"Mom's always been this way. It's just worse now."

I can't tell you how many times I heard that statement from the adult children of a dementia patient struggling with the issue of whether Mom actually had dementia or not. The behaviors were already there -- the constant anxiety about insignificant things that had progressed into paranoia, the constant nattering chatter that no longer had any censor on it at all or, conversely, the tendency to be depressed that had progressed into a complete withdrawal from the world. And now that I live in close proximity to someone who exhibits these characteristics I understand more fully the underlying question: if these obvious signs of dysfunctional behavior were there all along to a lesser extent is this really dementia? And if it is dementia were they always suffering from dementia? As a Family Consultant it led me to question what dementia actually is. And what, if anything, could have been done about it from a behavioral point of view?

There have been multiple studies that have correlated the incidence of Alzheimer's Disease with a much higher then average incidence of depression or excessive anxiety earlier in life. There is also fairly conclusive evidence that people who stay happily actively engaged in life and who use their minds more regularly are more likely to keep their ability to function -- even with the supposedly tell-tale indicators of Alzheimer's Disease that are used to give a more precise "diagnosis" after death. The famous Alzheimer's Disease Nun study is a good place to learn more about that.  I was fairly convinced as a Family Consultant that something could have been done, should have been done, but the "what" eluded me then, continues to confuse me now.

On what level is one allowed to confront a family member with the news that not only are they driving everyone around them crazy, in a very literal sense they might be driving themselves crazy, too?!!! Well, I don't have an obvious answer to that -- and when it's progressed too far, it's in many cases too late!

Perhaps that's why I'm sharing this with you right now. I don't have to do this. I no longer get paid to write these things. But maybe, just maybe, if this message is put out there well enough and often enough by people who do care the idea will get across. Having a happy healthy attitude makes for a better life. Cultivate yours. Help your friends cultivate theirs. And do what you can in your family of origin, too.

Maya Angelou on Aging

In April, Maya Angelou was interviewed by Oprah on her 70+ birthday. Oprah asked her what she thought of growing older. And, there on television, she said it was 'exciting...'

Regarding body changes, she said there were many, occurring every day.....like her breasts. They seem to be in a race to see which will reach her waist, first. The audience laughed so hard they cried. She is such a simple and honest woman, with so much wisdom in her words!

Maya Angelou said this:

'I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.'

'I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.'

'I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life.'

'I've learned that making a 'living' is not the same thing as making a life.'

'I've learned that life sometimes gives you a second chance.'

'I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back...'

'I've learned that whenever I decide something with an open heart, I usually make the right decision.'

'I've learned that even when I have pains, I don't have to be one.'

'I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back...'

'I've learned that I still have a lot to learn...'

'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.'

It's Time to Fight for the Public Option

Working for the Alzheimer's Association and then for Del Mar Caregiver Resource Center taught me one thing. If the people harmed most by our inadequate approach to health and long term care in this country don't stand up for themselves there isn't a chance in hell that anything is going to be done about it. We have a chance to create real healthcare reform in this country right now and the choices we make or don't make today are sure to affect future generations for a long time to come.

Unfortunately, as much as I think it would be preferable to have a bipartisan approach to creating real healthcare reform, the current Congress has proven that that's not something they're capable of doing. As soon as the public option was taken off the table I, along with MOST Americans, gave up. You don't negotiate with terrorists! And that's what the nay-saying Republican stonewalling has become. I say let's stop it now!

CREDO is circulating this petition to get the public option passed without Republican approval. If you agree that it really IS time for a change let's send that message to Congress and the president we elected to pass that change together. Without our action nothing can and will be done. President Obama and most of Congress have already given up on the ability to pass a public option but momentum is building to shift that perception. 119 House Democrats and 20 Senators have already been convinced through earlier CREDO petitions to push a public option through over Republican heads. With enough public outcry the rest of the Senate and House may come on board. They'll have no choice if they want to be re-elected in November.

Send a message to your congressmen and women today!
http://act.credoaction.com/campaign/good_vs_bipartisan/?r_by=7864-1886094-mzBw0zx&rc=confemail1

Early Behavioral Indicators of Dementia

There is a spectrum of behaviors that family members report when it comes to dementia. There's the genetic variant of Alzheimer's that hits relatively early in life and doesn't leave anyone unscathed. The most intelligent competent person in their forties can become completely dysfunctional in a very short few years. That's the worst case scenario and it is NOT the one most people came to me about when I worked for the Alzheimer's Association and Del Mar Caregiver Resource Center.

The more typical situation belonged to the people who became slowly more and more incapable of handling their daily lives, became increasingly more dependent on the people around them, and died usually from some other cause in their 70s or 80s. This is also the most difficult kind of dementia to diagnose and, frequently, no definitive diagnosis becomes available until the behaviors become so intolerable or frightening to someone else that there is no other recourse except to intervene.

People would come to me reporting all kinds of troubling behaviors before their loved one was willing to seek medical attention. "What does it mean when I see that my mother-in-law is letting the bills pile up?" "I went to visit my parents when I went on vacation and I could not believe the state of their refrigerator!" "My grandmother stays in her bathrobe all day and spends the day muttering to herself." "I popped in unexpectedly on my father the other day and found him sitting in his underwear in the dark! He said there was nothing the matter with what he was doing and to leave him alone. Is this the beginning of dementia? How do I know? What do I do?"

I'd do the best I could with the information I had but the truth is there are no hard and fast answers to these questions. And now that I live with some elderly people exhibiting a few of these behaviors themselves I know that my best thinking on the subject was probably wrong! Yikes!

Some people, all of us perhaps, lapse into lazy behaviors when no one is looking. At a certain age, you've probably heard people say, one of the perks is not caring what other people think. I think now that that combination, combined with a lack of desire to change things when family arrives, was behind most of the early behaviors worried family members used to report. That's not to say that these behaviors are not early indicators. They certainly are! But people with depression act the same way and elderly "eccentrics" who don't want to play social games anymore certainly do. Take these people to the doctor and you won't get a definitive diagnosis of any sort of dementia in the early stage. Unfortunately, study after study does tend to show that high levels of depression and social isolation are two of the key determining factors in whether a person develops the disease.  And that's the reason I wanted to write about this today.

Can you help a loved one who is depressed, feels cast off by society, alone and scared? Can you help someone who refuses to accept help? Sometimes you can help bring a lonely loved one back into the fold. Sometimes you have to let go of the outcome, extend a helping hand where it is allowed, and hope that it makes the quality of their lives (and yours) better as far as you're allowed to go.

Being Still, Letting Go

Painting © Copyright 2009 Sheryl Karas

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . .  or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.