TROUBLES AND JOY FROM TIMES OUT OF HOME/FACILITY

What can go wrong when you are go out to have a pleasant dinner or to buy some clothes in a store? Many problems can develop--and quickly so.   What might prevent unpleasantness or even legal difficulties?  Of course, the particulars of how and in what ways the dementia has progressed will make a significant difference.  But even in early dementia many of the issues to be discussed will happen. 

It is important to get out with the dementia patient, whether they are still living at home or in a facility.  The time together is often a happy time, especially if there are others with you.  We had great moments at restaurants, movies or plays, even at concerts (typically needing to leavew at the intermission).  I often took her from the facility to church, an event she heartily enjoyed, especially after the service when she could socialize with church friends.  Our children, family, and friends have notable recollections of the time we met for a meal or went to a concert.  Beverly was happy to be with them and had a wonderful time.  Our son’s favorite recollection is a time that we went out to eat, which was great itself, to eat and be together.   Then Beverly and his wife got up and loved dancing to the music playing there.  We all had such joy about that!

Covid disrupted all of that as she could only leave for a serious medical issues.  Now it is almost impossible to take her on any outing, as she is wheelchair-bound.  I meet her outside of the facility for medical appointments, as the facility has a van for transport as she is easily loaded by a lift.

 Know that change is difficult for dementia patients, even in the early stages.  It will be more successful to have familiar places and choices.  Go to a restaurant she is familiar with.  And foods she is familiar with.  And clothing styles.  Activities. And people.  It is remarkable in her facility how much cooperative a dementia patients is with a familiar staff member.

A consistently troubling problems is that dementia patients struggle when offered many choices.  In a restaurant, he cannot process the entire menu or even a single page of it.  Pick an item he is likely to prefer and simply ask:  “’Would you like to have the fried chicken? “  If “No,”  offer the burger.  If “No,” suggest the salmon.  This is such a general solution to so many aspects of their live; e.g., it applies to choosing clothes to wear for the day.  Beverly would often pick the pancakes if offered that from the breakfast menu.  But there was no response to putting the entire menu in front of her.

And anyone going out to eat with a dementia patient should be prepared for the likelihood of unusual behavior and expect a mess.  By the time a dementia patient has advanced to middle state of the process, they may eat with fingers.  If someone else’s plate is close by, they may simply reach over and take a bite and/or pick up the other person’s cup or glass and have a drink.  In the facility, she once did this at breakfast.  The man whose coffee cup she grabbed was very angry about it; he was frontal-temporal dementia and the inhibitory aspect of functioning had been disrupted.  He would have hit her for that “theft,” but others intervened to stop him.  The mess involves dropped and spilled food and drink.  Eating is very disorganized, so that, whether by finger or utensil, food is dropped on the table, their clothing, and the floor.  This is another reason to be a regular customer at some restaurant.  Our regular places knew what was happening to her and were very tolerant.  Also dementia patients are prone to walk off with something from a restaurant—silverware, a cup or a glass.  One has to have ways of calmly retrieving them, preferably before leaving.

That brings us to the simple fact that it pays to inform others, such as servers, of the situation.  You can get, from a memory care facility or a dementia organization, a card that says your companion has Alzheimer’s and may have some difficulties.  I have used such a card.  But ordinarily I was able to convey that information without the card, doing so with enough subtlety that Beverly did not know what happened.

  A more serious issue is not leaving them alone, certainly after the earliest stages of dementia.  I once took Beverly with me on an errand I needed to do for our son, only needing to be in a store for a few minutes.  Upon arrival, she refused to leave the car to go in with me.  Of course, I said, “Now just stay here for a minute.”  With extra hurry, I returned to the car to discover she was gone.  I ran to every store in the immediate area and asked if anyone had seen her.  When no one anywhere reported seeing her, I went to the car and drove around trying to find her.  She was on a sidewalk next to a road on the back side of the strip mall.  And, happily, she had someone walking with her, a someone who had become aware that she was lost and confused.  I now had her safely, but I had spent at least 30 minutes in a panicked state. 

And then there is the issue of sensory overload, another issue I did not fully appreciate.  Stimuli in our acceptable range are often too intense for dementia patients; this may result in anxiety/fear or anger.  A noisy restaurant, which so many are these days, will disrupt their normal functioning.  The most striking example for us was the movie “Sully” in which the intense visual scenes combined with the loud dramatic soundtrack resulted in high anxiety, such that we left the movie mid-way as she could not tolerate it any more.

Too many instructions will also make for overload.  Provide one simple instruction at a time. And likely a complex direction should be broken up into simple steps.   “Change your clothes” will not work well.  Start with: “Let’s pick out a clean shirt.”  After that: “Let’s take that one off, as it seems wrinkled.”  Etc.. And simply talking to them more loudly when they do not seem to understand will only worsen that failure to understand.  

And using the bathroom.  Eating out becomes a tricky matter for a spouse early in the process.  Generally it seemed best for me not to go into a Women’s bathroom in a restaurant, so I rarely did so. Preferably meet others at the restaurant, others that includes a person of the right gender to walk into the bathroom with the spouse; this assumes also that such a person would understand the issue and be willing.  On occasion, after a long wait, I had to ask a woman staff member to go in and check into what was happening.  And there is an issue of being sanitary, including washing hands.  Once, fairly early in the dementia, she went into a restaurant bathroom with a latch on the inside; then she kept rattling the door (I could hear it from my table in the restaurant).  I finally told the woman server that she could not figure out how to get out and that woman went to the door and talked her through pulling off the latch.  The most striking case involved another couple around 4 years ago.  The husband and wife, Beverly and I went to a small music concert.  The wife was in a middle stage of Alzheimer’s.  In the middle of the concert, she desperately needed to go.  The husband engaged a woman staff person to first be certain the women’s bathroom was empty, then she stayed at the door to keep other women out until they were through.  Apparently an unhappy line of other women was created, but at least this couple’s crisis was solved. At some point in the advancing dementia process, it will become necessary to be with someone with advanced experience at managing toileting for a dementia patient.  

There are moments of frustration for others about failure to cooperate in a normal way.  Servers in restaurant are more accepting as their tip is in the equation, though I could see their frustration develop by the press of time as she struggled with choices about drink and food.  But the frustration of others can be very disruptive for the patient.  When Beverly had her eyes checked several years back, she could not cooperate in reading the letters presented; she did not quite understand what the Medical Technician was asking.  The Technician became increasingly frustrated, getting agitated and demanding. The instructions were louder with irritated tones, resulting in worsening cooperation.  I chose to watch in quiet frustration of my own, as it became too late to back off the Technician.  I sent a brief e-mail to the Physician the next day, simply mentioned Beverly’s condition and the simple fact that patience is the only hope for improving the situation; this difficulty never happened again at that medical office.

Then there are the moments of disruptive behavior in a restaurant or store or church.  We have been very fortunate in that regard; there was never a publicly notable outburst from Beverly at a restaurant, church, office, etc.  Early in her time at this facility, some good friends came to visit and were waiting in the lobby.  She and I came there and said “Hello.”  She quickly became very agitated and talked angrily to them, not making much sense.  So they left and, sadly, never visited again.  It was easy to know what was in her mind, though, in the moment, I was not perceptive enough.  This was about her pride, one of her strong traits; she was embarrassed that, of all people, were seeing her, now placed in a facility.  Many others have reported strong angry outbursts in public places.  The Soul of Care by Psychiatrist Arthur Kleinman followed his wife’s Alzheimer’s progression over years. Late in the final period of his direct caregiving, they ate an “upscale” restaurant in Boston to celebrate her birthday.  She had repeated outbursts, yelling at him angrily; apparently the first time about helping her with her chair and at the end about helping her with her coat.  Pride, too, perhaps.  Prevention is often possible; in previous blogs, we have discussed:  not disagreeing with dementia patients about any issue (even when truth is central); avoidance of disparaging or insulting them; and not treating them, through talk or other behavior by you (or others) that minimizes their adulthood and independence. These are generally  the “happy lies” approach (blog “Redirection—Happy Lies”).

And there are serious problems that, until they happen, are totally unexpected.  Our prime example is her theft of a number of modestly priced jewelry items from a upscale department store (details in blog “Theft—Crime and Punishment “}.  On the first occasion of theft, I was in another part of the store, so I had no opportunity to see it happening.  The next day I stood next to her and never saw any of several thefts of jewelry.  According to their security people, the cameras showed that she waited until I was looking away to take something and put it in her purse.  We were stopped when exiting the store and this was a horrendous time for us both.  Ultimately we were able to do the best possible: pleading guilty to a Misdemeanor and accepting a suspended sentence.  The emotional cost was huge; otherwise it was just paying an attorney and the court. The lesson really is to pay attention to your dementia person when you are out; theft is unlikely but it happens.  And there are many other unpleasant possibilities that one might never anticipate.

In spite of these issues, the caretaker and their cared for should get out often; these issues are mostly manageable.  Pay attention, so you avoid problems.  Then just have fun!   Family and friends should promote laughter.  Both of our children have always made her laugh with a bit of silliness, sometimes even childish poems that were somewhat naughty.  We all laughed at what might seem silly to others.  Those times of going out to meet them and others were some of the happiest times in our lives.  Enjoy your times out!