Understanding the Problem

In the article below, Lou Wilkinson, a wife, mother, artist, and teacher, insightfully describes how HD affects her ability to start and complete household chores.

I no longer work and for the life of me I can't make myself do the things around the house that I know I am capable of doing. If I have any energy, I go out, housework is such a chore - I think of things that have to be done and I get overwhelmed by it all.

It's very hard for me to chunk up my jobs so that I only have to do one little thing - I try to say that today I'll just clean one bathroom but it just doesn't work like that. I have every good intention but when it does enter my mind, the initiation of the action often just isn't there or I get distracted with another thought and it's gone out of my mind.

Some days, my legs feel weak and just walking around the house takes effort - I'm not that far along in the disease either. If my husband is here and he gets me started on something I can do it. Sometimes the thought hits me in the middle of the night and I can't get back to sleep even with sleeping pills - so I get up and do something. The trick is for me, getting the thought and the initiation happening at the same time and there isn't any way for a person with HD to force that or to control it.

I know it's frustrating for people who live with us and I know I'd be damned mad about it but they really cannot help it. That is the challenge for caretakers - to come to accept that fact - that the person isn't just being lazy. I'm not a lazy person - some things just come easier for me and some things stick around because they were things that I liked to do before - like being on the computer. Once I get on here, it's self-driven, one thing naturally leads to another.

For example - here are the steps involved in taking out the garbage and how the mind has to sustain both the thought and the effort and the action:

1. thought - take out the garbage
2. actions
   • get up,
   • go to the kitchen one foot in front of the other,
   • watch out for doorways and things on the floor,
   • open the cupboard door,
   • reach in,
   • stuff the stuff down,
   • pull the bag out,
   • lift it up,
   • tie a knot in it or look for a twist tie while holding the bag (multi-tasking),
   • tie the bag,
   • put it on the
   • floor,
   • get out a new bag
   • place it in the container,
   • close the cupboard door,
   • pick up the garbage and take it outside - one step in front of the other again.

Now, you may be laughing at how simple this is and how exaggerated I am making it but in a Phd's mind, everything is exaggerated like this and the whole process is conscious, not automatic like it used to be. Not all the time you understand but it gets more and more like this the farther along a person becomes. Just getting up becomes an effort so you see if all of this runs through a person's mind, taking out the garbage does require a lot of effort. People without HD just don't have to think about it.

If the thought gets to our brains at all - I mean through to the cerebral cortex, it may not be organized enough to come back out as the right action, instead something else may come out and the person will do something else.

A Response to a Tough Question

Lou wrote this as a response to someone basically asking where her later stage father went.

You must understand that he isn't hiding - his brain just isn't registering things. Even if he gets the thought to help, he may be unable to initiate the action or it may seem like an insurmountable task. My uncle is the same way, he just sits there unless you practically go up and say come on, we're going here or let's play cards. If it doesn't get through, he can't make himself - it's not procrastination, it's just not connected brain synapses. Don't be too hard on him, he's the same man, just terribly disjointed in the brain and his cerebral cortex just isn't sending out the right messages.

I know it's difficult and I even finding myself getting frustrated at myself when I don't do things I know I'm supposed to - I just sit there and can't move or don't even think I have to move. All smoke and no fire.

Also it's no good asking him to do something one day and expecting him to be up for it the next day - he won't recall what you said or he said - I asked my uncle if he'd like to go to retired/physio water exercise one day an he said yes. the next time I mentioned it he had no idea we had even talked about it and I do the same thing - my husband gets pretty frustrated too!

Just take baby steps with him - and don't give up - the more you ask him to do one thing - all of a sudden one day, they mention it and want to do it as if it were their own idea to begin with! Works for me.

Publications

Two good sources of information about dealing with apathy and difficulty in initiation (as well as other HD issues) are:

Understanding Behavior in Huntington's Disease: A Practical Guide for Individuals, Families, and Professionals Coping with HD by Jane S. Paulsen, Ph.D.

And A Physician's Guide to the Management of Huntington's Disease (2nd Edition) by Adam Rosenblatt, M.D., Neal G. Ranen, M.D., Martha A. Nance, M.D., and Jane S. Paulsen, Ph.D., HDSA, 1999.

Both are available from the Huntington's Disease Society of America from their Web site at https://www.nyic.com/hdsa/edu/edu.pl?orderform.

Suggestions from these sources and from Phds and caregivers themselves include:

• Discuss with the person's doctor whether depression might be causing apathy.
• Understand that the individual is not 'lazy.'
• Start the activity along with the individual.
• Help them assemble everything they will need for the task they want to do.
• Routine is very important to people with HD; incorporate changing activities into the schedule, ie. going out to lunch on Saturday, etc.
• Schedule the new activity and put it on the calendar.
• Talk about planned activities on several occasions before beginning them to prepare the individual.
• Accept refusals; sometimes an individual, with HD or not, would rather relax at home.