Question:

Dear Kathy M.,

My daughter Andrea has a head injury. Andrea came back home after she was discharged from the hospital. She had been attending college, but was not able to live alone after her injury. She is now 33 years old, but our relationship is more that of a mother and irresponsible teenager than it is mother and thirty-year old. Neither one of us likes it much, but it seems like the pattern is just too deep to be broken.

She needs me to help her with most everything, but she gets what I call "that tone" in her voice (disrespectful, disobedient teenager). I can hear myself talk to her like she was a child, but don't know what else to do when she has the responsibility of a three-year old (needs to be reminded to pick up her clothes, wash her face, sometimes even swallow her food properly). It's not likely our living situation will change in the near future either (we're talking to one of her sisters about taking her in when we cannot care for her any longer, but that could be 10-15 years away).

Andrea has a little job and takes a class or two once in a while (both of which she needs reminding to go to), and she needs constant supervision at home for her own safety. I don't let her take the disability bus because she wouldn't know where to get off. I doubt she will ever learn to remember to turn off the stove (if she has not done so already, after over 10 years of reminding), and I fear for her safety. What are our options for helping her be safe, and perhaps a little more independent, so we can have a more normal relationship - that is, if such a thing is even possible.

Thank you.
Cindy

Kathy's Response:

Dear Cindy,

It appears that your relationship with your daughter is that of mother and teenager for a couple of reasons. She appears to be "stuck" in a dependent role (based on the severity of her brain injury and the fact that she is back home), and you appear to be stuck helping her. It is possible to get unstuck - even if the adult child has relatively severe impairments (with judgment, short-term memory, decision-making, etc.) It isn't easy; it's just possible.

It will probably require some major paradigm shifts on your part, the first of which is to make a commitment to providing her with compensatory skills training she needs so she can learn to rely more on herself than she currently does. As long as she needs you for "most everything" it's going to be difficult, if not impossible, for the kind of parent/child relationship you describe to grow into something else. It sounds like you would be happy to get out of the "mother of an irresponsible child" role, so that's a start.

Reminders

Reminders are necessary when one has short-term memory impairment. The critical question is, do you want the reminders to be in the form of a human coach (you), or in the form of an external cue that your daughter can rely upon, basically on her own? The latter is preferable, if we are talking about increased autonomy and taking more responsibility for one's self. What do I mean by an "external cue"? Something like a written cue for taking care of routine activities and/or routine procedures. An example of a routine activity would be attending a class that meets on a regular basis. An example of a routine procedure would be cleaning up after one's self in the morning before going to school.

Example of an external cue for scheduling a routine task

The following is an example of an external cue a person with brain injury might use to schedule routine activities. In the program that I teach, students have individual "green ROUTINES cards" for daily, weekly, monthly and periodic routines. These cues (ROUTINES cards) become scheduling cues so the person does not need to rely on a caregiver to prompt them for either scheduling activities, or worse, for actually doing them. The following image is an example of a "Periodic ROUTINES" card:

	PERIODIC ROUTINES
	Priority #1 (check after item is scheduled next week) Flue Shot (October or November) Prepare Taxes (March) Annual Check-up (April) Dental Check-up (September) Check Smoke Detectors (January & June)
	Priority #2 (check after item is scheduled next week) Plant bulbs in backyard (October) Animals' vaccinations (March)
	Priority #3 (check after item is scheduled next week) Pay fee for safe deposit box (June)

Example of an external cue for doing a "routine procedure"

The following is an example of an external cue for executing a routine procedure, such as getting ready in the morning to go to school or work (this one is for getting ready to go swimming):

 

Practice STEPS for: Get ready for Swimming (Final and TESTED routine procedure)	Tested Steps GRS (Letter Code)
List of Steps	Time ESTIMATE
1. Find Bus Money	20 min
2. Get Large Towel	5min
3. Find Swim Cap	15 min
4. Find Locker Lock	10 min
5. Pack Gym Bag	20 min
6. With: Towel Lock Swim Cap Bus Money
7. Wear Swim Suit Under Clothes	15 min
ESTIMATED time needed for the procedure: 1.5 hours
Card 1 of 1

Cues like this can be set up for simple procedures (making one's bed, brushing one's teaching, doing a load of laundry, etc.), or more complex tasks (logging onto the computer and reading e-mail, filling out a time card, preparing a month-end report). The key is providing a person with the tools and skills he or she needs in order to be able to reach for an appropriate external cue, rather than relying on a human for reminding, coaching or cueing.

Teaching independence skills

The key is teaching the person how to use these kinds of cues, and that is not necessarily easy - particularly after a decade of learned dependency. This does not mean it cannot be done. It does mean that it would require a major commitment to behavioral change - on both your and your daughter's parts.

Confidence That Skills Can Be Learned

I've worked with hundreds of families. In my experience, the key to changing the dynamics of a parent/child relationship when the child is an adult with brain injury is an attitude adjustment on the parent's part. Not so much with respect to their desire for their adult child to be more autonomous, but more in terms of their believe that this is possible. Their concern for safety, their belief that they are needed to cue them, and a myriad of other believes and patterns, often interfere with their ability to see that their adult child may be capable of being more independent - and yes, even after 10 years of "reminding." After all, reminding someone with brain injury to do something, whether for ten years or ten months, does not necessarily mean they will learn it and do it. On the other hand, teaching them to use their external cues may be far more teach-able, and hence will provide the key to helping them be both more safe and more independent.

Please contact me personally if you want to learn more about independence training, as that is something that a good compensatory skills trainer will be able to provide your daughter. They will also be able to coach you on how to let go as she learns her new skills. Hope this helps.

Kathy M.