New Guidelines for Alzheimer's

It was reported yesterday that there are new guidelines for Alzheimer's disease. The first article I read was in the New York Times, and I wrote about the guidelines on Katten & Benson's blog.


The most important part of the story, however, is lost in a short paragraph in the middle of the story. It was reported that Congress has introduced a bill that will create specific cost codes for Alzheimer's disease for Medicare. These codes would allow doctors to be paid for having discussions with family members and caregivers. This is significant, because as the article states, "keeping family members well-informed can result in better planning and care."


It is amazing to me that it has taken this long for this to be recognized. In the social work class I teach, we talked last week about setting goals. Professionals are really good at setting goals--our goals. We often forget that we need to be setting goals that are consistent with what our client/patient wants. This becomes difficult with that person with dementia, especially when they want to stay at home alone, when clearly that is no longer an option. I told my students that when working with dementia clients, the "client" at some point changes from the person with dementia, to the family/caregiver. At that point, we must then revise the goals. We still must address the person with dementia's goals, but the family/caregiver's goals often become primary.


I think allowing doctors to have these discussions with the family are a step in the right direction.

It Comes in Threes

They say death comes in threes, and it certainly has yesterday and today.

Last night I learned that a client I have worked with for about 2-1/2 years died. This is definitely the worst part of my job--I get close to clients and their families, and then I lose them. Whenever I saw this client, he always, always asked me where I was traveling to next. We would spend a good part of any visit talking about where we had traveled, and now I won't have that to share with him. But I do have those happy memories, and that is what I cherish most about my job.

Today I learned that another older adult, someone in the community I have known for many years, died yesterday, too. I wasn't all that close to her, but she is someone I learned a lot from about aging and working with older adults. As her health failed, I saw her less frequently in a professional capacity, but more often as helper. I even recently helped her visit assisted living communities, and talked with her about her possible choices. Those of us who have worked in the aging community in Tarrant County have lost a friend and mentor.

The third death I learned about was through a facebook post from my brother, about a high school classmate. This person was a year behind me in school, but we were fairly well acquainted, although we had not seen each other since school. It's just always upsetting to learn about a contemporary's death--it reminds us of our mortality.

I hope that is it for awhile, but I guess there are at least a couple of funerals in my immediate future.

When Mom or Dad Doesn't Know You Anymore

One of the hardest things about dementia is when Mom or Dad doesn't know you anymore. It doesn't matter that you've read The 36-Hour Day, or go to the local Alzheimer's symposium every year; it's just hard.

My Dad didn't have Alzheimer's, but at the end of his life, in the advanced stages of pancreatic cancer, he did not recognize me the last time I saw him alive. There is just no way to prepare for the first time that happens.

I just found a brand-new blog, My Father Doesn't Know Me Anymore, that addresses the many complex feelings that come with caring for a loved one with dementia. Finding the blog was accidental--I was looking at Katten & Benson's website statistics on Wordpress, and saw that we had been linked to on this blog. I followed the link out of curiosity, not sure what I'd find.

It turns out that the author is a client's daughter. I have worked with her and her father for about three years. As Lucy says in the blog, we have been through some ups and downs, but what relationship, even a professional one, doesn't have ups and downs? Lucy says some nice things about me and Steve Katten, the attorney I work for, but what I appreciate most about Lucy's blog is her honesty. She tells you what it is like to be a caregiver--the good, the bad, the ugly and the beautiful.

Lucy and her sister are some of the fiercest advocates for a parent I have ever met, and they are truly inspiring. I plan to read Lucy's blog on a regular basis, and I hope you do, too.

The Future of Medicaid

I have been getting calls and emails from clients recently worried about Medicaid, and whether they need to start making other plans for their loved ones currently in nursing homes. I am at a loss about what to tell them.

On the one hand, it's hard for me to believe that the Legislature would actually make these cuts, and yet yesterday the Texas House of Representatives passed a draconian budget, including significant cuts to education and Medicaid. Texas nursing homes already lose about $12 per day for each Medicaid resident; cutting Medicaid payments would only increase that loss, and put many nursing homes out of business.

I am afraid there will be some serious cuts, and I fear that some nursing homes will close. I wonder how many legislators have family members on Medicaid in nursing homes. My guess is not too many. It's too easy to sit in a nice office in Austin and make life and death decisions, and make no mistake, people will die if these cuts go through.

I know we have to make some tough choices, and I know we have to live within our means, but I truly think many of the proposed budget cuts are just cutting off our noses to spite our faces. More people will go to the hospital, more people will be depressed, nursing home employees will lose their jobs, family members will lose their jobs. Where is the savings in that?

I'll appreciate any ideas you might have; better yet, send them to your legislator.

Foreign Territory

It's been four years since I quit working in hospitals. I'm still pretty comfortable in hospitals, but it's easier now for me to see how foreign they are to everyone else. Even if you're just going to an outpatient surgery center for a minor procedure, like my Mom did this week, it can be a pretty overwhelming experience.

Mom was supposed to be at the center Monday morning at 9:00 for a 10:30 procedure. The phone rang at 7:40, and it was the center asking if we could be there at 8:30. Mom was still in the shower, but I told them, yes, we can be there close to 8:30. I'm thinking perhaps we'll be out sooner.

We get there at 8:35. Mom gets checked in, and we go to the waiting room. We wait. People get called back. We wait some more. More people get called back. We wait some more. At least the TV has the Today Show on, and not Fox News. And the volume is low, so it's easier to ignore. Finally, around 10:00 they call Mom back to prep for surgery. They let me go back about 20 minutes later.

In the room, it's cold. I wore jeans and a sleeved shirt, because I knew it would be cold (unlike the person I saw in a sleeveless velvet contraption over running pants, with a yellow mini skirt). I was still cold, though. Mom was cold too, and it seems the nurse didn't help Mom get ready, because the gripper socks they supplied were not on her feet, but on the table.

We wait another hour. The anesthesiologist comes in and asks questions. The surgical resident comes in and asks the same questions. The nurse anesthetist comes in and seems to be the only one who really knows what is going on. The surgeon himself comes in. She finally goes back for the procedure at 11:30. I wait in the waiting room some more. So much for being done sooner.

The procedure takes less than an hour,  and she was not fully anesthetized for the procedure, so she's mostly awake when I'm allowed back. She's still kind of groggy, and not really understanding that she can't leave until her blood pressure and heart rate come down. The nurse never really tells me that's what is going on. I just know what to listen for, and I can mostly read the monitors. Finally, after about another 40 minutes, two different nurses adjusting the blood pressure cuff numerous times, there's a reading low enough. But the nurse is out at the desk. I know to go get her, and she literally comes running to see the reading and start turning all the monitors off. I wonder how many family members would just sit there and not get the nurse.

Anyway, we got home, and Mom is doing fine. I realize that I really don't like being in a hospital where I don't know anyone. It's easy to be spoiled when you get all kinds of professional courtesy. And I keep wondering about all the families I work with, and how helpless they feel, because they don't anyone, and they don't know hospitals work. And hospitals don't do much to make it easy.

Reverse Mortgages

I sometimes have people ask my opinion about reverse mortgages, and I have to tell you, I'm not a fan. I think the number of people for whom a reverse mortgage is a truly good idea is extremely small, and for too many people I think they are downright dangerous products. 

Now, in the spirit of full disclosure, I got a great deal on my house because it had a reverse mortgage, and the heirs were desperate to sell quickly so they could pay the reverse mortgage off, so I guess I would have to say a reverse mortgage was good for me, it just wasn't MY reverse mortgage.

Anyway, I bring all this up because the AARP has sued HUD over a rule change that is putting a small number of reverse mortgage holders under the threat of foreclosure. The New York Times has an excellent article on the story, which includes some great links of it's own to other sources of information on reverse mortgages. 

I encourage everyone to read this article, and follow some of the links included, to learn more about reverse mortgages.

One Person's Trash is Another Person's Treasure

Some of you may know that I've done some presentations on hoarding. I've recently been reading the book Stuff: Compulsive Hoarding and the Meaning of Things by Randy O. Frost and Gail Steketee. Frost and Steketee are the gurus of hoarding, and I think Randy Frost is a consultant on at least one of the popular hoarding shows on TV.

Any time I have done this presentation it seems that most people in the audience know someone they suspect is a hoarder, are related to someone who hoards, or they worry that they themselves are hoarders. Frost and Steketee report that between 2-5% of the population, or anywhere from 6-15 million people hoard. That's a lot of people with a lot of stuff.

I'm only part of the way through the book, but I'll share some tidbits:

• Hoarding may not be as closely associated with Obsessive Compulsive Disorder (OCD) as once thought. Rather, it seems to be more characteristic of an Impulse Control Disorder (ICD), like kleptomania or compulsive gambling.
• Hoarders often place high value on things that appear to be junk to the rest of us. They have difficulty distinguishing between things with true value and things that are trash.
• Perfectionism appears to play a major role in hoarding.
• Some studies have indicated a high correlation between compulsive gambling and hoarding.
• There also seems to be a connection between possessions and a sense of security, with some people  starting to hoard after suffering a severe trauma.

There's no doubt that this is a complex and difficult issue to deal with. I will keep you posted as I work my through this book.