How To Visit With An Alzheimer's Patient

As Alzheimer's progresses, its effects can be dramatic. Most visitors expect some memory loss and confusion, but many are shocked by the profound physical differences the disease can also cause.

Appetite changes and agitation can result in considerable weight loss. Confusion and loss of judgmental abilities can change a fastidious, stylish dresser to someone who appears unkempt and makes "unusual" clothing choices. Poor balance and loss of co-ordination can lead to falls and decreased mobility. The person you remember as fit and active for his age may now be in a wheelchair.

If you're planning a visit to a friend who's been stricken with Alzheimers, and you haven't seen that friend for some time--be prepared. On more than a few occasions, I've seen visitors who simply could not believe that the person I'd taken them to was the person they'd come to see!

On the other hand, the former neighbor you've come to visit may look much the same; but the friendly, outgoing lady you knew has been replaced by a morose, suspicious person who calls you a liar when you tell her who you are.

Naturally, not all visits result in such dramatic surprises; but it doesn't hurt to expect some changes.

If it's possible to plan your visit for morning or early afternoon, you'll probably enjoy a much more productive and pleasant time. In fact, anytime before the evening meal is considered better for visiting with Alzheimer's patients.

You may not have heard of what we call "Sundowning". Or you may have heard of Sundowning, but think there's nothing to the idea that confusion gets worse late in the day. As anyone involved in caring for those with Alzheimers can attest, Sundowning is very real.Theories abound to explain why many patients become more confused, and increasingly more agitated in the late afternoon and evening hours. Some attribute it simply to exhaustion at the end of the day. Others blame it on altered time perception, depression, or even an increase in shadows caused by the waning light.

Whatever the reason, this is the time of day when many confused people decide "it's time to go home now", and become determined to do so. Others just become agitated and uncooperative with no obvious reason. Many patients who are confused but pleasant all day become upset and even physically aggressive "sundowners" as evening approaches.

The person you visit may not be affected by sundowning--some confused patients aren't. Unless you're sure, though, it's probably a good idea to make your visits during daylight hours, if you can.

It's the most natural thing in the world to ask "Do you remember me?". The unhappy truth is that with Alzheimer's, the answer is often No. Many patients remember only their immediate family members. Sadly, a few have forgotten even those they love the most.

I'll never forget the day I realized that my Dad no longer knew who I was. Despite my experience in dealing with Alzheimer's, and knowing that it didn't mean I hadn't been important to Dad, it still hurt! If I could offer one bit of advice to everyone who visits an Alzheimer's patient, it would be "Never take the memory loss personally". I learned not to ask Dad if he remembered who I was. And here's the thing-- although he no longer recognized that I was his daughter, Dad was still happy that I was there to see him, and he enjoyed talking and visiting with me.

Now that you know it's best to avoid saying "Do you remember?", what do you say instead? Here are some good alternatives.....

When you arrive, try not to say "Do you know who I am?" or "Do you remember me? Say something like "Hi, Aunt Alice, I'm Cathy-- Bill and Mary's youngest girl". This approach helps in two ways: It's frustrating for Aunt Alice, too, when she doesn't know who you are, and this eases her discomfort. And....sometimes giving your name and a little information to Aunt Alice on how you fit into her life will nudge something in her memory and allow her to recognize you. But sometimes it won't. If not, try not to dwell on the issue. Saying things like "Surely you remember all the times I spent at your house...." doesn't help. She really can't remember and it's frustrating for both you and Aunt Alice!

The right approach can make a world of difference. Maybe Aunt Alice was a talented baker, and always made a special birthday cake for you. Again, avoid the urge to ask "Do you remember the time I helped you make my birthday cake?" It's much better to say, "I was thinking of that time I helped you make my birthday cake..." If she does remember, Auntie might chime in with how you ate so much of the batter that the cake turned out more like a pancake! If she doesn't remember, she'll be happy to hear the story from you.

Finding a subject of conversation with Alzheimer's patients can be tricky. Bringing up something a person excelled at or was known for is always a good idea . Let's say you're visiting your dear old neighbor, Mr. Wilson, whose garden was always the showplace of the neighborhood. You might be tempted to ask, "Mr. Wilson, do you remember your beautiful rose garden?" but it's even better to say "I often think about how much everyone in the neighborhood enjoyed your beautiful roses" This avoids the dreaded "Do you remember", and gives you and Mr. Wilson something pleasant to share.

I once learned that one of our patients, a man who never said much, had been an avid hunter and a great shot. Now, I don't enjoy talking about hunting, but one day as I was feeding him his lunch, I said, "Byron, I hear you're quite the marksman!" He looked thoughtful for a moment, then his face lit up with a grin, and he said, "Well, I can toss a can in the air and shoot it before it hits the ground". No one had ever heard Byron speak more than one or two words before that! He did remember, and without being put on the spot, he went on to happily share his memories of his marksmanship and his gun collection.

The message here is: When visiting a person with memory loss, try to avoid the "Do you remember?" trap. Instead, opt for phrases like "I was thinking about...." or "I've heard that you...." .

You'll be pleased with the results!

It's hard to accept that someone you know has essentially become a different person, living for the most part in his or her own little world. But understanding that this IS their world now, and being willing to join them in their world, instead of expecting them to conform to ours, can make everyone a lot happier.

Many visitors find it unnerving to see an Alzheimer's patient cradling and cooing affectionately to a baby doll. Some even openly disapprove. I've been asked, "Does she think it's a real baby?" Maybe she does, or maybe holding a "baby" just feels comforting. It's possible that dressing and caring for her doll simply gives her something to do. We don't know. While carrying and talking to a doll may not be something we do in our world, the important thing is that it brings happiness to her world.

Some patients think that they're still in their own homes, and that all the other people there are visiting them. As long as they're not trying to evict anyone, there's no harm in letting them think they're hosting the year's biggest party!

Still others firmly believe that they're in an entirely different place. One of our patients often thought that she was in a bus station. At those times, she was convinced that our common room, with people sitting, watching TV or visiting, was the bus station's waiting area. She approached the nurses desk (which she thought was the ticket booth) repeatedly, trying to buy a ticket to Danville, her hometown. We could have explained each time she came to buy a bus ticket, that she was in a nursing home, not a bus station. And she would have argued, refused to believe us, and been upset. Or, we could join her in her world and say that the next bus to Danville wouldn't be here for a couple of hours, invite her to have a seat, and maybe a snack while she waited. We chose to be in the bus station with her. More often than not, while waiting for her bus, she would strike up a conversation with another patient and forget all about the bus trip.

Sometimes,for safety or practical reasons, it's just not possible to join a confused person in his world. But when it is, and if it causes no harm, why not?

If you come to visit Uncle Charlie today, and he insists on calling you Susie, then he firmly believes that your name is Susie. You're not going to convince him that you're Pam. You could press the issue, and upset Uncle Charlie and yourself, or-- you could just let him call you Susie, and enjoy your visit. Susie's a nice name, after all. And who knows? Maybe next time you'll be Pam again.

Everyone has good days and bad days. This is especially true for people with Alzheimer's, but for them, the contrast between the good and the bad can be extreme.

On a good day, visiting can be a rewarding experience. A bad day can include anything from sullen silence to rude remarks. A patient may be pacing the halls, too agitated to sit still. Or, he or she may refuse to get out of bed, and object to getting dressed. A person might insist that he's leaving and walking home. There can be tearful episodes, yelling, even throwing things or trying to hit other people.

Sometimes a bad day is triggered by a poor night's sleep. Other times negative behaviors can predict an oncoming cold or illness. Too much activity or overstimulation can cause agitated behavior. But, many times, the only explanation is "it's just a bad day".

This is another time to remember not to take the behavior personally. The anger or tears are not caused by something you did, or because the person doesn't like you. Alzheimer's patients have lost the ability to communicate effectively. They can't voice their feelings and frustrations . Negative behavior is sometimes the only way they have to say they're feeling sad, tired or having discomfort. Sometimes, the presence of someone they know will be a calming influence. But there will be the occasional bad day when it's better to just cut things short, and come back another day. The good thing is that your friend or loved one won't take this personally, either. Next time you visit, the bad day will have been forgotten, and chances are you'll be greeted with pleasure again.

Seeing a friend or loved one slip into the grasp of Alzheimers is unspeakably painful. Dealing with the changes is a tough challenge. Those who cope best are the ones who try not to dwell on what has been lost, but to cherish what's left. The bad days will be heartbreaking; the good days will be bittersweet. Supporting someone through the course of Alzheimers will take all the love you have in your heart. It will be the hardest journey you'll ever take. But, every now and then along the way, you'll hear the voice of the person you knew speaking to you again. You'll see a sudden glimpse of the old smile you always loved. These are the moments to treasure. These are the moments that will get you through.