Independence: freedom from the control, influence, support, aid, or the like, of others. (Dictionary.com)

I say “dementia,” and you probably think “memory loss!” That’s true–as far as it goes. A more comprehensive way to think of it is “dementia=the whole brain is under attack.”

Looking at it this way, one of the most obvious manifestations of dementia is the loss of independence over the course of the disease progression. Your loved one requires more and more assistance as time goes by, until finally she requires total assistance in order to survive.

Think about that for a minute. Total assistance in order to survive.

Can you even begin to really imagine what that feels like? The utter loss of control? The loss of control over who’ll drive, who’s in charge of the remote, where to go for dinner…all those (very real) struggles pale in comparison to the reality of the loss of abilities a person living with dementia experiences:

  • Food preparation
  • Housekeeping tasks/laundry
  • Manage finances
  • Shop
  • Use a telephone
  • Manage medications
  • Manage travel/transportation

Collectively, that list of abilities is known as Instrumental Activities of Daily Living (or IADLs, in geek-speak). I know, some of the things on this list don’t sound like any great shakes. How big a deal is doing your own laundry, after all?

Now, consider that doing a single load of laundry requires the following steps:

  1. Sort dirty laundry into piles
  2. Choose a pile to put in the washer
  3. Put dirty laundry into the machine
  4. Measure laundry soap
  5. Add laundry soap to machine
  6. Choose correct setting for load in machine
  7. Close machine lid
  8. Turn on machine
  9. Remember load of laundry is in machine
  10. Transfer laundry into dryer
  11. Clean out lint trap
  12. Add fabric sheet
  13. Make sure door is all the way shut
  14. Choose correct setting for load in machine
  15. Turn on machine
  16. Remember load of laundry is in machine
  17. Take load out of machine and hang up or fold
  18. Put clean laundry away in closet or drawers

And that’s just the way I do laundry. Someone else may use liquid fabric softener, or bleach, or pre-treat with stain remover.

No matter your method, we all need to do one thing first: Recognize that dirty laundry is a problem, and the solution is the washing machine.

See how challenging “just” a load of laundry can be? Keep in mind that we move on to other tasks while the machines are doing their thing; it’s easy to forget a load of laundry, especially if you don’t use the annoying buzzer on the dryer.

IADLs all require executive function, or the ability to plan, reason, problem solve, and execute a plan. Laundry is one of the “easy” tasks on the IADL list. All of them are things adults without a cognitive disability take for granted. Too often, another thing we take for granted (or don’t think about in the first place) is the emotional toll of loss of independence.

When we consider it at all, it’s often the subject of pitiful “jokes,” or a source of conflict as we accuse a struggling family member of being “manipulative” or a “control freak.” Again, what would your reaction be if your brain was under attack to the point where you would eventually require total assistance in order to survive?

In this context, it’s easy to see why someone would insist that the only “right” way to make meatloaf is with a ketchup glaze; that towels must be folded in half crosswise and then lengthwise in thirds and once crosswise again; that reruns of Murder, She Wrote are far superior to first-run episodes of How To Get Away with Murder.

So what can we as care partners do?

As always, I recommend starting with compassion for what your loved one is going through. Compassion in action is kindness. Bring that, plus love and respect, into every interaction. Then you know you’re starting off on the right foot.

Next, determine how much executive function remains. Although “safety awareness” isn’t on the IADLs list, it does tie in with ability to manage medications and use a telephone. (Also, if safety awareness is absent, I really don’t care if someone can figure out public transportation; we’ve got bigger fish to fry in the moment.) For example, when I’m working with a private client, one of the questions I often ask is, “If you were home alone and thought you were having a heart attack, what would you do?”

One particularly memorable answer? “Wait for my daughter to visit.” When asked when her daughter visits, my client said, “Every Tuesday.” She had lost the ability to reason and problem solve, unable to take into account that a heart attack requires immediate attention and they don’t only happen on Tuesdays while a daughter is present.

Use the Lawton IADL Scale to get a clear picture of what your parent or partner is able to do. You know the fortune cookie game where you add the words “in bed” to the end of whatever the fortune is? Care partners like to play the IADL game by adding the words “when I help her” to the end of every statement on the scale, thus rendering it as accurate as a fortune cookie (in bed or out).

For example, one of the possible answers on the Lawton Scale is: “Dials a few well-known numbers.” It doesn’t say “Dials a few well-known numbers when I help her.” There is no invisible ink at the end of the statement! We want to accurately determine what your parent or partner can do without help. This will allow you to figure out the next step for planning purposes. Make sense?

Now, let’s review the score you determined on the Lawton IADL scale. If your parent or partner scored an 8, high fives and fist bumps (but why are you here?). Even with a score of 5, you’re still in pretty good shape–but you’ve no doubt noticed some subtle changes over time and can expect to see more in the future.

If the score is less than 5, it’s time for action. See The Right Now Plan for details. It’s perfectly normal for you to be in denial about your parent or partner’s signs of dementia and loss of abilities–but that doesn’t change the reality of the your situation. Disease progression still dictates an outcome of total assistance in order to survive.

This post covered a lot of ground and may have prompted you to consider things you hadn’t given much thought to before. Let’s continue the conversation: join the live stream to ask questions about loss of independence, IADLs, the Lawton IADL Scale, or anything else. Thursday, 7/7/16 at 1pm PDT/4pm EDT/9pm BST on Periscope and Facebook Live (simultaneously). Follow @DementiaSherpa on Periscope or Twitter to get a reminder notification.

 

Christy Turner is the founder of DementiaSherpa.com (CTC Dementia Care Management) and has enjoyed the privilege of working with over 1,045 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Periscope, Pinterest, Twitter, and YouTube. Content varies daily across platforms.