dementia Archives - ElderHealth & Living Memory Village

January 28, 2021 by EHL 6 Comments

Mother of Pearl – Life’s Worth in the Midst of Memory Loss

By Jennifer Phillips

My mother has dementia. For the past three years she has lived in a secure memory care facility nearby. This week, at last, she received her first Covid vaccine. There’s been a lot of talk over the last year about how to assign value to lives like hers, so I want to tell you a story about the necklace she’s wearing in this photo.

Birthday Wish

Because of Covid restrictions, I haven’t been able to visit her in person for many months, but we FaceTime each other every week. Shortly before her recent birthday, I asked her what she wanted in the way of gifts. The question was purely one of conversational convention, as she hasn’t been able to answer such things substantively in a long while. But this time, without hesitation, she declared “A strand of pearls!”

And she didn’t stop there. She described the exact length, style and quality of the item in precise detail. I had my marching orders! After checking in with the staff to make sure there were no restrictions on gifts of jewelry, I shopped and found a strand that perfectly matched her description. I had no expectation that she would recall asking me for them, but they were such a crystallized reality in her mind during that conversation that I felt she would respond to them regardless.

I arranged a ‘window visit’ for her birthday, standing outside her bedroom wearing a mask and speaking to her through the screen while a caregiver kindly brought my gifts inside, waited while she opened the jewelry box and fastened the string of pearls around her throat. She was utterly delighted. She glowed. She declared them to the perfect length and we talked about how good pearls feel against the skin, how they go with every outfit.

Spark of Memories

Just then, without preamble, she launched into a perfect soprano rendition of “Full Fathom Five Thy Father Lies,” Ariel’s song from Shakespeare’s The Tempest, and one of many choral numbers she learned in school as a child in England.

Full fathom five thy father lies;
Of his bones are coral made;
Those are pearls that were his eyes:
Nothing of him that doth fade,
But doth suffer a sea-change
Into something rich and strange.
Sea-nymphs hourly ring his knell:
Ding-dong.
Hark! now I hear them,—ding-dong, bell.

She sang it twice through, flawlessly. The pearls were the hook that dredged “those pearls that were his eyes” and the rest of it up from the deepest fathoms of her mind, where a lifetime of verse and poetry readings lie quiet but perfectly preserved, waiting for daylight to find them.

Our conversation then shifted to art, and we talked of Vermeer’s “Woman with a Pearl Necklace.” She posed just so, lamenting that she did not have her yellow and ermine robes on today.

She posed for this photo, snapped through the window glass, as the resident cat snuggled at the foot of her bed waiting for her, the favorite, to be free to stroke him again. She lives only in the moment now, the biographical continuity of her rich life long gone.

But…so much remains. Libraries of art, music, literature, dance, and world culture dwell behind locked doors, but the keys come in all shapes and sizes, and brilliant light shines through the keyholes to pierce the darkness. I know that it gives her great comfort and confidence to demonstrate her vast knowledge, and it brings joy to most everyone present when she holds forth.

Life’s Worth

Some people—more than I ever suspected, I am dismayed to discover—don’t think her life is worth living. They judge that her failing, unreliable mind is not worth wasting a precious medical miracle on.

I disagree.

Not because of my attachment to her, or my unwillingness to let her go–that decision is made, as Alzheimer’s is a long goodbye—but because so much of her is still there. She lives in many joyful instants. She adds humor, intelligence, and vivacity to the lives of all who encounter her. She is her whole self.

She is a woman with a strand of pearls. Pearls that contain multitudes, memories, and comfort. Their lustre might be hidden, but they reveal their soft brilliant in lovely ways, every day.

Once, she was a great story teller who relished relating all the spectacular moments in her life with dramatic flair. It’s my job to tell her stories now, and this is one of them.

July 26, 2019 by EHL 1 Comment

Why Art In The Park Matters

In every aspect of life, it is imperative to understand the “why.” Just ask any 3-year-old, it’s their absolute favorite word! They know what you said, but they want to know why they can’t have that candy in the grocery store before dinner. You have to tell them multiple times before they concede, if they concede at all. As we age, this desire to know why doesn’t diminish, our reason for asking simply becomes more multi-faceted. We want to know why our loved one is upset, why we should choose locally sourced produce over conventional produce, why we should choose school district X over district Y. We’re designed to want to know more, the secret perhaps is in learning when to be OK with not being the expert.

Simon Sinek is a gifted writer, speaker, and business leadership coach that coined the idea of “The Golden Circle” to explain why we care about the “why.” It’s simplistic in its design: there are 3 circles- the smallest in the center, a medium circle surrounding it, and the largest at the edge. The idea is: what you do and how you do it is an important part of the equation. If you have a solid why that others can understand and identify with, then what you do and how you do it have the freedom to remain fluid and dynamic. I would love to use ElderHealth & Living Memory Village (EHL) as an example here, so let’s play, shall we?

At EHL, we have a pretty simple what. What do we do? We are a memory care village that provides a home for folks with different types of mild to severe cognitive impairment. We are comprised of 9 separate homes, a welcome center, club, recreation department, health center, food and supply warehouse, maintenance warehouse, and let’s not forget our infamous 18-hole putting green! Ok, so maybe it’s not simple, there are a lot of moving parts, but we aren’t alone in our quest to create a place for those with memory loss to live and be cared for. We are one in a sea of thousands trying to do the same thing, so how are we different?

Our homes are designed to blend safety and security with freedom and independence. They are gated and secured so that our residents can safely roam about as they please; smelling the flowers and walking the paths, perhaps even pausing to sit in the shade and just relax. We have tools to help them keep their mobility (*read our blog about Merrywalkers!*) for as long as possible. We invite them to garden, help with dishes and laundry, all under the watchful eye of our staff who grow to love them like family. Admittedly, we do things a little differently. Our bathrooms have neon green signs with large letters and 5 different synonyms for the word “bathroom” just to try and cue a piece of the brain that will be reminded “Oh! This is where I can go to relieve myself.” Truthfully, our how is ever-changing, but that’s the way we like it. It can and should be continually changing because we have a solid why that acts as the glue to a million tiny pieces of trial, error, patience, and teamwork.

So why do we do all of this? Why did we do Art In The Park? And why is this blog titled “Why Art In The Park Matters” and this is the first time I’m mentioning Art In The Park? Because, to understand why we have events like Art In The Park, you must first understand what our why is and why it’s so important.

Our why: We believe in giving people with cognitive impairment the best life we can possibly give them. We encourage them to help with laundry, dishes, gardening, oil changes, picking blueberries, and anything else we can think of. Their best life must include dance parties, so we have a lot of those, but sometimes I think we all forget that living our best can also mean being childlike again: having the confidence to forgo mastery and pursue creativity. Afterall, art is not confined to one method, it takes many forms. It can be putting colors together on paper because it looks pretty, painting the imaginary picture in your head, molding a piece of clay, knitting, singing, dancing or so much more. For our village, it was a lot of these things, but the true beauty was in seeing how much fun our village family had together. We were able to create moments where staff were no longer staff, residents no longer residents, and our collective identity was simply creativity and imagination. Art begins when you believe it is worth doing and you attempt to create, no matter the outcome.

If any of these art projects sparked moments of real joy, then it was a success. Our goal really was simple: to help our residents have fun and give them the confidence to try something new. Afterall, if we are too busy focusing on what we cannot accomplish, we will never accomplish anything great. Had our resident, Elsabe, said to herself “I’m not a painter,” then she wouldn’t have been able to make this.

Perhaps it’s not such a bad idea to admire a 3-year-old, they just might be on to something.

**Thanks to the incredibly generous donations made by those who attended our 1st annual Art In The Park, we will be donating $2000 to the Alzheimer’s Association! We can’t thank you all enough for the support, encouragement, and love you showed!

By: Christine Martin

April 30, 2019 by EHL Leave a Comment

Memories Matter!

Let’s talk memories…the old ones.. the ones filed so far back in our minds we almost forgot they were there… Well, almost…

Sometimes, we don’t realize we are in the middle of a memory until the moment has passed us by and we step back from the situation and do some good ol’ over-analyzing and over-thinking. It might even be days later, we begin to think about the moment, analyzing the details of each conversation; what the words meant, how the actions were or were not connected to the words. The facial features; the way they changed over the course of the conversation and how we could see through them but couldn’t get the explanation you were looking for. We etch that moment in our brains, trying to hold on to something.

This memory etching that we do never goes away even if we didn’t know we were doing it in the moment and yes, even with “Memory Loss” they still reappear. This is why our 87 year old mother who has a Memory Loss Diagnosis is attempting to climb out of the window at 3am to go and get milk from the store because “the etching” she did when she was 28 told her that she forgot the milk for the muffins you needed for the bake sale the next day and your mother would never let you show up without her world famous cranberry orange muffins. Phew that was quite the exhausting memory to read, can you imagine reliving that? Maybe even night after night?

It’s not always this way. Sometimes, we know we are making memories in the exact moment they are happening. We find ourselves stopping and saying, sometimes out loud, “I’ll never forget this moment…” and we don’t. We commit it to memory; the sights, sounds, and smells. These are the easy ones because we set out to make these memories. It’s like our 10-year old family trip to Disney; we know it’s a moment our parents spent a gazillion dollars on and that while we may have felt like we were in the throngs of forced family fun, we still came out with some solid memories and some epic family photos with outfits that still have us asking “why would we be dressed that way…” It’s easy to see why we have and hold on to memories like that. Or memories of our grandparents, how we used to spend holidays and weekends and random Tuesday’s playing cards and watching the Golden Girls. These moments have shaped our lives. They are the kind of thing where we can close our eyes, smell a smell or hear a song or watch an episode and be transported back.

*Our Family Services Coordinator and Family making her own Disney memories*

Turns out that even the best memories just make us miss the things they were tied to; the way things were, the things that could have been but couldn’t then. We ache for these moments to be so much more than memories; to be pieces we could relive, if even just for a moment. And maybe we would change the outcome and maybe the outcome would change us (more than it has already). And maybe nothing would change but we’d hold on to the person for just a second longer, a little harder, fight a little more for that goodbye kiss… then maybe, we wouldn’t be so worried that that moment would be our last memory…

So, if it’s the memories we didn’t know we were making that mean the most, why not challenge ourselves to make the most of everyday?

March 1, 2019 by EHL 8 Comments

Let’s Talk About Merry Walkers

Liz von Wellsheim, MA, MSN, GNP

What is a Merry Walker?
When are they useful?
Who benefits most from the use of a Merry Walker?
Are they restraints?
Are they for staff convenience?
Who does NOT benefit from a Merry Walker?
What to think about when prescribing or recommending a Merry Walker
Conclusion

For the past 13 years I have been one of the owners of ElderHealth & Living Memory Village (EHL). I am a Geriatric Nurse Practitioner providing onsite medical management of persons with moderate to advanced forms of dementia. I have found that the introduction of a Merry Walker, to a patient with dementia who is starting to lose their ability to walk or recovering from a hip fracture, has been the best adaptive equipment I can prescribe to enable patients to WALK INDEPENDENTLY.

What is a Merry Walker?

A Merry Walker is a type of adaptive equipment. Adaptive equipment is equipment utilized to help with a physical or cognitive impairment. Walkers, wheelchairs, hearing aids or glasses are considered adaptive equipment which allow persons with a disability to function at their fullest. As a Health Care Practitioner in search of adaptive equipment to facilitate the achievement of personal mobility goals, a Merry Walker can be perfect.

A Merry Walker comes in various sizes and styles. It can be made from light weight plastic tubing (like PVC pipes) or heavier metal frames. Like all adaptive equipment it requires correct measurements and possible adjustments to meet specific resident needs. The Merry Walker should be the correct height and width for the patient. Additional weight on the lower part of the frame may be needed to make it more stable. We have found that adding ankle weights, like those used by runners to improve lower extremity strength, work great when attached to the lower bar on the frame. Sometimes we find that adding engaging objects to the opening bar, that are tactile and interesting or a tray that carries a woman’s purse or resident “stuff” is also helpful.

When to use a Merry Walker?

With the progression of most types of dementia there is an increase in falls. Falls begin to occur with the loss of coordination, endurance or balance. Falls can also be the result of changes in visual abilities affecting depth perception and resulting in persons with memory loss trying to sit down on a chair, missing it by 4-6 inches and literally sitting in space. At ElderHealth & Living we do EVERYTHING POSSIBLE to help residents peruse their passions. Residents want to: MOVE, walk, dance, stand up and sit down without being assisted or having an alarm go off or being told “No you can’t get up on your own, you will fall”. A typical facility response to a resident beginning to fall is to introduce the use of a wheelchair. There is a false belief that the resident won’t fall from the wheelchair. Typically, if the person has dementia, they will not remember to lock the wheelchair breaks before standing up and the wheelchair will fly out behind them causing a fall.

Who benefits most from using a Merry Walker?

Persons who benefit most from a Merry Walker are;

Impulsive patients, those that stand up without asking for help and then fall. Even when seat alarms are used these patients typically stand up, start walking then fall before a staff person arrives to assist them.
Patients who have lost their depth perception or have other visual impairments and fall when attempting to sit on a couch or chair.
Patients with poor balance.
Patients with low endurance or weakness who can only stand up for a short time and then sit back down, but want to do this over and over again.
Patients who have a strong urge to wander/explore but have lost their “normal” gait, they may have a scissor gait, be weak on one side or shuffle.
Patients recovering from hip surgery who have pain after a few steps of walking, not remembering that they broke their hip, will sit, then immediately stand back up for a few minutes and sit again. The rehabilitative benefits from getting up and walking, even short distances, is beneficial in the full recovery of mobility.

Are Merry Walkers Restraints?

The State Definition of Restraint, (RCF/ALF OARS Chapter 411 Division 54), “physical restraints are any manual method or physical or mechanical device, material, or equipment attached to or adjacent to the individual’s body that the individual cannot remove easily, which restricts freedom of movement or normal access of the individual to the individual’s body. Any manual method includes physically restraining someone by manually holding someone in place.”

A Merry Walker is like a helper bar on a bed that is used by the individual to allow them to roll over in bed by pulling on the bar, to create freedom of movement. A Merry Walker is an adaptation used to allow for freedom of movement without being restricted to walking with someone assisting them and when others choose to “take them for walks”. The question of freedom to get in and out of the Merry Walker frequently comes up. Usually a person needs assistance to stand and walk and to use the Merry Walker in much the same way they would need assistance to transfer into a wheel chair. The cross bar used to hold onto for support is easily lifted to allow entering and exiting from the Merry Walker. Patients are evaluated for their ability to open and close the front support bar. If they like to open the bar, but are not safe when doing so, they let go of the bar as support and fall. In this case, we use an alarm on the bar to alert staff when bar is opened and to assist the patient out of the Merry Walker. Some patients lack the capacity or ability to ask for assistance to walk, lie down, use the bathroom or move into another chair from the Merry Walker. For these patients allowing them freedom of movement in the Merry Walker and providing frequent assistance to use the bathroom, lie down or move to another chair is required and allows for maximum level of independence with mobility to explore their environment.

Are Merry Walkers for Staff Convenience?

I believe that Merry Walkers are no different than wheel chairs and to say a wheel chair is for “staff convenience” makes no sense. When a resident requires a Merry Walker to assist them in walking independently it is not a staff convenience it is a resident’s mode of mobility.

Who does not benefit from Merry Walkers?

Like all adaptive equipment a Merry Walker is a mobility enhancement tool and is effective for some people and not others. Just like when I prescribe a 4 wheeled walker or a front wheeled walker with back glides, the medical decision is based on many factors such as, does the patient have the cognitive ability to use the breaks on the 4 wheeled walker, or does the patient require the seat on the 4 wheeled walker because of low endurance post cardiac surgery, or is a front wheeled walker needed to help with balance and the patient needs to lean on the walker for support.

When prescribing a Merry Walker to assist with mobility there needs to be an assessment of balance, height, weight, cognitive ability to determine if it is appropriate and will benefit in improving mobility and in reducing falls. Patients with severe balance problems may not be candidates for the Merry Walker because of the likelihood of tipping it over. Patients who are visually triggered to climb on objects are not good candidates, they perceive the Merry Walker as climbing bars. Patients who do not understand the rehabilitative effects of the Merry Walker and become angry when introduced to the Merry Walker are not good candidates. Sometimes I will trial a Merry Walker on a patient and he or she will reject it and then a few months later accept and love cruising around independently. This is like patients that I try to get to use a walker but refuse, until they fall, fracture a hip then fully embrace using a walker.

Prescribing a Merry Walker

When trying to decide about using or prescribing a Merry Walker think of it as any other type of adaptive equipment. Ask yourself;

Will the Merry Walker improve mobility?
Will the Merry Walker allow for freedom of movement?
Is the Merry Walker in alignment with the patient’s goals of care; does he or she have a passion for walking?
Is the person ready for this type of adaptive equipment or can they remember and accept a standard walker?
Do they have severe arthritis in their knees and to manage their pain there should be no weight bearing and a wheelchair is a better option.

Conclusion Merry Walkers have improved the quality of life for many of my patients by allowing them to move freely and continue to explore their environments both inside and outside without the fear of falling. Merry Walkers have reduced or eliminated pain from being confined to a wheelchair. Merry Walkers have prevented, or cured depression associated with loss of mobility. There is joy when persons at risk for falling are given the freedom to move, to walk, dance and explore. They are a safe and reasonable option for when adaptive equipment is being considered to assist with mobility.