Wednesday, August 31, 2011

Tell Me That Story

I had the pleasure of being a guest at a support group last night at a local assisted living community here in Fort Worth. I was the guest speaker, and I did a brief presentation on elderspeak, the topic of the last blog post.

We had a good discussion, but as most good discussions do, it took a turn, and we ended up talking about other things. One of the people in the group brought up an issue with her mother who has dementia. It seems that her mother keeps talking about "going home".

Going home can mean different things to people with dementia, and it can mean different things at different stages of dementia. In this case, this lady wants to go home to the state where she spent most of her life. Her daughter reported that she was considering taking her mom on the trip home, but was worried that the trip would be hard, because her mom is frail and in poor health. Before I could say anything, one of the other group members exclaimed "You can't take her home, that wouldn't be safe! Besides, you'd be doing it for yourself, not for her."

Good points, and certainly more meaningful coming from the other group member, who is dealing with similar issues. But what I was able to contribute to this person is the idea of redirecting her mother. It seems that her mother equates "home" with a time in her life when she was younger, healthier, and happier. I suggested that the daughter might want to talk to her mom about not being able to go home now, but let's talk about home. The daughter can ask her mom to tell her stories about home, and they can look through family photos of home they can reminisce about those happier times. The daughter can validate her mother's feelings that home was a happy place full of good memories. As mom begins to forget those longer term memories, things can shift, and the daughter can tell the stories.

Validating and redirecting is not hard to do, but it does take patience and empathy. When you think how scary it must be to not remember people or places, it can be a comfort when someone takes the time to listen to the stories you do remember, and who cares enough to remind you of the things you've forgotten.

Sunday, June 12, 2011

Hey, Honey, How are We Doing Today?

I know I've written about the topic of elderspeak before, but I think it's worth coming back to. For those of you who aren't familiar with the term, elderspeak is a way of speaking that many use when talking to older adults, especially older adults with dementia. Some characteristics include simple words, short sentences, using a high-pitched sing-song voice, the use of inappropriate endearments, and the use of "we", and it's not the royal "we". If you're having a hard time understanding what elderspeak sounds like, think about the way most of us talk to infants or pets.

Negative reactions to elderspeak include pushing, pulling, refusing to do tasks, grabbing at people or objects, screaming and yelling or crying. In research studies I've seen, people exhibit these behaviors at much higher rates in response to elderspeak when compared with silence, or interacting in a normal fashion.

Sadly, the message about elderspeak is one that a lot of people just aren't interested in. I was recently asked to do an in-service on the topic at an assisted living community. You would think that the people working directly with residents with dementia would want to learn any tips that might make their jobs easier, but you would think wrong. I had a pretty bored and uninterested audience, and no one owned up to feeling offended if someone talked to them like they were 5 months old.

Monday, April 25, 2011

There Ought To Be a Holiday

I may have mentioned that I'm teaching a social work class on aging at UTA again this semester, and I've been thinking about tonight's lecture all week. The topic is caregiving. I don't know that I have much new to say about caregivers:

It's a hard job. You have to take care of yourself. If you get sick, you're no good to the care receiver. Take time for yourself.

As professionals, we all know what to say, and most caregivers have heard it over and over and over.

But here's a new message, something we don't talk about as much: If you know a caregiver, be intentional and do something FOR them.

Sometimes what that caregiver needs is a phone call, so they know someone is thinking about them. Sometimes that caregiver needs someone to come clean the house, without having to ask for it. Sometimes the caregiver needs someone to come take care of the care receiver for 2 hours so they can go shop without worrying. And what I know about so many caregivers is that they have a very difficult time asking for help. They feel like they are failing if they admit that they can't do it all.

So I challenge everyone who knows a caregiver to declare Caregiver's Day. It doesn't have to be to today, but it could be once a week or once a month. Do something for that caregiver to let them know they are not forgotten and they are not alone.

Wednesday, April 20, 2011

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.

Monday, April 18, 2011

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.

Thursday, April 14, 2011

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.

Monday, April 4, 2011

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.

Wednesday, March 23, 2011

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.

Saturday, March 12, 2011

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.

Wednesday, March 9, 2011

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.

Wednesday, January 26, 2011

A New Form of Assault

Thanks to Robert Kraft (one of those facebook "friends" I don't actually know) for bringing this to my attention.

The New York Times has an excellent blog called the New Old Age. I don't get around to reading it often enough, but this recent entry is very thought provoking. The blogger writes about a recent study published in the Archives of Internal Medicine (the full article is only available by subscription). The study found that people with late dementia are frequently hospitalized too often, with medical symptoms and conditions that could have been treated in their nursing homes.

The study only looked at nursing home residents, and it found that over an 18 month period, 30% were hospitalized. Dr. Susan Mitchell, one of the researchers estimated that fully 75% of those hospitalizations could have been avoided.

So what's the problem? Dr. Susan Mitchell's comment: “Being in an emergency room where people are taking blood and putting in IVs in this crazy, noisy setting — it’s been described as an ‘assault,’ and I concur." If you don't know someone with late-stage dementia, allow me to describe someone I know.

This gentleman has been in an Alzheimer's care home for the last two years. He still recognizes me as someone he knows, but he has no idea how or why. He thinks he's known me for a very long time, but we have only known each other for a few years. He does not always remember his children's names. He is not able to carry on a conversation about anything, although he does still talk. It is reported that he eats a lot, but in the past year he has lost at least 30 pounds, and this over six foot tall man is wearing  size small shirts.

Thankfully his family has him on hospice, so there won't be any unnecessary trips to the hospital, but how do you help someone in this state understand what is going on around them? How do you communicate to them what the IV is for? How do you keep this person calm without drugging them? And for what end? When we, as health care professionals or family members insist on sending someone like this to the ER to be treated for pneumonia, are we doing it for the patient, or are we doing it for us, whether it's to cover our backsides (in the case of a health care professional), or because we aren't ready to let a loved one go?

It does seem extreme in some ways to consider this kind of treatment assault, but once you have seen a frail, older adult, who doesn't know or understand what is going on, who only wants to be left in peace, being forced to stay in the hospital for aggressive treatment, you might agree that it is an assault. I happened to see a former colleague earlier this week, and when we worked together in a hospital he had one of these horrible situations. The patient was on a ventilator, he had multiple infections, he had pressure sores, he was on dialysis, and he was like this for MONTHS. His children would not let him go. It was so bad that there were nurses who refused to take care of him, because they felt it was assault. When his family finally agreed to take him off all the machines, he died before they got everything turned off.

We have to start talking about this. We are all going to die--that is one thing I am sure of.

Friday, January 21, 2011

New on the Alzheimer's Front

According to a story in the New York Times, the FDA is getting closer to approving a scan that will help diagnose Alzheimer's disease. Right now, we can't definitively diagnose Alzheimer's disease until death, when an autopsy can be done. What a lot of people don't realize is that not only are there many types of dementia, but other treatable medical conditions mimic Alzheimer's.

Other types of dementia are related to vascular problems, such as having several small strokes, or Parkinson's disease. In these cases it might be possible to better treat the cause, especially with vascular dementia, to slow or stop the decline. Depression, which is very treatable, can also mimic the memory loss of Alzheimer's. Delirium is another condition that can look like Alzheimer's. Delirium is frequently caused by an infection, and infections are often successfully treated.

This is good news, because it gives doctors the potential to definitively rule Alzheimer's in or out, allowing them to properly focus their treatment. The article says full approval is still several months away, but it's certainly a great stride forward.

Wednesday, January 19, 2011

Growing Older But Not Up

Thanks to Monica, one of the attorneys here at Katten & Benson, for sharing this great article about the oldest African American, Mississippi Winn. Miss Winn died recently at the young age of 113. Another amazing fact about her is that she was one of two known people left whose parents were likely born into slavery. Her niece said that even though she was 113, she thought she was young. Her family thinks one reason she lived as long as she did was because she just handled things as they came, of course, no husband or children might have been a factor as well.

I have my own Miss Winn story. Many years ago, when I still worked in the hospital, one of my patients was a nun, Sister Winifred. At the time that I knew her, she was 101. She was mostly deaf, and didn't see well, and she used to tell us that she figured God decided she had seen and heard enough.

She had been a teacher for many, many years, despite the fact that she did not really want to be a teacher. But she became a teacher anyway, because that is what the Church needed her to do, so she did it. Despite this, she had middle-aged, former students visit her in the hospital. I suspect teaching truly had been her calling, because she had clearly been beloved by many of her students.

The day I told her she was going to be discharged and would be able to return to her convent, she took my hand and said this to me: "I will pray for you every day for the rest of my life. I know that won't be long, but I will pray for you every day". She ended up living another three years. I never doubted that I was in her prayers.

Knowing her for even a short time was a gift I will always cherish. I hope all of you have the opportunity to be touched by a remarkable older adult.