A FEW HARD-LEARNED REALITIES

 

            We have discussed before the fact that I made quite a few mistakes in managing our situation.  Others have in various circumstances.  We hope to learn from those mistakes, and to find help from others.  Here are some general conclusions from my experience, with more to come in a subsequent entry.  These “realities” are about our interaction and relationship with our relative/friend with dementia.

 

1. Minimize disagreement.  Those with dementia will express ideas and reasoning that are totally wrong.  Like me at first, you may find it natural to function on the basis of what is real and what makes sense.  Generally disagreement/argument with them will only create aggravation as their memory and thinking processes are disrupted.  Yet they still have the human need to be heard and appreciated.  They will quickly be frustrated and angry over someone’s persistence in disagreeing with them.

Here is the kind of exchange we had many times before I learned:

D:  Let’s stay home; I am cooking dinner.

B:  I don’t want to stay home to eat.

D:  Let’s stay home; we are eating out every day and it is expensive.

B:  I don’t care; I want to go out.

D:  We can’t afford it.

B:  QUIT!! WE ARE GOING OUT.

And a specific incident that was striking.  Beverly’s sister was visiting and we went out to eat.  Afterwards, on a Summer evening, she wanted to drive around for awhile.  She and her sister were comfortably riding in the back seat.  When the just driving around had gone on long enough, I said “let’s go home.”  She said, “No I don’t want to go home.”  I said, “No, this is enough.”  Suddenly she said, “You are a bastard.  Bastard!”  So I shut up.  But the right answer previously from me was, “OK, we’ll keep driving around.”  And fairly soon just drive home without discussion.    

 

2. Don’t criticize.  This seems easy enough, but it takes very little criticism to set off anger.  A comment about something insignificant may be considered criticism even when not intended that way.

At the end of breakfast, we are taking dishes to the kitchen.

D:  Just put the dish in the sink.

B:  WHY DO YOU HAVE TO ALWAYS TELL ME WHAT TO DO.

            Or another striking event.  She had repeatedly urinated on the back deck.  So I said, “Honey, please, if you are peeing in the back, just do it in the grass, so I don’t have to clean the deck.”  Her response was a very strong and persistent anger.  The more I tried to calm her by apologizing and trying to be soothing the more it persisted.

 

            Unexpected, almost unexplained anger may happen; it is essential to

deal with that anger calmly and with support for them.  And, in most cases, these reactions disappear quickly if the fires are not fanned by the reactions of others.

 

            (Note:  The angry times discussed above were not typical of her emotional state; they were exceptions to the usual, which was generally calm and happy.  It just takes the right prod (disagreement or criticism) to set off the anger.  So I learned to avoid those prods.)

 

3.  Simplify for them.  Much of what you tell them should be concrete and limited.  Instructions about actions should be broken down into one thing at a time.  Consider that you want to ask someone to get you a drink.  To the dementia person, this would have to be several separate requests, asking them to go to the refrigerator, then to get a soda off of the top shelf, then to bring it to you, etc.  Later yet in the Alzheimer’s process, instructions do not work at all.  Beverly needed shots in her eye for macular degeneration.  This was managed successfully for several years, involving the process of photographing the back of the eye and then giving a shot in the eye.  But a year or so ago all of this became impossible; eyedrops were successfully though with some difficulty.  Then she could not follow instructions to look at the dot and hold the eye still for the picture nor hold herself and the eye still for the shot.

 

And asking them to make choices has the same quality.  Going out to eat:  If they can read, an entire menu would nonetheless be impossible to attend to.  It becomes necessary to do a simplified asking.  If you are simply trying to get them to decide what to order, you should never list several possibilities, such as:  Would you like an omelette, fried eggs, pancakes, or waffles?  Try one at a time:  Would you like an omelette?  (If no). Would like a fried egg? Etc.

 

4.  Create and appreciate moments of joy for all concerned.  (See Blog Joy in the Moment)  Happiness makes life so much better.  These moments can come from many sources:  pictures of family or friends, stories about them or other people they know, music, how nice they look, even silly talk about anything that engages their attention.  Beverly has laughed for many, many months when I say on the phone:  “Keep your window open tonight.  I will come to see you.”  That has been said dozens of times but still gets happiness.  That particular statement may be inappropriate for many.  Find something they find funny and it will be reusable many times.  It is always great if someone tells her how good her hair looks.  And because they can be very attuned to the emotions and moods of you and others, you should find those things you can both laugh about.  And avoid sad topics, such as a death in the family.

 

5.  Work on “we” with them.  Suggestions/instructions can involve “we.”  Avoid telling them what to do, such as the drink order.  Break down the instructions, as indicated.  But it is a great improvement to make it:  “We should have a Coke together.  Can you get us one out of the fridge?  Or if she wants me to keep driving, I should just say:  “We are having such a great time driving around to see the canyon.”  Etc.  Always make matters not just about yourself.  Avoid something like “I fixed you breakfast.”  Better is “We have breakfast ready.”  This is a lesser issue perhaps, but the “we” approach is certainly happier for all.

 

6.  Redirection/happy lies.  As we discussed in a previous blog (Redirection/Happy Lies), it is hard but essential to smooth everything over with whatever lie works.  If Beverly wanted to bring food to her Mother who had been dead a number of years, the right answer became that we are going to go to see “your Mother” next week and take her out for some great food.  Why should she mourn again and again over her Mother’s death because I told her the trtuth again?  Staff in this facility have to redirect residents all the time.  A woman in the facility who wants to get out to her car to take care of her grandchildren (which is only in her dementia mind) is told their Mom has them at home safely, etc.

 

All of these lessons were learned the hard way.I made similar errors numerous times (e.g., arguing about some insignificant issue); seeing the consistent result meant that a better approach was needed.Hopefully the results of my slow learning are useful to others.Caregiving for your loved one with dementia can be difficult, but there are rewards