Reverse a Stroke by Taking Action Fast

A Facebook friend, Gary W. Bourbonais, wrote this as a service in honor of this month being Stroke Awareness Month. He says "it's worth it if it saves just one life."

Hi Folks....

Back on 12/27/07, I had a clot type stroke in the cortico-spinal area of my brain....I was left with a paralyzed right side, a vague awareness of what was going on, and a face out of a B-rated Horror
Movie.... Because of the extent of the paralysis, I was told I faced the prospect of assisted living...

That scared me more than anything....

Today, I am existing independently, though I need a brace and cane to get around.....My right hand (the prior dominant one) has maybe 20% function, with no fine motor control to speak of...Everything is
harder to do, essentially one handed, and I do get tired easily....

I'm not griping....I'm glad to be alive, and an independent Survivor....My cognition was essentially unaffected....My face is normal, as is my speech....I'm one of the luckier survivors.....

The thing is....had I recognized what was happening to me, I might have none of these affects.... For a clot type stroke, there's a 3-4 hour window when it can be reversed.....I got to the hospital too late to reverse it, but soon enough so I lived...

How common is stroke? It's the third most common cause of death in the US.....Eighty percent of all strokes are the clot type....There are over *6 million* stroke survivors in the US alone....

How to ID a stroke.......S....T....R.......

*REMEMBER* the 1st Three Letters.... S...T...R...

S.....Ask the individual to SMILE.

T.....Ask the person to TALK and SPEAK A SIMPLE SENTENCE
    (Coherently). Example....It is sunny outside today....

R.....Ask him or her to RAISE BOTH ARMS.

If the person (or you), have a problem with any of these tasks, it's time to call 911...

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke...totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.

They've recently extended the window to 4 hours in some cases...

NOTE: Another 'sign' of a stroke is this: Ask the person to 'stick' out their tongue.. If the tongue is 'crooked', if it goes to one side or the other, that is also an indication of a stroke.

Hopefully this bit of knowledge will help some folks in the future.......

Surviving a stroke takes a lot out of a person, both physically and mentally.....

How successful one is depends a lot on the support they have, and believe me, I can personally attest to the need for that support...And thank the folks that provided it to me, from the bottom of my heart...

I found a great online resource for Stroke Support.....It's a free site, started, run by, and for, Stroke Survivors and Caregivers....If you are a Stroke Survivor, or Caregiver, or know someone who is, give
them this link..... http://www.strokeboard.net/

I suspect they'll thank you....It puts you on the Forum discussion page, and you will meet folks who are walking the talk......As a guest, you can read the posts, to get a feel for what the site is about....

http://www.strokeboard.net/

***

F.A.S.T.

Another Anagram is F.A.S.T (Face, Arms, Speech, Time) If they have trouble smiling or something is not "right" with their *Face* (F), if they are unable to hold their *Arms*(A) out in front of themselves at equal height, if their *Speech*(S) is affected or if the words come out Slurred(S), then you need *Time*(T) to be on your side by responding quickly. Don't hesitate. It's better to be wrong than sorry.

***

Care to All....

Get "The Spiritual Journey of Family Caregiving" as an E-Book download

Times are changing and they're changing fast! A few short years ago e-books were a ridiculous notion. Then they became popular and people were encouraged to keep the price of an e-book close to the price of print books so as not to hurt print book sales. Well, not so fast. What's the point of offering an e-book if not to promote the ideas they have to offer at a doable price for people who won't spend the cover price of a brand new book, especially the price of one done on a print-on-demand basis?

So I'm making my book available as an e-book download for just $4.99. What? Will she make any money at that price? I hope so! Especially if you tell your friends. Here's the link to my shop at Healing Communication Press. I hope to have it available for the Kindle as soon as I can, too and other venues as well. Watch this blog for updates.

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.

Codependent No More

In my work as a family consultant I frequently thought my clients could benefit from Melody Beattie's best-selling book Codependent No More. It was written with family members of alcoholics in mind but, really, anybody who lives awhile with a person prone to demented behaviors whether it's caused by alcohol, drugs, mental illness or a dementing illness is in the same boat. We're all attempting to cope with the chaos and pain such a situation causes and we frequently develop some pretty intense coping behaviors in which all our attention gets sucked into obsessing about the person who is creating it. It's natural, it's human but it's damaging just the same.

I recently reread this book after not thinking about it for many years. It still holds up and I recommend it for the chapters on how to focus on yourself without guilt and work with your own anger, grief and pain. You may not be able to walk away as might be recommended for someone dealing with an alcoholic. Caring for a person with a dementing illness typically isn't thought of the same way. But please do take seriously the importance of cultivating detachment, a sense of humor, and time for yourself. It makes all the difference!

Conflict Resolution and Family Caregiving

I used to work as a Family Caregiving Consultant for the Alzheimer's Association and later for Del Mar Caregiver Resource Center in Santa Cruz, CA. Conflict resolution was one of the most challenging aspects of long term family caregiving -- so many factors to be worked out, and such committed and heartfelt views. Here are some excerpts from an article I wrote on the subject back then. A new version of this can be found in my latest book, The Spiritual Journey of Family Caregiving. The book can be found both on my own website and though my shop on Etsy.com.

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Sometimes when I work with families I think of my clients as being on a see-saw. One person in the family voices a very strong opinion about what HAS to happen and another family member insists in an equally loud voice that he or she wants the opposite. The balance of power wildly swings back and forth until one person falls off and the other person (merrily?) goes on their way doing exactly what they want without interference. (Then they come to complain to me that no one in the family "gives a damn" about the person they're taking care of so they have to do everything!)

When I was a kid my friends and I liked to play the see-saw game where the idea was to learn how to keep the see-saw in a balanced position. This was possible but very hard to maintain sitting way out at the ends. But as we learned to move our seats closer and closer towards each other we would eventually get to the point where we could sit in balance with almost no effort at all.

As an adult I forgot the see-saw game and I certainly never applied it to the game of life; but if the laws of physics are, in fact, the laws of nature, then why wouldn't they apply to interactions between people and not just interactions between objects? Let's explore that concept in the arena of conflict in general and then apply it to family caregiving. I'll start with an example from my life.

When I was in my early 20's I had a conversation with a wise elder of the Wampanoag Indian tribe in Massachusetts that made a lasting impression on me. I wanted to change the world, was a staunch vegetarian, and believed that how I lived and the food I ate (or didn't eat) was an integral part of my overall mission. Yet I couldn't understand why my family and many other people rejected my behavior with such vehemence —after all, I was on the side of what was right and good, wasn't I?

Manitonquat said he admired the motivation behind my choices but believed strongly himself that the extremity of my stance was counterproductive. His choice was to teach the sacredness of all things, ourselves included, and to help people feel grateful to the animals and plants that gave their lives for our sustenance. He wanted to help people love the earth and make sure to treat it well regardless of what one ate. He believed that if he could help get mainstream Americans, through love, to only eat as much meat as they needed and to start by experimenting with other yummy protein sources one day a week it would have a much greater impact than converting a small group of people to become total vegetarians (which might not be a sound choice for the planet, in his opinion, anyway).

Now, of course, I didn't really understand what he was talking about until many years later when his words came ringing home. I chose to give up being a vegetarian to cope with serious health concerns and couldn't believe the condemnation I heard from my vegetarian friends for "giving in." Their polarized stance made me feel unloved and angry because I realized if they couldn't support me in a life choice that had an obvious and immediately beneficial impact on my personal well-being, how could they ever expect anyone else to respect their (my old) perspective about what was best for the well-being of the planet (i.e. all of us)? The damage inherent in polarized politics became painfully apparent to me in that moment, as it has quite often in recent times. Now, as a family consultant, I see the impact polarized positions create in the lives of caregivers and, ultimately, in the lives of the people they care for.

On the polarized ends of the see-saw are always two people who are absolutely commited to what they believe is right; yet, it is a rare moment when I see people acknowledge that their commitment is a beautiful thing they have in common! In fact, the reason people often take polarized stances is to counterbalance an extreme position on the other side. Their commitment to justice and fair play, if not love, is what creates the imbalance AND it is that very commitment that can turn things around if they apply the laws of nature skillfully.

Remember, the see-saw game? The way to create balance easily without taking extreme positions is for both people to move closer together. You have to look for sources of commonality and learn to acknowledge what is right about each other's perspective. This is easier said than done but if people didn't have the goal of making things go well (at least from the perspective they see things from) there wouldn't be an argument in the first place. We all want things to go well -- hooray! -- let's see how that can be done.

The most charged and most typical family argument I see every day is the one around the decision to place mom or dad in a nursing home. One sibling, usually a devoted daughter, insists that mom (it's usually the mother) should get to live at home to the bitter end no matter what it takes while other family members believe a nursing home or residential care facility is a better choice. The one who wants mom at home will often say the others obviously don't care about mom—mom always said she'd rather die than be placed in the nursing homes she remembers from her childhood -- and the right thing, the moral thing, is obviously to keep her at home. The other family members feel condemned—they know mom might have a difficult emotional transition to make—but they also see how full-time caregiving is destroying the life of the one who is primarily in charge and, for a wide variety of reasons, they can't or won't do what little sister has done.

So they express themselves in a polarized way to counter the criticism they feel: "No! You're wrong! You're not doing a good enough job! Mom would be better off with her own peer group with trained professionals taking care of her needs!" They believe this is a loving stance, a statement of how much they do care for their parent, but it doesn't come across this way.

Neither side feels heard, both sides feel condemned and unsupported, and the impasse remains in place. What usually happens is the one who wants mom home insists on doing it no matter what and, because other family members don't agree, she gets no help. The breach in family relationships that happens as a result is often never repaired.

But what would happen if one person came closer to the middle of the see-saw and said, "I hear how much you love mom and how much you are trying to meet her needs. Tell me more. How did you come to believe this is the best solution?"

If one person felt truly heard, loved and acknowledged wouldn't they eventually be curious about why their so very loving sibling believed the opposite? Old family arguments and long-standing roles and dynamics obviously play a role in this but often the simple skill of learning to listen when everything inside is screaming "NO! LISTEN TO ME!" makes the biggest difference. Then, of course, it's important to take your turn so the reasons behind your stance are heard as well but that often has to come second.

Then what? Well, I've seen so many different solutions to this particular impasse I find myself amazed at the levels human creativity can achieve when everyone is in alignment with the highest good of everyone involved. If little sister is exhausted by being the primary caregiver and big sister can't help because she lives several states away but is willing to help pay for a nursing home maybe that money could be used for respite care instead. Maybe younger brother who is too emotionally distraught around his parents to want to be involved can be convinced to handle financial arrangements or caregiving responsibilities that don't involve hands-on care. Some people choose to use a nursing facility but come and take their relative out for a walk or a treat every day. Maybe if little sister met Mary, the friend of the family who LOVES her assisted living arrangement, she wouldn't feel so bad about helping mom adjust to a new home. Maybe if mom visited Mary and joined her for a meal and activity session she would suggest moving herself. (I actually HAVE seen this last scenario many more times than once!) But before any of these possibilities can happen, people have to be willing to move their seats closer to the center of the see-saw.

Losing Perspective by Compulsively Trying Harder

Take a look at your hand and pretend that it represents a problem you are having. Now put your hand (your problem) one inch or less away from your nose. What can you see? Not much besides your problem! In fact, if you're like most people you probably can't even see all the edges of the problem, never mind a solution. But if you put your hand down and take in the wider view, you can see the rest of the room and the view outside the window. Your life gets bigger and encompasses more possibilities, the problem seems less overwhelming and you can automatically breathe more deeply which reduces your stress and anxiety.

Caregivers of people with brain-impairing illnesses often find their lives reduced to nothing more than taking care of that other person. When I ask how they are or what's new nine times out of ten my clients respond by telling me how their patients are. I have to persist in getting my clients to open their focus wide enough to even include their own health.

I understand this. I'm the same way! The only thing in my life is the problem I'm having and if it can't be resolved right away I just try to focus harder. I try to control what's going to happen because the crisis makes me afraid. I think about the problem constantly, turning it over and over in my mind attempting to figure out what couldn't be figured out before. I reject proposed solutions out of hand if they don't match my imagined vision of how things "have" to go and then chastise myself for supposed "missed" opportunities. I'm damned if I do, damned if I don't because clearly if things aren't going the way I want them to after all this time there's something I must have done wrong and, therefore, I ABSOLUTELY MUST TRY HARDER! And don't you try to distract me away from this intense focus. I KNOW I'm right to be trying so hard because -- can't you see? -- I obviously haven't succeeded yet! The problem's still here!

Can anyone live a satisfying life like this? Sometimes you just have to take a break.

There are people with cancer who somehow continue to live satisfying lives. I always find their stories fascinating because if I were in their shoes I know I would frantically put all my attention on surviving. Yet I recently read a wonderful story about a woman with a recent cancer diagnosis who opened my eyes because she started out doing exactly what I would do. She researched all the latest conventional and alternative therapies, she changed her diet, started exercising, did visualizations and worked very hard to control her feelings because she read that she "couldn't afford a single negative thought." Her life became reduced to her illness and what she was doing to combat it.

Then one day she woke up. All her time was consumed with surviving but what was she surviving for?

It suddenly occurred to her that she had to put her illness into the context of a much wider life - that if she had a reason to live and spent more of her time doing exactly THAT she at least wouldn't have wasted the time she had left. So she took a break and went on a healing retreat where she could be cared for and take some time to rest, meditate, relax and dream. She asked herself the question: since she didn't know how much time she had left (and nobody does know how much time they have) how did she want to spend that time? What made her heart sing? What gave life meaning? How could she leave a legacy or make a difference in someone else's life? What did she want to remember on her death bed that she hadn't experienced yet?

She didn't give up her cancer-fighting protocol but she now saw these activities as a beginning in making her life happen. The steps she took to deal with the cancer slowly started to take up less of her time as she started to shift her attention to what gave her life meaning. Some of her anxiety and fear faded away -- she was too busy focussing on the beauty, wonder and intensely interesting activities of the present moment -- and her enjoyment of life increased. The tumor has not changed size -- at least not yet -- but it does seem a lot smaller in her psyche. It doesn't really matter how the story ends. We don't know yet whether she'll beat this scary monster or not. But she's bigger than that. Her existence is shaped by her illness but it encompasses more life, more dreams, more of who she is and that makes all the difference.

We can't always control what happens in life. Earthquakes happen, our lives get disrupted and we have to spend time picking up the pieces and making new choices instead of doing what we thought we most desired. The roof falls in. Do you walk away and start over somewhere else or do you hold your ground and rebuild? The parent who has abused you all your life needs caregiving assistance. Do you hire people to help her and feel guilty because you're not there or do you do the work "like a good daughter" while she continues to make your life hell? Your loving partner has a brain injury from which he will never recover. After the initial crisis has passed, do you ask for a divorce or stay by his side even though he will never be able to be a real partner for anyone ever again? These are not easy questions with straight forward answers. Neither are they situations where you just do what needs to be done, solve the problem as quickly as possible and get back to your old life. There are moral struggles, practical implications, sometimes heartbreaking consequences no matter what you do.

Sometimes the answer is to step back. Take a break, get a fresh perspective.

Ask yourself what gives life meaning, what makes it worthwhile and, if possible, try to find ways to incorporate your highest values into the life you have now. Given what has happened how do you wish to respond? What are your priorities in this life situation? How do these priorities fit with your deepest values, hopes and dreams? This has nothing to do with "shoulds" and moralistic expectations. It has nothing to do with what you hoped to have in your life at this time. It's about what matters in the present moment and what -- over time -- you want to work towards.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. If you like what you read on this site, why not buy the book? You'll be glad you did!

Loneliness May Be Hazardous To Your Health

Social isolation and loneliness is a major contributing factor in all kinds of illnesses. A famous study exposed paid volunteers to a cold virus and then recorded how many actually came down with symptoms. It was found that those who described themselves as more lonely or isolated were far more likely to get sick. Other studies have shown that loneliness increases the risk of heart disease and cancer and reduces the life expectancy of those already diagnosed. A recent article in Science News reported that people who live alone are 50% more likely to develop dementia than others and that those who live alone and have no friends are 60% more at risk. It is my opinion that loneliness is probably more dangerous than smoking, lack of exercise and poor diet combined and there are some physicians who are beginning to agree.

Dr Dean Ornish became famous for his multi-faceted program for recovery from heart disease. It included a very strict diet, exercise, meditation and support group participation. He had tremendous results and assumed that the most important factors were the exercise and diet plans. However, his follow-up research did not bear this out. In his most recent book Love and Survival: The Scientific Basis for the Healing Power of Intimacy he writes that he is now convinced that, although diet and exercise is important to the success of his program, the single most effective factor seems to be the support group. People who feel loved and cared for thrive.

It is theorized that having only one strong social bond isn't as effective as having a variety of social relationships which is why a support group can be so effective. Strong family relationships or church and community ties are equally helpful. So my question to you all today is: how are your friendships and social ties? Is there a way they could be strengthened? Are there social activities you would like to try but keep putting off? Make social activity a priority and see how it affects your life. It's well worth the effort over time.

From my book The Spiritual Journey of Family Caregiving, available directly from me for $14.95 plus shipping.

Gratefulness and Family Caregiving

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

Flat Land

Excerpted from the Spiritual Journey of Family Caregiving, available directly from me for $14.95.

A few months ago I had lunch with Mark O'Neil, an interfaith minister writing a book on spiritual lessons he learned on a cross-country bicycle trip with other people. He told me that when the going was rough, cycling up mountains, all the riders could think about was flat land when everything would be easy. That's all they could think about mile after mile and then finally they got there. Kansas, Utah, Nebraska! Blissful relief!

At first.

But then the reality of flat land would hit: mile after mile of unrelenting boredom. Cornfields and unchanging vistas for as far as the eye could see. It eventually dawned on them that as hard as the mountainous roads were, they were far preferable, far more interesting, and a lot more fun.

I had a similar experience recently. I finally got away for a long weekend in the country. Life had been so stressful that I had made no plans and brought no projects, not even a book to read. I was looking forward to a long weekend with nothing to do, socializing with friends and enjoying the scenery. It was great for the first day and a half. But there were no hiking trails nearby and I didn't have access to our car for much of the time. Suddenly the reality of being stuck in the country with nothing to do sunk in -- I felt trapped! Hours of unrelenting boredom! I wanted to do something, go somewhere -- anything would do! What seemed like heaven on earth quickly turned into hell. (Clearly, I wasn't into the idea of this becoming a meditation retreat!)

On the way home our car broke down in San Francisco just after we got off the Golden Gate Bridge. I normally think of that kind of an experience as a disaster -- stuck in the city on a heavily traveled street with cars whizzing by narrowly missing our vehicle, waiting for hours for a tow truck to take us safely home. But instead of feeling awful I was struck by how uplifted and excited I was. Finally, I was having an adventure! It had challenges, perils, and involved interesting experiences I never had had before. We met wonderful people who helped us call for help and got us off the Presidio and onto a quieter, safer street nearby. We played a game while waiting for help: trying to guess at what point cars would notice our flashers and pull into the next lane and trying to see if we could influence drivers to pull over more quickly through prayer and psychic intervention (it actually worked!). We noticed and commented on the weird variety of reactions people had to seeing us stopped by the side of the road -- everything from kind suggestions for help to yelling at us for tying up traffic! We got to have the fire department inspect our car to see if it was a fire hazard and then watched the process of having our vehicle lifted onto a flatbed truck and hauled to Santa Cruz. In short, even though parts of it were very stressful, this "bad" experience was the most interesting and engaging thing that happened all weekend.

So what does this have to do with caregiving? Well, I've noticed in the caregiving support groups I lead that when week after week people report that nothing has changed, nothing is happening, the energy level of the group appears to drop. It's like everything is stuck in a rut and, instead of enjoying the calm, people seem demoralized. But when something does happen, when there's a crisis or a change that needs to be accommodated, the group rises to the occasion with vim and vigor. People become energized, interested, they get ready for action or do what they can to pump up the person who needs to take action. It's quite inspiring as a support group leader to watch everyone come together to help one person figure out how to do what needs to be done.

Right now, we're not on flat land. Our country is on red alert, watching, waiting to see what's going to happen next. [This was written not long after 9/11.] I see the stress on everyone's face and recognize it in myself; yet, I'm also energized. I'm awake. I'm interested and engaged in what's happening in the world in a way that felt more difficult a few weeks ago. And I'm not alone. Suddenly we all have an urgency to do what needs to be done and an acknowledgment that this isn't something we can do alone.

And neither is family caregiving.

The message for today is together we can do whatever needs to be done. People in a common struggle help each other out. That's what happened in New York. That's what happened here in Santa Cruz after the '89 earthquake. In a crisis you can't just wait for the Marines -- they're busy! You depend on whoever is available and they depend on you. Are you getting overwhelmed by caregiving but close-by family and friends are hard to find? Notice who is in the struggle with you: your fellow caregivers! Join an online support group. Join an in-person support group. Then call these people up and exchange friendship and support. Hire an in-home support person together for an afternoon and go to the movies. Invite each other over for dinner with your patients. Then make a pact to call each other for support when you need extra help. This is different from imposing -- it's a mutual agreement to help each other through whatever needs to happen. Not only that, you get to have more fun. Three women I know who met each other through an Alzheimer's support group, support each other to get respite and take weekend trips together. You should see their happy relaxed faces in the photos they took of their last trip to Tahoe! Their partners are steadily getting worse. None of these women are on flat land -- they're climbing mountains -- but they're starting to have fun along the way and they know they'll have support through thick and thin.

Rosemary is For Remembrance

"There's rosemary; that's for remembrance.
Pray, love, remember."
~Shakespeare, Hamlet

Paul's mom sent us a nice article about aromatherapy that she clipped from Prevention Magazine. In it was reported that a study with college students at the University of Northumbria showed a significant increase in memory and feelings of alertness for those who used rosemary essential oil as compared to a control group. Oddly, the Prevention Magazine article did not report that the study also showed that rosemary slowed memory recall for the same test subjects. In other words, the students outperformed other students in two different kinds of memory tests (and felt more awake doing it) but took a little longer to come up with the results. Hmmm. Could it be that if we stay awake and slow down our brains function better?

I took a quick look around the internet to see if I could find more about this. According to research done by the Burnham Institute for Medical Research there are ingredients in the rosemary herb that protect the brain from the injurious effects of free radical production. Free radicals are thought to contribute to a wide variety of neurological conditions such as stroke and Alzheimer’s in addition to what is considered "normal" age-related memory loss. You can read more about free radicals in another blog I wrote here. In that post I was talking about antioxidants such as those found in blueberries that have a useful effect in counteracting free radical reproduction in the human body. It turns out that the carnosol and carnosic acid found in rosemary are powerful antioxidants. In addition to having a significant effect on memory loss they have been shown to have a protective effect against cancer.

Scientists are hard at work trying to use these findings to create powerful drugs which could be used for the same purpose. Meanwhile it couldn't hurt to add a little rosemary into your life. I like it in my garden--I can't seem to resist picking a little bit and rubbing the leaves between my fingers whenever I can. The smell is irresistible. I use it in my Mama Love for Focussed Attention perfume.

Deciding to Use a Nursing Home

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it now by clicking here!

The decision to place a loved one in a nursing home is always tough. We feel horrified by the options available to us. We feel guilty. We worry that the move will send our loved one into a tailspin. But when caring for a loved one at home requires more emotional and physical resources than you have available using a skilled nursing facility is sometimes the best decision. Consider the cost to everyone involved.

I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. She had lost all her friends because she was never available to see them. She was unable to sleep because her mother would call for help several times a night, and she was losing her hair from worry and stress. There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. Her doctor insisted that her mom be placed immediately.

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

The most loving option is to do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support the placed person needs to weather such a difficult transition in the best way possible. This shift in role begins the moment you start to prepare for making the move.

Preparing for Making the Move

Step 1. Prove the Need. What are the costs involved in keeping the patient at home? Is the patient’s safety at risk? Is a single caregiver being expected to meet all the patient’s needs at the risk of their own health and well-being? Are there community services or paid services available that are adequate to keep the patient at home?

Step 2. Involve the Family. The whole family needs to be in agreement about this decision as much as possible. Family meetings are hard to arrange when people live out of town or have busy schedules. It can be emotionally difficult to face the fears and guilt and sadness such a choice entails. But for the good of family relations an effort to communicate via telephone or email must be made. Let everyone express their feelings without attack. Decide as a group to put each person’s needs ahead of other people’s desires and make choices based on what’s best for all concerned. Ideally, the patient should be involved in this meeting but when dementia is fairly progressed that is not always the most prudent path. Also, if family members have differences of opinion which cannot be easily resolved it can be very helpful to do this kind of preplanning with an objective third party acting as facilitator.

Step 3. Talk to the Patient. This has got to be one of the hardest things to do. The ideal situation is to approach the patient with honesty and a clear explanation of the reasons why the family wants them to consider this option. If the patient has enough savvy to be able to make rational choices about their future include them in the decision-making process from the start. You may find that with enough advance preparation they may actually feel relieved that their needs and the needs of their family are being well thought about.

Sometimes, though, the demented relative completely forgets that any discussion took place or is too volatile to be included in the first place. In any case, the patient is likely to need (or demand) a chance to express their full feelings. Responses like “How could you do this to me?” or “I’d rather die than go to a nursing home” are expressions of fear and grief. It can be hard to be treated with such reproach but consider what you might need if you were in their shoes and reach for the most loving approach you can. Acknowledge the pain they are feeling as best you can, but resist letting yourself be guilt-tripped into making a choice that is simply not sustainable. Allowing your patient’s fear to run the show is not, in the long run, healthy for either one of you. Stay firm. Stay loving. Get help with the feelings that come up by talking to a counselor, a supportive family member or friend.

Step 4. Begin Your Search. Now it’s time to visit homes if you haven’t already. Get on waiting lists. Talk to your financial and legal advisors. Talk to your local senior service agencies to find out what kinds of complaints have been registered (if any) about the homes you are interested in. Take your time. Plan ahead if possible so you don’t have to make a swift decision from a limited number of choices. And keep in mind that in many parts of the country there is a shortage of space in local homes and waiting lists are the norm. The wait for MediCal or Medicare-paid beds can be even longer. You may need to expand your search for facilities to another county or even further away. The commute may be inconvenient, but the quality and price of the facility might be worth the ride. Be flexible. Be brave. Let go of finding the perfect situation and you’ll get what you need.

Should My Relative Move into an Assisted Living Facility?

First, what’s great about assisted living?

Assisted living is NOT nursing home care! Most people get a horrified expression on their faces when I suggest they look into assisted living for their relatives but I’ve met many other people who happily have chosen this option for themselves to retain their independence and enjoyment of living longer. Assisted living communities can be a great source of new friendships. Most of them offer activities that beat sitting by yourself in front of the television any day. Some provide transportation to things people want to do and all of them provide meal preparation, housecleaning assistance and personal care services that would otherwise be hard to manage. Assisted living frees family members from the burden of juggling caregiving with dual careers and child-rearing. It can give an overstressed spouse a chance to rest at night and can even be used, in some cases, for a week to a month of respite for those caregivers intent on mostly caring for a loved one at home.

What’s not great about assisted living?

It’s expensive. $3000-$6000/month is not unusual in this area. MediCal and Medicare do not cover assisted living and neither do many long-term care insurance policies. (Be sure to read the fine print!) However, the reality is that 24 hour in-home care is much more expensive and, when a person is willing to move, there is often a house that can then be sold to pay for services. Unfortunately, for many families the choice to use either facility care or extensive in-home services is, financially, out of the question.

Also, change, by it’s very nature, is disruptive and stressful. Moving into a new home can be especially traumatic for people who have lived in one place many years and have their whole identities wrapped up in their home environments. Dementia patients almost always go through a period of increased disorientation when they move. If they are prone to having catastrophic reactions, these displays of intense emotion are much more likely to occur in the wake of a move and caregivers who don’t expect this can be wracked with anguish and grief. Even healthy people go through incredible grief and loss at the reality of dismantling a beloved home and trying to reduce a household of belongings into what will fit in a 1-2 room apartment. New routines, diminished expectations, and being surrounded by a sea of unfamiliar wrinkled faces can bring thoughts and fears about one’s own age and mortality into sharper focus. If part of one’s belief system includes a fear of dying alone among strangers, it can feel as if one’s worst nightmares have come true.

None of these are reasons not to choose assisted living and not all people have reactions even close to this. The earlier in the course of the disease such a choice is made, the better in terms of ease of adjustment. In fact, many of my clients have been pleasantly surprised by how well their loved one adjusted to their new homes and how easily they made new friends. Some people positively thrive and come back to life. Still, it is foolish to ignore the downside. I hear just as many stories about people who gave up on living as soon as they left home and died.

So how is an exhausted caregiver supposed to make such a difficult decision?

You need to address the worries and needs of the care receiver as much as possible while doing what has to be done for your own physical health and mental well-being. Nobody benefits when a caregiver dies or goes into physical decline as a result of trying to do too much. Then there are two patients instead of one and the care receiver almost always winds up in a facility anyway—only instead of having the support their dearest loved one would have provided, they have none.

If using an assisted living facility is something the family is willing to consider, start visiting them early. Educate yourself on who provides the services and environment you prefer in a price range you can consider. Make peace with not leaving your children an inheritance or, if it’s not too late, get a long term care insurance policy that covers assisted living care.

Choose to focus on the positives when you introduce the concept of assisted living to your relative and the rest of the family. Bring the care receiver for a visit during lunch or at a time when an activity they might enjoy is planned. If you have friends or family who deliberately chose this arrangement for their retirement take advantage of their help and positive mental attitude by visiting or talking with them by phone. Alternatively, ask the facility if they have any happy residents who might be willing to chat with you. Find out why they like it and how they made their decision. Knowing others who are having a positive experience goes a long way towards dispelling many of the fears you and your family members may be carrying.

Also, understand that using facility care does not mean giving up on providing your own loving care. Reject the stereotype of the heartless relative who dumps their patient in a rest home and forgets about them. Families can still maintain a loving connection even when a demented loved one lives in a separate place. I know caregivers who pick up their patients every day to go for a drive, go out for ice cream, take in a movie or go for a walk and report that their relationships are sweeter because they can focus on love and creating pleasant experiences instead of on how to survive the stress of not getting enough sleep and providing constant supervision. The care facility provides the much needed hands-on care and respite so the caregiver is free to be a daughter, son, spouse or friend again.

Should I Move My Parents In With Me?

The following blog is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me for $14.95 plus shipping.

I wish more people would ask me this question before going ahead and doing it. It can be a great solution IF the caregiver is prepared for what it will really mean. Too often, though, people have an overly romantic notion about how great it will be for their children to have their grandparents nearby and how wonderful it will be to have a closer relationship with mom and dad. They look forward to the move only to find out that dementia has changed grandpa into a mean-spirited person who spouts obscenities and grandma is so used to having her way in her own home that she is not prepared for the shift in role being a member of a combined household can mean.

Even in the very best of situations it is not simple to lose your autonomy after years of being independent. It’s hard for parents to be the rulers of their own roost and suddenly have to learn to negotiate and compromise. It’s devastating to have to lose a lifetime of belongings and the precious memories each of those possessions holds to move into a smaller space. Even young healthy people find it challenging to make the shifts and changes a new living arrangement tends to entail, especially when it involves multiple people and long-standing family dynamics. For elders, it’s doubly so.

People who have lived all their lives in multiple family households do the best... but I rarely meet those people because large extended family units who band together to share the work don’t tend to need my assistance so much. It can also work well if a family has a private apartment on the same property so their parents have their own domain and the caregiver’s family maintains its privacy and daily routines. When people choose to share a more limited space, communication about beliefs and expectations needs to be particularly clear, and there needs to be patience with the shifts and changes and negotiation living together often entails. It can be very rewarding. Mutual exchange between the generations really CAN be one of the best things you could do. But it’s equally important to plan ahead for the challenges and pitfalls. Ask yourself the following questions:

1. Can you and your parent speak honestly and openly? Do you communicate well enough to work out differences of opinion?
2. Do you and your parent have unresolved conflicts between you?
3. Is there enough room in your house for everyone to have sufficient privacy?
4. Is your home able to be adapted for someone who may have disabilities or whose mobility might be impaired? Are there specific needs that may require remodeling? Can you afford to do it?
5. Have you determined how much care your parent will need? Can you realistically provide that much care?
6. What will happen if more care is needed? Have you talked about long-term arrangements?
7. How do all members of the family feel about this decision? Is anyone going to be resentful or unhappy? Are you prepared to deal with that?
8. Are you ready to state the rules of your household and set limits on what you will or will not do? Will your parent be able to accept these expectations and limitations?
9. How do you really feel about sharing your household? Will you be able to give up some of your autonomy in order to allow your parents to have some say in decision-making and household responsibilities? Have you created strategies to address these concerns, if any?
10. Will you be able to find other living arrangements for your parent if the situation is no longer working?
11. What will be great about living together? Will the advantages outweigh the disadvantages?

These questions represent only the tip of the iceberg. The Family Caregiving Alliance has a well-written and very thorough fact sheet on their website called “Home Away from Home: Relocating Your Parents.” If this is your issue it’s well worth a read!

Should I Move in with Grandma?

This blog post is excerpted from my book The Spiritual Journey of Family Caregiving. Buy it directly from me for $14.95.

I’ve had a number of young people in their 20’s or early 30’s decide to take on the caregiving of a beloved grandparent while staying in the grandparent’s house. Because the cost of housing is so high in the Santa Cruz area many people think doing caregiving in exchange for housing is a good deal. Grandma gets in-home care for free, the rest of the family doesn’t have to worry about her, and the grandchild has a place to live for free while figuring out what they’re going to do next. Everyone wins, right? Not so fast! The typical scenario goes like this:

Grandma has been living at home without supervision for a long time but then does something that scares the family often enough that they decide she needs more help. They offer this great arrangement to a granddaughter who is currently unemployed, just got divorced or never married and has no children. She’s the one person in the family with the fewest responsibilities and the greatest need, and she loves grandma, so she says yes. Nobody including the granddaughter thinks that grandma needs more than a few hours of assistance a day because, after all, she’s been living alone up until now. It looks like a pretty easy assignment.

So granddaughter moves in and the first thing she sees is that it takes grandma three hours to take a shower, get dressed and have breakfast (if she does any of these things at all.) Nobody has been around to see this and grandma always said she was fine and didn’t need any help. She was always dressed by the time the family saw her and she still had her social skills except for the obvious memory lapses so it appeared everything was going okay. But now granddaughter sees how hard things are for her and thinks, “Oh my goodness, this is terrible. I can’t let her struggle like this!” So she does the compassionate thing and helps grandma shower, get dressed and undressed and makes all her meals in addition to whatever else the family assumed she’d be doing.

Then granddaughter finds grandma’s handbag in the dishwasher when she’s cleaning up one day. She sees that grandma cannot remember the sequence of events needed to make a peanut butter sandwich. She sees that grandma doesn’t remember how the microwave works and leaves the heat turned up on the stove all day or the water running. Not only that, grandma starts demanding more and more attention—some of it she needs, some she just expects, sometimes it’s once or twice in the middle of the night. Sometimes she doesn’t know who the caregiver is and yells at her for invading her home or accuses her of stealing items she continually misplaces. Granddaughter was only supposed to do some light housecleaning, make sure medication was taken correctly, make the evening meal and be available if grandma needed her at night. She was going to take community college classes or get some job training but now she’s afraid to leave grandma alone during the day. Can someone who acts like this be trusted alone by herself? Could she even remember to dial 911 in an emergency? In almost no time at all the caregiver is a prisoner in the home, she has no time to do what she needs to do about her own life, she starts asking for help, and the family doesn’t understand why.

Then I hear the following complaints: “What’s her problem?!! She has free room and board! I have to work hard to put food on the table for my family and all she has to do is sit around and give grandma her meals and medication. Grandma was getting dressed by herself before! She must be making her dependent. And, personally, I think she’s just trying to take advantage of all of us. Grandma says she’s been stealing from her! Can you imagine that? The nerve of her! She just wants a free ride!” This is not a win-win situation.

Before arrangements like this are made the family needs to know a few facts.

First, everyone needs education on the typical course of the illness Grandma is diagnosed with. Read The 36-Hour Day or some other comprehensive dementia-care classic. Even those who don’t plan to do any hands-on care should know what kinds of things the hands-on caregiver is likely to encounter so they know what to expect.

Second, it’s important to be aware of the value of the services a live-in caregiver provides. One home care agency we work with (in Santa Cruz) charges $265 a day for a 24-hr live-in assistant. The same agency charges $18/hr for shorter lengths of time. Other homecare agencies charge a lot more. If you advertise through the newspaper you might find an independent home-care worker who will charge $12-15/hr but no matter how you do the math, daily live-in help is worth a lot!

But getting free room and board is worth a lot, too, you say? Again, let’s do the math! A typical studio apartment or small one-bedroom in the city of Santa Cruz rents for between $850-1200 a month. Shared housing (two or more people sharing a multi-bedroom house) runs between $550-800 per bedroom (although a few “bargains” exist in converted storage sheds or by choosing to live in a more remote or run-down location.) If the caregiver has a private bedroom, all utilities paid, and access to the entire house and yard, in Santa Cruz that work exchange could be worth about $750/month or more. At $15/hr, $750 will buy you 50 hours/month of homecare services or 12 hours/week. In lower rent districts, the number of work exchange hours would be even less. But this is family, you say? OK, but even if the service is valued at the minimum wage of $6.75, that’s 111 hours/month or less than 25 hours/week. Under any circumstance, for their basic health and well-being, the caregiver should still have a few days or evenings off.

If a family member cannot be trusted to live in their home alone anymore, it’s important to understand that, eventually, more than one person will need to be involved in their care. Live-in arrangements need to include regular time off and, if the time required for caregiving prevents the caregiver from having a normal part-time job, adequate compensation in addition to room and board should be provided to give the caregiver an income and a reasonable standard of living.

Making Choices About Living Arrangements for Dementia Patients

The following post is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me, autographed, for $14.95 plus shipping.

To Move or Not to Move

I moved this past month and coincidentally (or not) almost all of my new clients this month have been grappling with issues related to moving. Should I move my mom in with me? Should I move closer to her? Should I be looking for a nursing home or an assisted living facility for my relative? How can I avoid moving my spouse? These are big questions with few simple answers. Moving is stressful even under the best of circumstances but when dementia is part of the picture some kind of change in living arrangement is almost always absolutely necessary as time goes by. This is such a big issue we’ll be looking at various aspects of it over the next few months. I hope it helps sort things out for those of you grappling with this very challenging subject.

The Choice to Keep a Loved One at Home

This is by far the most popular choice, the one most people say they want. And yet, with Alzheimer’s Disease and other progressive dementing illnesses, it is a choice that many people will say is impossible. The Number One complaint I hear from caregivers is that somebody they trusted tried to convince them to place their relative despite their wish to do otherwise. Instead of receiving help in how to keep their relative home they heard “You can’t expect to be able to do this! It’ll kill you!”

Please understand the love and concern behind such a statement. According to the Journal of the American Medical Association (JAMA), in an article printed a few years ago, dementia caregivers over the age of 60 die at a much higher rate than people who are not caregiving. And yet, a new study recently published in the New England Journal of Medicine found that a year after the death of an Alzheimer’s patient, hands-on caregivers were less depressed than those who moved their loved one to a nursing home. Even though taking care of a person with Alzheimer’s Disease is known to be harder on people than taking care of someone with cancer or many other diseases, death appears to bring closure for caregivers while institutionalization can bring guilt and loneliness. In my work with family caregivers I’ve noticed that if the caregiver has enough help to handle the stresses involved, caregiving at home brings the highest sense of satisfaction. There’s the pride and increased self-esteem that comes with the completion of any hard job and relief that the journey is over. Hands-on caregiving also gives the opportunity to heal old wounds or make amends for past behavior.

What you most need to know is that most of the time caring for someone with dementia at home CAN be done and—if you are willing to do whatever it takes—it is often the best solution for all concerned. The key, though, is being willing and able to do whatever it takes.

• Are you willing to ask for help?
• Are you willing to make changes in your home environment and normal routines?
• Are you willing to accept help from wherever it comes (family, friends, neighbors, church members, and community agencies) even if you would prefer that your problems be kept in the family?
• Are you willing and able to have care workers in your home 24 hours a day at the very end?
• Are you willing to deal with incontinence, difficult behaviors and physical disability for as long as it takes, even 10-15 years?
• Most importantly, are you willing to do whatever it takes to take care of yourself so you are able to be a caregiver as long as you desire?

You CAN do this work if it’s your highest heart’s desire. The first caregiver I met through the Alzheimer’s Association was a woman in her 90s who proudly cared for her husband at home until he died. I’ve met caregivers so frail I couldn’t believe they weren’t patients themselves who steadfastly stayed the course. They usually (but not always!) have a patient who is sweet and appreciative, they accept help wherever it comes from, and they know in their hearts, without any doubt, that this work is their highest calling.

Not everyone is so lucky.

Some patients are abusive, keep the family up all night, wander, or have a history of having been so difficult throughout their lives that people who could have helped stay away. If solutions are not found for these problems, home care can become a nightmare.

Some people don’t have family members who can help, refuse to ask assistance of neighbors or friends and can’t or won’t pay for services. Some people have chaotic work schedules, are raising small children, and can’t meet the needs of someone with severe and worsening dementia as time goes on without a lot of help. Some have health problems of their own and others have made choices that make long-term caregiving an impossibility. Then different solutions have to be found.

But let’s assume, for this article, that you’re going to make this choice. What needs to happen to make that successful? The following list of suggestions is the best place to begin no matter what decisions you make about caring for your relative but they are absolutely essential for anyone planning to care for a loved one at home.

1. Find out everything you can about the typical course of the illness or conditions you are grappling with. What are the most likely issues to arise? What is the worst case scenario? What agencies provide services you might need? Where can you get more information?

2. Call a family meeting. Include your patient if they are still capable of making choices and planning for the future. The purpose of the meeting is to educate people about the disease and make sure everyone is on the same page when it comes to what’s coming next. Choices will have to be made about care and who can provide it or pay for it. If your patient will need 24-hour care, eventually, the job will not be possible to do at home if it falls to one or two people alone.

People need to sleep, eat, get plenty of exercise and social contact and have ways to find enjoyment in life. A plan that does not include an adequate night’s sleep and time off for rest and recreation is not a realistic plan. How will the family divide the work or find and hire workers to supplement the work family members do? What community services is the caregiver or patient eligible for? What will your insurance plan cover? What resources do you have to pay for care (rainy day savings, a line of credit or a reverse mortgage on the house, etc.) Is there an extra room for a care worker to spend the night or can family members take turns doing night care duty? Will people need training to handle incontinence, lifting and helping the patient move from a bed to a chair, or managing difficult behaviors? There needs to be a contingency plan made for the worst case scenario.

If you don’t have all the information you need at this first meeting, split up the task of finding the information and schedule more meetings until a plan of action is in place. Expect that the plan will change because the true course of the illness is what will dictate the actions required and that can never be predicted 100% in advance. But at least you will have talked about possible scenarios and will have done the advance planning required to allow your most desired outcome a chance to come true.

3. Based on what was discussed at the family meetings, make any needed appointments with attorneys and/or financial planners. You need to know how to invest or free up money wisely and legal documents need to be written that will allow a person you designate to make necessary decisions for you and your loved one should one or both of you become incapacitated and unable to make decisions for yourself.

4. Learn to let go and share the caregiving with others before you think you “need” to. Your loved one needs to get used to receiving help from others BEFORE a crisis forces such a change to occur. Get in the habit of having time off every week for your own interests. Most people with dementia become very dependent on the person who provides them care. Don’t let that responsibility be yours alone!

5. Make taking care of your own physical and emotional health your highest priority. Forgive me if you’ve heard this before but, as on an airplane, you must put your own oxygen mask on first before attempting to help other people. Create an enjoyable routine that includes adequate rest, exercise, nutritious meals, social contact and recreational activities. If/when caregiving activities start to eat into that time a big red flag should come up for you. Never skimp on these activities except in an emergency and know that an “emergency” that lasts more than a few weeks is not an emergency—it’s time to make a change in how caregiving is done and how much help you need to have.

6. Join a support group either in person or online. You don’t have to tough it out on your own even you have no family or friends nearby. A group of people who understand what you are going through can even be a better source of support than long-time friends who don’t know how to help in exactly the way you need. In a support group you’ll make new friends, share some laughs, maybe even create a caregiving cooperative to spread the work around and lighten the load. And there’s nothing like getting input from a variety of sources for inspiring you with how human creativity can come up with solutions for just about any challenge you may encounter.

7. Keep a notebook with all the information anyone would need to provide care for your loved one inside. List all the medication he or she is taking, what they are for and how and when they need to be taken. Have emergency contacts with social security numbers, Medicare and MediCal information, health insurance numbers and anything else a person filling in for you would need to have in an emergency.

8. Call family and friends regularly and keep them informed of what’s happening. Keep them involved by sharing your concerns and help them help you by planning respite breaks or by accepting their offers to be of assistance in other ways. A home-cooked meal brought over with a loving smile can go a long way when times get rough. Say “yes” when people ask to help and insist that they let you help them.

Is It Really that Hard to Find Good Paid Help?

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving, available for sale directly from me.

Most caregivers I meet report trouble in finding qualified paid caregivers to take care of their relatives. Nursing homes and in-home support agencies report similar difficulties. In fact, we appear to be in the midst of an insurmountable crisis in caregiver support in this city... but is this really the whole picture?

Most of my clients do not need skilled nursing care for their relative. They just need respite, someone to be with their relative and keep them safe while they take a break or go to the grocery store. They need someone with the ability to follow directions, make a lunch, wash some dishes, take the patient for a walk, or sit and read a book while the patient takes a nap. Everybody wants an experienced person with credentials but what most people need most is a “patient-sitter.”

One of my clients has had no trouble finding the help she needs. She hires college students to take her mom to her physical therapy appointments, do some light housework, run errands, or simply sit and do schoolwork in the living room so her mom will not be alone when she needs help getting up from a chair or going to the bathroom. She can leave her mother for long periods and gets all the respite she needs, knowing that in an emergency someone with the ability to call for help will be there. Her college students know nothing about dementia but they learn quickly. She borrows books and videos from the Alzheimer’s Association to teach them what they have to know. It’s not perfect—some people don’t work out—and she’s lucky that her mother is not combative and seems to enjoy the company. She’s also not able to depend on only one person for all the times she needs help—she’s had to hire several who are available for different days and times. It’s a lot more work than simply hiring an agency; but the payoff has been terrific.

The going rate for hiring a “patient-sitter” (in Santa Cruz, CA in the year 2001) is $8-12/hour, depending on experience. Is it worth it? Well... was it worth it to hire a teenager with even less life experience to babysit when you wanted a night out then? If you are willing to take the time to provide training it will be safe enough and well worth the effort.

For those able and willing to take advantage of it, there’s a large relatively untapped market for caregiver support:

College Students. To hire a college student from a local college or university, call the school’s Student Employment Office.

Mature Women. Women attempting to re-enter the workplace after raising their families often make good caregivers. Contact the local YWCAs, college Women’s Centers, and state and local employment agencies and temp agencies such as Manpower or Kelly Services.

Church Members. Put a flyer on the bulletin board or post a notice in the church bulletin.

Retired Persons. Post a flyer in mobile home parks, retirement communities, senior centers, or libraries.

Healing Through the Human Energy Field

The following blog is an excerpt from The Spiritual Journey of Family Caregiving.

In the July/August 1998 edition of the American Journal of Alzheimer’s Disease a very interesting article was published on the use of a new approach for increasing the quality of life for both patients and caregivers. The article described in great detail the results of a study conducted at the Alzheimer’s Resource Center of Connecticut in 1996 and 97. Using this approach, staff at this 120 bed skilled nursing facility discovered that a profound state of relaxation could be induced in a patient within 5-10 minutes without the use of drugs or any invasive techniques. Even fairly agitated patients who were rocking or calling out from their beds could be calmed in a reliable and rapid way. Fewer medications needed to be used, and positive feelings between patients, staff and family members increased. What was this new treatment? An old one—”laying on of hands”—in a new guise called Therapeutic Touch.

It may seem unbelievable or like religious hocus pocus but evidence is mounting that ancient healing arts which focus on the human energy field like acupuncture, chi gung, tai chi and energy healing, have positive and demonstrable benefit. I’ll be focusing on two forms of energy healing in this article that appear to have particular benefits for dementia patients and their caregivers, Reiki and Therapeutic Touch.

Therapeutic Touch

In Therapeutic Touch the practitioner does not actually touch the patient. The practitioner holds their hands a few inches away from the patient’s body and consciously directs a flow of energy into and around the patient while in a calm meditative state. Sometimes, visualization is used by both the patient and practitioner to intensify the focus of healing but that is not necessary. A patient does not have to be cognitively aware of what Therapeutic Touch can do for it to be effective. In fact, some of the most successful treatments have been performed on babies and people in comas. This makes it particularly useful for dementia patients, especially those who don’t like to be touched.

Therapeutic Touch was developed by Delores Krieger, a professor of nursing with a special interest in neurophysiology. She documented her research on the use of this method so well that Therapeutic Touch classes have been added to the nursing curriculums of 80 colleges and universities in the United States and abroad including major university medical centers such as Columbia-Presbyterian Medical Center in New York. Therapeutic Touch has been used to reduce pain, accelerate healing, relieve anxiety, and help terminally ill people face death. The Connecticut study mentioned above, however, was the first extensive study on the use of this approach with Alzheimer patients.

Therapeutic Touch is based on the idea that there is a universal life energy that supports all living things and through which all matter and consciousness are interconnected. This core belief is the foundation of most eastern therapeutic systems. This energy is known as “chi” in China, “ki” in Japan, and “prana” in India. Practices such as yoga, pranayama, chi gung, and tai chi as well as therapeutic approaches such acupuncture and acupressure all work with the theory that illness is caused by an imbalance or disruption of this energy flow and that balancing life-energy flow throughout the body is the key to good health and long life. The practitioner of Therapeutic Touch learns to sense energy imbalances in the energy field that surrounds a person’s body and uses stroking motions and visualization to smooth the energy out. It takes practice to learn and an intensive training program.

Reiki

Reiki is a form of energy healing from Japan with roots that some people say stem from ancient Tibet. While it has been practiced for far longer than Therapeutic Touch, Western research on its effectiveness has only just begun. Preliminary studies, however, have produced similar results.

Reiki is interesting to me professionally because it is extremely easy to learn and easier to do than Therapeutic Touch. It is also easier to use on oneself than Therapeutic Touch so it can be taught as an effective tool for self-care. The practitioner’s hands are placed gently on the body or an inch or two away. There are twelve basic hand positions that are done in sequence which cover all major areas of the body. Practitioners do not need to feel the energy imbalances for Reiki to work; they simply hold each position for a specific period of time. The practice does not require a meditative state or extensive visualization. In fact, it can even be used by a caregiver in a highly stressed state of mind. I learned Reiki five years ago and use it most often for self-care on those days when my emotions need soothing. It has a comforting quality that never fails to leave me more relaxed, centered and calm.

What makes Reiki unusual from a Western perspective is that the practice is passed on through an ancient healing ritual in which the participant is spiritually attuned to the power of the practice. My intellectual mind couldn’t make sense of this but I found it an interesting cultural experience that added to my enjoyment of the class. Even though Reiki is considered spiritual in origin it is not part of any particular religion and does not require one to adopt new religious practices or beliefs. However, for those who grew up without spiritual beliefs or for those that were taught that only Christ could (or should) heal, this practice would challenge some very basic long held beliefs.

I use Reiki to release tension on those nights when I can’t sleep. It has been effective in my life for headaches, minor aches and pains and other stress-related symptoms. Reiki practitioners report that it can decrease the need for medical intervention, decrease or eliminate side effects with medicines, reduce a patient’s recovery time from an invasive procedure, or strengthen a patient’s immune system. Two hospitals in the community where I live have arranged to have Reiki practitioners work with both patients and staff.

Follow-up Commentary:
Not long after I wrote the above article I convinced my agency to let me offer an introductory Reiki workshop for family caregivers. It was a great success! Only 5 people participated, ranging in age from 45 to 90, but they all succeeded in learning the techniques and three of them reported later that they were using Reiki with themselves and their patients (the other two didn’t report back except to say that they really enjoyed the experience of learning it). One even calmed her husband in the middle of the night during a highly agitated period when he was terrified and threatening to hurt her. She used the hand positions recommended in the class and in less than 10 minutes he let out a sigh of relief and settled back down.

Berry Good For the Brain—The Role of Antioxidants

The following article is reprinted from my book The Spiritual Journey of Family Caregiving. The original article was published several years ago in a newsletter for Family Caregivers:

In the last few months I have written about Ayurvedic herbs and spices, in particular bacopa and turmeric, that appear to have a beneficial effect on the brain. Both of these herbs are antioxidants. The role of antioxidants has only just begun to be thoroughly researched but the implications for people with age-related brain impairment is potentially enormous. In this article I’ll attempt to explain what antioxidants are in simple terms and mention some tasty ways to add them to your life.

Why We Need Antioxidants

In the normal processes of digesting food and fighting germs and infection, the body produces tiny particles called free radicals which, in small quantities, are relatively harmless. We’re talking about something that happens on the atomic level. Free radicals are electrons that are pulled off their orbits around the nucleus of an atom and float free to interact with other atoms. There is nothing terribly frightening about this—it happens all the time. However, in sufficient quantities these particles can wreak havoc in our bodies because they have a magnetic charge that can pull electrons off of other atoms with which they come into contact. Those free radicals can destabilize even more atoms and, if the process isn’t stopped, eventually you can wind up with cell or tissue damage.

Luckily, antioxidants are designed to protect the body from this destructive cycle. When they meet a free radical they donate an electron to neutralize its electron-stealing tendencies but don’t become free radicals themselves because they have a highly stable atomic structure. Antioxidants are abundant in a healthy person who eats a varied diet rich in vitamins and other nutrients.

Unfortunately, when free radical production becomes excessive or antioxidants are missing, damage can occur. Poor health and environmental factors such as pollution, radiation, cigarette smoke and herbicides can all lead to excessive free radical production. The damage from this accumulates with age.

Eat Your Fruits and Vegetables!

The most abundant antioxidants found in the body are Vitamins E and C. Vitamin E is thought to be such an effective antioxidant that it has become standard practice to prescribe it in the early stages of Alzheimer’s Disease and cardiovascular-related dementia. It appears to reduce the amount of plaque formation in arteries and veins and prevents tissue damage in the brain. Studies have shown that use of Vitamin E slows the course of Alzheimer’s Disease and may even reverse the effects of age-related memory loss in otherwise healthy people. Vitamin E is found in nuts, vegetable oils, wheat germ, whole grain cereals, eggs, and dark green leafy vegetables.

Vitamin C works synergistically with Vitamin E. It appears to have a particularly useful effect in combating free radical production caused by pollution and cigarette smoke and may offer some protection against cancer. Vitamin C is most abundantly found in fresh fruit and vegetables.

For most people adding Vitamin E and C supplements to the diet is probably not harmful but doctors warn against mega-doses because the long-term effect of large doses has not been determined. It is also likely that other nutrients found in natural sources of antioxidants may act synergistically with E and C to create beneficial effects. So do like mother told you and eat your fruits and vegetables! 5-8 servings a day is what nutritionists recommend. A serving is approximately the size of a tightly closed fist.

What food has the highest source of antioxidants?

Blueberries! The U.S.D.A. reports blueberries have 40% more antioxidant than the next highest foods, strawberries and spinach. Studies on rats at Tufts University showed that adding blueberry extract to the rats’ diet actually reversed age-related mental declines and improved balance and coordination. Previous studies have shown that blueberries can help lower blood pressure and improve vision.

Fresh berries are excellent but lightly cooked ones have an even greater effect. Try adding blueberries and nuts or wheat germ to your favorite muffin mix or pancakes. Here’s a quick and easy recipe you might enjoy:

Blueberry Clafoutti

4 c Blueberries
1 c Milk
1/3 c Sugar
2 Eggs
2 tsp Vanilla
1 1/4 c Flour
Dash salt
Grease and flour a baking dish or pie plate. Add berries. Combine milk, sugar, eggs, salt and vanilla in a blender. Add flour and blend until smooth. Pour over berries. Bake at 375º for 45 minutes or until golden and puffy.

Another Reason to Eat Your Fruits and Vegetables

According to a study by researchers at Boston University and Tufts University, people with high levels of homocysteine in their blood have twice the average risk of developing Alzheimer’s Disease. Homocysteine is an amino acid which rises unacceptably in the body when a person’s diet is rich in animal protein but low in fresh fruits and vegetables. It is also associated with a higher incidence of heart disease and stroke. Fresh fruits and vegetables contain B vitamins and folic acid which help convert homocysteine into other amino acids which are not harmful.

Elephants Never Forget—They Eat Brahmi

The word “Brahmi” means the creative energy or intelligence of the Universe. It is used to refer to plants that appear to personify this energy by revitalizing the sensory organs of the body, in particular the nerves and brain cells. Sounds pretty good, huh? Want to know how to get some of that? Let’s take a look at the two herbs most commonly given this designation that we can find in the United States today: bacopa monniera or bacopa herpestis (known as bacopa) and Centella asiatica or Hydrocotyle asiatica (known as gotu kola or pennywort). Gotu kola is supposed to be a favorite food of elephants in South India.

Bacopa

Bacopa is considered to be the most important Ayervedic herb for treating brain problems and age-related mental decline as well as for improving cognitive processes such as memory. It is prescribed for all body types in the Ayervedic tradition because of its balancing effects.

The Central Drug Institute of India, established in 1953 to create formal scientific studies to determine how Ayervedic herbal remedies work, has studied bacopa. They found that the herb contains chemicals that help repair damaged neurons by augmenting kinase, the protein involved in the synthesis of new neurons to replace old ones. It has a strong antioxidant effect (similar to Vitamin E) that helps the body clean up toxins that damage DNA and cell membranes. It also aids blood circulation throughout the body, a known factor in the development of dementia for some people. Studies with rats have conclusively shown that rats treated with bacopa learn new skills faster than control subjects and retain the information longer. Preliminary studies with humans indicate similar effects.

Bacopa is currently being used in India to treat ADD (Attention Deficit Disorder), age-related mental deterioration, and concentration difficulties due to stress. It has a mild sedative or nerve-calming effect and has been used successfully by people with irritable bowel syndrome and by those recovering from nervous breakdown. Unlike other herbs with sedating properties, however, bacopa increases mental clarity while reducing nervous anxiety. Bacopa is commonly taken in tea with sweeteners added or in capsule form. It can be used as a salad vegetable or added to soup but by itself it is very bitter.

Side Effects and Precautions: Bacopa is a diuretic and should not be used with diuretics or anti-diabetic drugs without a doctor’s supervision. It should not be used with methotrimeprazine, a potent CNS depressant analgesic. Other central nervous system drugs have not been tested for possible interactions at this time. Use of aminoglycoside antibiotics such as clindamycin increases bacopa’s sedating effect By itself it has no known side effects or toxicity at normal dosages.

Gotu Kola

Gotu Kola is thought of as a spiritual herb in Ayurveda as well as having superior rejuvenating effects throughout the body. It is commonly used in India to improve meditation. It is said to develop the crown chakra, the energy center at the top of the head, and to balance the right and left hemispheres of the brain. Traditionally, gotu kola is used to strengthen the immune system, the adrenals and the circulatory system, and to promote healthy skin.

Studies have found three main chemical constituents in gotu kola. One has an antibiotic effect. The second, similar to Bacopa, is diuretic and slightly sedating. The third is a strong anti-inflammatory agent. It is also high in Vitamin B and K, magnesium, and calcium. It has been found to be extremely effective for wound healing and tissue repair, even being used in India to treat second and third degree burns. Studies with rats show that rats fed gotu kola retained new information significantly longer than control subjects. Preliminary results in one clinical trial with mentally retarded children showed increased scores on intelligence tests. Gotu Kola can be found as a tea, capsules, and tincture.

Side Effects and Precautions: Although widely used for skin ailments, gotu kola has been known to be a skin irritant for some people. It can cause headaches or elevate blood pressure in high doses and might create narcotic stupor with extreme usage. Do not use during pregnancy or if you have an overactive thyroid. Avoid using it with sedative drugs as the effect may be cumulative. It should also not be used with antidiabetic or cholesterol-lowering medications without a doctor’s supervision. Older adults should start with a lower dose and increase it if necessary.

Gotu kola should not be confused with the kola nut which contains caffeine and has a stimulating effect. Gotu kola is not the same plant and contains no caffeine.

Should you use either of these herbs?

Well, it always pays to consult your doctor to make sure they won’t conflict with medications you’re already taking but after doing that why not consider it? To be perfectly honest, there is no dementia medication on the market today (2005) that offers more than temporary symptomatic relief while allowing the disease to proceed unchecked. These herbs, especially bacopa, appear to actually repair damage and improve brain function. Follow your instincts. If you try it let your doctor know and monitor how it works and how it makes you feel.

The previous article is an excerpt from The Spiritual Journey of Family Caregiving. Click here to buy it now.