Expert: Mary Gordon - 10/23/2008

Question
Hi Mary,

Like any Alzheimer's patient, my father has his own personal problems that seem to make the disease even worse.  He is a World War 2 veteran, and was diagnosed with paranoia schizophrenia after the war... so perhaps you can imagine how he gets at sundown.

One of the biggest problems is that he is constantly restless, and always wants to go somewhere at all times of the day.  He asks for a key to the car, and when we remind him he doesn't drive, he becomes very defiant and angry.  He used to go out the front door when no one was watching and hitch a ride up to the church.  So we put a tricky lock on the front door, but now there's another problem.  When he tries to open the door, he'll realize he can't and ask one of us to open it for him.  If we dare ask why he needs to go outside, he'll get angry and say he doesn't need to tell us why.  I've tried suggesting other things for him to do, and occasionally they'll work as a distraction but after he's finished with that activity he will try to go out the front door again.  Sometimes I will tell him I can't open the door for him, and he'll ask why not.  Of course I can't tell him the truth, but I can never come up with a believable answer as to why the door must remain locked.   
I think it might be partially because of his schizophrenia that he gets so obsessed with things.  As soon as he knows he can't get out the door, he won't stop demanding that someone let him out.

We used to take him out so he would maybe calm down, but these days he can't sit down and get up easily and he also has a bladder problem and wets his pants several times a day (he absolutely refuses to wear Depends.)  We still take him to church a few times a week, but later in the day he'll forget he went and demand that someone take him again.  

I know that when spoken to calmly, he reacts much better and is less demanding and defiant.  However, if he is obsessing over something it seems there's no way you can get him to take his mind off of it, no matter what you offer him instead.  I was wondering if you knew of any way to keep him from being so restless and from trying to get out the door every second of the day.  

Thank you so much for your help... any advice would be really helpful.

-Agnes

Answer
Hi Agnes,

Here is a link to a really long but GREAT article about what happens to a person with Alzheimer's - and it both describes what their experience is like, and give lots of tips and insights into ways to manage.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

I'd also like to suggest you buy a book called the 36 Hour Day, by Mace and Rabin, published by Warner. Its in softback, so its inexpensive, and if you only buy one book, this is the one. We pretty much wore out our copy of an earlier edition.
http://www.amazon.com/36-Hour-Day-Alzheimer-Dementing-Illnesses/dp/0446610410

It might be time to talk to the doctor about meds for the agitation. I'm not suggesting that you want to sedate him into zombyhood, but there are meds that can make him calmer. Not only must being so keyed up be miserable for him, it makes things harder for your family as caregivers. Sometimes antipsychotics or antidepressants can really help settle the person down, so they aren't so anxious and angry.

I don't think what you are seeing is from his past history of schizophrenia - most people with AD with no history like your dad get exactly  the same symptoms you are describing. as I think you'll see when you read the article.

The urinary incontinence will get worse, and be followed by fecal incontinence. Its like they totally forget what the sensation of needing the bathroom means,. They also seem to forget what they are supposed to do about it - it requires knowing what the feeling means, knowing where the bathroom is, being able to take your own pants down, etc. etc. Lots of separate actions in a particular order. There isn't much you can do about it. Eventually, he will be more docile, and might be agreeable to "Depends".

Below my signature, I've pasted the last two stages of AD, so you can get a feel for where he is - I'd say he was in Stage 6.

Since he clearly has a propensity to wander and is still mobile, I'd be considering back ups to the "tricky" locks, such as ironing labels into his clothing with family contact information (in case he does get out and get lost, and can't tell anywhere where he lives or who to call. Find out if there is a "safe return" program in your area
http://alzheimers.about.com/od/givingsupport/a/safe_return.htm

I'd also look into some sort of wander guard - often a bracelet or necklace that sets off an alarm if he does go out the door, or an alarm on the door itself, just in case he manages to escape when you are occupied otherwise.

I won't lie to you - things will get much more difficult from here on in - both physically in and emotionally as a caregiver. I hope you have lots of support, and are doing some homework about alternatives down the road. He needs his family healthy and well, not stressed out to the max!

See his doctor (who hopefully knows something about dementia and behavior issues from agitation) and see if he or she can suggest some meds that might help everyone. You might have to try a couple before you find something that might help. Its worth trying, since the agitation can lead to catastrophic reactions (kind of like an adult tantrum), and it can be dangerous if he is a large man. Behavioral issues like agitation combined with incontinence are the two big reasons families start to really have trouble coping with the person in a home environment - so anything that can make him feel happier, and make your job less stressful is worth a try.

Thinking of you

Mary G.   

(Below is from Dr. Reisberg's description of the stages of AD, first published in 1982, and still the most common set in use).

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