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.

Crazy?

I had an interesting experience last weekend, although not a unique experience. I have a friend and colleague who is a private professional guardian. She is the guardian for several people, and she gets appointed guardian in situations where the Ward does not have anyone to act as guardian.

One of her Wards is a woman I'll Mae. Mae has dementia, and according to my friend, Mae is not a pleasant person. Mae has children, but they don't want anything to do with her.

My friend called me last Saturday, asking a big favor. It seems that Mae was at a local hospital, having been sent there by her nursing home because she injured one of her caregivers. The hospital medicated her with her some pretty strong anti-psychotic medication, deemed her medically stable, and was putting her in the ambulance to return to the nursing home. The nursing home was refusing to allow Mae to come back without a private sitter in place, for the protection of their staff. And my friend was out of state at a wedding.

For those who are my facebook friends, that's why I spent Sunday afternoon at the psychiatric emergency room at John Peter Smith Hospital.

My friend was able to find a sitter who could stay with Mae Saturday, and she did return to the nursing home. My friend also engaged a private duty service to take over on Sunday, but by Sunday morning Mae had injured the Saturday sitter, and had continued to hurt nursing home staff. The nursing home was done, and insisted that she leave.

Again, long distance and over the phone, my friend arranged for law enforcement and emergency medical responders to take Mae to the psych. ER at JPS. She called me when she could not locate Mae anywhere in the hospital system.

We eventually found Mae in the regular ER, because she had complained of chest pain while on the way to the hospital. She was absolutely calm and non-threatening when I found her. She was mean, but not violent. I stayed with her until we got her admitted to the psychiatric unit.

My friend cut her trip short to come back to Fort Worth for a couple of days to get Mae situated in an Alzheimer's facility that I helped her locate, and she's leaving again today to finish the rest of her vacation. So I might yet be called out again to help with Mae.

Some of you reading this may identify with this situation. Our medical system has no good way to deal with those people with dementia who also have behavior issues, including violent and aggressive behaviors. There is something inherently wrong with having police take a frail, 76 year old woman to be involuntarily committed to a psychiatric unit. Regular hospitals are unable to provide the medication management required in a situation like this, and a guardian has no legal authority to admit a Ward to a psychiatric hospital. The nursing home clearly had no idea how to manage the behavior, and Alzheimer's units like the one Mae went to yesterday, where they do know how to manage the behavior are incredibly expensive (over $5000 a month). Mae is lucky she can afford to live there.

I don't know what the answer is, but we are going to have to find a better solution, because the numbers of people with dementia will only grow as the population continues to grow older. I'd love to hear any ideas.

Wandering through the Wilderness of Dementia

A good article in the New York Times today, More With Dementia Wander From Home. I have known a few families who have been extremely proactive in dealing with wandering, placing door locks up high, making sure the person with dementia is registered with the Safe Return program, even placing alarms and cameras around the house.

More often, however, families never get around to doing anything. The burden of caregiving, especially for people with dementia, can be so great, it's impossible to think about more than the current crisis.

But we all need to be aware of this danger. When we have children, we spend a lot of time and effort baby-proofing our homes; now we have to worry about dementia-proofing our parents' homes.

Dementia vs. Delirium

I thought it might be a good idea to review dementia and delirium (it helps that it's something I'll be addressing in class soon).

If you don't remember what dementia is (no pun intended), it is a syndrome that includes many cognitive deficits that include memory problems. Most people are familiar with Alzheimer's type dementia, but dementia can also be caused by vascular problems, Parkinson's disease, substance abuse, as well as other causes.

While the different types of dementia do look a little different from each other, in general there is a gradual decline in memory and thinking ability.

Delirium, on the other hand, is an acute, or sudden onset of change in consciousness that can't be explained by a pre-existing dementia. Delirium can change or fluctuate over the course of a day, and can include changes in sleep patterns.

Even people with dementia can experience delirium; if a person with dementia demonstrates a rapid change in behavior or memory, delirium should be ruled out.

So what can cause delirium? There are several medical conditions that can cause delirium, including urinary tract infections, pneumonia, or even a mild heart attack. Medications can also cause symptoms of delirium.

Any time you see a sudden change in mental status of an older adult, be sure to consider some of the causes of delirium, and seek medical treatment.