Ten Tips From Dotty

In this article they used a word I like: The Deeply Forgetful!

Dotty
Went to Heaven on May 25, 2012

Dotty's Ten Tips for Communicating with a Person Living with Dementia 

1. You know what makes me feel safe, secure, and happy? A smile.
2. Did you ever conside this? When you get tense and uptight it makes me feel tense and uptight.
3. Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
4. Please try to understand and remember it is my short term memory, my right now memory, that is gone -- don't talk so fast, or use so many words.
5. You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of castor oil. So I'll just say No to be safe.
6. Slow down. And don't sneak up on me and start talking. Did I tell you I like smiles?
7. Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don't have my attention, or confuse me? I am going to sayNo - count on it.
8. My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
9. Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don't come back and tell me you are sorry, I won't know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
10. You talk too much -- instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.

How Many Times?

How often can I cry out to the mountains, pleading
When its weight in rocks is my life's daily pain?

Screaming NO NO NO in my sad, lonely silence
Until my throat and breathing cries NO NO NO.

Overwhelmed. Devastated. Exhausted. Sad.
Tears of blood flowing, washing down my face.

With my emotions which are no longer valid to him
But still oh so valid for me, oh so valid, oh so real.

He does not cause this, but I am brutally caused.
He does not control, this but I am cruelly controlled.

Not understanding even the words I very carefully use
Nor the explanations I still try to give, to help, to share.

We sit at the restaurant table with our closest friends
I hold his hand, stroking, trying to help him be involved.

Love cannot describe the immensity or the agony of my love
That no longer soothes but only torments and tortures.

How often can I cry out to the mountains, suffering
When its weight in rocks is my life's daily pain?

.

BECAUSE

Today, surreptitiously observing, I read a cookbook while Gregory was making his breakfast. He was trying to use the "map" I created to help him with the task. It was not a success. On and off he has been able and not able to make his own breakfast. Most often it was 60-75% correct, me helping with the rest. Several times I have decided that it was time for me to take over making his breakfast BECAUSE it was easier to just do it for him compared to trying to explain what he needed to do. Most often the explanations didn't work so I did what needed to be done. Several times without saying anything I let him try again and several times did so BECAUSE he asked to try again.


Here is the detail of why I have once again decided that I should make his breakfast. It is somewhat of a complicated job but BECAUSE he likes his breakfast, "throwing some toast" at him would never do. BECAUSE he cannot accomplish the "routine" it is now one more thing I have added to my load. 


Maybe after watching him this time I am ready to accept this next responsibility. I told him that maybe I should take over making his breakfast BECAUSE in watching I noticed that he was having a lot of difficulty and that it was painful for me to watch his suffering through the process. He agreed and said, "Yes maybe it is time." This is the first time that he has agreed with such commitment.


THE DETAIL: Tea
He got out the loose tea but didn't know what to do with it BECAUSE there was no tea ball. He figured out what was wrong, got the tea ball and filled it with the loose tea. It still didn't seem quite right to him BECAUSE he had forgotten to put the usual placemat on his tray. He was still confused about the tea BECAUSE what he was missing was a mug in which to put the tea ball. I gently suggested that he needed a mug for the tea. 


THE DETAIL: Cereal
He got a mug and cereal bowl out of the cabinet and put them on the tray. The tea ball never got into the mug BECAUSE he was distracted when he next got a box of cereal from the cabinet and after studying it for a while, instead of pouring a portion into the bowl, he scooped with his hands.


THE DETAIL: Fruit
He got the cantaloup out of the refrigerator, cut three pieces, cleaned the seeds, and sliced the melon into his cereal. No help need here.


THE DETAIL: Bran Buds
Next he got out the plastic box filled with Bran Buds. He opened the box, handled the scoop, looked at the box, handled the scoop. Tried to scoop the box lid and finally put the box down BECAUSE it wasn't working. Next he noticed the label (which was turned away from him) on the box and commented to himself, "Oh that makes it easier." Maybe he didn't realize that he did in effect have the bran buds in hand? So he picked up the box, put the scoop back into the box, and closed the lid BECAUSE he thought he had added some to his cereal (which he hadn't.) I intervened.


THE DETAIL: Turkey Sausage
Next task was to microwave the turkey sausage. He remembered to get a plate this time, a paper towel, and a package of sausage out of the freezer. He unwrapped the sausage and placed them on the plate. 


It wasn't quite right BECAUSE he had put the paper towel down on the tray and by now had forgotten that it was supposed to be on the plate with the sausage. I mentioned the paper towel, he realized  that it was missing, found it, folded it in half and placed the plate into the fold BECAUSE he really didn't understand the necessary order. 


I helped him place the sausage between the folds of the paper towel and then put the paper towel on the plate. He asked, "How long?" BECAUSE after countless years of making his own breakfast sausage he didn't remember. "Two minutes." He was able to follow through. 


When the sausage had cooked, he took the plate out of the microwave (which is almost but not quite too hot to handle.) He danced around with the hot plate and then, BECAUSE he finally noticed that the placemat was not on the tray, didn't know what to do with the plate. He asked my help but I just watched. After a while of "dancing" he finally placed the plate on the counter. 


THE DETAIL: Putting It All Together
He just stood there not knowing what to do next. I got up and verbalized what I was doing, BECAUSE somehow it seems to defuse the situation, as I fetched the placemat and put it on the try, filled the electric tea kettle (which he had totally overlooked) and turned it on, put his cereal bowl and mug in place, put the tea ball into the mug, put the sausage plate on the tray, got him a spoon and napkin and finally filled his mug with boiling water and replaced the kettle. End of story, beginning of breakfast.


The detail is important to share with you BECAUSE it shows how complicated the task is for Gregory while maybe not so much to you or I, how easily it is for him to get distracted, and how difficult it is for him to follow through with multiple-step processes.