Sunday, September 30, 2007

...they think I should be unhappy.

Louise complained on the Alzheimer's message boards yesterday that some Alzheimer care-givers are in denial. They don't always do what's practical. They're stubborn. And Louise said this has her puzzled.

And I told Louise I suspect we're all in denial over something or other. You, me, everybody. Because that's the way we choose to cope with life. Some may call it being stubborn. But hey, we're just creating our own realities. Our own perceptions of what's happening to us and around us. It's paramount that I be relatively happy. That's the only way I can live. I have to be pursuing happiness. But some other folks -- well, they just choose to be unhappy. Sort of a compulsion. On any given day, I can sit down and make two lists -- reasons to be happy, and reasons to be unhappy. Then it's my choice. Which list do I want to focus on today? Invariably, I concentrate on the reasons to be happy. Maybe some people will accuse me of being in denial. Because they think I should be unhappy. That if I lived in the "real" world I'd be discouraged and depressed. --Jim Broede

P.S. By the way, I don't mean to say or infer that Louise is unhappy. On the contrary, my impression is that she's a happy and positive being. She, like me, just thinks that care-givers should exude good vibes. Should reflect a happy face in the presence of their patients. I find that meritorious. Others, unfortunately, have taken me to task for being too happy, too Pollyannish.

Saturday, September 29, 2007

That's nice enough.

When somebody is good to me, I am grateful. The baseball gods have been good. In allowing the Cubs to get into the play-offs. That’s good enough for me. I’m not greedy. If the Cubs lose in the play-offs, I can accept that. Without regret. Without being depressed. Or annoyed. Or pissed. Oh, sure it’d be nice if the Cubs went all the way to the World Series, and won it all. But I’m not asking the baseball gods for that. Because the gods have already granted me one of my fervent wishes. Just getting the Cubs into the play-offs by winning the National League Central. I’m not asking for more. Of course, I’ll take more. Gladly. Happily. But if I don’t get more, I’ll be happy, too. Just because the Cubs went from worst to first in one season. That’s nice enough. --Jim Broede

...doing whatever little I can.

I like it when I read on the Alzheinmer's message boards complaints about our health care system, especially as it relates to the abysmal care for the mentally ill and dementia patients.

Just today, a woman called for all of us to make it an election issue. But hey, it won't happen. Our politicians would rather spend $2 billion a week on an obscene war in Iraq.

Just think about the sorts of improvements we could have if we spent even a fraction of that money on improved health care.

Meanwhile, I told the woman it'll take a revolution to fix the system in meaningful ways. Our mind-sets have to change, too. The best we can hope for in our lifetimes are small changes. Meanwhile, I just try to help needy people I know. Every day acquaintances. In my local community. I suppose if we all did that, it would add up to significant numbers. Sometimes, we think too big. Like me. About a revolution. When I know it won't happen in my lifetime. So I just go about doing whatever little I can. In ways that help an individual patient and care-giver here and there. --Jim Broede

Friday, September 28, 2007

You have nothing to lose.

Lots of grieving folks come to the Alzheimer's message boards. Today it was the turn of someone called Kansas. I'm presuming it's a woman. Sounds like one.

"I lost my dad in April after 6 long years of Alzheimer's," she said. "I can't seem to get past the disease when I think of him. I still picture him in the nursing home and struggling with the final stages of the disease. How long does it take to get past that, and start remembering the good times? I can't seem to get past the sad part."

Anyway, I told Kansas I lost my dear Jeanne -- the love of my life -- last January. Well, I did. And I didn't. I still have Jeanne's spirit. And I commune with that spirit almost daily. And I feel blessed. That I had Jeanne physically present with me on a daily basis for almost 40 years. And now I stay active. Mentally. Physically. And I write every day. My thoughts. My reflections. I guess I'm still in love. With Jeanne's spirit. With life. I think life is wonderful. I'm 72. I've been mostly happy. Maybe 98 or 99 percent of the time. So, when I'm sad, I just tell myself, it ain't gonna last. Because I can't stand being sad and unhappy for any sustained period of time. I have to find my way to happiness. And often, all it takes is for me to commune with Jeanne's spirit. Maybe you can do that with your dad, Kansas. It's worth a try. You have nothing to lose. --Jim Broede

...that pain will soon turn to pleasant memories.

A woman named Kathy is grieving because her beloved grandfather died.

“My grandmother tried to care for him at home as long as she could,” Kathy wrote on the Alzheimer’s message boards, “and I would always help whenever they needed me. At the end my grandfather only remembered me. I did everything I could to make sure that he was comfortable and had his dignity.”

Kathy reflected that it’s been almost two months and that she’s struggling to come to peace over grand dad’s passing and that it’s negatively affecting her daily life.

“What can I do when I feel like nobody understands the pain I’m going through?” Kathy asked. “I still have to put on a strong front for my grandmother and mother.”

I told Kathy you don’t have to put on a strong front for anyone. Just be yourself. Grieve. Cry. Scream. Let it out. When you hurt, when you feel pain and anguish and sorrow – well, tell the people around you. Your mom. Your friends. And then try to think of your grand dad. The fact that you knew him. Dearly. Intimately. And celebrate that fact. He was a blessing. Be thankful for that. Life is full of losses. Setbacks. But wonderful things, too. So many, many dear people. Your friends. And relatives. Acquaintances. They’ll come and go in your life. Some will move away. Others will die. But life goes on. In wonderful ways. And you’ll fall in love. And some of your loves may well die before you. You’ll grieve those losses, I am sure. But you’ll be better for having known all these folks that played a big part in your life. And you’re lucky. To have been able to come to know your grandparents. Some of our grandparents even die before we are born. I never knew my grandparents on my mother’s side of the family. And I can barely remember my grandparents on my father’s side of the family. I was still a youngster when they died. Anyway, I understand your pain, Kathy. But that pain will soon turn to pleasant memories – that bring smiles rather than tears and pain –Jim Broede.

Makes me feel good & happy & romantic...in the Broede sense.

I keep defining myself as a liberal, a free-thinker and a romantic. But more than anything, I love being a romantic. Maybe it’s like saying I’m a dreamer. I see my life filled by romantic interludes. Dreams. Dreams that have come true. Of course, the nicest dream of all was Jeanne. An idyllic life, as I reflect on it. Oh, there were rough moments. But an overwhelming amount of happiness. I felt at ease. Relaxed. Yes, in love. Like a romantic. Even today, despite the loss of Jeanne to Alzheimer’s, it’s been a good life. Good moments daily. Romantic moments, as I define romantic. Deep love. Spiritual love. The love evolved. Took time. That’s a key ingredient. Time. And shared experience.

And oh, I could cite so many instances of romantic interludes. The decision to explore my roots. In Germany. That was a romantic venture, too. I felt something extraordinary would come from it. Right from the start. It was like my ancestors’ spirit was talking to me. Wanting me to some day walk the same ground they walked. To return to Germany. A mission of the spirit. Like their genes were in me. A part of me. They were talking to me. From inside my soul. My being. My heart. My gut. And everything unfolded, as if in a dream. Another dream come true. Oh, so many times a chill went up and down my spine. A feeling of romance.

Even as a writer. As a youngster. I felt a romantic mission. To write. For newspapers, of all things. No other writers in the family. But it seemed like a romantic notion. A romantic career. For an idealist. I asked for a typewriter for Christmas when I was in the 6th grade. Because I wanted to write. To put out a little neighborhood newspaper. The River Lawn Gazette. And I wrote of neighborhood events. Often in a satirical manner. Before I even knew the definition of satire. It just came naturally. I’d write stories in my English class in the 7th grade. Parodies. In which I made characters of classmates. Funny stuff. And the teacher would have me read the pieces out loud, and I’d have my classmates rolling in the aisles. With laughter.

I don’t see myself as an exceptionally good writer. But writing has always been a romantic outlet. Helps me to understand myself. And others. An opportunity to reflect. In a romantic way. Since I retired, I’ve written daily. In a journal. Called Broede’s Broodings, just like this blog. And in a weekly newspaper, I had a personal column called Broede’s Broodings. It was really a column of romantic notions. One could laugh. Or cry. Over the same column. Just depended on how one chose to take it. I talked of love. My sort of romantic or dream love.

When I wrote for newspapers, I focused mostly on ideas. And ideals. Often romantic ideas. I went south in the 1960s, and wrote for papers in Lakeland and Vero Beach. And I got sidetracked. Into the civil rights movement. I was on the executive board of the NAACP chapter in Vero Beach. And I was a militant. And I got into trouble with the political big-wigs. And more or less got run out of town. It got to be a dangerous time. But I saw the whole ordeal/experience as romantic. As spiritually fulfilling.

In my younger days, I moved around a lot. From job to job. I was editor of the college newspaper. At a small liberal arts college. And then I went into the Army. And I went to the Army Information School at Fort Slocum on Long Island, just off New Rochelle, and I got into New York City on weekends. How romantic.

And then I was sent to Europe. Stationed in Frankfurt for 2 years. And guess what? My primary job in the army was sports editor of the 3rd Armored Division’s weekly newspaper, The Spearhead. And I got to travel covering sports events. And on my leaves, got to places like Vienna and Prague. But mostly, I spent lots of time in London. My favorite place. Again, I felt a sense of the romantic. I loved it.

Well, I came to Minnesota by a circuitous route. Went to work for the daily newspaper, the St. Paul Pioneer Press. writing government news, breaking stories, and feature stories. Often on controversial topics. With a sense that I was leading a romantic life. And I met Jeanne.

And the romantic odyssey continues today. Meeting strangers. Like you. And thinking -- isn’t it romantic becoming acquainted with strangers? People I’ve never met face to face. Potential friends.

And as I sit here writing this, I tell myself I’m enjoying the moment. Savoring life. And offering opportunities to strangers. For dialogues. With me. Feels romantic. Makes me feel good and happy and romantic…in the Broede sense. –Jim Broede

Thursday, September 27, 2007

I'm blessed...if I don't get pissed.

Unbelievable. Cubs get swept by the last place Marlins. If Milwaukee wins tonight, the Cubs lead in the National League Central is cut to 1 game. With three games left in the regular season. Neither the Cubs or Milwaukee deserve to be in the play-offs. I'm almost ready to quit being a Cubs fan. But I'm hooked. I'll take them win or lose. That's the way it is. Just like a friend. No matter how much a friend disappoints you, he/she is still a friend. The Cubs are putting me to the ultimate test. I always want to see a true friend succeed. But hey, if a friend fails all the time, I'll still stick by the friend. And tell 'em, keep trying. Oh, well, the baseball gods will do what they want. I have no say in the matter. I have to accept their decision. Gracefully. Even when I'm pissed. Maybe the baseball gods are trying to teach me how not to be pissed. I don't know if I can master that art. When it gets down to it, I'm really not pissed at the baseball gods or at the Cubs. I'm pissed at myself for being pissed. That's what I haven't mastered yet. I have to quit being pissed at myself. I have to learn to laugh it off. To put life in proper perspective. I get pissed at meaningless things. Meaningless events. It should make absolutely no difference whether the Cubs win or lose. It should make no difference whether it's a sunny day or a cloudy day. I'm blessed. Either way. That is, if I don't get pissed. --Jim Broede

'Truth is Stranger than Fiction'

Dear Larry:

You are a perceptive little cuss. One who gets under the skin of the elite members of the Ladies Aid Society. They’re pompous ladies, aren’t they? Very judgmental. In so many ways, they act like old hags. But Larry, that’s their choice, isn’t it? They’ve let life defeat ‘em. They’re angry. Unhappy. That they’ve had to deal with the pitfalls of Alzheimer’s and care-giving. They whine. They feel sorry for themselves, more so than for their patients. And they don’t like facing the truth. If they stop to ruminate for a while, maybe they’d understand that they are blessed. Blessed with the opportunity to love. Unconditionally. To no longer lament the hand they’ve been dealt. One of the ladies seems to have been bitter ever since her 21-year marriage broke up. Her husband apparently ran off with a younger woman. And at the same time, she’s had to cope with watching a beloved mother slowly fade away. Yes, the dreaded Alzheimer’s. So she had a double whammy in her life. And it just seemed like her problems multiplied. I understand that. The woman deserves empathy and sympathy. But at some point, she has to right her own ship. And get on with life. Larry, you’re the sort of person who would tell her just that. And that wouldn’t be appreciated. But if you were that woman’s friend, Larry, you’d tell her to focus on what she’s still got. The pluses. The blessings. Being an alive and conscious being. And still able to salvage happiness. If only she set her mind to it. Another member of the society is an author. Wrote a book about Alzheimer’s and care-giving, and had it self-published. In the vanity press. Which is all right. She knows how to promote herself and her book. And lots of authors do that. It’s their livelihood, after all. But she’s hung up over this notion of suicide. A family member took his own life. And at the about the same time, her father was dying of Alzheimer’s. Yes, the double whammy effect again. Ain’t easy to cope with one tragedy. But, hey, two at a time. It can take a toll on one’s mental and emotional equilibrium. And I feel for this woman. I tried to console her in a private letter once. By telling her how I dealt with my father’s suicide. And that in some ways I considered my dad’s decision to take his own life a heroic act, of sorts. That it wasn’t all bad. That oftentimes, something good can be salvaged from a seemingly bad and distressful act. I did. I resolved the suicide in my mind. And learned to live with it. And to get on with life. I actually demonstrated to my dad’s spirit how one can live a happy life, despite the pitfalls. Anyway, the woman took me to task, on the Alzheimer’s message board. She publicly divulged some of what I had said in my private letter. She also distorted my position. Took it out of context. So I set the record straight and quoted from our correspondence. Well, you know what, Larry? She accused me of violating our privileged private correspondence. When, actually, she did it first, and more or less forced my hand. She could just as easily have chosen to continue our private dialogue. Instead, she decided to make it public. Anyway, Larry, as you well know, the Ladies Aid Society has an abundance of interesting characters. I think you’ve characterized one of ‘em as Mother Superior. Seems appropriate to me. She often chastises me and tells me how to act. Tells me what’s proper and improper. And that I can learn to be a good boy. Well, the irony of the whole thing is that she’s got her own family problems. She needs to clean up her own act and mend some of her own fences. With her lovely daughter, for instance. Maybe Mother Superior needs to change her ways. Well, Larry, I know you are plugged in to the Alzheimer’s message boards. That’s evident from the correspondence you’ve posted in this blog. You and I could sit down some day and collaborate. And write a book. About the Ladies Aid Society. And we could call it, “Truth is Stranger than Fiction.” --Jim Broede

Wednesday, September 26, 2007

I understood my mission.

Please don’t panic, my fellow care-givers. I sense that some of you do. When you first learn or suspect that your loved one may have Alzheimer’s. Don’t automatically assume the worst. Look at the big picture early in the journey. And try to think positively. Try to decide on a game plan that’s best for the patient. And best for you, the care-giver, too. Best overall for everyone. It may mean some give and take, some compromise and some very hard decisions. You might even have to put the patient in a nursing home. For the sake of everyone. Yes, that can in some instances be a better option than keeping the patient at home under the care of a beleaguered 24/7 care-giver. Sometimes we persist on staying on a wrong course to everyone’s detriment. And that just doesn’t make sense. But because we are so close to the situation, and tired and exhausted and in emotional turmoil, we aren’t in a position to make a good and objective decision. And that’s sad. I look back on my 13 years as a care-giver. Eventually, I more or less stumbled on to a solution. On to the right course. For Jeanne. For me. Believe me, I made plenty of mistakes along the way. Mistakes that harmed Jeanne. Mistakes that harmed me. With the benefit of hindsight, I’d do some things over, in other ways. But as far as the last three years go, I’d do things pretty much the same. I finally got it right. I learned not to panic. I took life a day at a time. And I understood my mission. To love Jeanne unconditionally. --Jim Broede

Ah, such sweet memories.

When I mixed with the dementia patients at Birchwood, I found that praise worked wonders. Much of the time. I remember Karen. She often called people she met “asshole.” Well, before Karen had a chance to say anything, I’d blurt out, “Karen, you look beautiful.” Or, “Karen, I like your blouse.” Karen then greeted me with a smile. And with a “thank you.” With others, humor works. I’d kid Frank about having a moonshine business down the hallway, in the broom closet. And he laughed. It’s amazing how much humor is retained by so many, many folks at the nursing home. And always, I’d go along with their reality. I let the talk flow. Naturally. In their direction. We helped each other. Pulled for each other. By using our imaginations. To make each other feel good. By stimulating each other’s minds. I tried to stimulate. And in return, they stimulated me. This stimulation thing was a two-way street. Wonderful. Wonderful. Wonderful. In so many ways, I find that talking to the dementia patients more rewarding than talking to so-called ‘normal’ people. In a sense, the patients’ worlds are more real than our own worlds. Real to them. Some of them don’t know any better than to believe in the impossible. Oh, so nice. And yes, there is sadness, too. But, I saw so much happiness mixed in. Life in a nursing home isn’t a complete downer. No, not by a long shot. There are lots of uppers, too. Every day, I saw opportunities to be joyful. I saw sunshine. Even when the skies were gray. And speaking of the weather. September and October in Minnesota is usually grand. Almost perfect. Mother Nature has been good. At least around here. So far, I couldn’t have choreographed a better autumn. Good weather for wheelchair rides. Outdoors. Jeanne and I used to go for wheelchair romps daily. I’d bring along a battery-operated tape player. Ah, such sweet memories. We listened to Vivaldi …to The Seasons…To Autumn. –Jim Broede

Tuesday, September 25, 2007

I have no reason to be angry with god.

I guess all I can say is that god has been kind to me. And kind to Jeanne. Yes, god took Jeanne by the Alzheimer's route. But god still gave us almost 40 blessed years together. And more than 10 of those years were plagued, so to speak, by some degree of dementia. But still, Jeanne and I had each other. Throughout the whole ordeal. And I had the ability to care for Jeanne. To show Jeanne my love. Unconditional love in the end. Jeanne and I learned to cope. With the hand we were dealt. I don't know if god was the dealer. Or if it was just random chance. Probably doesn't make a difference. We all have tragedies in our lives. Crosses to bear. One kind or another. And whom am I to say my tragedies are worse or better than others? Ultimately, it's how we deal with 'em that counts. Overall, I think Jeanne and I had blessed lives. Together. If we had to pay for it with Jeanne's Alzheimer's, so be it. I could choose to be bitter about that. And tell god that I hate him for it. Or I can tell god, thanks for the good times. And, oh, by the way god, I'll forgive you for the bad times because the good times sure far outweighed the bad times. And even during the bad times, you gave me the ability to make the best of it. You helped me by allowing me to cultivate a kind and decent and loving and appreciative attitude toward life -- as a whole. I've looked at the big picture and decided, wow! I've lived! I've loved! You gave me Jeanne. And you took Jeanne from me in this physical world called Earth. But I still trust you god. You've allowed me to retain Jeanne's spirit. And I'm assuming you're gonna allow Jeanne and I to have a reunion in paradise. Yes, thank you, god. I'm grateful for this gift of life. And what I've got left of it -- well, I'm gonna continue to savor it. Appreciate it. And I'm gonna feel blessed. And thank you, too, god for blessing Jeanne. You gave her 80-plus years of darn good life. Right here on Earth. And I'm assuming Jeanne is alive and well in another dimension, in a spriit world, in paradise. Yes, god, you've blessed both of us. I have no reason to be angry with you. --Jim

I knew I had lived. Truly lived.

I used to think of Alzheimer's as one of the worst things that could ever happen in one's life. Especially when it strikes the one person you love the most. Cherish the most. I started out feeling sorry for Jeanne. And for myself. But at some point, I just learned to accept it. Adjust. Cope. Make sacrifices. And essentially know what I had to do. Put the rest of my life on hold. Just to take care of Jeanne. And when I did that, I began to think that I've been blessed. That Alzheimer's helped me get my life in proper perspective. Proper balance. I understood that there was nothing more important in my life than to care for, and to love Jeanne. No matter what. Call it what you may. But I think of it as unconditional love. Loving Jeanne. And caring for Jeanne. That was what I was put on Earth to do. That was my god-given mission. Once I understood that, I fully understood that Alzheimer's isn't the worst thing that can happen. The worst thing is to not be able to love another human being -- unconditionally, that is. And once I learned I was capable of doing that, I knew I had lived. Truly lived. --Jim

Monday, September 24, 2007

In a sense, Alzheimer's was a blessing.

I had long assumed that with Alzheimer’s, things always went from bad to worse. But I was wrong. I learned that especially in the last three or four years of caring for Jeanne. Things got better. With Jeanne. With me. We learned to cope. We handled and dealt with each day better and better and better. Both of us. Jeanne actually improved. In so many ways. In meaningful ways. Mentally. She became more relaxed. More at ease. And she felt the emotion of love. She called me Jim. And honey. And she kissed me. And she was, oh, so sweet. Yes, loving. Could be she was responding to the good vibes. To my devotion. To my daily declarations of love. And to my presence. Daily. To my involvement in Jeanne’s every day life. The wheelchair rides. My hand-feeding her lunch and supper. Bringing her home for a few hours several times a week. Taking her out for drives. And shopping. Oh, so much activity. And talking to Jeanne. One-on-one. And playing music. Familiar music. Soothing music. I could no longer remember the last time I was angry or upset while I was around Jeanne. It was so long ago. I marveled. At the string of perfect days. Maybe perfect because we took time for each other. We focused on each other. Before retirement, and before Alzheimer’s, we didn’t devote this much time with each other. I was working. Pursuing a career. As a writer. Oh, we spent time with each other. Daily. But there were so many other diversions. So many other commitments. Other responsibilities. Now our focus was on each other. More or less full-time. The way it should be with lovers. With husbands and wives. With best friends. Incredible as it may seem, Alzheimer’s brought Jeanne and I closer together. Closer than ever. We learned to savor the moment. The day. Each other. Like never before. In a sense, Alzheimer’s was a blessing. Because we made it so. —Jim Broede

Sunday, September 23, 2007

It's really funny stuff.

Broede bashing has reached a new and amusing level.

See for yourself, folks. Go to Alzheimer Association’s message boards and read threads titled “Hey, Deborah and Maebee” and “Broede’s blog will hurt you.”

Well, I’m used to it. I’ve been bashed for years because the ladies don’t like me. I’ve been called evil, a heathen, a troll, a devil, a communist and un-American, among other choice names. They’ve even hurled epithets with the 4-letter f-word. In print. On the message boards. Took days to get it deleted.

I’ve pretty much taken it. Turned the other cheek most of the time. Because I have a thick skin. And a sense of fairness and humor. I’m willing to be bashed, if that’s what the ladies think I deserve. Just as long as they don’t get physical with me. I also try to abide by the rules of courtesy on the message boards.

But to counter some of the ladies crap, I decided to start my own blog. Right here. You’re reading it now. Gives me a little more flexibility.

Anyway, the ladies also have called me a Pollyanna. Because I’m upbeat. A positive thinker. Who happens to think there are worse things than Alzheimer’s. And some of the ladies don’t like it that I promote my good vibes therapy for dementia patients. I’m convinced that it’s worked – that it makes some patients better in meaningful ways.

I also think that some Alzheimer care-givers have no business being care-givers. That they are unfit for the job. Because they are overwhelmed and despondent and often in need of more care than their patients. Imagine that. It poses potential risks to the people under their care.

Too many care-givers are too self-absorbed to recognize that they may be doing harm. And that’s sad, and it could have tragic results.

Oh, I’m the first to acknowledge that there are many, many darn good care-givers out there. The vast majority get passing grades. But my critics in the Ladies Aid Society want me to shut up. Unless, of course, I have nothing but good to say about Alzheimer care-givers.

And with relatively rare exception, that’s all I have to say. Good. At least on the Alzheimer’s message boards. I’ve had something like 4,400 posts since January 2005. The posts are there for scrutiny. They’ve passed muster. Met the Alzheimer Association’s guidelines, or they wouldn’t be there.

Meanwhile, you can bet that the Ladies Aid Society’s two current threads won’t meet the guidelines. Get over there quickly, folks. Otherwise, you won’t have the opportunity to see the latest crap. The threads probably will be deleted as soon as they come under review by the message board monitors. But it makes no difference to me. It's really funny stuff. –Jim Broede

Two lovely women...with dementia...but still very much alive.

I remember the night Mary died. She was Jeanne’s roommate. Five years ago. Death was becoming new to me. More profound. I was seeing it up close at Birchwood, the nursing home. I used to distance myself from death. I didn’t watch people die. I never fought in a war, thank goodness. Oh, I visited the sick and the infirm. A little bit. But I tried to avoid facing the full scope of death. I mourned the death of our many cats and dogs. But maybe I distanced myself when real people died. Subconsciously. I avoided funerals. Easier not to get too close. I couldn’t avoid getting close to our pets. Lived with ‘em every day. Same goes for Jeanne. I got real close. The way husband and wife, two lovers, should. I always cried when a pet died. I grieved for days. But seldom did I cry when a real person died. I didn’t cry when my mother died. At age 88. I figured she had a long and a good life. But I cried a little bit when Mary died. I had come to know Mary. I watched her die. Slowly. Oh, not at the very moment of death. I was out with Jeanne. On a wheelchair romp. And it’s quite possible that when Mary took her last breath, I was thinking of her. I remember talking to the Creator that night. On that walk. And I was thinking of a miracle. Of Mary living forever. But the more I reflected, the more I wondered if we live on the edge of something grand and glorious. A spirit world. I wondered if death is a figment of our imaginations. I remembered my first encounter, my first impression of death. As a youngster. Maybe 3 or 4. My aunt took me to a funeral. At the graveside. In Chicago. Whose funeral, I don’t know. Auntie Anna told me that someone had died, and that when that happens, they’re buried. I saw a woman. On a bench. Weeping. I assumed she was the “dead” one. That she didn’t want to be buried. That’s why she must be crying. I hadn’t yet perceived death as a notion of nothingness. I thought it odd that this woman had to be buried. She looked very much alive. Still able to cry. To protest. Yes, I was confused. Maybe still am. Seems to me I wasn’t born with a solid notion of death. I had to be educated. Informed. To this day, I wonder if we were left to our own devices, alone in this world, free of outside influence, would we assume that we live forever? That so-called ‘death’ is unreal? That it is merely a transition to another dimension? That it’s not to be feared? That death is no more than a new beginning? Oh, well, I have strange thoughts. And back to dear Mary. Yes, I cried at the passing of another human being I had come to know. And when the tears come now, they are tears of happiness. Not sadness. Yes, I have fond memories of dear Mary. And she’s even as real as my pets. Someone like Jeanne. When I played music, Jeanne would sometimes sing along. And Mary would get up and dance. What a sight. Two lovely women…with dementia…but still very much alive. –Jim Broede

Yes, it takes time. Your time, dear care-givers.

A woman on the Alzheimer's message boards posted a thread today titled, "Mom is so bored." Just sits in front of the TV set. And remains mentally lethargic. And the woman wondered what she could do about it. Here's what I said:

You have to use a lot of ingenuity with mom. To arouse her interests in this and that. I find with patients at the Birchwood nursing home, that's possible with just about everyone. If you focus on them. Face to face. One on one. That's the sort of stimulation they need. Don't leave them alone. Accompany them. Take them by the hand. Go for a walk. Participate in their activity. Keep stimulating them. It takes time. Your time. But that's exactly what they need. Your time. They aren't gonna stimulate themselves. You've gotta do it. They need constant attention. With large doses of stimulation, their minds and bodies can stay in relatively good shape for a while. The point is, we don't take the time to give 'em proper stimulation. Proper care. And watching TV isn't stimulation. It's boring. Sleep-inducing. Little wonder that mom is bored. Turn off the TV. And get mom up and about. Stimulated. You'll be stimulating yourself at the same time. Making life interesting. For both you and mom. It can be done. I did it with Jeanne. But it took 8-10 hours daily. Every day. It takes good vibes. It's a full-time job. But oh, so much pleasure, if the time is spent with a loved one. That's what proper care-giving is all about. And if we don't take the time for it -- well, it just won't get done. In an ideal world, all dementia patients would have full-time care-giving. They wouldn't be warehoused and left to be bored to death. They'd be stimulated. But granted, it ain't an ideal world. Maybe because we don't have time to create one. When I started to take the time, it worked. But I had to retire to do it. So that I'd have the time. I chose to make the time. And it was the right decision. For Jeanne. For me. If you can't do that -- well, then you can't. Like I say, it ain't an ideal world. But that doesn't stop me from trying to make the best of it. Makes me feel reasonably happy, and reasonably fulfilled. This isn't meant as criticism of you or anyone else. I'm just trying to tell it the way it is. And each one of us has to try to do the best we can under our particular circumstances. --Jim

Saturday, September 22, 2007

Let's think positively.

Please folks, understand that I don’t like to see suffering. I have waged crusades against suffering. Throughout my life. Against genocide. Against war. Against poverty. Against racial discrimination. Against so many things that cause suffering. I’m for the narrowing of the gap between the rich and the poor -- a better, more equitable distribution of wealth. I’m also for universal health care. So that the poor can afford and receive good health care. I want a world in which there is less suffering.

And what I’m saying is that each of us suffers. To some degree. In our lifetimes. That’s the nature of life. All is not smooth and hunky dory. And ultimately, we die. And the dying process can be -- well, painful. A period of suffering. Suffering is a part of life. Nobody gets through life without suffering. Oh, sure, we can choose not to suffer. My dad decided to commit suicide. When he was 38. A conscious decision. Maybe because he didn’t want to suffer any more.

To tell you the truth, I rather enjoy life. Even though at times I have to suffer. If I get a terminal illness (Alzheimer’s, for instance), I’ll probably suffer. And I guess what I’m asking, is that a price worth paying for the happiness I’ve had in my life? For the happiness I’ve had in almost 40 years with Jeanne. My answer, of course, is yes.

And furthermore, I believe in an afterlife. In entry to another dimension. A spirit world. A paradise, of sorts. So, life goes on. And to reach this spirit world, is it worth having to suffer while on Earth? Yes, I guess so. Because for the vast majority of the time, I’m not suffering. I’m genuinely happy. And in love. With life. And with the thought that when I die, I’ll still live. In a spirit world. Where I may have a greater sense of love. And joy.

Some of you, right off the bat, give my comments a negative twist. Don’t you understand that I’m a positive thinker? An optimist.

By the way, this guy Jesus that some of you frequently quote. He had a horrible death. Suffered. But seems to me he loved life. And he accepted the suffering. Maybe because he understood that death was not the end of life. That’s all I’m saying, folks. Let’s put things in perspective. Let's do less griping. Let‘s think positively. --Jim Broede

Larry...he's the good guy.

Hey, folks, instead of trying to figure out who Larry the Cable Guy really is, why not focus on what Larry is saying? Larry, for instance, is telling us something about the Ladies Aid Society. Telling us that when Helen's sister and niece visited dying Helen at Lori's house -- that some of the ladies suggested:

1. Going to a garage sale and buying some junk jewelry and giving it to the sister and telling her it was Helen's.

2. Having Lori save her cigarette butts and put them in a box and tell the sister they are Helen's ashes.

3. Having Lori go smoke in the room where the niece was staying because cigarette smoke bothered her.

Yes, Lori had labeled/judged the visitors "vultures" and the ladies accepted that and proposed mean and nasty ways to deal with the sister and niece. Ain't exactly nice, is it? And Larry, by calling attention to this, is being labeled hurtful. Well, folks give me a break. I'm with Larry on this one. The hurtful folks are the hateful ladies who came up with these hateful ideas. And then laughed about it. Meanwhile, the hateful ladies try to divert attention from their hateful ways by speculating in a hateful manner that Larry really may be...well, you name the names. Meanwhile, I'm siding with Larry on this one. He's the good guy. --Jim Broede

Friday, September 21, 2007

It was a good run.

In her sojourn with Alzheimer’s, Jeanne ultimately became more childlike. In some ways, that is. And that wasn’t bad. Actually, I saw it as darn good. Something nice. In a meaningful way. It gave me a glimpse of what Jeanne was like as a child. She must have been a happy and contented child. Upbeat. Full of life. Anyway, I hadn’t lost Jeanne. I was seeing Jeanne in an extraordinary dimension. Another facet. Jeanne was still the adult Jeanne, too. Versatile. But most important, she was happy. She knew me. Called me Jim. And honey. And one night came a totally new name. Baby. Came out of the blue. Oh, so affectionate. I adored Jeanne. We always managed to reach each other. Appreciate each other. Love each other. Enjoy each other. It might be a different story if Jeanne had become belligerent and agitated and totally out of it. But that wasn’t the case. And so we almost always managed to live in the present. And we didn’t worry about tomorrow. I had Jeanne that day. That moment. A Jeanne that I liked and loved. A still communicative Jeanne. In so many, many ways. Despite the dementia. I learned to savor every minute. It was a good run. --Jim Broede

...an infinite number of ways.

I like people that are instinctively upbeat. Positive. About themselves. And about other people. They automatically assume that I mean well. They trust me. It’s like if I post a thread about who I am, about my priorities in life, they know that I’m speaking about what’s right for myself, and that I’m not saying, hey, everybody, these should be your priorities, too. I believe in freedom of choice. For everyone. And I like people because they are different. Not the same. I liked Jeanne, in large part, because she was different. Anything but my clone. We balanced each other. We were nice to each other. Despite our differences. And despite the pitfalls of Alzheimer’s. Despite occasional seeming tragedies or negatives in our lives. We always rebounded. We always coped. In large part because we had each other. In meaningful ways. We were dedicated to living life. Loving life. Caring. And adjusting. And adapting. And being optimistic. Being in love. And we didn't expect everybody to follow in our footsteps. Yes, we all have to find our own way. I respect that in life, there are many, many ways...an infinite number of ways. --Jim Broede

Thursday, September 20, 2007

I'm gonna take it...and be forever grateful

I always found ways to exercise Jeanne’s mind. And I wonder if that may be one reason why Jeanne lived for 13 years with dementia. And thrived in so many meaningful ways. She still understood my spoken words right up to the end. At least, pretty much so. She got the gist. She knew me. She was happy. Contented. At peace, it seemed. She talked. Sometimes in gibberish. But happy gibberish. She was polite. Courteous. Responsive. In other words, Jeanne wasn’t doing too badly. I was happy with her progress in the later years. Is it possible that my efforts to stimulate Jeanne’s mind reaped dividends. I talked to Jeanne. Daily. One-on-one. Face-to-face. I showed affection. Demonstratively. Daily. Jeanne listened to soothing music. Tranquil music. Lots of Mozart. Jeanne attended live music programs at Birchwood. Jeanne got fresh air romps in the wheelchair. Daily. Jeanne got nighttime showers, and body massages. Daily. I brought Jeanne home for a few hours. Most days. Especially in the spring and summer and early fall. I tried to make Jeanne’s day virtually stress-free. Oh, I also read aloud to Jeanne. Stories. Slowly. And I was funny. I make Jeanne laugh. I reminded Jeanne daily that I’m in love. With her. Jeanne was at Birchwood for 38 months. And I was there, too. Never missed a day. And before Birchwood, I played mental games with Jeanne. Simple games. Meant to make Jeanne think. An example: when riding in the car, I’d place maybe a dozen items on the dashboard. And then I’d name an item, and ask Jeanne to pick it up. A comb. A penny. A key chain. A book. A pencil. A pen. A paper clip. And I’d ask Jeanne simple questions. Again, just to keep her mind active. I don’t know if this did any good. But maybe it slowed the progression of dementia. Anyway, it seems to me that Jeanne survived longer than most. In relatively good condition. I like the Jeanne I had during this time. And yes, she’s still with me. In spirit. I still count my blessing – having Jeanne this way. Dear, dear wonderful Jeanne. I never lost Jeanne. And I wonder if that’s just plain good luck. Or a gift from god. Doesn’t matter. I’m gonna take it…and be forever grateful. --Jim Broede

Jeanne was the exception...not the rule.

It’s sad that some of us have bad nursing home experiences. Despite our best efforts. Even great efforts. To try to make it work. I feel the pain of those who fail. I understand why they are bitter. And why they castigate nursing homes. Because their experience has been bad, bad, bad. Horrific, in some instances. But I made Birchwood work. For me. For Jeanne. And so my experience wasn’t bad. Oh, I’m not happy with nursing homes in general. But I tried to make Birchwood a positive experience. I worked to make it work. And I’m proud of that. If I had entered with a defeatist attitude it might have been different. I might have failed. But I wouldn’t accept failure when it came to dear Jeanne. I learned how to deal with the system. To make the best of it. I made friends with the staff. With other care-givers. With Birchwood residents. They all became my extended family. Turned out to be a very positive experience. It didn’t start out good. I had run-ins with some staff members. But we resolved our differences. And Jeanne got better in meaningful ways. Because she got good care. The care she needed. Through a team effort. I was the team leader. Yes, it’s possible for an individual, someone like me, to make a difference in a nursing home. A big, big difference. I’m proud of how we worked with and helped each other – for Jeanne’s sake. I think we set a fine example. If everyone got the same care as Jeanne, we’d have a first rate nursing home. We’d have a nursing home that the dementia patients deserve. Unfortunately, Jeanne was the exception…not the rule. --Jim Broede

No guarantees.

Heck, I’m not proselytizing. I’m just telling Alzheimer care-givers of my experience. What worked for me. And for Jeanne. And for some other folks at Birchwood. It’s always been a take it or leave it proposition. I’ve repeatedly stated that. I’m not foisting my ways on anyone. Heck, no. I think of proselytizing applying mostly in a religious context. People who try to convert people to their religion. And I don’t do that. I let people know I’m a free-thinker. Usually, when they try to convert me to their religion. I’m for freedom of choice. And when I talk about good vibes therapy, I’m not talking religion. I’m talking about a method of care available to care-givers. One of many methods. And I’m just telling how it works. In my situation. Try it if you like. But it’s no skin off my back if you don’t. I’m not saying or implying that what one does is wrong. I assume that everybody tries to find something that works. And if it doesn’t work – well, try something else until it works. No harm in that, right? I advance my way for frustrated care-givers who aren’t succeeding. And I’m saying then maybe they could try good vibes therapy. That is, if they haven’t already tried it. In that sense, I’m trying to be helpful. Considerate. I’m not saying convert, and do it my way. Instead, I’m saying my way is an alternative way. An option. Maybe it’ll work for you. And maybe it won’t. No guarantees. –Jim Broede

Wednesday, September 19, 2007

It ain't a physical thing.

Look at it this way. Dementia patients don’t lose their souls or their spirits. Instead, they only lose their minds. The souls and inner spirits remain intact. Even after death, or so I assume. Therefore, it’s possible to address the soul and spirit of our loved ones. Any time. Before and after death. And even when they are in a comatose state. Even when they have seemingly gone crazy. Wacko. When they no longer seem to be themselves. For me, that’s another reason to embrace good vibes therapy. If it does nothing else, the good vibes may reach the soul, the inner spirit. When I talk to someone who isn’t with it mentally, I still talk to them. In a spiritual way. With good vibes. It’s a mystical sort of thing. Oh, one can tell me technical things about frontal lobes and this and that part of the brain. But tell me, where do we find the soul? The inner spirit? It ain’t a physical thing. --Jim Broede

...luck and blessings.

Think about it. The way one changes the system and brings about improvement is by starting small. Bit by bit. One on one. One deals with the individuals that enter one’s life. Those at Birchwood, the nursing home, for instance. I tried to make life better for Jeanne. And for other residents. In little ways. Little ways that add up. It’s a little bit like a marriage. I’ve had only one marriage. But I’ve made a success of it. Some people -- well, they try marriage. And they get divorced. Once. Twice. They don’t make a go of it. Well, I try to make a go of it. A success. Whether it be in a marriage, a job, or as a care-giver. I wasn’t out to make all marriages better. Just my marriage. I set an example. If others wanted to follow, fine. If not, that’s their choice. The same goes with a job. I think I excelled at my jobs as a writer. Again, I set an example. If others wanted to follow, that’s fine. If not, that’s fine, too. And as a care-giver, I had my specially-tailored approach. And it worked. For me. For Jeanne. For others at Birchwood. Again, I set an example. If others followed, I think it would improve the health care system. Overall. But I can’t force anyone to follow. Yes, I set the example. I don’t compel anyone to follow in my footsteps. All I can say is that I feel I’ve had a successful career at work as a writer, in marriage and in my role as care-giver. Makes me feel reasonably good. And happy. And I wish the rest of you the same sort of luck and blessings. –Jim Broede

Monday, September 17, 2007

It made me good vibes happy.

Maybe my good vibes are special good vibes. Because they worked. Not only on Jeanne, but on many, many others at Birchwood, the nursing home. As for Jeanne, she got good vibes all the time. Or at least what I consider to be good vibes. Now, if 10 percent bad vibes had been mixed in, maybe that would have negated the good vibes. I don’t know. I never cared to find out. I created a special environment for Jeanne. An environment in which she felt safe and secure and loved. And virtually free of stress. Oh, she got so much special attention. Hand-fed meals. Daily outdoor rides in the wheelchair. A nightly shower and body massage. Frequent kisses. Words of encouragement and praise. Soothing music. I took her home, too, for visits of a few hours. Often to sit on the lakeshore. The list goes on and on. A list of good vibes. I didn’t allow any bad vibes, period. At least not during the 8-10 hours I spent with Jeanne daily. Yes, I tried to create a good vibes paradise. An ideal environment. And yes, this may be impractical for other Alzheimer care-givers. Maybe for most of ‘em. But I’m telling the world, it worked. For me. For Jeanne. I practiced my good vibes therapy on others at Birchwood. Of course, not as extensively as I did with Jeanne. But even that worked. I appointed one of the residents (Leona) director of happiness. And she took the job seriously. She tried her best to spread happiness. She looked for sourpusses, and then tried to make them smile. I loved to watch Leona work. It was a pleasure. It made me good vibes happy. –Jim Broede

...a wheelchair romp up and down the hallway.

Every day during my 38 months and one day at Birchwood (the nursing home where Jeanne lived) I worked to make the system better. With little acts of kindness. Not just for Jeanne. But for other residents. Picked at random. One day, for instance, I marveled at how Margaret walked the hallways. Bent over. And ever so slowly. One end to the other. And sometimes, she maneuvered in a wheelchair. Turning the wheels by hand. Again, ever so slowly. But she was persistent. This was her life. Her joy. She didn’t speak much. Only a few words here and there. And an occasional smile. She’s in her 80s. Came to Birchwood before Jeanne. And she’s still there. Seldom has visitors. Often, I spared 10 minutes. When Jeanne was taking a nap. And I pushed Margaret in a wheelchair. Up and down the hallway. Fast. Fast. Fast. And when we turned, it was fast turns. Like a tilt-a-whirl at an amusement park. And I saw the look of delight on Margaret’s face. Yes, I brought moments of joy to Margaret. I made life a little bit better for someone in a nursing home. And I still do it. From time to time. I return to Birchwood. I’ll go again tomorrow. Yes, I’ll be kind to someone living at Birchwood. That’s how I work to improve the health care system. The one at Birchwood. Where I am still a presence. Not as much as when Jeanne was there. But I still try to make it a better place, a better system. Maybe in little ways. I’m trying to set an example. For others. We’d have a much better health care system if individuals performed little acts of kindness. It doesn’t take long. Only 10 minutes with Margaret. That makes Margaret’s day in a big, big way. Margaret isn’t walking any more. But she still enjoys a wheelchair romp up and down the hallway. –Jim Broede

Precious...loving times.

Don’t overreact. That's what I tell care-givers. A diagnosis of dementia or Alzheimer’s isn’t necessarily the end of the world or the end of a meaningful life. My Jeanne still lived a meaningful and loving life for 13 years after the first signs of dementia. I was able to feel blessed in those waning years. To still have Jeanne in meaningful ways. But initially, I over-reacted. I thought it would be the end of happy times. I was upset. Sad. Morose. Depressed. And that wasn’t good for Jeanne. Or for me. It hampered me as a care-giver. Made me less than good. But hey, I learned. Learned that Jeanne needed good vibes. And so did I. I learned that we needed to think positively and upbeat, and optimistically. And to savor our remaining time together. And as a result, the last three or four years together were filled with much happiness. Despite Alzheimer's. Our love, I think, was deeper and more profound than ever. Yes, I ceased being scared. Or depressed. I savored every moment with Jeanne. It wasn't too late. Now I look back on those times as precious...loving times. --Jim Broede

Sunday, September 16, 2007

Bad care-giving is unacceptable, period.

I’m not buying the arguments of many of the people who come to the defense of bad care-givers. That they at least try. There’s no legitimate excuse. Bad care-givers have to be weeded out. Now. Because they are doing harm. To their patients. To themselves. But mostly, I’m concerned about the harm to patients. The patients deserve better. I think it’s a crime to allow overworked, over-stressed and depressed care-givers to remain on the job. It’s abuse. The majority of care-givers, even those that are 24/7, probably are doing a decent enough job. But I’m convinced that significant numbers of care-givers are abusive, unfit for roles as care-givers. Their patients would be better off under the care of professionals. Trained and certified professionals. And for us to tell these bad care-givers that they are doing a good job – well, that just doesn’t fly. Because they aren’t doing a good job. And quite possibly they are downright harmful to the patients. As a society, we shouldn’t tolerate it. It’s improper care. That’s where I want my focus to be. It’s even more important at the moment than finding a cure for Alzheimer’s. I want a cure as much as anyone. But while we are waiting for a cure, I don’t want care-givers to be allowed to do harm. That’s my primary mission. To focus attention on the shortcomings of some care-givers. Maybe the answer, in many instances, are private and public programs that give overburdened care-givers some relief. Some respite. Some sort of help. I don’t dispute that even some of the abusive care-givers mean well. But they’ve allowed themselves to get into untenable situations. And they do harm. And that’s gotta be recognized. And it’s gotta be stopped. The patient has to be put first and foremost. Bad care-giving is unacceptable, period. –Jim Broede

It takes two to tango.

Settle down, some of you unsettled folks. There's no need to be angry. We just look at things differently. There doesn't have to be controversy between us. We don't have to put on a show for an audience. The comments section is supposed to be a place for a reasonably friendly dialogue. Between the two of us. You're entitled to your opinion. And I'm entitled to mine. Of course, we don't always see eye to eye on various issues. I have no anger, no animosity toward you. Even in disagreement. I'm not always giving you the answers you want to hear. Because you are asking the wrong questions. I understand where you are coming from. But you don't quite understand where I am coming from. And you won't understand until you settle down. Put your anger on the back-burner. Or better yet, rid yourself of the anger. Open your mind to new ways of thinking. You've come into this dialogue with too many preconceived ideas and notions. With less than an open mind. That's all right. But to have a successful dialogue, you have to learn to listen, too. Not just talk. I'm listening to you, and I'm telling you I don't agree with you, and why I disagree. Now give me the courtesy of trying to understand that. Maybe I'm wrong about some things. And maybe I'm right about some things. The same applies to you. Let's both concede that we're both right to some degree, and both wrong to some degree. When a dialogue fails, both sides are to blame. At least to some degree. I'm willing to continue the dialogue. But if you aren't, so be it. It takes two to tango. --Jim

Maybe some day we'll have a revolution...

Some people tell me they don't want the controversy I tend to stir. They want results instead. Without the controversy. Well, that’s admirable. But not always achievable without rocking the boat. Some call it stirring the pot. Getting people downright pissed. That’s why we have revolutions. People get damn mad over the status quo and declare emphatically they ain’t gonna take it anymore. And that often happens in a gradual manner. Bit by bit by bit. Until there’s an explosion. Like we had during the wonderful 1960s over civil rights. People became militant. They took to the streets. Blacks finally became pissed over the maltreatment they received for generation after generation after generation. And they enlisted white folks like me to the cause. Millions of us. Yes, we came in droves. And we got big gains. More civil rights. For minorities. But it took a long, long time. Too long. But that’s better than never. And we’re still trying to complete the revolution for full equality for everyone. It’s on-going. Never ending. People today are still denied basic civil and human rights. Often, in more subtle ways.

And I'm saying that our efforts to bring attention to the devastating problems associated with Alzheimer’s and other dementias will require a similar investment of time and effort. A revolution, of sorts. The gains will be ever so slow. But we have to build to a crescendo. Ever so relentlessly. Here and there. Until vast numbers of people become aware. Pissed. They’ve got to shout that we’re not gonna take it anymore. Meanwhile, each one of us has to pitch in. In our own inimitable ways. Calling attention to the sad plight of Alzheimer patients and their care-givers. We have to raise awareness in our corners of the world. To make things better. For everyone. I do my share. Almost daily. With my blog. And on the Alzheimer’s message boards. And in my local community. By trying to be persuasive and involved. In kindly, effective ways. But yes, also by raising hell. By being militant. Just like we did in the 1960s to bring about change. I’ve even taken my case for better treatment for Alzheimer patients to the Minnesota state health department. I put my concerns into the laps of state inspectors. The ones that see what’s happening and isn’t happening in nursing homes and assisted living facilities. I’ve called for experimental nursing homes where, in the memory care units, it would be required to provide extensive supplemental care, way beyond what’s offered now. Let’s see if my so-called good vibes therapy works. I’m convinced that it will. But we need proof. We need to test it. Let’s get results. Yes, it’ll cost more. But in this nation we don’t seem to hesitate to spend $2 billion a week on a senseless war in Iraq. We don’t hesitate giving the super rich tax cuts. We don’t hesitate providing billions of dollars on corporate welfare. And we give short shrift to our infrastructure. We allow our highways and bridges to deteriorate – so that we have more money to spend on national defense. And all this makes me sick. To my stomach. And worse yet, sick in spirit. Makes me a disillusioned American. Because I see up close and personal the glaring deficiencies in our health care system. We’ve got 46 million Americans without basic health and medical coverage. And we've got a shoddy system of health care for the mentally ill and for dementia patients. Yes, I’m raising hell about it. In my own neck of the woods. Daily. And in my blog. And on the Alzheimer’s message boards. I stir controversy. And I’m told that’s unacceptable on the message boards. But still, I persist in my own ways. Often, one-on-one. And when someone on the Alzheimer's message boards posts a thread addressed to me, asking for my help, for my assistance – well, before I even have a chance to reply, it brings negative responses. Meanwhile, I keep plugging away. I write letters to the likes of people who ask for my help. In the hopes of enlisting them to the cause. I encourage them not to be discouraged. Instead, keep plugging away. The two of us. Let’s try to make it the three of us, and then 4, 5, 6. Let’s keep building and recruiting more and more believers to the cause. Maybe some day, we’ll have a revolution...a wonderful one...in the Alzheimer's domain. --Jim Broede

...that sure as heck makes mourning a lot easier.

Someone asked me once if I ever mourn or grieve. Well, not a day goes by that I don’t mourn Jeanne. I mourn lots of things. But not a day goes by when I don’t find happiness, too. Often, joy. I celebrate life. Just being an alive and conscious being. The fact that I am able to mourn and feel sadness is a reflection of happy times. When I mourn I’m reminded that I’ve been happy. Joyous. That’s why I mourn. But in the case of Jeanne, I still have her wonderful spirit. And the thought that some day there will be a reunion. In a spirit world. In a paradise. I believe that. And so I can put ‘mourning’ on the back-burner, so to speak. And rejoice. When I am sad, I talk to Jeanne. The spiritual Jeanne. I still love Jeanne. More than ever. The love hasn’t diminished. On the contrary, it’s more profound. Jeanne’s spirit cheers me. Consoles me. Makes me aware that I am not alone. That Jeanne is still with me. Still my best friend. My true love. Yes, that sure as heck makes mourning a lot easier. --Jim Broede

Saturday, September 15, 2007

My dream...serving the common good.

I have a dream. And a solution, of sorts, for some of our country’s and the world’s many problems. Everything from the need for respite care for Alzheimer care-givers to helping the poor and impoverished people of the world. I’m for mandatory national service. Right here in America. Every able-bodied and able-minded young American would be required to join, to give two years of serving the common good. Maybe we’d call it the Common Good Corps. I’d also encourage retired senior citizens to join the corps, voluntarily. The idea is to have vast numbers of citizens available to help people in need and for serving the nation’s and the world’s common good. The draftees and volunteers would be allowed to choose from a variety of public service. Some may even choose the military. Others could choose strictly peaceful service, such as working at nursing homes and hospitals or in projects aimed at helping poor and destitute and needy people. Just think of what could be accomplished from all this. We’d set an example for the rest of the world. And gain great respect for America, too. And at the same time we Americans would gain respect for ourselves – for working for the common good. I also have a hunch that after our two-year stints of service, many of us would become hooked…and work for the common good for the rest of our lives. Yes, that’s my dream...serving the common good. --Jim Broede

Friday, September 14, 2007

Thrilling thought.

When I look at life, it seems like I have so much. So much opportunity to meet my needs. My emotional and mental needs. It just takes a little doing. A bit of imagination. A bit of daring. I just learn to be myself. And I let other people be themselves. I don’t change other people. They have to feel their own way through life. Adjust. Push limits. Especially in one’s spiritual life. I don’t mean in the conventional religious way. I’m a free-thinker. Because it allows me to be free. To pick and choose my own way. I'm not required to accept the dictates of organized or orthodox religion. I don’t have to follow the crowd. I commune with god on my own terms. And I commune with myself. On my own terms. Freedom of expression. Freedom to choose my words. I’m allowed to experiment and to make mistakes. I don’t need a well-devised plan. I just go with the flow. Naturally. I have a sense that I want to say something. So I let it out. Maybe ramble. But it feels good. Because I’m allowing myself to walk naked in the world. To be myself. Unafraid. Yes, that makes me feel free. That’s why I write. Why I speak. Why I love. That’s the way I nurtured the Jim/Jeanne relationship. The way I cultivated love. And I still don’t fully know the meaning of love. Maybe never will. It’s like trying to define god. Good gawd. That’s impossible. Beyond me. But it’s delightful accepting the existence of something I can’t fully comprehend. God. Love. It’s like that rainbow that one chases. One can see it. The light. Ever so colorful. Beautiful. One can’t touch it. But it’s real. Maybe it’s a reflection of god. A piece of god. We’re all a fragment of god. It’s that kind of thought that keeps me going. Thrilling thought. –Jim Broede

Makes me blessed, doesn't it?

I’m living last February. In my journal. Snow is predicted. We’re supposed to get 12-15 inches by morning. The wind is howling. Makes for a blizzard. But now that I’m a retiree – well, it’s easy to take. No travel required. And I’ve been out walking. And shoveling the driveway. I refuse to buy a snow blower. I like physical activity. Exertion. I like feeling my body in motion.

And, oh, I’d love to have Jeanne with me today. The physical Jeanne. The beautiful Jeanne. The Jeanne that I could touch. And love. Body and soul. Well, I have to settle for the spiritual Jeanne. Which is good. No complaint.

Sometimes, I crave everything. I want it all. But I adjust. I take what I can get. Spiritual love. Ain’t all that bad, really. I write letters, too. To people that are alive and conscious. Kindred spirits. Existing in the flesh. That’s consolation, too. Someone alive is hearing me. Through the written word. Amazing, isn’t it? The power of words. Language. Expression. I talk to Jeanne, too. Jeanne’s spirit. I know Jeanne because I have loved Jeanne in so many, many ways. Maybe I’ll never love those same ways again. But it’s a wonder. That I did love, and that I still love Jeanne in meaningful ways. In spirit.

And in a little while, I’m going outdoors again. Into the blizzard. And as I walk, I’ll reach out my hand, like a true romantic/idealist. And I’ll grasp Jeanne’s hand. And I’ll be grateful for the moment. That feeling. That touch. That connection. Thankful that I was given the opportunity to love another human being, dear Jeanne, in this lifetime. And I’m still able to write a love letter. Like this. Professing my undying love for Jeanne. Makes me blessed, doesn’t it? –Jim Broede

Thursday, September 13, 2007

An open letter to my fellow human beings.

Dear fellow human beings:

Let’s inspire each other. From a distance. Yet close in a spiritual sense.Let’s share ourselves. Our thoughts. Our dreams. Our misgivings. Our anguish. This is what we need in our lives. Contact with kindred spirits. To buoy our spirits. To lift our morale. To know that others understand what we feel. That we aren’t alone. Then we can go on living our lives. In meaningful, fulfilling ways. Knowing that we can find sustenance from other living beings. Someone who understands. I think we understand each other. We’re friends in the making. We can wish each other happiness. In our present situations. By broadening each other’s scope. Extending our horizons. Bringing passion into each other’s lives. With words. Meaningful words. This is the way people – two human beings – are supposed to communicate. It’s called dialogue. And there’s intimacy in this. The inclination of some is to think of intimacy only in sexual terms. But true intimacy is much deeper than that. It’s the way we talk to each other. Honestly. With passion. With soulful meaning. See, fellow human beings, we can be intimate. From a distance. With words. And thoughts. And we can still be true to ourselves. Who knows? Maybe we can inspire each other to be more intimate with, oh, so many, many people around us. Life, you know, should be a grand and intimate experience. --Jim Broede

Wednesday, September 12, 2007

Just to be a decent human being.

What makes one country better or worse than another? I think Americans are arrogant in thinking, for instance, that we’re better off than Germans or Norwegians or the Irish or the English or the Canadians or New Zealanders or Tahitians. On and on the list could go. Oh, I’d rather live in the U.S. than in Somalia or Ethiopia or Egypt. But I could live a good life in many other parts of the world. Of course, I’d be most comfortable in an English-speaking country. And living with someone I loved. I’d find it hard to pledge allegiance to any country. I’d rather be considered a citizen of the world. Not a patriot for a specific country. We tend to divide ourselves into ethnic groups and racial groups and social groups and political groups and economic groups. We need to think of ourselves more as human beings. Or of people capable of loving each other despite our differences. Yes, I’m disillusioned. A disillusioned American. I’m not particularly proud to be an American. Instead, I’d like to think of myself as Jim Broede, a citizen of the world. Now that’s something that could make me proud. Just to be a decent human being. --Jim Broede

Tuesday, September 11, 2007

...and I guess that has got some of you so very angry.

The question is, why do I put up with the crap in the comments section? Because I like to alienate people? Piss ‘em off? Because I can hardly believe some of you people? You’re crazy, some of you. Looney. Which, I suppose, makes me looney, too It’s amazing what my written words bring out in people. I push your buttons. Some of you dislike me. Detest me. So much. Why do you keep coming back? If you detest me to such a degree, one would think you’d just say adios. But you keep coming back for more. To have me keep pushing your buttons. To see what I’m gonna say next. And to tell me how much you despise me and disagree with me. And to tell me that I’m insensitive and inconsiderate and hurtful. That I’m evil. In collusion with the devil. You seem to think I cause an almost unbelievable amount of hurt. Anguish. Harm. It baffles me that you can’t leave it alone. Just write me off. Write off Broede’s Broodings. Yes, push a button. Turn off this blog. Maybe it’s that I’m hitting what’s sacred with you. With your way of life. With our country. With your religion. I’m questioning it all. All the pat assumptions that we’ve lived all our lives. Whether we really love. Really care. About each other. About anything meaningful. I’m suggesting that many of us are living lies...and I guess that has got some of you so very angry. –Jim Broede

It just doesn't make them goddesses.

You women have to learn to understand that I love and like women. Generally speaking. Maybe there are a few I don’t like. The guttersnipe types. But they are relatively few and far between. A very small minority. But I understand why it’s been suggested in the comments section of this blog that I hate women. That’s not only untrue. It’s preposterous. Here’s how I think the misunderstanding has come about. I was married to a goddess for almost 40 years. Really, I’m still married to Jeanne. In spirit. No woman that I’ve ever known has measured up to Jeanne. That’s impossible. Because Jeanne is a goddess. Not just a mere mortal woman. So in comparison, Jeanne is a notch above other women. At least from my perspective. That doesn’t make other women less than loveable and likeable. It just doesn’t make them goddesses. –Jim Broede

Brainwashed by the power elites...mostly white males.

I feel advantaged. Because I’m a man. Not a woman. A man has more privileges. It’s a man’s world – designed to benefit man more than woman. Always has been, and probably always will be. Also, in American society the edge goes overwhelmingly to the whites over the blacks. Always has been. Oh, sure, there have been 'improvements.' So-called gains. Moves toward fairness. More equality for all. But still, there are significant inequalities between men and women and between whites and blacks. Women should find it easy to understand the plight of blacks. Because the cards have been stacked against women. Virtually forever. Women didn’t even get the right to vote in America until a century and a half after the nation was founded. The blacks had to wait a bit longer. And had to start out as slaves. Uprooted. From their homelands. By force. Women, by the way, still don’t fully have equal rights. In practice. White women, however, have a consolation. If they were black women, they’d have fewer rights. Must be frustrating for women. Denied equal footing with men. Sure, women have made progress in America. But, baby, you women still have a long way to go. Maybe you white women can feel good in that you’re treated more equal and more fairly than blacks. But still, you aren’t as ‘equal’ in practice as a privileged white man. Women, by the way, have been subjugated in this world far longer than blacks. It wasn’t until the 1400s and the Spanish conquistadors that the power elites started to look at dark-skinned people as inferiors. Women have been cast as inferiors forever, or so it seems. Some blacks, and some women, too, have for far too long pacifily accepted their designated roles as 'inferiors.' And to this day, some women fool themselves into thinking it ain’t all that bad. Because things are getting better. That’s a sign, dear women, that you’ve been brainwashed by the power elites...mostly white males. –Jim Broede

Monday, September 10, 2007

That's all I'd need...a Jeanne.

I try imagining living in a black supremacy society, or in a country where the power elites are oppressive white women, or in a Muslim theocracy. Wouldn’t bode well for me in any of those places, I suppose. After all, I’m a white male and a free-thinker, and damn proud of it.

But I’d like to think that I could survive and live happily under those conditions. Because I like to make the best of bad situations.

It’s a little like what I did when Jeanne came down with Alzheimer’s Disease. I had to learn to cope, and to take good care of Jeanne.

And I did it by focusing on what I had to do; and by staying positive.

I became stretched thin as a 24/7 caretaker, and became exhausted and depressed, and that made me an inadequate care-giver. I finally had to put Jeanne in a nursing home, so I’d get much needed daily respite.

Well, as it turns out, I became an 8-10 hour a day care-giver, supplementing the care Jeanne got from the professional staff at the nursing home. And it worked wonders. For Jeanne. And for me.

An agitated and belligerent Jeanne became a content and happy Jeanne, and even showed some cognitive improvement during her 3 years at Birchwood. And I think I had a lot to do with it. Because I gave Jeanne positive attention and loving care. I didn’t miss a day with Jeanne in 38 months. With rare exception, I took Jeanne outdoors daily, and pushed her wheelchair 8-10 miles. I hand fed her lunch and supper. In her room. And played soft, soothing music. And I gave Jeanne a nightly shower and body massage. Often, I’d bring Jeanne home for a few hours. Especially during the good weather periods in the spring, summer and fall. I personally tucked Jeanne into bed every night. And whispered sweet nothings.

Indeed, it was a fulfilling, satisfying, positive experience. Yes, I had made the best of a bad situation.

Anyway, as I see it, living in a black supremacy society or in a country where the ruling elite were oppressive women or in a Muslim theocracy – all of these, would present a challenge. But I don’t think it would be any more difficult for me to cope than it was in being Jeanne’s care-giver for 13 years. I could adapt, and live a satisfactory life under all of these scenarios.

And here’s how I’d do it. I’d sort of isolate myself. Live in a cocoon, so to speak. I’d cultivate close and understanding and even intimate, one-on-one relationships/friendships. That’s how I’d get my sustenance, my life fulfillment.

To me, there’s a certain pleasure in not fitting in to a social structure. Makes one feel more like an individual. To be left out. To me, the real hurt comes from not fitting into the political and economic structure. It’s easier for me to adapt if I am denied access to the social structure. I can become a loner, and like it. A lone wolf. And still feel comfortable.

If I’m ostracized by society, it’s because of my thoughts, my ideas, which go against the grain, against the popularly supported accepted thinking. I would be in conflict with the majority sentiment. I would be in disfavor with the power elites.

But I would try to persuade the powers-that-be that I am no serious threat. That I recognize that as an individual I am powerless to overthrow the regime. And I am satisfied to retreat to my cocoon. And I could have a satisfying, fulfilling life there, with my handful of associates or friends. Maybe only one friend. That’s all I’d need…a Jeanne. –Jim Broede

Love is its own reward.

I think the secret to success with a dementia patient, especially a loved one, is to have fun. To be at ease. To not get flustered. To never show anger or frustration. Even if one is angry and frustrated. In other words, to exude good vibes all of the time. That's not easy. But it can come with practice. I learned to find what would comfort my Jeanne. I was always there to console her. To make her feel safe. And loved. And you know what? That was great therapy for me, too. In comforting and consoling Jeanne, I was comforting and consoling myself. In loving Jeanne, I felt like a lover. No better feeling than that. Love is its own reward. --Jim Broede

Sunday, September 9, 2007

...love makes the ordinary extraordinary.

I think of myself as a poet, writer, thinker and lover. Actually, a romantic poet, a romantic writer, a romantic thinker and a romantic lover. And I try to live it. Because it makes me feel good. And happy. And joyful. Maybe I’m crazy, too. But I mean a good crazy. There’s bad crazy. And good crazy. I dare to walk naked in the world. To be. To be myself. Even if that means making a fool of myself. That’s another thing that I am. A fool. Enough of a fool to fall in love. With Jeanne. Forever and ever and ever. And with life. Oh, I become sad when I lose a loved one. But then I remember, I haven’t lost everything. I still have the spirit. The meaningful spirit. If one has truly loved, one never loses the spirit. Oh, I talk like a fool. Like a crazy man. Because I believe. In love. I’ll always love somebody. Or something. I need to love. It’s a necessity. The only way I can survive. Yes, love makes the ordinary extraordinary. –Jim Broede

...what makes life so wonderful.

Here’s the way I look at life. As a writer. I can put a story of life down on paper. Yes, create a make-believe story. For people to read. Or, I can actually live the story. Create my own reality, Which, I think, is really what god wants me to do. That’s the closest one can come to communing with god. The closest one can come to controlling one’s own life. One’s own reality. One’s destiny. I can live the story – the life – that I create. Actually live it. In person. Chapter by chapter. One day at a time. I have the power to interpret what is happening to me, and around me. The significance of it. I can create my own meaning. For good or bad. I can give life a romantic/idealist interpretation. Or I can give life a negative connotation. Yes, I am free. To choose my reality. I can choose to write a reality. Or I can choose to actually live it. And I’m making a choice. Yes, I’m trying to live my life rather than turn it into a novel. I don’t want to imagine living. I want to live, chapter by chapter. Day by day. Not knowing what’s to come next. I have to turn each page to find out. And that’s what makes life so wonderful. –Jim Broede

Saturday, September 8, 2007

And maybe in a spirit world after we die.

I feel guilty. To a degree. Because I’m not vocal enough. Oh, I’m not silent. But I’m frustrated. In that I am a solitary individual. An individual that feels more or less powerless to do much to change the drift of our society. Our nation. To do anything significant to bring down (change) the system of white supremacy.

I’ve drifted into a lethargy, of sorts. Out of disappointment with the system that doesn’t – and never has come close – to abiding by the credo that all men (as in humankind) are created equal. The power structure in America is, and always has been, built in a way that grants privileges to an elite. This equality thing is baloney, no more than a sham in actual practice. So many of us have been duped into thinking it’s real – that we actually as a nation practice that credo. When we don’t even come close. American society is, and always has been, a system based on white supremacy. And then by a relatively few privileged white, a ruling elite. Yes, most of us, especially the lower and middle classes, whether we are white or black, are being exploited. White folks like me. I’m exploited in that I’m denied basic rights, basic privileges, basic freedoms, basic human rights. Oh, I have more rights and more freedoms than my black counterparts, because I am white. But still, I’m denied many rights and freedoms because I am different. A romantic/idealist, a free-thinker and a political and social liberal, maybe even a communist sympathizer. I’m certainly a socialist at heart. I’m at odds with the ruling elite, with the power structure. I feel alienated. And at times I feel like shouting, “I’m mad as hell and I’m not going to take it any more.”

But what have I done about it, really? As I have grown older, I have tended to withdraw. From society. It’s my way of protest, I suppose. I withdraw into my cocoon. My self-made cocoon. Because I am alienated. I don’t like the rules. I don’t like to conform. And I feel overwhelmed. And sort of helpless. Unable to change the system in my lifetime. Therefore, if I retreat to my cocoon I can sort of establish my own rules, in my castle, in my domain. The more I isolate myself from other people, the more I feel free. I admit this may be no more than an illusion. In a sense, I have imprisoned myself by creating my own limited world. But I communicate. More or less inwardly. With the spirit within me. I have a voice. In that I write daily. A journal. To keep myself mentally and emotionally stable. Stimulated, so to speak. My life over the past 40-some years has been largely interaction with one other. In my cocoon. Interaction with Jeanne. My wife. My best friend. And maybe my only true friend. My anchor. And now she's gone. Dead. Since January. Fortunately, I still cling to Jeanne’s spirit. And that keeps me going. I’m still trying to escape from the rest of the world. Yes, I retreat to my cocoon. Daily. Jeanne has been my consoler. My lover. My protector. My salvation. My anchor. My confidant. My connection with another human being. Yes, it’s Jeanne that made my life worthwhile. Jeanne made me happy. Yes, I’ve survived all these years. Mainly with the help of Jeanne. And maybe two new-found friends, Rosie and Cherie. Most everybody else are mere acquaintances. People I like, for the most part, but people I don’t come to know in intimate ways because I really live in a cocoon. And I emerge only to conduct the necessities of life. The necessities of survival. The necessity of making a living. And now that I’m retired, it’s possible to reduce or cut off discourse. Possible to spend an increasing amount of time in the cocoon. Where I’m “free” because I’m relatively isolated. Where I have found solitude.

I interact with only a few. A handful of people. Individuals here and there. I can let them know that I’m on their side. That I empathize. That I sympathize. That I think the societal and political and economic system we live under is dreadful and a disgrace to human kind. And the sad thing is that in our limited lifetime we may be unable to change the system in significant ways. The change will be ever so gradual. Like human evolution. It’ll take generation after generation after generation. Small changes here and there. That some of us (folks like me) will dream about in our cocoons. And maybe in a spirit world after we die. –Jim Broede

...it'll take a long, long time to expurgate.

I was an 8-year-old kid at the time. Growing up in Watertown, Wis., population 10,301. In 1943. A lily white community. No black families. But I remember that as kids of that era, we chanted, “Einie, meany, minie moe, catch a nigger by the toe, if he hollers, let him go…” I wasn’t consciously aware then that I was repeating a racial slur. Where did I pick it up? I presume from other kids. White kids. We didn’t know any black families. But we knew who a “nigger” was. Someone inferior. Someone we didn’t want to be. Someone we could poke fun at.

I think my introduction to racism was from a distance. World War II. I was conscious that we were fighting Nazi Germany. Because Nazis were bad. Evil. Because they persecuted Jews. Because they were racists. It didn’t yet occur to me that Americans were racists, too. Maybe as much as the Nazis. I wasn’t aware of segregation or the denial of civil rights to blacks. Germans believed in a master race. In white supremacy. Ironic, isn’t it? Turns out Germans and Americans shared pretty much the same attitude. We treated blacks like scum. Dirt. Inferiors. For a long, long time we did. We even enslaved them. Lynched them. Denied them basic human rights. Still do, in so many ways. But hey, we’ve got a president declaring war, of sorts, on the “axis of evil.” As if we Americans don’t have an evil bone in our body. We’re Americans. Living in the land of the free and the home of the brave. We declare all men (human beings) are created equal. And look what we do in practice. Look at the real America. Rather ghastly, isn’t it? We think we’re the best nation on the face of the Earth, or so we brag. If this is the best we can do, gawd help us. I’m not all that proud to be an American. Instead, I’d like to think of myself as a human being. As a citizen of the cosmos. I’m not ready to declare, “America uber alles.” I’ve got higher priorities. Loftier goals. When I go to the post office and buy stamps, I tell the clerk, “Give me anything but the American flag.” That’s how I protest. In little ways. I don’t want to pledge allegiance to a nation founded on the basis of white supremacy. Yes, I’ll work for change. But this white supremacy stuff is so engrained in our nation’s soul that it’ll take a long, long time to expurgate. --Jim Broede

P.S. One thing I do appreciate about America is freedom of speech. But sometimes I wonder if we're even going to lose that. If and when that happens, I'm in big, big trouble.

Maebee and I...we're really thinkers. Not stinkers.

Oh, Maebee, Maebee, Maebee. At least I understand you. I understand that in some ways I'm reaching you. Because you keep coming back for my words of wisdom and comfort. I do understand that you have a clownish side. A funny side. That you are proud to have been descended from a long line of professional clowns. That like me, you are a bit crazy. I'm Crazy Jim. And proud of it. You could easily be dubbed Crazy Maebee, the clown. You do have a light side. You suggest that I have a dark side. But really, you mistake the light for darkness. I'm really a nice guy. And I give you the benefit of any doubt. So I consider you a nice gal. We're two nice people. Two peas in a pod. In fact, I'm very, very nice. When I am good, I am very, very good. And that makes up 100-fold for any time that I'm bad. I'm bad in a nice way. My badness brings out the good in others. It's like I'm bringing out the good in you, Maebee. Here you are promoting my blog. You suggest that it's a bad blog. But deep down, you know full well that it's good. Very good. And so you seek to bring people to it by telling 'em it's bad. Because you know that's a more effective way to bring people into the Broede realm. The realm of goodness. By telling 'em it's bad. And then once they come, they are hooked. By the goodness of it all. Yes, Maebee, you and I have something in common. We are convoluted thinkers. Some may mistake us for stinkers. But we're really thinkers. --Jim Broede

Friday, September 7, 2007

It's a scary thought, isn't it?

Think of it, folks. Care-givers that come to the Alzheimer’s message boards are probably the cream of the crop, for the most part. Some of the best because they know enough to seek help, to get assistance, to adapt and to openly discuss the problems and challenges of care-giving for dementia patients. But still, some active care-givers are in relatively bad shape. Mentally and emotionally. Imagine what it’s like in situations where care-givers don’t have the savvy or inclination to do something about improving their situations. The ones that don’t even let it be known that they are in dire straits. The ones that barely plod along. It’s a scary thought, isn’t it? –Jim Broede

Thursday, September 6, 2007

...a grossly inadequate Alzheimer's health care system

I get a kick out of the lady that writes me and says I should spend my time more usefully by joining a walk to raise money for Alzheimer’s research. Or by lobbying my legislators for more money for an Alzheimer’s cure. Baloney. I’ll leave that to others. I have more important stuff on my mind. Such as the inept care-giving afforded so many Alzheimer patients. Only perfunctory care at some nursing homes. And exhausted and depressed 24/7 care-givers spread so thin that they too often harm themselves and their patients. I’d rather raise hell about that. That’s where I’d rather focus attention. It’s a problem that goes mostly ignored. Read the Alzheimer’s message boards daily. You’ll come across some very dedicated care-givers. But mixed in are some folks that have no business being care-givers. They’re in bad shape, some of ‘em. Emotionally. Physically. Mentally. They need care more than their patients. They quite possibly do serious harm. Because they are overwhelmed. Maybe in some instances through no fault of their own. But others should know better. They should find ways to get respite. So they can do a decent job of care-giving. Some of those care-givers want pity parties. To get them through. Well, they need more than that. They need time off. To recuperate. To prevent burn out. They need a health care system that provides better care for people with Alzheimer’s and other dementias. That’s what I’m fighting for. For immediate relief. Immediate solutions to existing problems. Not the least being the fixing of a grossly inadequate Alzheimer’s health care system. –Jim Broede

Wow! No stress at all.

It's possible to have winning days. Even in the worst of times for Alzheimer care-givers. But often, it takes attitude adjustment. It's how one perceives some of the little things. One has to find ways to recognize it ain't all bad. Maybe only 99 percent. So, focus on the other 1 percent, or whatever it is. On good days, it may be, dare I say, at least 10 percent? I actually had days as a care-giver when I think it was almost 100 percent good. Like everything fell into place. Wow! No stress at all. --Jim

Saints are masochists.

Just talking from my own experience. Anyone who tries to be a 24/7 care-giver is either crazy or a saint. And I’m no saint. Yes, sometimes I’m crazy. Crazy Jim. But I know how to be sane, too. I recovered my sanity when I became an on-the-scene 8-hour-a-day care-giver. When I put in 24 hours a day at it, I was exhausted. And crazy for doing it. It made no sense. One can’t do a decent job of it. Not round-the-clock. I did Jeanne no favors by exhausting myself. That’s not love. That’s bull-headed stupidity. Oh, all I say to those who try to hang in as 24/7 care-givers, good luck. You’ll need it. I’m not necessarily saying put your loved one in a nursing home. But get help. Get relief. Maybe in your own home. Maybe in a day-care setting. If at all possible, make your care-giving an 8-hour-a-day thing. Give 8 hours of quality care. That’s better than 24-hour exhaustive care. Some care-givers sound exhausted. Maybe they are trying to be saints. Saints are masochists. –Jim Broede

Maybe because we aren't upset enough.

I fully expect some readers of this blog to be upset – as well they should. Dealing with diseases such as Alzheimer’s and the pitfalls of life can be upsetting. I wouldn’t have it any other way. What do some of you expect? It to be a picnic? The nasty side of life can’t always be avoided. We have to learn to face up to it. To do something constructive about it. To find solutions. Sometimes, pity parties aren’t the answer. Yes, I’ve found positive ways to deal with Alzheimer’s, and with other predicaments in life. And sometimes I’ve been taken to task for it. For being unkind. Unsympathetic. Because I see things going wrong. I see exhausted and depressed care-givers. Many of ‘em on duty 24/7. Doing harm not only to themselves, but to their patients. Many of ‘em are leading very unhappy lives. In broken and failed marriages. With their own mental health problems. Yes, that’s very upsetting. To see this happening. And we all ought to be upset about it. The fact that we have a health care system that tolerates this stuff. Self-abuse of care-givers. And care-giver abuse of their patients. It’s a terrible system. Causing so much harm on so many fronts. And we as a society let it happen. Maybe because we aren’t upset enough. –Jim Broede

Tuesday, September 4, 2007

...only when I wish I had more than I have.

Oh, I still have heartache to some degree, I wrote in my journal in 2004. We all do, don't we? I just don't allow myself to be overwhelmed by heartache. Mostly, by not allowing myself to become exhausted. I find ways to take respite. Something as simple as a walk. Playing with my cats. Writing. Preparing and savoring a tasty meal. Reading a book. Talking to other care-givers at Birchwood. And yes, talking to the dementia patients that I come in contact with daily. In other words, I try to live to the utmost. Now it's 7:30 in the morning. Barely light. A windy day. I glance out the sliding glass doors. At the lake. Frozen. And suddenly, a thump. My cat Buchta just landed atop my computer. I think a little about yesterday. A nice day. Our granddaughter Erikka came to visit. We brought Jeanne home for a few hours. Listened to music. Soft, soothing melodies. Slow dance music from the 50s. When it's dark, I'll turn on the accent lamps, all over the house. Maybe 30 or 40 of 'em. All with amber bulbs. Soft, warm light. Fills the entire house. And yes, it's time for a Haydn string quartet. By a prolific composer, who lived a long and happy life. Therefore, his music is mostly happy. Gentle, too. And yes, there is still time for heartache. That is, only when I wish I had more than I have. --Jim Broede

Monday, September 3, 2007

...to do as the god of love instructs.

I’ve dubbed them the Ladies Aid Society. Affectionately. They are a group of ladies on the Alzheimer’s message boards. Regulars. They tend to stick together in their criticism of me. They think I am irreligious, irreverent and perhaps even an atheist. They all seem to be dyed-in-the-wool Christians. As for me, I’m a free-thinker. A freelance monotheist. I believe in god. But a rather liberal and open-minded god. A god that readily admits he doesn’t know everything. A god that acknowledges there are many, many ways to salvation. Not just a single way. See, god and I don’t think in conventional ways. We’re different. And really quite tolerant and nice fellas. I have conversations with god. In lieu of praying. I like the give and take in a dialogue. I ask god questions, and usually he asks me to ponder, to come up with the answers on my own. But god assists me. Encourages me. Gives me a pat on the back. He’s my mentor. And a true friend. Yes, we’re on very cordial terms. God tells me he laughs when people depict him as vengeful and a strict disciplinarian. He’s really easy-going. Pleasant. A lover. Yes, a lover, first and foremost. God even tells me to love the ladies in the Ladies Aid Society. They mean well, god says. Their intentions are honorable, just like yours, Jim. You all should learn to accept each other. I told god he sure makes sense. God says it’s all right to think in different ways. Conventional ways. Unconventional ways. God says diversity of opinion is good for the soul. And the true nature of love, he explains, is acceptance. Total. Complete. Unconditional. God says I’m on the right track. That makes me feel good. God says it’s important that I feel love for all members of the Ladies Aid Society. In fact, for humanity as a whole. And believe me, I’m trying to do as the god of love instructs. –Jim Broede

Sunday, September 2, 2007

The price one has to pay...for complaining.

Allow me to teach you how to read this blog, please. First, try to read something you like. If you start reading a thread you don’t like, bounce over it, to another. Keep going. Until you find one that turns you on in a favorable way. If you reach the double digits and still haven’t found an appropriate thread – well, maybe it’s best that you forget it. This blog probably isn’t for you. No sense in wasting your time. I think most open-minded people will like reading broede’s broodings.. It’s a little like picking up a newspaper. I never read a newspaper that I liked totally. I would always pick and choose between the articles. Some stories I liked. Others I didn’t. I’m a discriminatory reader. If one goes to the comments section of this blog, you’ll find plenty of folks that tell me what they don’t like. And some, thank gawd, tell me what they like. My kind of positive thinkers. Well, my advice for the gripers and chronic complainers is to go elsewhere. Find another blog. More to your liking. You won’t hurt my feelings. However, if you have an open mind and want to learn something, by all means, stick around. That doesn’t mean that you complainers have to leave. You still have freedom of choice. I can understand that some of you aren’t happy unless you have an opportunity to complain. If that’s what makes you happy, I’ll listen. To what ever you have to say. Because I’m courteous. And I'm a nice and considerate guy, too. I won’t necessarily accept your complaints as legitimate. But hey, you can’t have everything. It’s also possible that I may poke fun at you. But again, that’s the price one has to pay…for complaining. –Jim Broede

Hopefuly, his spirit made it home.

I remember Frank. He came to Birchwood, the nursing home, on Dec. 23, 2003. About a month after Jeanne. Frank had a stroke. That caused the dementia. Also, Frank fell at the nursing home. Broke a hip. Frank lived in the memory care unit, down the hall from Jeanne. And he hadn’t been home even once since his arrival. Frank wanted to go home so desperately. But his wife and daughter didn’t think that would be a good idea. “He’d want to stay home,” his wife said. “We’d have great difficulty getting him back to the nursing home.” Frank went through periods of deep depression. He lamented. He said he wouldn’t give anyone trouble. “I’d come back without a fight,” he promised. “I just want to go home for a few hours.” I was on Frank’s side. His advocate. I kept trying to persuade Frank’s wife to take him home. For just a little while. His wife was a very nice woman. She visited almost daily. Missed only three times, I think. But she steadfastly resisted bringing Frank home again. It was only 10 miles away. Frank was wheelchair-bound. I offered to assist. To help move Frank. To bring him home for a few precious hours. I thought it was worth the risk. I said, “Let’s see if it works. If it doesn’t, we won’t do it again. If it helps Frank’s morale, then maybe we can do it again and again and again.” Some days, Frank became so depressed that he cried. “I want to go home,” he said. "Please, please take me home." In the evening, I routinely wheeled Frank up and down the hallway. To try to lift his spirits. A little. To relax him. Maybe he was pretending that he was on a ride home. We talked. And maybe Frank dreamed each night. Of being home. I told Frank so often that we’d work on it. Together. I thought his wife was starting to budge. A little. But Frank died. Too soon. Hopefully, his spirit made it home. –Jim Broede

I collect 'em every day.

I remember that day we were riding up the elevator at the nursing home after a day's outing. And I told Jeanne that I thought we had a wonderful day together. I reviewed all of the activities. And out of the blue, Jeanne asked, "Do you still love me?" My reply: "Of course, I do. More than ever." Ah yes, happy moments. Precious moments. The dividends from being alive. I collect 'em every day. --Jim Broede

Saturday, September 1, 2007

Sweet dreams...of being a butterfly.

I still remember the day. It was cold. Below freezing. But sunny. Calm. Pleasant. Invigorating. Jeanne wrapped in a bulky thermal sleeping bag. A cocoon. Strapped in a wheelchair. Off we go. For 7 miles. Then we’re back in Jeanne’s room at the nursing home. I unwrap Jeanne. Slowly. And I exclaim, “My gawd, Jeanne, you’ve become a butterfly." Jeanne grins. A big, big grin. Like a little girl. Believing. That night, as I tuck Jeanne into bed, I declare, “Remember, Jeanne, you are a butterfly.” I whisper it. Again and again. And I see a long-lasting smile. Of delight. I move like a dancer. My arms and hands swaying, To mimic the fluttering flight of a beautiful butterfly. And yes, I turn off the lights. And wish Jeanne sweet dreams…of being a butterfly. –Jim Broede

...the result of good vibes therapy.

My Jeanne has had good days for several months, I wrote in my journal in 2004. Every day is a good day. Compared to where Jeanne was at a year ago. The most dramatic improvements came after two seizures eight days apart. No seizures since then. Some people may say it’s a miracle. Oh, Jeanne isn’t cured. She’s still dementia-afflicted. Quite obviously. But she’s more her real self. Sweet. Polite. Not belligerent. Not agitated. She knows me. Calls me sweetheart and honey. A year ago she wasn’t herself. But hey, I’ve worked with Jeanne. Diligently. Relentlessly. Day in and day out. I’ve immersed Jeanne in good vibes. Never an angry word. I speak softly. Kindly. I profess my love. With words. We go on wheelchair treks daily. Typically, 10 miles. So Jeanne gets fresh air. And motion. She sees other people. Activity. Outdoors. Indoors. I play soothing music. I hand feed Jeanne. Lunch. Supper. I bring her home for a few hours. Every week. Sometimes, I lift her into the car and take her with me, shopping. I put her on the toilet, and sit with her, ‘til she has a BM. Naturally. No more suppositories or enemas. I talk to Jeanne. In simple sentences. Simple words. I remind her daily to not forget one thing. That I love her. Very much. More than ever. I tuck her in bed at night. And smother her with goodnight kisses. Yes, some folks tell me Jeanne’s improved condition is a miracle. That Alzheimer’s patients aren’t supposed to get better. Well, I think the afflicted deteriorate when they are immersed in negative vibes. When they don’t get adequate attention. When they are warehoused. When they don’t get fresh air. When they are left alone. Maybe in front of a TV set. When they don’t get visitors. But give them special attention. Give them love. Give them physical stimulation. And give them immense amounts of mental stimulation. Not just token amounts. I mean daily. Without miss. And you’ll see more and more Alzheimer patients get better. Dramatically better in some instances. I work with others at Birchwood (the nursing home). Not just with Jeanne. And some of those I work with get better. I can give example after example. And hey, it's time to understand this stuff ain’t miraculous. It’s the result of good vibes therapy. –Jim Brioede