Dignity...

My mother is dying.

Sorry to be so blunt but there is no other way to put that which both gets right to the point and illustrates the abruptness of death, regardless of how long a person lives.

She is dying.

Over the past months, I've watched her struggle to come to terms with her own mortality. When she had her stroke, she fought with each breath her 93 year old body could muster. She worked hard through her therapy and always, always, always lamented each day she had to be in that nursing home. She was being tube fed and all she could think about was solid food. She's ask us, every single time we visited, what we had to eat that day. When the day came when she could eat solid food again, she told me to "go home" when I came to visit her at that first dinner hour. She wanted to savor that dinner roll all on her own without the interruption of having to also make small talk! When she finally came home, she continued to work through her therapies but it was difficult. She was tired. Her body couldn't take much more.

She became frustrated. This was taking too long, this recovery. And it was harder than she could imagine. And she was stuck in a body that wouldn't cooperate, wearing adult diapers, not able to make sense of her words but with a mind as sharp as a tack which made it all the more frustrating. She became sad. She never wanted to be a burden, to have someone have to do anything for her let alone now do literally everything. She suffered the embarrassment of having her son-in-law have to lift her to the toilet while someone else pulled her pants down exposing her just so she could eliminate herself. She choked, often. Her ability to swallow was compromised so even the slightest bit of food or water could set off terrifying bouts of coughing and gasping for air. She ate less and less and now eats so little she is barely getting any nutrition at all. She went from a robust 148 pounds to about 90 pounds, if that. She cannot heal. She has a sore on her bottom and backside that is eating into her muscle and bone and oozing all the time in spite of the nurses packing it daily. Her pain increased in spite of her trying to keep up with therapy and now she is on morphine all the time.

My mother is dying. But...

She is dying at home surrounded by her children and grandchildren and great grandchildren. She has at least one moment every day when she still gets a good laugh. She hears someone say "I love you" several times each day. She gets to sit and pet Bella, her best canine friend. She has time to sit outside with the sun warming her thin face. She has been able to smell the spring flowers and see the first summer veg come up in the garden. She has been able to watch and bemoan her beloved Chicago Cubs while gently sipping a Miller Genuine Draft that she is never able to finish. She can still play cards every weekend. And win. She quietly welcomed her sisters for a visit a few weeks ago and tolerated that as best she could. They were understanding and grateful of the time they had together. It will be there last. She prays everyday. She asks if she will get to heaven. If she doesn't, none of us have a chance! She wonders what heaven will be like and we assure her that it will be just as she always believed it to be with Dad and my Grandparents and Aunt Sophie all waiting to welcome her in.

One day soon, I know, my mother will stop breathing and go into that great last adventure. After watching her struggle and hurt and suffer and wane away to almost nothing, I know that day will be a blessing for her. I'm ready for that day. I think she is too. But what I am most grateful for is that my mother could spend these last months, weeks, days, in the bosom of her family. Family has always been the most important thing in her life. We grew up with nothing but she always made us understand that we have each other. And now she has us and this is the proof that there can and should be dignity in life and dignity in death. No one should die alone and unloved. My mother will be celebrated when she finally passes. She will be celebrated by her former students, her colleagues, her friends but most of all her family. We are all who we are today because of her. We owe her so much. And I know that my life, in some way, has been a testament to this amazing lady.

My mother is dying.
And we are all at peace with that.

Meanderings on Memorial Day Weekend...

I would say I'm not big on sentiment but those who know me would say I was lying. I guess I'm not big on sentiment in the usual way. For instance, this weekend is Memorial Day weekend. Now I know the real meaning of this holiday is to remember all of those who have fought and given their lives for our freedom. But, it's also a time to remember those in our own families that have gone ahead.

I was out to St. George Cemetery yesterday. Strangely enough, not to pay my respects to my father who is buried there. I just don't believe he is still there. I mean, yes, his body is there under the ground but my Dad is not. He's all around me, in my thoughts, in who I am. I don't get those people who believe that last resting place is the place to go and "visit" their deceased loved ones. Anyway, I digress...

What fascinates me most about St. George Cemetery, or any cemetery for that matter, is the grave stones. I wonder who were these people, how did they live, who loved them, who did they love, what did they do, and, finally, how did they die? The dates on the stones make me think of these things. I'll see one man, born in 1881 and died 1971. He lived a long life and I wonder what life he had? And right next to him, a girl, born in 1882 and died 1884. Just two years old. Makes me wonder how she died. I get lost in trying to create the stories of the people buried there. Anyway, I took some pictures while I was there. So here they are...








Happy Memorial Day Everyone!

One word that stands strong in all of us...

The title to this entry is a quote from one of my program participants. He's a guy with a serious mental illness. He talks slow, shuffles along because of his medications, often has the worst hair days, wears a heavy Packer jacket - even in summer. The word he's referring to? Hope.

Today he came in to say hello and I made a comment about the blue sky and the sunshine which had been eluding us for the past week. He said, "Maybe it will warm up today." I replied, "I hope so!"

He thought for a long time, a thoughtful look in his eyes and said, "That's one word that stands strong in all of us."

I know our conversation was about the weather but, at that moment, I knew he was talking about so much more. And I have to tell you, it always give me hope to know that even these down trodden, ill, struggling individuals I work with have a strong sense of hope. Hope that there's something better. Hope that today will be a good day. Hope that someone will give them a smile or a kind hello.

We all have hope. I like that.

How hard it must be...

It's no secret. I work with adults with mental illness. In any given day, I see people fighting the good fight and surviving with severe and persistent mental illness. Best case scenario, I've seen people come to some degree of acceptance that they are living with a chronic, life long illness that will always need medications to control. Those people find a way to live with it and get on with life, forging relationships, having families and whatnot. The stuff we all do in our own way.

I've seen others who trod into our agency on a daily basis, consigned to a life of taking medications and seeing themselves beat down by life. They walk with their heads down, their life-spirit gone, and never regain the belief that they really are someone.

The hardest people I work with are those that are young, newly diagnosed, and defying the diagnosis at every turn. You see, with a mental health diagnosis, a trip to a psychiatrist or counselor, a prescription for psychotropic medications comes a terribly stigma placed upon them by friends, family, society as a whole, and themselves. Think about it. How many times have you said "That guy is crazy!" when someone has said or done something out of the ordinary. With the medications come the side affects. There are no psychotropic meds out there that don't offer some side affects. Some are worse than others but overall one can expect drowsiness or sleeplessness, or a foggy feeling, or intense weight gain as much as 20 - 50 pounds, hair loss, impotence. Sounds fun, doesn't it? What 29 year old male wants to feel that way? Or a 20 year old female for that matter. Oh, and there can also be drooling, blurred vision and a general apathetic attitude. Try taking a college entrance exam like that. Or interviewing for a job. Often the choice to not take medication is the difference between choosing to hear voices and "feel" relatively normal or not hear voices and "feel" like a load of useless crap. And try explaining to a girl you meet or a boy you like that you are schizophrenic. Most people hear that word and think "serial killer" or "rapist".

I try to equate mental illness with other chronic disorders, like diabetes for example. If you are diabetic, you have to take insulin or the results are horrible and can be fatal. The same is true with mental illness. But we rarely hear of a stigma attached to someone with diabetes.

I don't have a diagnosed mental illness so I can only imagine, from what I have learned over the years, how hard it must be to come to terms with having one. My heroes are those who pull through, after years of hospitalizations, jail time, evictions, and losing everyone around them to manage to create a life for themselves in spite of it all. I can only hope those young people I work with will find a way to do just that.

In the meantime, I urge you all to do some research. Contact your local National Alliance for Mental Illness (NAMI) and open your mind to the possibilities of what treasures each of us, even those with mental illness, have to offer.

A life less lived...

I've been trying to figure out how to write what I've wanted to write all day now. I had intended to get to this blog earlier but my thoughts weren't coming. You see, I want to write about someone I know that passed away yesterday. Where to begin...

About 15 years ago, I started a new job as a case mananger for developmentally disabled adults. I had never done that type of work before and didn't know then that case management would become my passion. I was green and I was eager and I was scared. I had been hired by the agency I currently work for, in a position for a program they were just starting out with. I was the only case mananger there. My client list came from the previous agency who had the program. I was given some files, some names and some sketchy training and I was off.

One of the first things I did was call everyone on my case list and made appointments to meet them all. The very first person I met was a woman named Kathi. Reading her case file was like reading a novel full of abuse, neglect, financial issues, personal issues, struggles and triumphs. One thing was certain. Kathi did not not nor did she think she needed a case manager. She made that abundandtly clear the first time we met. She was unwashed, disheveled and angry and she stayed that way for months. Nothing I could say seemed to change it and it didn't help that I had to become her payee as well since she was not able to take care of her own money. Now I was the enemy.

My first year with Kathi was hellish at best. We had many, many arguments which almost always ended with her calling me some choice names and walking out. But she always came back.

Over that year, we found a way to work together and, eventually, she began to trust me. When she got into some terrible crisis, she came to me and we worked it out. She got very ill psychiatrically and she trusted me to work with her docs to get her as stable as we could again. The she got arrested. There was nothing I could do to stop her from going to jail and serving time. It was not right. She was very ill and jail serves no purpose in treating mental illness. When she was released, she was very paranoid and changed forever. It took a long time to get her to live independently again and to see her toothless smile again.

I moved on to a superviosry role but I would see Kathi when she came to the office. She always had a smile for me. Always said I looked like I lost weight! (Which I didn't but which endeared her to me all the more!) She would be nervous and scared to come in but would smile through her fears and lightened everyone's day.

She had a hard time with the silly things we take for granted like bathing ourselves, making friends, or just being out in public. She often had a strong smell from not bathing or brushing her teeth regularly. Sometimes she wouldn't make it to the bathroom and she would wet herself. Yet, everyone who ever met her was better off because of it. She was kind, thoughtful, caring, and interested in our lives in a way that we seldom see in eachother. Kathi had a hard, hard life. One that, if you never met her, you might think was not worth living. I think she would disagree with you.

And the fact that she would disagree with you shows what a remarkable spirit she was. Kathi was found dead in her apartment on Tuesday, natural causes.

She touched my life and I can only hope that I touched hers in some small way.
Rest in peace, Kathi.

My wish for you...

I wish that you will always know your inner gifts and appreciate how unique and special they are.

I wish that you never lose your spirit of adventure even when life rears up and tries to take it from you.

I wish that you will reach that place within yourself that knows who you are and trusts that the path you choose is the right path because it is the path you are comfortable with and willing to endure.

I wish that will always see the world with eyes wide open, hands outstretched and heart ready to take it all in.

I wish that one day you will come to feel at peace with yourself.

I wish that you will always know that there is at least one person in the world who loves you unconditionally, accepts you for the amazing person that you are and understands you implicitly.

I wish that you will understand that those quirks that you try so hard to find some explanation for and reason them away are the very same things that make you so amazing and should never be taken away from you or given away by you.

I wish that time will be kind and all the need for patience will be rewarded beyond your wildest dreams.

I wish you love and joy and adventure and security and happiness now and for the rest of your life.

And most of all, I wish that you will always know, every single day of your life, that I love you.