Living with Alzheimer's: The series

Joan Josephson has a look of joy as she plays a Mozart duet on the piano with her husband, Chuck. Now and again, Joan is briefly out of sync, playing too fast or too slow.

Still, it’s clear that Alzheimer’s has not stolen her musical ability — a talent she shared for 35 years in Tucson as a church pianist, organist and children’s choir director. The disease has taken much, but it is moments like this at the piano that make Chuck determined to help Joan remain in their midtown home.

Joan, who is 83, started showing signs of memory loss in 2005, and by 2010 an MRI revealed the damage to her brain. As the disease progressed, relatives urged Chuck to put her in a care home. Instead, he began to write, as he put it, “to explain what I was really doing: trying not to focus on what she ‘loses’ but on ‘what remains.’”

He eventually turned his writing into a pamphlet, which he gave to relatives and a few friends, and then to the Arizona Daily Star after the newspaper published a section on dementia last fall. Starting today through March 10, the Star will publish the pamphlet in daily installments.

Chuck, who is 82 and the now-retired longtime owner of the Print Well on East Broadway, says his purpose isn’t to instruct anyone. “I am just trying to describe how we are coping.”

He has a dim view of some of the advice he’s received at Alzheimer’s seminars and programs, but he says what one doctor told him early on was invaluable: “You must recognize that she can no longer ‘learn’ anything.”

“The doctor’s advice,” Chuck writes, “prevents me from getting too frustrated when naturally thinking, ‘You used to do this, just do it the way you used to.’”

Joan has always loved people, and Chuck takes her everywhere. She attends an exercise class most weekdays at Mid-Valley Athletic Club. “They all take care of her,” Chuck says.

They also regularly attend Tuesday meetings of the Pima County Republican Club. Both have been active in Republican politics since they moved to Tucson in 1979. They worship at Our Saviour’s Lutheran Church on North Campbell Avenue, and even played a piano duet there last Christmas.

They don’t travel as much as Chuck would like, but he hopes they can soon go to Washington state to see their daughter, granddaughter and grandson and — most of all, it seems — their great-granddaughter Kenlie, who is 1. She is named after their son, Ken, who died in 2013.

Joan always remembers who Chuck is, and often tells people she has just met that he is a “nice man.” She is happy to talk with anyone, but cannot remember names even minutes later. “Who are you?” she asks again and again.

Asked what he misses most, Chuck says he and Joan talk but are unable to have a conversation. Still, “life isn’t as different as you might think,” he says. They play piano and games, and Chuck enjoys cooking. If anyone wants to argue politics with him, Chuck is ready.

In the foreword to his pamphlet, Chuck concludes, “My wish is this. If we have some success as we face head-on this horrible phenomenon, may we come to say, as in the Bible, ‘the yoke is easy and the burden is light.’”

I have known my wife, Joan, since we met in college, and over the years I’ve come to know pretty well her family life growing up. Incidentally, it was not that different from my own upbringing.

This knowledge often provides context for actions that are natural to her, but are strange and difficult to understand when viewed alone. Here’s an example:

After a couple of experiences with fecal incontinence it became necessary to clothe Joan in diapers. The obvious thing was to go to the drug store and get the disposable kind, so I did. They helped a great deal. At that time, she was able to dress without too much assistance.

However, a few days later I noticed that the container for the used diapers was empty, and I knew she had been changing them regularly. I asked where the soiled diapers were. The response: “I don’t want to throw them away. They were still good. I put them in the laundry.”

At that time in the progression of the disease, Joan displayed certain obsessions. One was an eagerness to do jobs she was still able to do, including the laundry. I felt she got satisfaction from that and urged her to continue.

The paper and plastic diapers got nice and clean after the wash cycle. Unfortunately, she moved them to the dryer. High heat, no less. The paper disintegrated and the plastic melted.

Messy had a new meaning.

Yes, messy for the other clothes, but apparently no real damage ... until a few days later when she complained that the dryer wasn’t working right!

I checked it out and noted that the blower did not seem to be functioning. I’m handy with fix-it stuff, so I removed the back of the dryer. There, completely plugging the exhaust tube, were hundreds and thousands of the little absorbent beads from the diapers. Tough to remove, but the dryer still works OK.

How can I explain her actions?

Well, her family were conservative Midwestern Scandinavians who took much care to get all possible use out of something before throwing it away. That value system does not disappear easily, even under the influence of Alzheimer’s.

Why not accept that value and carry on with a procedure that would incorporate it? Thus my solution was to buy washable cloth diapers. She can, and does, put the dirty ones in the laundry, dries them, and gladly reuses them! That solves things to everyone’s satisfaction, particularly hers.

This procedure worked for a while, but eventually quite a bit more was needed. I’ll elaborate later in this series in an installment on fecal incontinence.

This one rather humorous incident is indicative of much of the way Joan leads her daily life. She may have no memory of things she learned, but there is a kind of ingrained response that kicks in to show her confused mind how to react.

Part two of 12.

The meanings of words and phrases such as “I don’t want to,” “Why?” and “No” have changed dramatically as Joan’s disease has progressed. (Actually, meanings continue to change!) In the early stages, words meant just what they said, but as time passed, I’ve needed some imagination to figure out what my wife probably intends.

“I don’t want to” may mean exactly the opposite. One has to be ready to interpret. For example, “Would you change into your pajamas and get ready for bed?” generates the “I don’t want to” comment. Does this mean she doesn’t want to change clothes? No, she likes getting into her pajamas. What she is saying is either, “I don’t know how to do that” or “I’m actually pretty comfortable as I am.”

“No” does not represent a negative, but is often just an automatic response to a yes or no question. “Would you like to go along to the store?” I ask. “NO,” Joan says. Yet, experience shows she wants to do just that. Why does she say no, then? My guess is that any kind of change requires an effort, and making any effort is hard to cope with. It is important to avoid yes or no questions as much as possible. Not “Would you like to come along?” but rather, “Let’s go!”

An unfortunate and, frankly, disturbing instance of this occurred when I was sending her to a respected adult day-care facility for a half day or a full day. They had activities for the clients — games and such. The ones in charge always reported, when I picked Joan up, that she behaved just fine.

Later, when I suggested that she might even participate in more active things, bus trips and so forth, they said her failure to get involved precluded them from wanting her to do more. I was incensed, for this meant she actually was not participating in the day care I was paying for. I pointed out that she loves to be around others, and asked if they believed her when she said “no” or “I don’t want to.” Sure enough. I told them to quit asking for a yes or no. They did, and the very next time she brought home some craft-like things she had done with the group. I was amazed at the ignorance of the employees.

“Why?” is another response in need of interpretation. I have been at “caregiver” meetings at which the facilitators made a point of telling us to be patient in explaining and answering “why.” Maybe in the early stages that is all right, but as time goes on, it’s wrong, even counterproductive. The disease affects Joan’s ability to understand even simple explanations. Going into any detail is simply confusing, even frightening to her — just as though she were being addressed in a foreign language.

An example makes the point. She fell at an auto-repair shop (not because of her condition) and knocked out four front teeth. Dentures are too much for her to handle, so implants were required. I told the dentist that it would almost certainly be necessary to have Joan anesthetized while the implant bases were being installed.

When the time came, he said the anesthetist was late and we’d have to wait a couple of hours. He had done work on Joan before, and felt she might get along with local pain deadening. Impatient, I said, “Let’s try.”

The pain-deadening shots went fine, and he started the surgical work. Joan started flinching and was getting disturbed. The dentist explained, as he would to anyone, what he was doing and why it was necessary.

I told him, “Don’t do that! It will just confuse her and make her more uncomfortable. Just tell her what you want her to do — open wider, bite down, and so on — and when she does what you want, compliment her and say she’s doing fine.”

Twenty-five minutes later the implants were installed, she was fine, and the dentist said, “That went so easy. I never would have thought of talking to her that way; I’m so glad you were here to tell me.”

It is no longer appropriate to accept every word at face value, but it is terribly important to realize that Joan is saying something! What she means may require clever interpretation and judgment. Her remarks often mean “I am getting confused” and little more.

Tomorrow: Staying social.

Part three of 12.

My wife has always been a social animal. She enjoys being with other people, chatting, making small talk, telling jokes. Her Alzheimer’s deterioration has not interfered with the outward sociability, but the way she carries it out is astonishing, both in its content and its effectiveness.

I am unable even to speculate how Joan came up with some of her approaches to sociability. A common one is to walk up to perfect strangers and say, “I’m not going to hit you now.” This comment is so strange and unusual that it generally produces two effects. First, the stranger immediately catches on that this is not a “normal” person; then they laugh. The laughing is, of course, exactly what my wife hopes for, and that just encourages her. But so what? Isn’t that a good thing?

Generally the strangers go on about their business, but once there was a special reaction. She approached a young lady in the produce section of the market where we often shop and made the comment. The lady flinched, and since I was standing by, I said that my wife has Alzheimer’s and uncontrollably does this kind of thing.

At that the lady grasped Joan’s hands and remarked, “Oh, you have Alzheimer’s? May I pray with you?” There, among the cabbages, carrots and pears, she said a short prayer for my wife. Wasn’t that sweet?

In attempting to strike up a conversation, Joan uses the sequence “I’ll try to behave. Didn’t I behave once? You don’t remember?” It’s hard for anyone to avoid commenting on something like that.

In a very early visit to the psychiatrist, I had mentioned that she often used the word “behave.” He kept count during the half hour session. It turned out to be nearly 40 times.

I have tried to figure out why that particular word or idea is so important to Joan in her fading memory. It’s just speculation, but I refer to something I mentioned earlier in this series about the careful household in which she grew up. She and her older sister were the only children.

Their daily activities in the small town would consist of playing with neighbor kids, going to school, possibly parties, sometimes community or church events. I can just hear her mother saying to the girls, “Now you be sure to behave” as they left, and on their return, “Did you behave?” Well, Joan is still trying!

Small talk does not come easy to me, but for her it has always been natural. One of her opening gambits is “And what do you do?” She still says it, but cannot process the answer, so it’s likely she’ll ask the same person once more — several times in an evening. Again, she’s trying to engage in whatever small talk she can, and I see no reason to interfere.

Tomorrow: Household duties.

Part four of 12.

Joan has always been a doer — not wasting time on hobbies or games. All her life she has looked for some task to do, some way to stay busy. That has not changed. However, now the task is often performed rather badly or even with negative consequences. (Remember the diaper-washing incident I described on Sunday in Part One?)

But she at least partly remembers doing some things, and I think it is important that she continues to do them. Sometimes I wonder what the neighbors think!

Joan has always assumed the Sunday responsibility for taking the garbage containers — those heavy green and blue ones with the wheels — down to the curb, about 100 feet.

She claims she does not have the energy to lift a dust rag or push a vacuum over the floor. But on Sunday, sometimes with a suggested nudge, she empties all the wastebaskets in the house, then maneuvers the garbage cans to the curb. On Monday, when they are empty, she brings them back alongside the house.

Similarly, fetching the mail is her responsibility. She, again, needs slight urging. She’ll look over the mail, find anything addressed to her and put it on top of the pile.

Now she has decided that picking up the morning paper is her job. She may check several times, over and over, until it comes at about 6 a.m. Shame on me for saying this, but it has occurred to me that I could never get a dog to bring in the paper that way!

She spreads the Star out on the table and starts to read, usually with the cartoons. She often comments on what she doesn’t understand. With this and chores, I believe she feels she is contributing to the operation of the household and most likely feels rather good about that. But that’s just my interpretation.

Joan also makes any unmade bed she sees. That’s fine at home, but at a hotel she won’t check out until the bed is as neat as when we arrived.

One sometimes unfortunate sidelight to her desire to do household tasks is her behavior if we visit others, particularly for meals. Joan wants to help set and clear the table, but she does not understand what needs to be done and that the hosts would prefer to do it themselves. She cannot stop herself. It’s what comes naturally, and she cannot learn not to help.

Joan does these jobs out of habit, not out of real understanding. However, to me, it is good to keep her active.

Tomorrow: The difference between multi-tasking and single-tasking.

Part five of 12.

In this high-tech age we all have an idea of what multitasking means. Teens do homework while listening to their awful music and watching a dull TV show, all at the same time. Strangely, the homework gets done!

I am using the expression in a much less dramatic way, but I think it illustrates another change in the Alzheimer’s process. Let’s look at the not-so-simple task of helping my wife, Joan, dress.

Not too long ago I could tell her — or she would decide — to change into pajamas or get dressed for church. Then the time came when she would not choose proper clothes. Recognizing that, I would select them, lay them out and then she would dress herself.

However, after some more time passed, that no longer worked. When I said “pajama time” it elicited only “I don’t want to” or “No” or “Why?” No explanation, even one that reminded her she really wanted to, for example, go to church, would get her to do what was needed.

Finally I figured it out. “Get into your pajamas” or “Take off your clothes for your bath” or “Get dressed so we can go to your exercise class” were all requests that confused her. The reason? Each one of those “tasks” was really a multitask!

Solution: Break it down into single tasks! So it’s “Take off your shirt”; “Take off your pants”; “Take off your bra” and so forth. And then, “Put on the …” in the same way.

If I had not figured out this problem of multitasking, I may well have treated her like a little baby, dressing and undressing her with me doing all the work, “because she just can’t do it anymore.”

That time may come, but recognizing the difference between multitasking and single-tasking certainly staves it off for a bit.

Multitasks come up all the time, particularly in asking her to do something. “Would you bring the salad bowl and salad fork so I can make our salad?” That’s two tasks! “Put the milk back in the refrigerator and put your glass in the sink.” Again, two tasks, and she can’t keep them straight. Ask one at a time and she will get it done.

I often ask her to do things that I know she wants to do, but I have to be careful how I frame the tasks. Also, I ask her to do things that really do help. She brings things to me, which I appreciate because I have walking problems.

The situation of multitasking brings up some obvious problems of placing her in a home. I cannot imagine any adult care home having the personnel and training to do things this “one-by-one” way.

The only convenient thing for them is to require the client to “guess” in matters like dressing, and certainly there will be no requests to help take care of the home! But we can predict what happens: partial independence gives way to regimentation.

Without doubt, the repetition of that regimentation, day in and day out, would lead to faster deterioration of life for her.

This provides a powerful reason for in-home care. Even after two days in an adult care home, Joan lost her desire to be active. It took a day or two back home to restore the routines that we follow every day.

Tomorrow: Coping with fecal incontinence.

Part six of 12.

I am told it is not unusual for Alzheimer’s sufferers to lose conscious control of their bladder and bowels. This has happened to my wife.

The mess and odor associated with bouts of fecal incontinence probably represent the most difficult challenges to cope with.

The first step in coping is to begin substituting adult diapers for regular panties. I soon found that the drugstore paper kind do a terrible job of handling bowel discharges. However, when Joan experienced her first incident, it was early in the disease progression. She so disliked having to wear the diapers that she became more careful and had fewer “accidents.”

I also tried controlling her diet so that she ate the same foods for each meal. That helped. Her ham sandwich and baby carrots made a neat but monotonous lunch. After a while, limiting her diet was insufficient and I had to find other solutions.

As discussed in a previous installment of this series, I purchased cloth diapers to replace the paper ones. They did little better than paper when bowel accidents happened. A couple of times it was so stressful for me that I had to put her in a home.

I continued to puzzle over the problem. Clearly the incontinence would not disappear, so what could control the mess? It probably took me a hundred times longer than it would anyone else to identify a solution. Finally, I checked to see if there was an equivalent to a baby’s rubber panties that cover the diaper. Of course there is; they’re expensive, but at least the ones I found do the job.

We were traveling when the problem first occurred, and even though I’ve learned to cope I still carry a portable toilet and plastic seat covers in our car just in case.

A highly publicized, reputable and expensive adult day care facility rejected Joan because of her incontinence. They said they did not have the ability to cope with it. I regard that as simply inexcusable. It’s not as if this problem is rare for Alzheimer’s sufferers. Get with it, professional caregivers.

Tomorrow: Music hath charms.

Part seven of 12.

My wife and I both specialized in music when we were in college, and we both went on to teach high school music for a time. Later, Joan took up the pipe organ and for most of her life has enjoyed playing for church services as well as at other events. Joan can certainly be regarded as a professional musician, albeit of much less capability than one might see on the concert stage.

We still often listen to music and play, performing in public on occasion. However, even in this important part of our lives, problems arise that need solutions.

Music teachers will always say “practice makes perfect.” It doesn’t work that way any more. Fairly early on, Joan would recall during rehearsal little changes we made to polish a selection, but by the time it came to perform, she forgot those nuances. She would play everything as if it were the first time through! This became critical when she was playing for a soloist or a choir. There was no compromise available, so Joan had to abandon her accompanist work.

We have always played together — piano duets or piano-organ duets — and still do. When we play duets I am sometimes able either through hand motions or other signals to insert some points of expression.

Joan has always been a fine sight-reader and certainly still enjoys playing, but now she plays only what the composer has set down. (A composer once told me that what he writes is an important but often imprecise guide, so the player must contribute and interpret, to express more fully what he could not put on paper.)

A pianist needs to be able to read “rests” as well as the notes. Joan seems to have lost part of that critical skill. In playing duets, one performer often stops for a time while the other takes the lead. The silent pianist has to count rests, and for her, counting more than a single measure seems confusing. Well, the repertoire has changed for us! We just select duets where her part doesn’t have those confusing rests. There are still many fine duets we can play, at least well enough for our at-home audience of two.

We have old arrangements of Beethoven symphonies for four hands. Don’t cringe, musicians — before recording was invented masses of people had access only to their piano to reveal at least something of the sound of the rich repertoire. It’s still for a pianist to pretend he’s an orchestra! We make hash of the Fifth Symphony (ba-ba-ba-BOOM!) but we like to try, and sometimes it sounds pretty good.

While Joan loves to play, she will never say she wants to. Further, she cannot make a decision about what to play. I must choose. She’ll say she doesn’t want to, or she can’t, then go ahead and play just fine. In fact, a friend recently said Joan got a look of sheer joy on her face while she was playing.

She obviously loves listening to music as much as ever, particularly music from the classical or romantic periods. As we are driving around town, and especially on longer trips, it’s fun to watch her move her hands in time to the music on the radio or CD player. Music in churches is still special. She finds the hymns by page number and sings along on every verse. She has a good voice! If an adult care home really wants to impress us, let’s hear Haydn or Handel or Rachmaninoff or Tchaikovsky on the speakers, rather than elevator music.

Some say, for Alzheimer’s sufferers, musical experiences from early life seem to remain longer than other experiences. We hear examples of talents re-emerging and songs recalled after all seemed gone, and observers are often amazed.

Many have pointed out that music and song will brighten the day when nothing else does. The power of that special language has been very important to Joan.

Tomorrow: Obsessions.

Part eight of 12.

It was quite early in the progression of the disease when my wife started to display an almost uncontrollable urge to perform some tasks.

Interestingly, although this stage went on for many, many months, Joan gradually became less driven by the urges, until now they have almost disappeared. I interpret this not as a cure, but rather as an indication that some part of her behavior-control mechanism has changed.

But it was interesting and presented problems to solve while it lasted. There was the laundry obsession. Should the dirty laundry box get even to a half load, Joan had to take care of it. Seeing the towels becoming more and more frayed from too much washing, noting the piles of lint building up from the dryer and watching the laundry soap disappear was for me, a frugal person, not easy to ignore.

But the alternative, to stop her from doing things, had little appeal. I believe doing “something” is good for her, and I would therefore accept and work with her obsessions. I noted that the gray water going on my citrus was more plentiful than usual, and the laundry didn’t pile up.

Next there was the dirty dish obsession, a somewhat more difficult problem. Her passion for cleanliness led to a total aversion to any dirty dish in the sink. It had to be washed, and NOW! Unfortunately, her enthusiasm failed to include using soap. Washing dishes meant running the hot water tap until the temperature was right, and then rinsing the dish. No soap.

That had to be fixed. Fortunately our kitchen sink has a screw-in stopper that I could tighten firmly enough that she couldn’t open it to drain the water. I put a good amount of hot, soapy water in the sink. Problem solved. She can follow her obsession, but she now has to use soapy water and get the dishes clean!

Other obsessions remain. Lights not in use must be turned off. Great care must be followed when leaving the house to be sure all doors are locked, all electric appliances turned off and so on. Sometimes I deliberately want lights on, and I often leave something simmering on the stove, only to find that Joan turned it off. It can be frustrating.

Perhaps new obsessions will emerge and need attention. Each of them will be just a problem to solve.

Tomorrow: Hungry or not? Contact Chuck at chuckandjoan@msn.com

Part nine of 12.

Gradually it appears that my Alzheimer’s patient has a special kind of forgetfulness. Joan either forgets to eat or forgets that she has eaten. This poses special problems.

First was the problem of the cookie jar. I liked to keep a jar of cookies on the counter for that quick picker-up. Then I began to notice that a full jar would go down by half in a single day. Something had to be done.

Just as I have to distribute clothing one piece at a time, now it is the same with food. It took me a little time to realize that putting a few cookies out, while hiding the rest in the cabinet, actually worked. Even when my wife watched the package go into hiding, she was unable to remember that.

She likes a slice of toast with breakfast. If the loaf of bread is available, there soon will be three or four — or more — slices gone! It keeps me hopping to remember to put the loaf away.

Unless those hunger pangs — real or not — are satisfied, though, she is very uncomfortable. Particularly during the night, she sleeps with food on her mind. She used to get up, wander around the kitchen, find nothing and then come and wake me. I found that if I put crackers spread with peanut butter or a cookie on the counter, she eats them and comes back to bed. That can happen three or four times in a night. If I awaken, I refill the cracker-cookie display.

Once, Joan’s hunger pangs resulted in a real surprise. Folks in her morning exercise class commented that her mouth was bleeding. l saw some redness but no blood. Back at home, I happened to glance at the kitchen sink and noticed a bit of red powder around the drain. Aha! Joan likes to drink fruit punch, and I use powder packets to mix it. Well, one night she couldn’t find anything to eat so she opened a packet and tried to eat it straight. Guess it didn’t taste so good!

A side note on food. At one caregiver presentation I attended, I was cautioned to prepare foods she likes or is used to. In Joan’s case, that’s not yet necessary. She eats plenty. On the other hand, her memory loss has had one funny effect. She no longer remembers what foods she didn’t like. A friend served us sauerkraut, which I love but never fixed because she wouldn’t eat it. She had two helpings! There are some blessings in forgetting.

Tomorrow: Falls.

Part 10 of 12.

It seems to be true of most people that as we get older, we are less steady on our feet. We use the railing on the stairs more than we did. Even when taking a little stroll, we are a bit more careful to see where we put our feet.

The body has a mechanism to help prevent falling or fainting. When we stand up very quickly, the body sends extra blood to the brain. As we age, that controller doesn’t do as well as it used to, and we have to be more careful. If you leap up too fast, you might get really unsteady and even faint. Keep it slow. Be careful.

It has never been easy for Joan to take things slowly and carefully. My wife moves quickly, and that can lead to trouble. She needs to be reminded to watch out for a slippery floor. Alzheimer’s prevents her from remembering that sort of hazard.

There were some falls, and they were worrisome. Following the advice of various medical personnel, we looked for any physical problems that might have caused her to fall. After many tests, nothing physical showed up.

It bothered me when she lost her balance and fell down because that contradicted what I was able to see every day. Her sense of balance is good indeed. She can pull on a pair of slacks while standing first on one leg, then the other. I can’t do that!

Once at check-in for her exercise class I had my back to her, then heard a gasp from several onlookers. She had seen a chair nearby and decided to sit down. It was just a couple of steps, but she just fell on the floor. She must have stumbled over her feet. No other reason was apparent.

Then it hit me. Joan has always carried a heavy purse cradled in her left arm. She was carrying that purse every time she took a fall. When she stumbled over anything (including her own feet) she was like a bird with only one wing! She couldn’t use both arms to steady herself and keep her balance!

You can guess that she is no longer allowed to carry a purse. I watch carefully to keep both of her “wings” free. She shouldn’t walk with a package in one hand, for example. She needs extra care to keep her balance when walking.

Medical professionals do all they can to help us prevent falls and maintain our sense of balance. In Joan’s case, the usual tests for physical problems were necessary. But I wonder if “holding a purse in your left arm” might not be worth a line or two in a medical journal!

Tomorrow: Playing table games.

Part 11 of 12.

On the Minnesota farm where I grew up, my family would often play table games, generally cards. During blizzards, normal activities paused.

With no TV to captivate us, we found great entertainment in card games like whist or hearts, board games like checkers and table games like Monopoly. Playing games with family and friends created great memories.

When my wife, Joan, first began her Alzheimer’s decline, we played a card game called Spite and Malice. At that stage she could follow the rules. She did well and would win maddeningly often!

As we got involved with other problems, Spite and Malice fell into disuse. A few months ago we went to a friend’s house for supper with their family and mutual friends. Following the meal, the table was cleared and games started. A little skill and lots of luck made for a fun evening.

Joan did not grasp any nuances of the games we played, but often showed interest in some simple strategy she understood. The other players humored her and helped her participate.

That experience led me to wonder if there was a table game we could play together.

Actually, there are probably many such games, but we found one called Qwirkle. With over 100 tiles to spread out and turn face down, the setup alone takes a lovely amount of time.

It’s a simple game, and in the original form it’s quite clever in its strategy. It turned out that the original rules were too much for Joan to grasp. We simplified them, and it’s an Alzheimer’s game now.

With the simplification, if anyone would join in they would either be bored or win so quickly there would be no enjoyment.

Boredom is not a problem for Joan, though. She enjoys playing simplified Qwirkle.

Still, she needs a lot of reminding of the possibilities at each turn. In fact, if you watched us, you might think that the game is solitaire, with me playing against myself.

Qwirkle is one more thing that keeps her busy, and I find it fun. I’ll be looking for more games and might even try to tackle Spite and Malice again, if I can only remember the rules. I forget things!

Wouldn’t it be great if, now and then, everyone would put down their phones, turn off the TV and play table games?

Tomorrow: Chuck’s conclusions.

Part 12 of 12.

I want to close with comments about the help and assistance I have found to be available in coping with my wife Alzheimer’s.

As I wrote earlier, I really dislike the title “caregiver.” My main objection is the implication that the one receiving care is totally helpless. Taking care of my dog is indeed a caregiving task. Taking care of a helpless infant is of course a caregiving job. But at least in the early and even much later stages of Alzheimer’s, caregiving is just giving up.

There will come a time, I hear, in the progress of Alzheimer’s when the sufferer is helpless, and at that time it is appropriate to supply a caregiver. But the disease progresses quite slowly in most cases. In the meantime, my main task is to focus upon any ability that remains, and not regard each loss of functionality as helplessness.

I have attended forums, lectures and presentations discussing the disease, and have far too often been almost angered at the failure of the facilitators to point out ways to keep the patient functioning. Many times they seem to ask us problem-solvers to regard the patient as more helpless than the facts exhibit.

Let me underscore some of the tips I have written about in this series, tips I have never heard mentioned in any lecture or discussion. No one has ever said that the patient uses words and phrases not only to mean something different from before, but also in a way that may continually change.

I have heard many group leaders comment about how patients may recall distant events but not recent ones. But no one has ever mentioned how Joan’s seemingly strange actions may, instead, be behavior that represents a value system (such as a passion for cleanliness) from the past. Understanding that value can give me a clue as to how to deal with the activity.

No one has pointed out that the patient may say “no” and yet mean the opposite. I have not heard anyone discuss how multitasking can be confusing and how one can let the patient function by single-tasking. I have seen heads shake and eyes roll at the mention of fecal incontinence, but have never received advice as to how to deal with it.

There is one thing I heard only once, but that was from a psychiatrist, and it conflicts with remarks I have heard in most group presentations: “Don’t worry too much about how you express your own feelings to the patient. You have a right to be upset, frustrated and less than always even-tempered. If raising your voice may remove some stress for you, go ahead. You need it. It may have bothered her greatly in the past, but now, in a moment she’ll forget your outburst.” I feel guilty when I lose my cool that way, but it does relieve stress and I am thankful that Joan’s memory loss allows me to express my feelings without hurting her. If I were stronger, I wouldn’t say things that way, but I am human, too, just as she is.

We are told to speak slowly and clearly, and to repeat ourselves until the patient understands what we are trying to say. Nonsense. Just as her words may mean totally different things, so also her understanding of your expressions bears little if any relationship to how those words would have been understood in “normal” times.

Following the “rules” may actually increase her confusion. It is necessary for me to remember that each moment is a different time for Joan.

Above all, I have never received encouragement to keep Joan functioning at as high a level as possible and not give up too soon, if at all. My approach is to try to find solutions to our problems. Yet it is important for me to recognize that some problems cannot be solved.

What I hate most is feeling alone even in the company of my beloved wife. I used to sing a song at weddings. One of the lines had this message and wish for the couple: “When you are married, your joys are doubled and your cares are divided in half.” The most devastating effect of Alzheimer’s is the fact that message is no longer part of our daily life.

Yet I have renewed appreciation for our moments of shared joy or sorrow. As the special moments occur – and they do — we are reminded that no matter what we face, we remain human. We remain children of God.