Sep 1, 2011

Alzheimer's Caregiver Heartbroken (Kate)

I am so heartbroken when every afternoon he asks where his wife is ...

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's caregivers often feel heatbroken

I'm ready to dig in on this one. I know from first hand experience how our reader Kate might be feeling. Not the same problem but similar. Heart ache, sore stomach. This happened to me for a few years before I found the solution to our problem -- almost by accident.

One of the first things I want to suggest is that anytime you have a heartbreaking problem with someone living with Alzheimer's is that you get a copybook, start taking inventory of what is going on at the time of the problem, and writing down any and all observations.

You must define the problem, when it is happening, what is going on before it happens, and what happens after -- if you want to understand the full dynamic of any problem.

Our reader Kate wrote this comment under the article, Alice in Alzheimer's Land.
... I am so heartbroken when every afternoon he (her husband) asks where his wife is, even though he knew it was me in the morning and will again in the evening. He gets so angry when I say I am his wife. And he tells me to leave his house. I never leave and after an angry hour or two he knows who I am, but I wish I had a better way to deal with this.

My mother told me to get out hundreds of time. She would also go into her room, curl up in bed, and refuse to come out for 20 hours or more at a time. In order to get her to eat, I had to put her food on the kitchen table and leave the room. She would eat, and then go right in her room. Finally she would come out.

During that time, my heart hurt, my stomach hurt, my stress level was soaring, and I didn't know what to do. I felt helpless and alone.

Finally, I noticed a pattern to her behavior. She would go in her room around 8 PM on a Saturday night, and come back out every time around 7:05 PM on Sunday night. It was so consistent that I would be sitting in the living room by 7 PM, watching the clock, and waiting for her to come out. When she came out, she acted like nothing had happened. And, she wasn't mad or angry with me.

Kate, my first question would be, does this happen around the same time every afternoon. Next, does it happen every day? Does the time this happens change during the different seasons of the year? Does the amount of light, bright sunny day, dingy cloudy day, change the time? I am suggesting that you start writing down the time each day.

Next, what is your husband doing the hour, or hours, before this happens. Is he sitting doing nothing? Something? Is what he is or isn't doing similar every day?

Do you have set pattern, or routine, to your day?

When he comes around is it an hour, two hours, or almost the same amount of time each day. So my question here. Does it start around the same time each day? End around the same time each day. If the times vary. How long does the episode last? From start to finish. Similar amount of time each episode?

Is there any thing you might be doing that shortens the episode. I am asking, on any particular day, is there something you do that ends the episode, or brings him back.

The only way I know to get a good handle on this is to start taking notes each episode, each and every day. Put the day and date on each observation. Log the time and duration of the episode. Log what he is doing before this starts, and what he does immediately when it ends.

Kate, you want to see if you can identify a discernible pattern. You need to get a good handle on what is happening in the hours before it happens, during the episode, and in the hours after the episode.

Don't stop there. Use your copy book to write down what he likes. Things he likes to do (if any). Things he likes to eat. Things that make him happy, angry, sad. When he appears dull or "not there" what has he been doing, or not doing?

Finally, try to spend some time each night when you can sit in a quite, dimly lit place, and in comfortable chair, and write down on a clean sheet any thing that comes out of your hand. Let you mind wander. Anything goes. Write it down. If necessary start by doodling.

Kate, you cannot keep track of everything I am suggesting here in your mind. It has to be written down each day, and for an extended period of time. All of this information needs to be organized and analyzed over time.

And now to the near term solution.

Kate, the first thing I am going to suggest is that you completely change the routine during the time that this is happening. If possible, my first suggestion is to get out of the house. I often use Walmart to accomplish this mission. If your husband can't walk, get him into one of those mobile shopping carts. If possible I want you to get out of the house about 30 minutes before this usually happens (if their is a pattern), and I want you to stay out as long as possible.

Go visit a relative or friend. Go get an ice cream cone at McDonald's and sit outside if its nice, if not, inside. If outside, buy some french fries. Flip a few french fries on to the ground. Don't worry a bird is going to come along and grab them, sooner or later. Birds like to eat around 4:30 in the afternoon.

See if you can arrange for someone to call each day well before the episode happens. Have them say, your husbands name, then can I talk to your wife Kate. So like this. Jim, its Bob, can I talk to your wife Kate. I know this sounds crazy, and it may or may not work, but that is what I would do. Reinforcement from others that you Kate are his wife. You have to break the pattern of him not knowing you -- one way or another.

Finally, you have to keep your husband as active as possible in the time leading up to the episode. Don't fall off your chair. Buy a repeat parrot. Put that parrot close to your husband so he can see it (about a foot away). Give the parrot a name. Our parrot is named Harvey. Kate you talk to the parrot too. If you like to sing, sing to the parrott. Don't worry, you will get the hang of it with a little practice. Get your husband to talk to the parrot.

Get the copy book. Start taking notes. Make observations. Be patient.

Later on you will create the just right routine (pattern) that gets you over, under, around and through the ugly period.

One way or another it will happen.

Of this I am confident.


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 5,000 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room