The Driver’s License Issue

The driver’s license issue: It comes up at every dementia support group meeting I attend. So, when I was at DMV and picked up a brochure titled Potentially Unsafe Driver, I was excited to see it included a form that gives you a way to notify them when a driver’s “road-worthiness” needs reevaluated.

Technically, doctors (in California, anyway) are required to notify DMV when someone is diagnosed with dementia, but apparently, this doesn’t always happen automatically. Families sometimes have to give the doctor a little push. Thankfully, our doctor was on the ball, and my dad’s license was suspended last summer.

According to DMV’s website, if the dementia is “mild,” the driver is allowed to schedule a reevaluation which includes a written and behind-the-wheel test. If he passes the tests, his license can be reinstated, however, he will be required to return within the next year for another reevaluation.

But what if you know someone who doesn’t have a medical diagnosis yet? Often, families recognize that there’s a problem – that a loved-one should not be driving –  long before there’s an official diagnosis. People don’t like giving up their car keys – or the independence that comes with them – so this becomes a contentious issue and causes all sorts of strain on relationships.

That’s why this Potentially Unsafe Driver brochure caught my attention. It provides a way to do what needs to be done (get an unsafe driver off the road) while allowing you to preserve your relationship and avoid direct confrontation.

The actual form is titled “Reevaluation Request.” It has a checklist of driving problems and provides space for you to explain why the driver should be reevaluated. It does ask for your name but allows for a certain degree of anonymity. It can be printed from DMV’s website: http://apps.dmv.ca.gov/forms/ds/ds699.pdf

Don’t wait until something tragic forces the issue; do what you can now to avoid heartache later.

Good luck telling this – or any – guy he can’t drive anymore!

Copies: I Wish I’d Known

It’s taken almost a year for me to realize I could have saved a lot of time if, right there on day one of assuming power of attorney, I had made multiple copies of all the documents that authorize me to make legal and financial decisions on my father’s behalf.

I wish someone had told me to make at least 20 (maybe 30) copies each of the powers of attorney, letters from Dad’s doctors, the trust abstract, etc. Then I could have had them all in a folder, clipped together – ready to grab and give to whomever needed them.

But, since no one told me (and I had no idea how many I would need), I ended up pulling out those documents and making copies one situation at a time: banks, insurance companies (life, medical, various vehicles), Medicare, Social Security, DMV, doctors . . . I kept thinking I was almost done, but then a new need would pop up, and I’d be at the copier again.

I figure that if it took ten minutes each time I got out those documents, fed them through the copier, then put away everything carefully again . . . Doing that 20 separate times means I spent 200 minutes (more than three hours!) standing in front of the copy machine.

If I had made 20 copies all at once, the whole thing would have taken maybe 30 minutes total, and I would have had an extra two and a half hours to do something else.

My advice: If you or someone you know ever ends up serving as a trustee or agent (power of attorney), make lots of copies, and use that extra time  to enjoy a movie, a massage, a long walk or maybe a nap!

My mom and dad dressed for a costume party, mid 1970s.

After Empathy

I know it’s not Dad’s fault he doesn’t understand things logically anymore and that he gets upset about things that aren’t “real.” I know it doesn’t do any good for me to explain things to him over and over again; in his “dementia reality,” my explanations are meaningless.

Books emphasize that although people with dementia have a distorted understanding of reality, their feelings are real, and those feelings need to be acknowledged and respected.

So, when my dad bitterly accuses me of “paying-off” the doctors and attorneys so that I can keep him locked up and steal his money, I want to argue with him – to defend myself. Instead, I tell him that if I were in his place, I’d be bitter too.

While I try to assure him that I am only managing his money for him, I agree that, in a way, his life has been stolen from him, and he has a right to be angry.

I apologize for not being able to do what he wants me to do – which is to give him back his old life.

But how do I respect my dad’s feelings and still deal with the realities of banks, brokers, insurance agents and the like? That’s where the books fall short on advice: What to do after acknowledging the feelings.

Dad wants to manage his finances himself, but he can’t. Yes, he can still add and subtract quite well, but he gets confused over simple concepts then angrily blames everyone else for his errors/misunderstandings. I’ve suggested that we go over the bills together, but – to put it nicely – he rejected the idea.

Although I respect my dad’s feelings, I can’t respect his demands to relinquish my position as his agent and trustee. There just doesn’t seem to be an adequate replacement for reason and logic when it comes to making financial decisions.

Suggestions?

 

Dad is helping me learn to walk. 1963

 

Feelings are Real

For me, the most difficult “cultural difference” to adjust to in the world of dementia is the fact that the use of reason is strangely – adamantly – not useful. I’ve read stacks of books looking for an appropriate substitute, but, so far, no luck.

The explanation I’ve found goes something like this: Imagine that someone with dementia believes a neighbor has stolen his coffee cup. Rather than reasoning with him (“Your coffee cup hasn’t been stolen; it’s in the bedroom where you left it”), the best thing to do is acknowledge his feelings (“I’d be angry too if someone took something of mine”).

Reasoning does not help. Instead, it creates conflict, because now, in addition to the “fact” that his cup has been stolen, you are calling him a liar, and/or you’re in cahoots with the thief.

Even showing him the so-called stolen cup will not solve the problem. The dementia-afflicted mind will come up with any number of implausible stories to “prove” to you that the coffee cup you’re showing him is a fraud – probably placed there by someone with evil purposes in mind.

It’s so hard not to argue. But don’t. And if you simply cannot stop yourself, at least know in advance that you’re doing so for your own sake, not for the person with dementia; you cannot reason him out of his reality.

Remember: Acknowledge the feeling. Even if the “reality” isn’t real, the feeling is.

 

My dad is the little guy in the middle between his two older brothers Melvin and Wayne. I’m guessing this photo was taken late 1937 or early 1938.

 

P.S. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss (by Nancy L. Mace and Peter V. Rabins) is a very practical book with explanations and ideas about day-to-day living with dementia. You can read it cover to cover or just jump directly to the chapter addressing your pressing concern. It’s been around for a while and has been updated several times.

 

Moments of Joy

“”We are not able to create a perfectly wonderful day with those who have dementia, but it is absolutely attainable to create perfectly wonderful moments – moments that put smiles on their faces, a twinkle in their eyes, or trigger memories.” Jolene Brackey wrote this in Creating Moments of Joy, an upbeat and practical book that has inspires me to find little things I can do to make my dad’s days brighter.

Several months ago, I couldn’t drive down for my weekly visit and didn’t want Dad to feel abandoned. I decided to make him a card – just like when I was a little kid. (I wish I would have taken a picture, but I didn’t.) I copied and then illustrated this riddle:

Why do deer use coupons?

They like to save big bucks and lots of doe.

I’m not an “artistic” person, so it took me quite a while to make the card and have it look somewhat presentable. My husband commented that Dad probably wouldn’t appreciate all the time and effort I put into it. But my thought was, if the card made my dad smile – even if only for a moment – that was “appreciation” enough.

Apparently, Dad got a kick out of the card and showed it to everyone in his assisted living community. I was told he got several smiles out of it.

So, a few weeks later, I made another one . . . And then another.

Recently, one of the staff members asked when they could expect the next card. So, this week, I got out my paper, scissors and glue and made a new one. Here it is:

This is the front panel of the tri-fold card I made for my dad this week.

(I found the riddle in Readers Digest last month.)

I cannot give my dad his old life back, but if I can give him a moment of joy – one precious smile –  then that’s something to be grateful for.

If you have any favorite riddles, please let me know; my supply is running low.

Resources for Ideas & Information

In the early days of the journey, much of the challenge of dementia is in figuring out the everyday stuff of life. Doctors are great for medical issues, but they may not be available to sit and brainstorm about how to deal with legal and financial matters, what to do about problematic dementia behaviors, or how to ensure safety while still providing quality of life. I’ve found that for those kinds of questions, doctors are not the best resource.

Books and the internet are invaluable, but it takes time to do all that reading, and sometimes you need an answer now.

Private dementia-care consultants can address specific needs and concerns, but first you have to find one. I was lucky enough to meet with someone locally;  her $75 per hour fee was a bargain for the help she provided.

For a no-cost option (in California), there are ombudsmen for all sorts of senior-related issues including long-term care concerns. I’ve heard good things about them from other people, but after leaving about a dozen messages without a call back, I gave up. Maybe you’ll have better luck.

In my experience, the most informative, immediate and generous resource around is the people who work in assisted living communities.

The assisted living communities in my area offer free seminars on navigating the ins and outs of assisting aging parents; they also have a lot of helpful information about dementia. And although the programs are offered through their marketing departments, the classes I’ve attended have not been sales presentations in disguise. Maybe I’ve just been lucky, but I have found these care-giving professionals to be fonts of knowledge, support and encouragement.

If you have suggestions about other resources you’ve found to be helpful, please let me know. I continue to be hungry for information, ideas and inspiration!

p.s. Let me know if you need specifics about any of the resources I mentioned.

Dad ate escargot for the first time while on a Caribbean cruise – sometime in the mid 1970s.

Word of the Day: Anosognosia

In the first few weeks after I stepped into the caregiver role for my dad, I was overwhelmed, not because I didn’t have answers, but because I didn’t understand the questions!

Then, one day, I realized with delight that I was speaking “dementia.” I was using terms and phrases comfortably that, only a short time ago, were completely foreign.

If you’re new to the world of dementia, hang in there. You’ll be speaking like a native in no time!  ;->

Here’s one of my favorite new words: anosognosia. It’s particularly useful when talking about my dad.

You see, according to my dad, there is nothing wrong with him. I’ve heard people say he is “in denial,” but that implies that he knows there’s a problem and chooses to ignore it. I’m convinced that Dad really and truly doesn’t recognize that anything’s wrong.

This seems odd, but I’ve found out it’s not uncommon, and (hallelujah!) there’s a word for it.

Anosognosia – the lack of awareness of illness or symptoms.

Its Greek roots are “an-” or “a-” (not, or without), “nosos” (disease), “gnosis” (knowledge).

Apparently anosognosia is fairly common in people with dementia. It can be caused by brain injury or various neurological diseases, including Alzheimer’s.

The serious problem with anosognosia is that a person who doesn’t recognize that he has a problem will not accommodate for it. For example, someone who does not believe he is ill will not take his medicine. Someone who does not realize his leg has been amputated will attempt to walk – and will fall. It’s rather amazing.

And frustrating.

Trying to convince a someone with anosognosia that there is a problem that needs to be addressed  . . . Well, from my experience, it falls under the category of “banging your head against a wall.”

If anosognosia is part of your reality, I’m afraid all I can offer you at this point  is “good luck.” Let me know if you figure something out. In the meantime, enjoy the word; it may bring you comfort.

My dad, brother and I at Bear Valley Ski Resort – approximately 1975.

 

(By the way, my information about anosognosia comes from the Alzheimer’s Association, National Alliance of Mental Illness, a couple of medical dictionaries, and, of course, Wikipedia).

Hear the Dementia Whisperer this Weekend

When my father’s dementia became an unavoidable fact of life, I did what I always do when faced with a unfamiliar situation; I started reading.

One of the first books I read was A Loving Approach to Dementia Care by Laura Wayman.  I’ve gone through many books since then, but “A Loving Approach” remains one of my favorites.

In the book, Wayman (who is also known as “The Dementia Whisperer”) uses stories and examples to explain how to find the source of challenging dementia behaviors and communication breakdowns. Her ideas and strategies have been invaluable in my interactions with my father.

This coming Sunday (November 18), Laura Wayman is speaking at the Alzheimer’s/Dementia Caregiver Support Group at Valley Springs Presbyterian Church, 2401 Olympus Drive, Roseville, CA.

The meeting is 10:30am till noon in the church conference room. Admission is free, but RSVPs are appreciated: debbieinouye@surewest.net.

If you can’t be there on the 18th, I highly recommend visiting  http://www.dementiawhisperers.com for helpful articles and for information about Laura Wayman’s workshops and personal consultations.

And make sure to read A Loving Approach to Dementia Care. Really, it’s an easy read but worth its weight in gold.

Now it’s your turn. What books or other resources have you found to be helpful?

 

“A Loving Approach to Dementia Care” by Laura Wayman is one of my favorites of all the books I’ve read this past year.

Dementia is not Alzheimer’s

Early in this journey, I noticed that when I told people my dad has dementia, they assumed he has Alzheimer’s Disease. I was confused, because the terms “dementia” and “Alzheimer’s” tend to be used interchangeably.

But my dad doesn’t have Alzheimer’s.

I needed clarification, so I did some research and found that, in fact, dementia and Alzheimer’s Disease are not the same thing.

According to the Alzheimers.org.uk website: “The term ‘dementia’ describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer’s disease and damage caused by a series of small strokes.”

It turns out, Alzheimer’s Disease is the most common cause of dementia, but it is not the only cause. Strokes, injuries and even substance abuse can also be culprits. My father’s dementia is the result of Parkinson’s Disease.

Also, notice that memory loss is one of the symptoms within the group called dementia. Mood changes, communication and reasoning problems are also on the list.

Because people seem to associate dementia solely with memory loss, friends are confused when they talk with my dad and see that his memory is still pretty good. For him, the ability to reason is what’s been damaged most.

I met a woman whose husband developed dementia after heart surgery. She said, “One man when into the operating room, and a completely different one came out.” For him, personality change was the big issue.

Whatever you call it, and whatever the cause, dementia is a sad, difficult experience for everyone involved. But for me, it’s helpful knowing, at least,  that I’m using the right words.

Learning the lingo is part of the journey.

My dad and I snuggling on the recliner – probably 1964.

Dementia: Travels in a Foreign Land

During the past year, dementia has unmistakably altered my father. Now, time with him is like visiting a foreign world.

There’s a whole new language to learn. Creative intervention.Sundowning. Long lists of medical and insurance (especially Medicare) terminology.

Does Berlitz have a listen-and-repeat audio program – “Speak Dementia Like a Native in 10 Minutes a Day?”

Rules and customs in the world of dementia are foreign too.

In the movie “Sweet Home Alabama,” Reese Witherspoon plays a fashion designer who, after living in New York City for many years, visits her family in Alabama. The extreme differences between the two places causes her to proclaim in exasperation, “People need a passport to come down here.”

Since January, my father has been in a facility for Alzheimer’s and dementia care. His home is only an hour and a half drive from my house, but like the Reese Witherspoon character, I feel like I need a passport to go there.

In Passport to Dementia, my desire is to share what I’m learning, to encourage others who are on a similar journey, and to make the best of this difficult journey. Thanks for joining me.

Dad was stationed in Japan while serving in the U.S Marine Corps.