I Know a Hospital is Not a Hotel

Wow, it's been a while since I've posted; sorry to those of you who do look at my little blog.

I just read this article, and I have to say I was a little peeved that I couldn't comment on it. A little background:

The article is written by a nurse, and she is talking about the trend of hospitals to seek customer satisfaction input and how now the Centers for Medicare and Medicaid Services (CMS) will be basing reimbursement on the same patient satisfaction indicators.

What I have to say in response is that I know the hospital is not a hotel. Some of you may know that my mom has been in the hospital, three different hospitals, actually, over the past 3 weeks. I can tell you without a doubt that my "customer satisfaction" as a daughter has  changed sometimes by the minute. I can parse out the fact that my mother feels lousy, and some of the things they have to do make her feel even worse in the short term.

What I know is that the way each procedure, whether it's walking in physical therapy or inserting a PICC line is enhanced or made worse by the attitude of the medical professional. I have witnessed some truly awful nursing and doctoring, and let me tell you, when it's your mother, there is no satisfaction. And sometimes five minutes later someone with more care and compassion comes in and satisfaction goes up.

Having worked in hospitals, where I had to give people those satisfaction surveys, the hope is that people had more of the good experiences. The author of the New York Times editorial thinks that the person who gets the bad news that they have terminal cancer will somehow be less satisfied with the hospital.

My position is that the person who gets that bad news is going to be influenced positively or negatively by the way they were told. I have seen people get horrible news, but news that is delivered with care and compassion. The same people go on to report a positive hospital experience, because the doctor and nurses and social workers took the time to deliver the news in a humane and compassionate manner.  Let that be the standard.

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.

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.

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.

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.