Elaine Mansfield on Advance Directives: Be Specific

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Elaine Mansfield, Author

One of the greatest gifts my mom gave me in this lifetime was having her advance directives in order long before Alzheimer’s was so much as a blip on our radar. I remember when she had them done. At that point, I thought, “Okay, that’s done, but I really don’t want to think about. Furthermore, it’ll be forever until I HAVE to think about it.”

And life goes on….

Then one day, in a complete twist of what you believed to be fate, life changes drastically and forever.

Alzheimer’s.

Even with the documents in place and my mom’s wishes crystal clear, the end was agonizing. No one can prepare you for those final days and the sense of helplessness you’ll feel. However, I can’t begin to imagine how exponentially more difficult it would have been if the medical team had been looking to me to make those decisions no one ever wants to be faced with.

Please take a few moments to read this important, thought-provoking piece by my friend, author Elaine Mansfield.

Why I Added Detailed
Advance Directives to my Living Will

 

Elaine’s article has me rethinking my own Living Will and considering adding more detail as she and her husband, Vic, did. This specificity leaves no room for interpretation, and the fact that it’s handwritten also adds a certain level of comfort. It’s one thing to see a typewritten document initialed and signed by your loved one, but seeing these details written in their own hand – I think it might help the mind and heart to reconcile, finding a place of certainty and peace.

If nothing else, I hope this article will encourage you to give some thought to advance directives – particularly if you don’t have anything in place. Don’t leave these decisions to your loved ones; when the time comes, they will be struggling enough without having this additional weight on their shoulders.

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Elaine Mansfield’s book, Leaning into Love: A Spiritual Journey through Grief will be on shelves in October. It’s one you’ll definitely want to add to your reading list. You can find Elaine on Facebook and Twitter, and of course, you can visit her blog to experience more of her beautiful writing.

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?