Reminiscence and reminiscence therapy

“I remember that time when…”

So begins many a session of reminiscence therapy.

What’s reminiscence therapy? It’s using guided communication (and, often, objects from the past) to stimulate memories and help someone reconnect with her personal history. But that makes reminiscence sound more complicated than it is.

Picture this: searching for a pencil, you reach deep into a desk and your hand brushes across a seashell that’s somehow found its way into the drawer.

You pull it out, feel the ridges and the smooth inside.

As you hold the shell and touch the surface, memories of a long-ago trip to the beach flood your mind. You can hear the ocean and the wind and the birds. You feel the sun and salt on your skin, taste the sea in your mouth. The smell of waves fills your nose and you are almost transported to the scene, the feeling is so visceral. Walking in ankle-deep water looking for a perfect shell; your foot sinks into the sucking sand, a slight sunburn flushes your shoulders as another wave rolls in and tumbles the shells. You bend to pick up a nearly perfect one and the flash of the sun on the water momentarily blinds you…

Just touching that shell brings it all back.

Yes, it’s time to move: moving in with family

We’ve talked in the past about deciding if and when to move. We also discussed why it’s so important to start this conversation early.

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“It’s really hard to make the call of when it’s time to move if you wait until things get out of hand.

Obviously the time for a big change lies somewhere between ‘sure, mom’s doing well’ and ‘I just don’t know what to do.’ But when? How do you know?”

“From what I’ve seen, it’s pretty common for people living with dementia and their families to overestimate what they’re able to do on their own….”

–Is it time to move?
(from MySimpleC, posted 12/19/2011 )

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In “Staying at home (for now, at least)” we talked about some of the many resources available to those who choose to remain at home. Sometimes this is called “aging in-place.”

But what if you have the conversation and decide that it’s time to move?

Communication tips: verbal

Verbal communication

• If you need to repeat yourself, do so using the same words. It’s ok to say the same thing in a different way, but try saying it the same way, again, slower, first. 
• Pause to give her time to process the information. 
• Communicate at her pace. Keep in mind how that this changes over the course of the day.
• Speak directly and in a normal voice. So don’t baby-talk and please don’t yell.
• If you’re speaking with someone in a later stage of dementia, introduce yourself (“Hey, Mom, I’m Sally, your daughter…”)
• It’s alright to speak a little more plainly and slowly than you might with a person not experiencing symptoms of dementia. Try to keep ideas separate (“Let’s get dressed” instead of “Let’s get dressed so we can get in the car and drive to breakdfast”). Just don’t be condescending.
• Don’t let yourself become exasperated, angry, upset. Your goal is to communicate, not to have a perfect conversation.

Staying at home (for now, at least)

I was talking with my friend Liz a few months ago about her dad. He’s experiencing symptoms of dementia and was diagnosed with Lewy Body dementia. I found myself suggesting that her family discuss the possibility of a future move for her recently-diagnosed dad. This, even though he’s hopefully still a few years from requiring full-time care.

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Actively involving a person affected by dementia at an early stage lets her decide her future while she still can. Now is the time to have a conversation about what might happen and how she’d like you to handle it. 

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Why now? Well, there are a few reasons:

For one, actively involving the person affected by dementia at an early stage gives him buy-in for the final decision. It’s much easier to help someone move if you know it’s what he wanted.

Is it time to move?

Memory care. Assisted living. Nursing home. Continuing care retirement community. Skilled Nursing. Independent living. Residential care…the list goes on and on. Overwhelmed by endless options for eldercare communities, lots of us throw up our hands and avoid the topic until it’s absolutely necessary or just choose to muddle through on their own…even those who might be helped by residential care.

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Obviously the time for a big change lies somewhere between “sure, mom’s doing well” and “I just don’t know what to do!” But when? How do you know?

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Let’s look at how residential care decisions are made. I’d also like to learn about the decisions you’ve had to make early-on regarding future care options.

First off, I want to admit that, in the past, I’ve tended to support people living with symptoms of dementia living at home for as long as possible. To me, that meant someone would remain in her home until she had trouble with “Activities of Daily Life” (also sometimes called ADLs). That’s industry-speak for “things you do everyday”: getting dressed, using the restroom, eating, etc. Once she couldn’t take care of herself, then it’d be time to execute the back-up plan.

About us

Hi, welcome to MySimpleC.com.

My name’s Virginia Lynn Rudder (“Jennie Lynn” for short) and I work for a company, SimpleC, that’s using new technology to connect people living with dementia with their communities and to deliver personalized information, entertainment, and therapies set to an individual’s schedule. And largely succeeding, I might add.

But I’m not here to talk about that.

You can pop over to www.SimpleC.com if you’re interested in learning more, but we won’t be offended if you’re not. In fact, I’ll rarely even mention SimpleC. And if I ever do bring up a SimpleC product or service in the future I pledge to disclose our connection in the article, just as I’d disclose any other connection with a product or service I mention.

Because it’s not the goal of MySimpleC.com to sell you anything.

Seriously.

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Over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

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The point of MySimpleC.com is to establish an online community that will connect professional caregivers with family caregivers, uniting people living with symptoms of dementia with high-level researchers with people just now learning that not all dementia is Alzheimer’s…and everyone in-between.

Why?

Because over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

See, there are TONS of dementia resources out there but it’s hard to know which ones are worth reading. In fact, I just googled it: “dementia” brought up 10,200,000 results. “Alzheimer’s” netted 57,100,000. Sometimes there’s too much information and not enough guidance; this definitely seems like one of those times.

Just to be clear: I’m certainly not claiming to know all there is to know about progressive dementia. Sure, I’ve picked up a few helpful tips and earned some knowledge from The School of Hard Knocks…but I am acutely aware that it’s just scratching the surface.

We’ve seen a lot of dementia and how the same symptoms are approached in so many different ways, with such varying success. We hope to centralize that knowledge.

But in the process of compiling some of what we’ve learned (and wow do we have a lot to share in the upcoming weeks and months!) I realized that there’s a second component also missing in the digital dementia world: an open forum.

There needs to be a place that’s supportive yet honest, that’s neither woe-is-me nor persistently chipper, where you can ask hard questions and, even if they’re unanswerable, at least learn how others in your situation approached them. We need a place where it’s ok to be upset but not alright to be disrespectful. We need a place where caregivers whose loved ones have recently passed can connect with one-another and, if they’d like, share with those facing the battle they just fought.

I want this to be that place. We’re building this from the ground-up, together, and a lot of the initial discussions will take place in comments and through posts that you suggest.

Don’t worry, it’s not another person or entity demanding more of your time. Just…stop by when you can, and if you have a second, let me know what you think is good and what seems off or wrong.

Whether you’ve been diagnosed with a progressive dementia yourself (Alzheimer’s, Lewy Bodies, Parkinson’s, Mild Cognitive Impairment, vascular, …) or you’re the family or friend of someone who has been…it can be so overwhelming. I know it can. Not all bad, not by any stretch, but just such an unpredictable, continual challenge. And so isolating. Hopefully we’ll create a community that you can call your own.

So, we’re glad to have you; I hope you stay a while!

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MySimpleC.com does not provide medical advice, diagnosis, or treatment.

Life story

Recording your life story can be a powerful experience. So can helping someone else record theirs.

For people facing progressive dementia, discussing and sharing life lessons can mean even more. As they record their hard-earned knowledge, people living with dementia also lay a kind of roadmap of the most significant and defining moments in their lives.

This is important because dementia often eats away at memories in a predictable pattern.

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Recording your life story can be a powerful experience. So can helping someone else record theirs.

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We talk about a “narrowing window” on childhood. That’s when someone with memory loss retains older memories but not more recent ones. A lot of times the most resilient memories that all of us make are in the times we define ourselves as individuals, usually as teens and younger adults. New experiences make the strongest memories, and you have more new experiences at younger ages age, too.