Think Healthcare Reform is "Too Expensive"?

Think again.

Get the Facts on Healthcare Reform

Note to spammers who intend to leave vicious comments about the evils of Socialism and "Obamacare": I moderate all my blogs. Don't waste your time here.

Healthcare reform is THE most important thing on the national agenda right now. I burnt out on my last job working with caregivers of people with Alzheimer's and other dementing illnesses NOT because of the sadness of illness and death. It was the stories of people going into bankruptcy and facing financial devastation in addition to the heartbreak they were going through that got to me. Now the job I had at that agency might not even exist anymore. The California legislature just cut that agency's funding by 73%! Now even the inadequate level of care we were providing there won't be available. We need reform NOW!!

Click this link to learn the facts, share it with as many people as possible, and stop the promoting of hate and misinformation.

It's Time for Healthcare Reform!

In my email today I received an email from an organization called "Organizing for Healthcare" that included the video on this blog. I know not everyone who comes across this blog is an Obama supporter but organizing to defeat healthcare reform in the name of "crushing" Obama is as low as it goes.

I used to work in the healthcare field as a family consultant for the Alzheimer's Association and later for a nonprofit caregiver resource center in Santa Cruz, CA. By the time I left that line of work I couldn't stand listening to the stories anymore. . . but what I couldn't handle is NOT what you might think. I could listen and support people who were seeing their family members and friends deteriorate, lose their minds, and die. I could handle the disease and death. What I hated about this work was the devastating effect taking care of their loved ones had on these people because of the horrible lack of financial and hands-on support we allow to be acceptable in this country. Elderly people were doing 24-hour a day caregiving without back-up! You can't do that as a young person. There comes a time when you NEED to sleep, eat and do basic tasks of everyday living. You can't do this kind of caregiving without support!

And paying for help is more than most people could stand. People were in my office every day begging me to tell them how to keep from going bankrupt and I didn't know. That's what got to me. The utter disregard for human value and human life.

Meanwhile the drug companies who supply the pharmaceuticals their family members were talked into thinking they needed at several hundreds of dollars a month are getting fat. The pharmaceutical industry is one of the top 2-3 most profitable industries in the world, reporting profits of 100s of billions of dollars per year. Profit, by the way, is what is left AFTER a company pays for the research and development the drug companies claim they need to be paid so much for. Don't be fooled by the games they have been playing. Record profits were reported after Bush signed the most recent Medicare drug benefit "reform" bill. That's how insane our country has been—steal from the poor to fatten the already unbelievably rich! This is worse than insane—it's criminal!

It's also a big piece of what has been bringing the economy to its knees. Big multinationals allowed to run amok, taking everything they can get without regard to anyone else. 100s of billions of dollars of profit—every year—while people we care about are losing their homes and having to make the choice between paying for medications and having enough to eat.

It's time we all stood up and did something about it.

Age Related Changes and Memory Loss

When I was a Family Caregiving Consultant people who had not lived with their elderly relatives in years would come to me in a panic about behavior that smacked of dementia. They had a family gathering at the house, came for a more extended visit, or even needed to move in together for a particular period of time, and what they saw frightened them.

Now my partner Paul and I are temporarily living with his elderly parents. Neither one has Alzheimer's Disease. Both have been getting by but what we're seeing is throwing my earlier client contacts into a different light.

I remember hearing: "My grandmother stays in her bathrobe almost all day long!"

Yep. Occasionally, I do, too, on my day off when there's no one around to see me do it. If grandma has been living on her own and is "on her day off" all the time, why shouldn't she do what makes her feel comfy and cozy?

"Mom takes hours to get dressed or make dinner!"

Yep, why not? There's nothing to hurry for.

Now, I'm not going to say we haven't seen behavior that completely freaks us out. One of Paul's parents has judgment lapses that would get her declared "incompetent" in an instant if this wasn't a lifelong pattern of decision-making. "She's always been like that!" I hear again and again. "It just happens more now. She doesn't care about those things and never has!"

In context, it's just a progression of the same old thing. Jumping in fresh or after a long absence, the progression make no sense. It's crazy! It's "dementia"! We have to do something!

And maybe you will have to intervene sooner or later. After all, there has been an increase in these behaviors. And there is at least age-related memory loss.

But trust me, the parents won't feel that way. They've been compensating for these changes for a decade or more. "We've gotten this far," they think. "What the hell are you so worried about? Big deal, if I leave a pan on the stove. Haven't you ever done that? Big deal, if I go to a party and forget my teeth! I've done it before! And yeah, I even bounced a check or two this month. Stop snooping into my business. (You have no idea how many times I did that when I was younger, too!)"

Most people's parents handle their aging with an acceptance and flexibility their children can't imagine. Things change gradually, they adjust, they make do, they adjust some more. But then there's one last adjustment and things fall apart. That's when the kids can step in. It's nice if you can plan ahead for that. It's even better if the parents will help you help them before things fall apart.

But they have to be willing to allow you to be involved. Before then, it's a terrible interference into a life that's being independently, and even somewhat gracefully, lived.

Conflict Resolution and Family Caregiving

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

----

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

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

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

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

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

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

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

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

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

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

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

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

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

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