water....and on and on. Its overwhelming and confusing for them, and they start to avoid it like the plague.

The brain damage can also mean the person's internal temperature controls are confused, and their interpretation of sensations. They can find being naked very upsetting. The air can feel too cold and the water too hot. They can be frightened of their own reflection in the mirror. A shower may feel like needles on their skin. Stepping into a tub may be terrifying since their depth perception is impaired. The net result is the combatative reaction - which is sometimes called a catastrophic reaction. It happens when things get too much for the person, and they snap - kind of like a toddler tantrum, except that its a grown woman.

Since you can't change her, you and her aide might have to change your approach.  Try scheduling bathing and hygiene activities for when she is at her cognitive best - when she is relaxed, rested, and fed so there are no stressors.  Watch for signs of stress, and see if you can eliminate them (i.e. what seems to get her upset).  Here are some good suggestions.
http://www.alzheimer.ca/english/care/dailyliving-bathing.htm

This web site has some very good tips that may be helpful to your hired aide in how to approach your mother. It is aimed at hospital staff, but that doesn't change how useful the ideas are.

http://www.nia.nih.gov/Alzheimers/Publications/acute.htm

Below my signature I've pasted descriptions of Reisberg's Stage 5, 6 and 7 (his are the most freqently used set of stage definitions).  As you can see, your poor mother is likely at 6c.

I know this is hard - there just is nothing a horrible to deal with than what goes with a progressive dementia in someone you love. It's stressful and it's heart breaking - and every time you think it can't get worse, it does. Hang in there, you are not alone. Even though your mother is in a mid-later stage of the illness you may find this article quite helpful in understanding what your mother is experiencing and behaviours you may be seeing - its long (60 plus pages), but it's remarkably good.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...  

Hope this helps a bit. Feel free to come back and ask any question at all, or for better clarification on any subject you need some support on.

Mary G.

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 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