One of my word press reads talked about having a 26 hour day. It reminded me of the book about Alzheimer’s with that name. Living with someone whose mind is slipping away moment by moment is excruciating. It is hard on those who are losing themselves day after day but it is harder still on those who are watching it happen. Losing the person you love until they no longer know you is beyond terrible.
I have worked with families dealing with this crisis and it is so difficult and painful. It is so hard to cope when the muddled mind changes reality. Caregivers want so badly to correct the thinking and this exacerbates the situation. We want so much to bring them back to who they were and caregivers have to learn to live into the persons reality. I used to visit someone who thought he was living his 20 year ago life. When we talked I had to accept his viewpoint and talk with him about life as he was living it. This is much more difficult for the caregivers.
As the disease progresses management at home can become impossible. Frequently the patient has something called “sundowners.” This means that they are alert when everyone else needs to sleep. A friend of mine’s mother climbed out a window in the middle of the night to “go home.” How can the average family cope with someone who could leave the stove on starting a fire or turns on the bathtub faucet flooding the house? Caregivers are stressed and exhausted.
In the USA the other problem is the cost of care. Many people have to manage care at home with little help. Their day becomes the 26 hour day. Be kind and compassionate for those who are care-giving someone with this illness. Help where you can. Their life is disintegrating one moment at a time.
When we are willing to share our woundedness it allows us to connect on a deep level with others.
This is a poem I wrote about that.
The pain is near
Close inside my soul
It holds my essence
The past that is me
It holds the secrets
Things not always shared
But given freely
To ease distress
The pain others fear to share
Pouring out over the torn
And bleeding hearts
Joining our souls
Connecting our depths
We are together
Melded by God
The place of suffering
The place chosen to connect
Suffering and pain
With no restraint
Feeling the aloneness
Ever after to pour over
The oil of compassion
Everyone matters. It is so easy to dismiss people as not being worth our notice. I have frequently visited nursing homes with many patients in wheelchairs sitting the hall. I have noticed that most people pass them by without comment. It is as if they don’t exist. How terrible to be relegated to such a position. I have always made it a point to speak to each resident and smile. Most of them are so happy to have someone reach out to them and I receive lots of smiles in return.
I live in the South of the United States and there is a big difference just walking the streets of the town I live in. People routinely smile and speak as they pass on the street. The city has a large Art college with lots of students and it is easy to tell that some of them are startled when passers by speak. You can see them wondering whether to respond. I am not sure that this is routine in all southern cities but it is in many that I have visited. It is nice to acknowledge people and have them respond.
However many people do not speak to those who are obviously homeless. They choose to not acknowledge their existence. So even in a place where people routinely greet another person they still attach a stigma to those less fortunate. I do continue to speak to them and usually get a smile in return.
I can’t imagine what it must be like to feel as if you don’t exist. I know that has happened to many who suffer from mental illness. They certainly know what it feels like to be deliberately ignored.
I hope that we can learn to see each person as a human being deserving of being recognized. I wonder how thing would change if this were so.
I read the daily articles from Richard Rohr who is a wonderful source of inspiration for me. Today he quoted the works of Viktor Frankl who was a respected psychiatrist. Frankl talked about how most of us seek for meaning at some point in our lives. I know this has been true for me.
I have found myself at several points asking “what is it all about?”
Frankl posited three possible sources for meaning: in work, in love and in courage. He talks about the possibility of being able to do work that has some meaning. There are jobs where this seems obvious….doctors, nurses, social workers. (there are lots more) In other jobs meaning may not be so easy to find. I am sure that those of us writing blogs have found some meaning in the response we receive and the assurance that we are helping others. This is very affirming.
The second idea…love…also seems fairly clear. Hopefully our love reaches out to others. It allows us to help others in our everyday lives. Again this allows for meaningful affirmation.
The third idea….courage…means being courageous in difficult times. This certainly includes times of suffering. He says that suffering by itself has little meaning. The meaning comes from how we respond to it. We have the ability to use our suffering to be an example to others. Our response can encourage others who are facing the same kinds of challenges.
It seems to me that many of the bloggers I read can find affirmation that their lives have meaning as so many blogs help others. The community members need to see that this work can bring meaning to their lives. You are important!
Understanding. A word that means so much. I think that each of us longs to be understood. I know that I do. Each of us is an individual. We have our own past, our own values, and our own lives. Many of us have issues with mental health. This makes it harder for people to “get it.”
The other problem is that most people (including us) don’t really listen. If we take the time to stop and really hear what someone is saying it makes all the difference. No one can be understood if they are not listened to.
Maybe that is why we do feel that we are heard on Word Press. If someone is reading what we have written no one is interrupting. When we are talking with someone that may not happen. Too often we spend time deciding what we will say next instead of hearing the other person. Maybe if we really listened then it will encourage someone else to really listen.
Talking is over rated. Listening is the key.
Do you ever feel as if life is out to get you? I have felt that way lately. Superstitions abound about this….things come in threes, if you have too much good then bad is coming. Sometimes it is a self fulfilling prophecy. When a lot of things keep happening you start to feel vulnerable. You are having lots of bad luck. It starts reminding me of an old country/western song that says “if it weren’t for bad luck I’d have no luck at all.”
Ever since this knee surgery process was begun it has felt that way. The big good is that the surgery was successful. It seems that everything else surrounding it has been complicated and stress causing. I feel like “chicken little” running around saying “the sky is falling.”
When Hurricane Michael hit the Florida coast I felt such empathy for the people devastated by it. We only got the outside fringes as it went up the middle of Georgia and other states. We had some wind and rain. Very few areas lost power. Unfortunately, two houses away from us there is a vacant lot and some very dangerous trees. One fell across the power lines and we were without power for about 18 hours. This is nothing compared to what others are going through but it just seemed that the bad luck genie was striking again.
I have been pretty free of IBS issues for a while but of course this kicked the whole thing up again. Some medicine has helped but made me tired and cranky. I just want this to stop. I seem to be complaining when lots of people are so worse off. It makes me feel guilty.
Sometimes it is so hard to control our emotional reaction to events. They hit and our minds and bodies respond before we can slam on the brakes. I can see more work on my part tending my coping skills.
I hate a messy, dirty house but have not felt like cleaning and the mess just makes me feel worse. I need organization and I have to work hard on that right away. I can’t even call someone to give my house a one-time clean as I need to pick up first. It is really bad when what you need to do is clean before someone else can clean.
I know this will all resolve and I am ready for that. I will put on my big girl pants and get to work and I know things will be better. I know that bad luck is not the only kind I have. God will make sure of that.
We all need someone to talk to. We all need someone who actually hears us. It may not be the people we love but we need someone. We were not created to go through life alone.
We are communal people. The earliest humans survived because they lived together. We are no different. One of the worst tortures that a human can go through is to be confined alone in a room for a long period. Most people would lose their minds.
It is sometimes difficult to find that person who will really hear us when we share our lives. Too often people are thinking of themselves and not really listening. Often we are sharing with someone who truly cares but wants to fix everything. Most of the time we don’t expect or even want ideas for fixes. All we really want is to be heard. The trouble is most people don’t understand that.
This is the reason that so many people need to talk with a psychologist or psychiatrist. They should be the ones who really listen. (at least if they are any good) If we don’t have someone to share with then they are certainly a help. At least they shouldn’t be judgmental or share confidences.
In the last year I have also found that this community on Word Press is a good place to share and be heard. We are understood the best when someone else has had similar experiences. In this community there is understanding and affirmation. Sometimes it is hard to find that kind of understanding elsewhere.
Wherever you find it seek someone who will listen and hear you. Even if they can only seek to share your feeling it is a help. If you don’t have anyone to talk with face to face you can find understanding here.