Everything is Urgent

Everything having to do with my dad seems “urgent.” Unfortunately, urgent or not, I cannot do everything at once.

The problem is that simple things turn into weeks-long projects involving forms, letters, faxes and more phone calls. It wouldn’t be so bad, but Dad’s determination to “straighten everything out,” complicates matters.

Like the time I got a call from the insurance agent because Dad tried to cancel his prescription drug coverage. Dad had decided the insurance was a waste of money and insisted he could buy his prescriptions cheaper on his own.

So I went to the pharmacy and had them list what Dad’s prescriptions would cost without insurance. Surely, once he saw the actual numbers, he’d agree to keep the insurance, since it is saving him about $1,000 per month.

I showed the list to Dad, but a couple of weeks later, he was on the phone with the insurance company again wanting to cancel the policy.

When I asked him about it, he said the pharmacy I’d gone to was “over-priced.”  So I went to a different pharmacy. Showed him the new list. And within a couple weeks, he was talking about canceling the policy again.

Take this scenario and picture it with banks, brokers and any other business you can imagine, and you have an idea of how I spend the bulk of my time these days.

The problem is that neither my day nor my energy level has expanded to accommodate these new demands. I’m exercising regularly, praying (a lot!), participating in support groups, and eating lots of veggies. Unfortunately, there is a limit beyond which even the most powerful vitamins cannot take me.

So, even though everything is urgent, some things have to be put on hold – regardless of any real or perceived consequences. I’m doing the best I can right now; it seems like it’s not “enough,” but I can only do what I can do. Right?

My dad has an awesome smile! He's picking cherries - probably late 1970s.

My dad has an awesome smile! He’s picking cherries – probably late 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

Dad is helping me learn to walk. 1963

 

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.

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

What did one snowman say to the other? "I smell carrots too." (Found this in Readers Digest last month.)

(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.

Diamonds in Dementia

In the story called “Acres of Diamonds,” a man hears that people are making a fortune in diamond mining, so he sells his large farm and sets out to get in on the action. The guy who buys the farm is surprised when his newly-purchased land turns out to be one of the richest diamond mines on the continent. The first man literally walks away from acres of diamonds. The diamonds are right there, but he goes seeking them elsewhere and ends up disappointed and broke.

Dealing with dementia is difficult for everyone. I long for an easier, less stressful existence. Walking away isn’t an option. But I’ve discovered that there are “diamonds” in dementia. Mostly, they’re little ones; but if I pay attention, I can see them sparkle. For example:

  • Dad’s illness has opened doors for me to reconnect with relatives and family friends I haven’t seen in years.
  • Dad’s forced-slow down means that I get to enjoy extended, one-on-one time with him. For years, he was too busy; now he has time to talk.
  • The time-crunch created by my new responsibilities provided the nudge I needed to finally learn how to use the headset and the voice-activated dialing on my mobile phone. (I feel so “modern” now!)
  • In situations when I’ve expected people to react with annoyance to Dad’s testy behaviors,  I’ve seen compassion and willingness to help. Again and again, I’ve been humbled and deeply touched by the kindness and patience of strangers.

My challenge to you: Whatever difficulty you may be experiencing, find some good in it.

  • What insights have you gained?
  • What time-management tool have you discovered?
  • Who has surprised you by being supportive?

Look around and see what diamonds you can find right where you are.

My mom and dad – in their house in Stockton, CA, approx. 1990

 

p.s. Remember, if you want an email notice about new posts on Passport2Dementia, click on the “follow” button on the lower right screen.

Anniversary of the Fall

Dementia started sneaking up on my dad a few years ago. He repeated himself more often. He couldn’t take care of household fix-it jobs the way he used to. There were the unexplained “dings” in his truck.

His wife knew something was wrong, but none of the symptoms by themselves were alarming or distinct enough for doctors to take notice. Then a slight tremor in Dad’s right hand appeared, and finally, the pieces of the puzzle came together.

Parkinson’s Disease was the primary diagnosis but “mild cognitive impairment” (just shy of dementia) was there as well. Dad started taking medication for the Parkinson’s and went back to living life, as much as possible, as he always had.

Then came the fall.

Shortly before last Thanksgiving, Dad wanted a box from the attic space in his garage. He climbed a ladder, lost his balance, and fell to the concrete floor. He fractured his skull and snapped his left clavicle in two.

After two weeks in the hospital, some surgery to piece together his clavicle, and then more than a month in a skilled nursing facility, Dad recovered – remarkably well – from his physical injuries.

But the dementia, which had been sneaking up on him prior to the fall, didn’t bother to sneak around anymore. Confusion, repetitiveness, and impaired reasoning became pronounced.

Parkinson’s Disease started it. The brain injury from the fall possibly sped things along. And, on top of that, there’s correlation between dementia and the anesthesia and morphine used during and after surgery; so, that probably contributed to Dad’s decline too.

So, here we are, one year later, wondering what’s next.

Recently, I ran across a quotation from Winston Churchill:

“If you’re going through hell, keep going.”

The journey ahead with Parkinson’s and dementia isn’t likely to be pleasant – for Dad or for any of us – but, since we don’t have choice, I guess we’ll keep moving forward one step at a time.

 

God bless you all. Happy Thanksgiving.

 

And be extra careful around ladders.

 

Even as a farmer boy third-grader, my dad was a good-looking guy!

 

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).

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.