Archive for December 2013

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10 Mistakes I’ve Made While Visiting “My Ladies” With Alzheimer’s

Sunday, December 29th, 2013

I volunteer to visit three ladies with dementia at a local memory care facility. I’m embarrassed to say I’ve made many mistakes.

Here’s the list. I hope it may be of help to others.

  1. I didn’t think to explain to any of the ladies who I was and why I was there. Two were alert and curious enough to ask me. The third just seemed sort of confused about my presence.
  2. I gave Nancy (not her real name) three instructions in one sentence. When I told her I was there to visit with her, she asked me how we went about that. I said, “First we go down to your room, then we sit down, and then we visit a while.” (No wonder she didn’t want to visit with me!)
  3.  While we were walking to Nancy’s room I talked to her from behind, a clear “no no.”
  4. I didn’t observe that Nancy was getting seriously agitated when I played music for her and I didn’t stop playing it, as I should have.
  5.  I have asked each of the three at least once if they remember some specific person or event. That only confuses them and makes them feel bad if they can’t remember.
  6. I corrected Carolyn when she told me she didn’t have a daughter. She had previously told me about her daughter, so I reminded her of that. She was needlessly embarrassed.
  7. I consistently forget to address them frequently using their names. Using their names would help us develop a bond.
  8.  One day when I went to see Carolyn she already had another visitor. That woman told me to come in and I did. Carolyn became confused and I didn’t have the sense to leave and go back later. I should have left immediately when I saw how confused she was.
  9.  I just assumed that Ruth didn’t remember anything from our last visit, when I had given her a photograph of a rose. When I arrived the following Thursday I picked up that photograph and asked her where she got it. She looked a little annoyed and said that I had given it to her. Never more will I assume any person with Alzheimer’s doesn’t remember some specific event!
  10.  Finally, when Ruth asked me about her husband I made the mistake of telling her he had passed away, rather than using the generally agreed upon approach of telling a white lie and making up some reason he was temporarily gone.

 

People With Alzheimer’s May Still “Be There”

Thursday, December 26th, 2013

There was a lady with Alzheimer’s whom I volunteered to visit once a week at a local memory care facility. I’m going to call her Carolyn. Before my first visit the administration told me she loved Elvis. So I bought an Elvis CD and took it, along with my portable CD player, to the visit.

After introducing myself I said, “I understand you love Elvis.”

“Elvis?” she asked with disbelief. “Where’d they get that?”

“Well, what kind of music do you like?” I asked her.

She tried very hard to pronounce Tchaikovsky. She never did get it right but I understood what she meant.

So the next time I took Tchaikovsky’s Nutcracker Suite and played several selections for her. She was ecstatic. She smiled and tapped out the rhythms on her lap using both hands. She clapped enthusiastically at the end of each piece. It was a true joy to see her so happy.

Then Carolyn declined significantly. She was receiving hospice care and was always in bed when I arrived. Her eyes were usually closed, even though she was often awake. I talked to her but she never said anything back.

Nonetheless I kept playing the Nutcracker Suite for her every time. She showed no reaction whatsoever. I was frustrated but kept it up anyway.

Then one day I asked, “Do you like it?”

Her response was shocking to say the least.

She immediately opened her eyes widely and said in a loud, clear voice, “Very much.”

It was proof that she was still “there” – still aware of her surroundings even though she rarely acknowledged it and even though she was literally on her death bed. She died a week later.

People with Alzheimer’s – especially those in the later stages of the disease – may stop talking or making other clear attempts to communicate. Too often we assume they don’t know what’s going on around them. We think they don’t understand what people are saying to them or about them. My experience with Carolyn shows that’s not always the case.

 

What to Do When Your Loved One Asks You the Same Question Over and Over

Monday, December 23rd, 2013

I recently wrote about what to do if your loved one keeps telling you the same story over and over. Now I’ll write about what if they keep asking you the same question over and over.

I volunteer to visit three ladies with Alzheimer’s at a local memory care facility. One day I was visiting one who loved Elvis – we’ll call her Nancy. So I took an Elvis CD and a portable CD player along to my first visit with her

After I played a couple of songs, Nancy asked me, “What’s that machine?”

“It’s a CD player,” I answered.

“Where did you get it?” she asked.

“At Radio Shack,” I said.

“How much did it cost?” she asked.

“Around $50,” I answered.

“Do other people have one?” she asked.

“Yes,” I said.

Well, that was a lucid conversation on her part. But the interesting thing is that she immediately asked me the same four questions – word for word – three more times. Each time I gave her the same exact answers.

Many people with Alzheimer’s keep asking you the same question over and over. This can be very annoying – to say the least.

But if we try to find a way to stop them from doing it we will be very disappointed. They will not stop it. They cannot stop it.

It’s important to understand the reason for the repeated questions. It’s simply because they instantly forget that they just asked us the question (and what we answered). So each time they ask it’s as though it’s the first time they have ask us. And most likely it’s a question they feel they really need an answer to.

Had I expected Jean to be “normal,” I would have become irritated. But since I understood that she couldn’t help repeating all those questions, I just relaxed and patiently answered each one over and over.

My primary advice in this type of situation is to feel empathy for your loved one who can’t remember the answer to what must be for him or her a critical question. When you feel empathic I can bet your irritation will vanish.

Try it and see.

 

 

What If Your Loved One Keeps Telling You the Same Stories Over and Over?

Thursday, December 19th, 2013

When I went to see one of the ladies with Alzheimer’s I volunteer to visit – we’ll call her Ruth –  she told me a long story about how during World War II, the army used to arrange for young ladies to visit a nearby base on Friday nights to dance with the soldiers. She was one of the girls.

It was an interesting story. But the thing is that she tells me the same story every time I see her.

This could be annoying. If I wanted her to be “normal” I might have told her she’d told that story the last time and that we should talk about something else.

But nothing will ever make this lady “normal” so I had to reframe the situation. I realized this event must have been very important in her life.

I further realized that she repeated the story because she didn’t remember she’d told me about it before. For her, each time she told me was like the first time she’d ever told me about it.

So I decided to respond each time as though it was the first time I’d heard it. I listened patiently, made responsive comments at the right times and asked questions (to which I knew the answers from previous times) to help her remember all the details.

I learned not to be annoyed by her incessant repetition, but rather to use it as a basis for our conversations. I began to actually look forward to the “dancing” story, which she so loved telling me.

The lesson here is that if we can step into the world of people with Alzheimer’s we can truly enjoy being with them. It takes so little to entertain them. If they are still able to converse with you, just ask them to tell you a favorite story from their past – even if you’ve already heard it a dozen times.

And finally, remember that it isn’t always the content of a conversation that matters. Sometimes it’s just how much you enjoy talking together whether the stories you’re told are new ones or old ones

 

Advice from Leeza Gibbons, TV Personality and Caregiver: “Breathe, Believe, and Receive”

Monday, December 2nd, 2013

Breathe: Start by taking 10 purposeful breaths; breathing in sheer certainty that you are doing your best. Breathe out all the negativity that weighs heavily on you. This can change your physical and emotional state so you can better cope with your caregiver stress.

Believe: Now is the time to be an optimist. Know that your efforts will be enough. Believe that you can get empowered by others who have achieved this before you.

Receive: Everyone has limits. Know that real strength comes from knowing when to ask for help. When someone says, “Do you need anything?” say “yes,” and be prepared to tell them a specific way they could help.

Source: This is a shortened version of interview with Leeza on CNN, April 26, 2011.

Note: After Leeza Gibbons’ grandmother and mother died of Alzheimer’s disease, she decided to help other family members caring for their loved ones with the disease. She created Leeza’s Place, a group of facilities  for Alzheimer’s caregivers. She also wrote an outstanding book for caregivers entitled Take Your Oxygen First – available on Amazon.com.