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Yesterday on Your Caregiving Journey, we began our new monthly series on dementia care. Claire Day, Vice President of Constituent Services for the Alzheimer’s Association Delaware Valley Chapter, joined us to explain what Alzheimer’s is, its warning signs and to answer two questions from a listener. You can listen to our show via the player at the bottom of the post. (Note: Claire will join us on the fourth Tuesday of every month at 10:30 a.m. CT, 11:30 a.m. ET, 8:30 a.m. PT) to share tips and techniques for coping.)

Claire reminded us that Alzheimer’s disease is disease of changes and loss of function. It’s not that we can’t find our keys. It’s that we don’t know how to use the keys we’re holding. And, the disease changes who we are—our moods, our personality.

During our show, Claire also answered two questions from a listener:

1. My mother hasn’t got up and dressed in the morning on her own for several months. On Saturday morning, she was up and dressed and sitting in her living room (although not dressed properly, still up and dressed). Is this another “unexpected” in dementia?

2. On certain days my mother is so opposed to sitting; she wants to be doing something, feels as though she should be doing something. Physically because of a stroke, she is not able to. Is reassuring her unsettledness enough? I often feel like I should be entertaining more.

Do you have questions for Claire? Be sure to share them in our comments section, below, or by sending me an email.

Resources

• 101 Activities to Enjoy with a Person with Alzheimer’s
• 10 Warning Signs of Alzheimer’s disease
  

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• Losing My Cool Over Research (caregiving.com)
• I’m Enough, So I’ve Had Enough (of the Doritos) (caregiving.com)
• Research Opportunity for Family Caregivers of Persons with Dementia (caregiving.com)
• Exemplary Programs that Support, Educate Family Caregivers Honored (caregiving.com)
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• Early diagnosis helpful in slowing early-onset dementia (knoxnews.com)

If Robert doesn’t keep his curly locks cut, he tends to start looking like Einstein with his unruly head of hair. Add “helmet head” to it and he needs a sprucing up every now and then. I decided to add a mustache trim to this trip since the last time his mustache was trimmed I did it (see above re my ability to cut in a straight line).

Before . . .

The appointment was at the local JC Penney because Robert is treated well and there is easy access in and out. Parking is available in the shade (a must when it reaches 100 degrees as it did yesterday), the elevator is not too far from the entrance and the salon is just off the elevator. Add to that the availability of restrooms across from the salon and we have everything covered.

Robert had an appointment with a new stylist which puts my protective shield up a bit since I don’t know if she’ll be uncomfortable with a disabled person and I tend to prepare for the worst.  She started off making us wait 15 minutes (tick tock, people, we have a specific window between med times and thought three hours was more than enough for a 45 minute hair cut). She apologized profusely so I decided against holding a grudge, writing a letter to her supervisor and getting her fired. I suppose I can just be here for Robert’s haircut and not try to change the way Penney’s does business.

While Robert settled into the shampoo chair, the stylist asked me, “What happened to Robert?” Great question and I appreciate when people ask instead of staring in awkward silence. After answering, “He has epilepsy” and feeling the ears perk up of the other stylists and customers, I thought this was a great opportunity to talk about epilepsy and maybe teach a thing or two in the process.

While I sat congratulating myself for wanting to seize this educational opportunity Robert beat me to it.

Robert told his story of how he has had epilepsy all of this life but that it was diagnosed when he was seven. “At the age five, I started seeing things in the colors of red, blue and green.” He went on to describe his brain surgery on January 4, 1990, and how the doctor kept him awake during the surgery and showed him flashcards and asked questions during the surgery.

I’ve heard the story several times but was happy he had a new audience (the stylist who showed genuine interest and the others who pretended they weren’t listening). As I sat half-paying attention to the conversation happening across the aisle from me, (ever on alert in case he has a seizure) while checking messages on my smart phone (otherwise known as my addiction), I heard Robert say, “. . . and then the Lord spoke to me when I was 15 and told me it wasn’t my time and I was here for a reason.”

That’s new.

I set my phone down and listened to him tell Salita the Stylist about falling into a swimming pool while at our dad’s apartment and being in a coma for three days. She looked to me for verification and I confirmed the story was true. The details are fuzzy, even to me, but Robert most likely had a seizure and fell into the pool. Our dad pulled him out and Robert was in a coma and actually near death for a while. When I got the call, it was the first (and only) time in my life I was hysterical. Even though he and I weren’t close, I couldn’t imagine losing my youngest brother at such a young age.

I always wondered when Robert became so religious and couldn’t figure out where it came from. I guess if God speaks to you and saves your life, you listen.

Salita shared with Robert that she too was religious. She finished Robert’s haircut, trimmed his mustache and even trimmed his rogue eyebrow hairs. By the time the appointment was over, he was looking pretty spiffy and feeling happy to have made a new friend.

Looking spiffy!

On our way out, we made a quick stop in the jewelry department to resize his watch (since he’s lost a little weight) and then made our way out into the heat toward the shady car. Once I got him in the car, loaded his walker into the trunk and got in to drive him home, I noticed the familiar sight: head bent forward, slightly to the right, motionless except his right hand twitching and turning. I strapped his seat belt around him and waited a minute until he popped his head up, looking around to see where he was and greeting me with his usual, “Hello!”

Hello, Robert.  I hope you enjoyed your haircut.

“Hi, Trish. How are you doing?”

Great. How are you?

“I’m doing very well. And you?”

Our conversations always start the same but tonight I couldn’t go in circles with him—I wanted to get to the good stuff:  Prom!

Robert, you had Prom today.  How was it?

“It was really good.” Yay! He’s added a “very” and a “really” to his normal responses. He must have had a blast.

Did you wear the clothes I set out for you?

“Yes I did—No, actually I didn’t wear anything!  Just joking!” Oh, Robert. You and your humor. . .

Did you have fun at the Prom?

“It was pretty nice.”

Did you dance?

“I danced a little.” My heart skipped a beat. I picture him on the dance floor moving his walker back and forth.  I need details . . .

Did you dance with someone?

“Yes.”  Oh, I see.  I have to drag it out of him.

Was it a girl?

“Yes. Her name was Kathy and she was older than me.” Ah, an older woman.

“She asked if I would dance with her.” Ooooh.  I guess it pays to be the new kid.

Then what happened?

“We voted for . . . to give them a . . . “ I helped him a little since I knew where he was going with this.

Did you vote for a King and Queen?

“Yes.  And they got a crown.”  What a special day for all of them! I know how much work went into planning this event. The memories created today are so wonderful for Robert and his new friends.

“I voted for Kathy and she won.” Hey, I didn’t realize he was dancing with the Prom Queen. The new guy isn’t doing so bad for himself.

Who was the King?

“Not Richard.” I’m a bit puzzled.

“I voted for Richard.  Steve won.” Ah, I see. Well, we can’t always pick the winners.

Anything else happen?

“I had a special lunch.” Robert begins to giggle.

“And then I ate my regular lunch.” His giggling doesn’t stop and I start to giggle with him.

Once our giggles die down, I tell him how happy I am he had such a good time and that he is making so many new friends.

I had one more question to ask him: How many Erics are there?

“Two.”

Mystery solved!

On Day 2 Robert again told me he met an “Eric” in the van who also was nice and polite. I don’t know if there are two Erics or if, as Denise suggested, there is one Super Eric.

Either way it’s a win and Robert has a new friend (or two?).

Tomorrow is “Prom” at Program and Robert has his Sunday Best all laid out for him. I confirmed he would get a shower tonight so he would be smelling his best. He was happy that his bandage has been taken off his head (and I’m happy his laceration is healing properly).

I am so relieved that Robert is busy during the day and talking to people and making friends and having fun.

I would be lost without my friends and am grateful Robert is starting to have a few of his own.

I am also grateful to all my new friends from this site and want you all to know how much I appreciate you and care about you and what you are going through.

Nothing was going to prevent me from getting Robert to Day Program today. Not a visit to the ER, not a bandage still wrapped around his head, not the van transport not being set up.

I arrived early to Robert’s New Home to be sure he was ready to go just in case the van transport arrived at 8:00 a.m. (their arrival was still unconfirmed as of 7:00 this morning). I knew we had a two hour window of time to check into the Day Program so decided to allow them time to show up but still allow me time to take Robert if they didn’t show up. (I secretly hoped they wouldn’t show so I could take Robert on his first day).

Robert was finishing up in the bathroom when I arrived. The Aide said he had already eaten breakfast, taken his medication and had a lunch packed and ready for him in the fridge. Oops – I don’t have a lunch bag for him! (Add that to my list along with soda and razors).

I packed a “just in case” bag (protective underwear and a change of clothes) and waited for him to get out of the bathroom. Robert finished up and walked out to greet me. His smile was enormous.

Are you ready for Day Program, Robert?

“Yes, I am.” The grin got bigger.

I explained that we had to wait a few minutes to see if the van would show up. He stared at me like he was considering if this was a good idea or not. I suggested we play one game of cards and then we would go. He continued to mull over what I was telling him. I assured him we wouldn’t be late.

“Okay.” Sheesh. I’ve never had to talk him into playing cards before!

We finished the game in record time and Robert stood up. He’s ready to go.

Robert got into the car and asked “How long till we get there?” Someone is excited!

We arrived at the Day Program and I walked Robert inside. He was still grinning and I was going over the essentials: here’s your lunch, wear your helmet, House Manager will bring you your meds, I will pick you up at 2:30.  We walked in the door while I worried that the New Home hadn’t communicated his starting today. The worry was short-lived as Robert was greeted by name by two staff members.

I didn’t think his grin could get any bigger but it did (his cheeks are going to hurt!). Do you need any paperwork from me (hopefully not since New Home didn’t send any with me)?

“No, we have a binder on him.” Oh my god, I’m in love.

All of a sudden, it felt like the first day I took my daughter to kindergarten. I teared up and gave Robert a hug and told him to have a good day. He said his usual goodbyes (“I love you” and “God Bless You”) and walked off with the staff.

I almost cried when I picked him up too. How was your day Robert?

“It was very good.” His grin was still there. He was bursting with excitement and told me all about his day (“I saw a movie, we had lunch, and then saw another movie but didn’t see all of that because you came to get me.”).  As we left, the staff asked him how he liked it and, still grinning, told them “it was very good.”

On the car ride home he told me about a person he met and about the “prom” coming up on Friday. “I have to wear my Sunday best.”

“I want to wear my black pants and a nice shirt.” (I thought I was the only one who planned my outfits days in advance). I assured him I would find his black pants and a shirt for him and he would look very nice.

Before getting to the New Home, we stopped for a chocolate shake and a lunch bag.

Robert had a very good day.

Robert needs some activities!  He was falling asleep so much while signing his name, I made him stand up and told him to “move your booty” to get the blood flowing.  (He didn’t move his booty but he did put his hands in the air and move them around).  It woke him up long enough to get the documents signed but he never admitted to being tired (oh, Robert, you and your terrible self-reporting!). 

Of course, things started out a little hectic.  I arrived to Robert’s New Home to find him in the bathroom sitting in a shower chair at the sink in a puddle of water (it was definitely water – I smelled it) and his jeans partially soaked (I didn’t smell those but will think the best and assume it was water too).  After drying the floor and replacing an entire roll of soaking wet paper towels (smelled them – it was water), I left him to finish shaving. 

I tried to be as helpful as possible to get Robert to move along since we had a 9:00 a.m. appointment.  He managed to finish shaving and brushing his teeth with time for us to play a game of cards (he won – typical).  As I anxiously checked the time every couple of minutes, I was told the woman who was supposed to be attending with us was taking a sick day today.  New House Manager with the Reassuring Voice would be going with us instead.  That’s fine but we’re going to be late because she’s not even at the New Home yet.  I decided that I would take Robert and meet New House Manager at the interview.  (We still were 15 minutes late.)  Neither one of us had any paperwork and we had no idea who we were meeting (the woman who was sick had all that) but, once at the interview location, we found who we were supposed to meet with and I was able to fax over the missing paperwork later in the afternoon. 

It was messy but it got done and Robert may be going to a Day Program starting Monday!  It’s not confirmed or definite (which is what I prefer) but I’ll take it. 

Now let’s hope they play Bingo at Day Program so Robert will stay awake and I won’t have to tell him to shake his booty!

Joni shared the following book and products recommendations:

—”Keep Your Brain Alive” by Lawrence C. Katz, Ph.D. & Manning Rubin features 83 “Neurobic” activities to help prevent memory loss and increase brain activity.

—”Sherlock,” a memory card game, is recommended for persons ages five to 99+.

—”Juggling Scarfs” provides a mild cardio activity while stimulating the growth of grey matter. This would be a great activity for children to enjoy with your caree.

–”Pantago” sounds like a game in which my nieces and nephews would kick my butt. Joni did give us permission to cheat when we first learn this one.

–Smartmouth” is a word game that would be fun for the entire family.

The recommended games and activities are all priced under $25. While we’re lucky to have four store locations in the  Chicago area, the website offers all the products available in the stores, as well as the ones mentioned above. You also can email a brain coach for help in choosing a game or activity that will be appropriate for your caree.

Our show ended with a suggestion from Joni as to how we can keep our brain in good shape: Try something new every day, even if only brushing your teeth with you non-dominant hand.

Have fun! And, if you purchase a game, let us know which one and what your caree thinks!

Related Articles

• Finding New When Old Is Robbed (caregiving.com)
• The Memory Ensemble Debuts in Chicago June 21 (caregiving.com)

Some suggestions we discussed during the show include:

1. Move–exercise can help you both feel better. Consider the Sit and Be Fit exercise videos; visit here for more information. And, Wii Fit brings the bowling alley to your living room.

2. Consider a trip to a local museum. Call ahead to ask staff for suggestions and ideas to make the visit a pleasant one for you and your caree. Learn more from the MoMA Alzheimer’s Project; New York City’s Museum of Modern Art created a program for persons with Alzheimer’s disease.

3. Organize a closet, drawers or photos. When you organize photos, be sure to tell their story–who, when, why.

4. Get handy–knit, bake cookies (send me a few so I can sample), string beads. Puzzles and crosswords can be a great joint activity. See Memory Jogging Puzzles, made specifically for those with dementia.

5. Consider buying a baby doll, which can be soothing and engaging, for persons in mid to late stages of Alzheimer’s. The Alzheimer’s Store has a selection of dolls and other activity ideas.

What activity ideas do you enjoy with your caree? Please share in our comments section.

Related Articles

• Must I Nag? (caregiving.com)

During out discussion, Susan and I talked about the importance of objective communication with a person with Alzheimer’s disease. Meaning, you don’t take what’s said (or done) personally. And, you don’t react from that personal place. You remember its the disease and its process. And, because you remember that, you remain calm and detached in how you communicate during difficult moments.

And, then it hit me: What you really do is dance away from the drama of the disease.

Because that disease will add more drama to your relationship that the strongest of  toxic behaviors. It will talk back, push your buttons and defy your requests–all at the same time.

The next time you and your caree seem locked in a battle of the wills, tell yourself: Dance away from the drama of the disease. Then, put on your favorite tune and do just that.

Related Articles

• Tell Us: What Are You Withholding? (caregiving.com)
• Alzheimer’s From the View of a Teenager (caregiving.com)
• A Farewell to Eunice (caregiving.com)
• Close Caregiver Relationship May Slow Alzheimer’s Decline (caregiving.com)

Products made specifically to occupy a care recipient so a family caregiver can get a break are available from several companies, among them:

Collector’s Choice Music: Purchase your care recipient’s favorite music, including Big Band, classical/opera and soundtracks. Also available are old radio shows. Visit www.ccmusic.com or call 800-993-6344.

Innovative Caregiving Resources: Researchers from the Gerontology Center at the University of Utah concluded that video respites work-and developed their own series as result. The videos are now available through an unrelated company, Innovative Caregiving Resources. Videos cater to a wide range of care recipients; in “Ladies…Let’s Chat” female care recipients will enjoy a visit with Diane and her  grandchildren and in  “Lunchbreak with Tony” male care recipients take a lunch break and discuss first cars and stick ball.  Other videos are geared toward specific ethnicities (Hispanic, African Americans, Jewish) and toward holidays, such as Christmas. For more information, visit www.videorespite.com or call 1-800-249-5600 .

NASCO: Its online catalog, at http://www.enasco.com/senioractivities/, features products to captivate your care recipient. You’ll products for persons with Alzheimer’s, as well as puzzles, games, sing-a-long videos and arts and crafts. You’ll want to peruse this company’s catalog and/or web site; it offers great ideas on how to keep you care recipient occupied with meaningful activites. Call for catalog: 800-558-9595.

Alzheimer’s Store: You’ll find products that keep your care recipient occupied and safe. Products are categorized by stages (Early Stage, Middle Stage and Later Stage), wandering, safety, forgetfullness. Visit www.alzstore.com or call 800-752-3238.

If we’ve missed any resources, please be sure to share!

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