Alzheimer’s: In This Moment…

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A good day… always treasured.

It’s been a long time since I’ve written a purely stream of consciousness post, but I’m in that kind of mood.

This week has been emotional, and I’m not sure why. Maybe I’m extra tired or maybe it’s a particularly strong jolt of “reality” hitting. I miss my mom more than words can say. So much has happened, so much I wish I could share with her over a cup of tea or glass of wine.

I try not to question things, but Alzheimer’s is a real “head-scratcher,” isn’t it? I just can’t make sense of any of it. At all. Why? Just why? Why must so many people suffer its wrath? Is there a purpose, and if so, someone please fill me in!

I received a message from a friend tonight, regarding his mother who is struggling with dementia.

My response, pure stream of consciousness with no filter. In this moment.

“I’m sorry… It just sucks – no two ways about it. I’d be lying if I didn’t say I was #%&$ing *pissed off* that “it” stole my mom from me – I should have shared my 40’s with her and my 50’s for that matter. I always imagined us having a ball, traveling, etc., for many, many years after her retirement. But it wasn’t meant to be, I guess. I’ll just never, ever understand the unfairness of this disease. I wish I could tell you it gets easier… It doesn’t get easier, but I will say that once I got to a point of true acceptance, it was less difficult – if that makes any sense. That’s what my piece in Chicken Soup for the Soul is about, actually. Acceptance. But it took me way too long; so much wasted time. Just enjoy the time you have with her as much as you possibly can. It is what it is. Go to her world when she can’t come back to yours.”

It is what it is. In this moment.

Dementia Activities: Six Options to Encourage Engagement

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As dementia progresses, it becomes challenging to find activities that encourage mental, emotional, and sensory stimulation. At the same time, we are often in search of ways to connect with our loved one when conversation is no longer an option. Possibilities are as wide and varied as one’s imagination, but here are a few ideas to get you started.

Photographs & Picture Books

My mom enjoyed looking at photos, so I always kept a scrapbook and some photo albums on hand. Later, I added a digital frame that continually scrolled through favorite photographs. Those pictures provided so many smiles, and I have fond memories of sitting next to her on the sofa flipping through the books. It’s impossible to know whether she recognized the people in the pictures – or whether they triggered any memories, but I do know they brought her joy in those moments, and that was the important thing.

Coffee table books full of large colorful images are also a nice option. Think about some of your loved one’s favorite things, and find a book on those topics. Children and animals are always a popular choice, but other potential topics include travel/scenery, cars, food, sports, and many more.

A few examples (all available on Amazon) include:

Dolls & Stuffed Animals

There was a woman at Mom’s first assisted living facility that had a profound and lasting impact on me. She had advanced dementia and struggled to speak. The woman was confined to a wheelchair, and every time I saw her, she was holding the same disheveled baby doll.

It was a poignant sight, and I recall feeling so sad for that woman. At the time, my mom was in the mid/moderate stages of the disease, so thinking of her with a doll wasn’t something I could even comprehend. She would never get to that point…

But, alas, she would and she did, yet when one of the caregivers asked if she could give Mom a doll, I was caught off guard. I remembered that woman from several years back and realized we had now arrived at that place in our journey – a place I never dreamed we’d be.

Mom immediately fell in love with her Dora the Explorer doll. The initial discomfort I felt dissipated instantly as I watched my mom’s genuine, heartwarming interactions with Dora. I was continually astounded at the delight and enjoyment the doll brought.

Dolls and stuffed animals allow our loved ones the unique opportunity to give care instead of receiving it. They also offer a distraction while providing positive sensory stimulation and they can even trigger memories. While there are expensive life-like therapy dolls on the market, in my experience, a regular doll works just as well and costs much less.

Fidget Quilts & Fiddle Boxes

Fidget quilts use a variety of colors, textures, and objects to keep busy hands occupied. Some quilts feature zippers, buttons, and Velcro, but the possibilities are endless. Many people design quilts around their loved one’s pre-dementia interests.

A “fiddle box” is a similar concept; simply a box (or basket) filled with items that provide a variety of tactile experiences. You might also consider your loved one’s hobbies or interests when putting this together. Ideas: buttons, ribbon, shoelaces, keys, marbles, jewelry, photos, small bits of pipe or safe small hardware items, various size paintbrushes, cookie cutters, measuring spoons.

How about a Busy Hands Fidget Apron or a handyman version for the gentleman in your life? Or if neither one of those strike your fancy, consider a Twiddle Muff or a sensory cushion. The Internet is overflowing with creative ideas, and Pinterest is an excellent starting point.

Art

According to the folks at Cognitive Dynamics, “Art therapy is the deliberate use of art-making to address psychological and emotional needs. Its benefits include fostering self-expression, enhancing coping skills, managing stress, and strengthening a sense of self. This translates into improved communication, behavior, and cognition.”

When the ability to communicate verbally is gone, art is lovely method of self-expression and creativity. Like music, art brings people together, and it doesn’t require a lot of fancy materials or special skills. Start with some heavy paper or card stock, a basic set of watercolors and a paintbrush, colored pencils or markers – it’s that simple!

Clay is another fantastic way to encourage creativity, interaction, and hand-eye coordination. I recommend good old Play-Doh since it’s brightly colored and more pliable than some of the modeling clay on the market. Combine the clay with a rolling pin and cookie cutters and you’ve created a form of reminiscence therapy for someone who once loved baking cookies!

Puzzles

My mom loved puzzles; we always had one going during the winter months. However, by the moderate stages of Alzheimer’s, large jigsaw puzzles overwhelmed and frustrated her. I hesitated to buy children’s puzzles, which had fewer (and larger) pieces because the designs were intended for kids. She was declining, no doubt, but still, I was afraid the children’s puzzles might be degrading in her moments of clarity.

Now there are puzzles designed specifically with dementia patients in mind. Max Wallack’s non-profit, Puzzles to Remember has partnered with Springbok to create puzzles with 12 or 36 large pieces that are much easier for Alzheimer’s patients to manipulate. Themes are adult-friendly, colorful, and pleasing to the eye. The puzzles provide a great way to stimulate cognition while offering your person an opportunity to achieve success!

Sorting & Organizing

Providing a loved one with sorting and organizing tasks is another beneficial way to keep dementia patients engaged and active. On a recent visit to a care facility, I observed one of the residents organizing the newspaper – apparently a daily ritual. Each morning, caregivers take apart the paper and lay the sections out on the kitchen table. With no prompting, the woman sits down and organizes the mess just perfectly, laying each section on top of the one before it about an inch below the last, creating a fan or stair step like pattern.

Consider using brightly colored marbles, several different kinds of fruit, socks, silverware, or various hardware items, such as nuts, screws, and washers. It makes little difference how well these things are sorted; the idea is to keep hands and mind busy, and help your person feel a sense of purpose.

Proponents of the Montessori method for dementia suggest these types of activities can reduce aggression, agitation, and other negative behaviors, improving quality of life.

Follow Their Lead

If you’re looking for other ideas, pick up a copy of The Alzheimer’s Creativity Book, by Jytte Lokvig, Ph.D. The book is full of suggestions to get the creative juices flowing, which in turn improves engagement, provides positive reinforcement, and promotes an overall feeling of well being for your loved one.

As you consider activities, remember this is not a “one size fits all” proposition. There are few things more unpredictable than dementia. Depending on the time of day, level of agitation, and mental status, preferences may vary. In fact, some days no activity is the right activity. Most importantly, don’t force the issue. The key is to offer options, then follow your person’s lead. In the process, you’ll create some extraordinarily beautiful moments of joy.

Please consider sharing your own experience or a favorite activity by leaving a comment!

 

 

 

Get Better: Sign Up For a Free 1-Month Premium Membership

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If you’re a caregiver, you’re likely juggling your caregiving role with managing a household, being a mom, and holding down a full-time job. Now there’s a service that can help manage your family’s healthcare needs, easing the stress in one important area of your life.

While there are an increasing number of smartphone apps designed to simplify scheduling and record keeping for caregivers, Better is unique. Developed in partnership with the Mayo Clinic, Better combines an iPhone app with a concierge service offering 24×7 “live” healthcare assistance to subscribers.

Premium members have access to:

  • A personal care assistant (a live human being!) to help you navigate the healthcare system, locate providers, make appointments, develop a wellness plan, set up mail order prescriptions, and demystify insurance plans and medical bills. The advocate will even lobby on your behalf when issues arise.
  • Expert articles and tips customized to meet your specific needs.
  • Tools allowing secure storage and sharing of health records for the entire family.
  • Mayo Clinic nurses 24x7x365 (via phone).
  • A “symptom checker” to help identify what might be wrong and suggest appropriate next steps.

In the interest of full disclosure, Better is not designed as a dementia-specific tool. However, the service has the potential to simplify healthcare for you and your entire family, thus making your life as a caregiver a bit easier. How many times have you called your physician’s office with a question only to be put on hold, directed to the nurse’s voice mail, or told someone will get back to you in 24-48 hours? Better offers another alternative.

I’m excited to share with you that our friends at Better are now offering a free one-month premium membership to readers of The Long and Winding Road. To claim your membership, simply click here. You can also register from the main page, but please use referral code: bettercarealz

Stop back and leave a comment letting us know about your experience – I’d love to hear your thoughts. Could concierge services become the norm as our population ages and the healthcare system becomes increasingly challenging to navigate?

 

 

Caregiver Coping Strategies: Making More Time for Moments That Matter

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A big “thank you” to Mara Botonis for her 3-part series entitled,  In this final installment, Mara discusses a topic near and dear to my heart – Making Time for Moments that Matter. As caregivers, we’re often so overwhelmed with details, logistics, and never ending to-do lists that we lose sight of what’s important.

Years ago, my daughter gave me a copy of the book Creating Moments of Joy, by Jolene Brackey. The book reminded me that despite the hand we’d been dealt, I could still create beautiful moments of joy for my mom (and myself). You see, dementia is about moments in time; it’s the ultimate lesson in appreciating the present and “being here now.”  While your loved one may not recall the experience tomorrow (or even in an hour), in the present moment, he or she is happy and that’s all that matters.

Mara Botonis is the author of When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Careand is a strong proponent of person-centered care.  You can learn more about her work at http://biographybasedcare.com

 

Caregiver Coping Strategies Part 3 of 3: Making More Time for Moments that Matter

by Mara Botonis

As a caregiver, so much of your day is necessarily about the tasks, the “to-do” list. It’s normal and completely understandable that those day-to-day, “have to do” tasks have become the day’s primary focus.

Some family caregivers wake up each morning with a prioritized plan of how they’d like the day to go. The execution of duties like ensuring that medications are taken, showers or baths are given safely, toileting accomplished, laundry, meals, dishes and appointments are taken care of and that adequate supervision is provided at all times for their loved one, often 24 hours per day, become the daily priorities. The new normal may feel a lot like just getting through our day and all that it entails.

That “to-do” list (either recorded on paper, computer or kept mentally) is never far from most caregiver’s thoughts. Some review it in their minds as the last thing they think about before retiring each night. Weighing what was accomplished and what wasn’t. Reflecting on what they did do, didn’t do, what did get done, could’ve gotten done or should’ve been done in a kind of self-imposed audit enacted by internal order to measure and gauge their level of success or capability as a caregiver when often the only witness to their efforts is no longer able to recognize or appreciate all that they do.

While meeting your loved one’s health and safety needs are of utmost importance, there are other aspects (Spiritual/Calm, Emotional, Sense of Purpose, Social, and Intellectual Engagement) of their care as well, that, when met, can have a very positive impact on their quality of life and yours.

If you are like most caregivers I’ve spoken to over the years, you agree with the idea of spending more quality time together, but wish you had the time and energy to do so. Below are some quick tips to help you carve out more space in an already overcrowded day to make time for moments that matter.

Use a calendar to organize the day. Pencil in blocks of time, even if it’s just 10 minutes to engage in something fun (music, reminiscing, looking at photos, gently massaging your loved one’s hands or just talking without the pressure of a coherent conversation). With Alzheimer’s/dementia, the only thing we can plan on, is that most times nothing will go exactly as planned. However, having a plan does help. It can better help you get back on track and minimize the disruptions to your routine when they occur (and disruptions will occur).

Put laughing ahead of laundry (at least sometimes!). Part of your daily goals should include at least one activity or interaction designed just for fun. Your loved one has likely lost the ability to self-initiate the satisfaction of their own needs-including the pursuit of pleasure or fun. Try making a fun interaction as much of a daily priority as medications, toileting and meals. Try it for just one week and see how it goes. Making it important to you increases the chances that it will happen for your loved one. Bottom line, if you don’t make it a priority, it probably won’t happen.

Put the past in the past. Hands down, one of the saddest things I’ve heard from families about the reasons their loved one “just sits there” or “doesn’t do anything anymore” surprisingly wasn’t related to the disease process. When I dug a little deeper, I learned it was often because their well-meaning but overworked caregivers just stopped trying to engage them in activities for a variety of very understandable reasons.

Try to objectively look at any barriers on your end that may be preventing you from facilitating fun activities and interactions. There are a lot of potential barriers to having the strength and energy to put on your “pom-poms” yet again to cheering yourselves on and up by dreaming up new and different activities to keep you both connected and entertained. Maybe your loved one lacked interest last time you tried to engage them in an activity, maybe you were just too exhausted, maybe your feelings were still hurt because of the way you were spoken to or treated yesterday. Perhaps they may not have appreciated all that you tried to do in inviting them to participate in something you really thought they might enjoy, only to be rebuffed. Maybe in that moment, whatever you were trying just didn’t work.

This is where you wipe the slate clean and remember that what happened yesterday was yesterday. Your loved one may not even remember what was said. They are probably completely unaware that you are harboring some hurt on account of their behavior. Don’t get discouraged. Today is a new day. A whole new chance to begin again. Don’t let past practices prevent future successes. Keep trying! Attempt different activity ideas, alternate times of day, and change approaches. It’s okay to keep starting over.

Attitude is everything. Look for ways to make the mundane magical. Have a plan for when you feel that you are starting to get stressed out and feeling overwhelmed. “Stop” and do something fun for a few minutes. Think about all the people you have met over your lifetime. Do you remember special family, friends, schoolmates, neighbors, teachers, and others you’ve met over a lifetime? Chances are the ones that stand out, your favorites, are remembered that way not because of what they did for you, but because of how they made you feel.

We remember the kind of person who makes going to the grocery store a grand adventure because when you’re with them everything seems more fun. We cherish this kind of person. Who never makes you feel like you’re a bother, the person who looks forward to seeing you every time you meet and the person who loves you unconditionally and thinks that you can do no wrong? Who wouldn’t want to know and spend their day with a person like that? Do you know a person like that? Are you a person like that? It’s okay to be a bit whimsical, a little silly and a whole lot ridiculous sometimes. Look for fun wherever you can find it and try to find the humor in all things. Be the person you would want to spend your day with and your loved one will have a better experience with you and you with them.

Start small. Have reasonable expectations. Instead of trying to meet one need from each spoke each day at first, try picking one per day. Always try to set aside 10-15 minutes per day for an enjoyable activity. As you find what works best for you and your loved one, you can gradually start adding additional times for activities. Remember, this is for fun…not an obligatory “to do” list but rather a “let’s see how many ways we can find to play today” list.

Make what you’re already doing an adventure. One of the easiest ways to create more meaningful and fun experiences for your loved one is to turn your everyday activities into something exciting. Asking your loved one for help, adding their favorite music or foods can make every day routines something to look forward to. Think of ways to make tasks into games, outings into adventures and chores into cheerful choices of things that they want to do rather than tasks that you feel you have to accomplish.

Look for ways to build in positive reinforcement. Praise and recognition can make anything better. When one feels like there is no way to do it wrong, fail, or embarrass oneself, you are more likely to try new things or enjoy ones that you may not be as good at as you once were. Creating a space of unconditional acceptance means a better experience for both you and your loved one. If things spill, break, or don’t go the way you thought; it’s okay. What matters isn’t what you DID but how you both FELT. If the cookies you made together burnt or tasted terrible because too much salt was added to the batter, no problem. Focus on the fact that you both loved licking the spoon or eating the dough beforehand, that’s a success! Find things along the way to compliment and celebrate. Thank your loved one often for their ideas and contributions.

Find ways to be flexible. Your idea of an activity may be very different than what actually happens. Okay, you’ve got the puzzle pieces out or have lovingly found a stack of old photo albums and you’re ready to reminisce or play. But…you’re the only one that seems to have any interest in that. Instead, your loved one is more interested in staring out the window, picking imaginary lint off of their pants, or looking for their car keys. Alzheimer’s is unpredictable. Go with the flow. Find a way for you to fold into what they are doing or what they are interested in instead of trying to force them to do what you want them to do.

If they are staring out the window, put on a nature CD with bird songs, get out a bird book or magazines with pictures of nature. Go for a short walk outside, fill the bird feeder or take them with you to check the mail if weather permits. If they are fussing with clothes, use it as a chance to change outfits or offer a bathroom break. They may be signaling you that they are uncomfortable in their clothing (let’s go pick out something different to wear) or they have to use the bathroom or that they’d just like to do something with their hands (get something soft out for them to fold and touch). Let them lead you with the cues they are giving based upon what they are doing, or saying and learn to use that to support their unmet needs in that moment. That’s an activity and that’s okay!

Set about seeing the successes in front of you. The very act of your loved one sitting near you, talking with or looking at you is an indicator that they are interested, engaged, and enjoying being with you. What words they use or what they do isn’t as important as how they feel. The fact that your loved one wants to interact with you is what really matters. They may not always be able to tell you or show you how they feel about you the way they did in the past, but these moments of little connections with each other are symbolic of a greater love. Being together, being happy no matter what you are doing or saying is a success in itself. Right then and there, that’s an out of the park home run!

If you didn’t finish, don’t fret. What if your loved one walks off seconds after you start what you’re sure was going to be a really fun activity? Or what if they start an activity and a few moments into the interaction they retreat to a place you can’t reach them? It’s okay. Focus on the time you had that you both felt connected, that they did participate. Make a mental note about what worked. What time of day, or circumstances surrounded the parts of the activity that they liked the best? What did the house sound like, smell like? What things did they show the most interest in and when? If the only part of making cookies together they seem to enjoy is stirring or putting their hands through the dry ingredients, then don’t feel like you actually have to bake the cookies. There is nothing wrong with only doing the parts that they enjoy.

“Shop” the supply store in your house. We all have closets, drawers, attics and garages full of everyday items that can be called into service when it comes to creative ways to engage your loved one. There are many organizations that make a big business out of selling very expensive, pre-packaged special activity supplies for persons with Alzheimer’s/dementia that support sorting, reminiscing, and fun in a way that engages your loved one physically and cognitively.   However, you don’t need a set of colorful wooden blocks, plastic shapes or a special set of books and puzzles to play a game. The truth is, a lot of what you can use to engage your loved one, are items you already have around the house. The added benefit that these items may be familiar on some level to your loved one because they belong to your home and are a part of your shared history only makes it more meaningful.

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How do you create “moments that matter” with your loved one? We’d love to hear your ideas.

If you’ve enjoyed Mara’s series here on The Long and Winding Road, stay tuned! In the coming weeks, I’ll be reviewing her wonderful book, When Caring Takes Courage” and giving a copy to one lucky reader!