Alzheimer’s Disease – Catastrophic Reactions

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Guest:  Fran Emerson – Alzheimer’s Association

Host:  Sally Smith:  Author/Resource literature on age-related disease and healthy aging


Sally Smith:  Welcome to Age to Age.  I’m Sally Smith.  Let’s talk.  Fran Emerson is with us today.  Fran is in charge of the Alzheimer’s Association here in the Charleston area, which covers, I think, seven districts, and has had a long career, and great experience, dealing with Alzheimer’s.  She has talked to us a lot about behaviors and ways of dealing, happily, with these behaviors so that the caregiver is not as stressed out as they might otherwise be. 


We’ve talked about many behaviors, wandering, hoarding, different behaviors, but the one that’s probably the most difficult is what, I believe, you call a catastrophic behavior, a catastrophic reaction.  Many of these behaviors, such as rummaging or wandering, who cares, you know, we can kind of deal with those.  But with something that’s a catastrophic reaction, where you need action, and understanding, I believe you’ve said that you need to understand the disease, and you need to understand the patient.  What is a catastrophic reaction, and how might that present itself?


Fran Emerson:  A catastrophic reaction is where an individual will react to a circumstance in a very aggressive or violent way, and a sudden way.  Someone who is apparently quite calm and okay can suddenly lash out, either verbally or physically, or both, with a caregiver or family member.  And, one of the things we’ve got to understand about catastrophic reactions is that there are ingredients to that situation.  We’ve got to look at the underlying reason as to why someone might be a prime candidate to explode in this way.  If you take some underlying reasons, like fear, or fatigue, maybe someone with a dementia is in an environment they’re afraid of, or there are people around them that they don’t recognize.  They’re outside of their comfort zone, and they’re afraid, and they know that they can’t work things out, so that makes them anxious and afraid.


Then you take a circumstance that may occur, a trigger, quite an innocent trigger, Maybe a person approaches that individual and makes a request or tries to get them to do something, hey, come over here, Mrs. So-and-so, it’s time to have your dinner, or lunch, and gently takes their arm and tries to steer them toward the dining room, for example, and that person suddenly decides that they don’t want to do that.  Or, they will resist, or try to walk in the other direction, and the caregiver, or staff member, may go after that person and try to steer them back.  Well, if someone doesn’t want to do something, and they can’t communicate, what’s the first thing they’re going to do?  You know, they may likely hit, and have a reaction, or shout.  So, you’ve got the fatigue, the tiredness, or the fear, or any underlying situation. 


Sally Smith:  Frustration, you mean?


Fran Emerson:  Frustration.  They can’t work things out.  And then someone is trying to make them do something they don’t want to do.  And, if that person persists, then you’re going to get a catastrophic reaction.


Sally Smith:  So, really, I love the way you simplified it by saying that you have the fuel, which is the situation, the fear, the anger, the pain, the whatever, underlying cause that we don’t really know.


Fran Emerson:  Exactly.


Sally Smith:  They may look just the same on the outside but may be, mentally, in a completely more volatile spot, and then something comes along and triggers it.  You mentioned, which I thought was so interesting, that seventy-five percent of combative behavior is the result of touch and invasion of personal space. 


Fran Emerson:  Yes.


Sally Smith:  I thought that was fascinating because some of the causes, you said, were light and color, and noise, and different things can trigger it.  But it can be this invasion.  In your seminar, you talk about how to approach someone in way that, maybe, doesn’t make them feel this invasion of personal space.  Would you describe what you see as the ideal way of approaching someone that you think may be a little frustrated or upset?


Fran Emerson:  I think, first of all, if someone is having a real reaction, and they’re hitting, the best thing to do is walk away, of course, and let that situation diffuse itself.  But if you have the opportunity to try to calm that person down, first of all, always approach someone from the side; never confront them face on.  That’s very confrontational when you walk up to someone.  You’re approaching their personal space.


Sally Smith:  Plus, they may not be able to see well.  As we said earlier, it may take them by surprise somehow. 


Fran Emerson:  That’s right.  So, approach them from the side and speak slowly, calmly and reassuringly.  Call the person by name.  Tell them who you are, and repeat yourself; there’s no harm in repeating yourself when you’re interacting with a person with dementia, and try to diffuse that situation.  Keep talking to the person in a natural way.  There’s a lot of fear associated with this illness.  People are afraid that they’re not going to do the right thing, say the right things. 


Sally Smith:  You mean, as a caregiver?


Fran Emerson:  As a caregiver, yes.  If you’re calm and your body language is positive and gentle, and your facial expressions are reassuring and kind, then that visual communication can really reassure a person who is going through a very anxious or catastrophic reaction.  Get on the same level as them.  If they’re sitting down, you know, get down on one knee and get on the same level.  Don’t tower over someone or get too close to their face.


Sally Smith:  Well, I’m wondering, too, one of the catastrophic reactions you talked about, rapid mood change, agitation, anger, maybe hitting, exaggerated behaviors, but also, one catastrophic reaction was uncontrollable crying.  Do you just kind of let them cry a minute and then kind of come back from the side, like you say?  It seems like you’d want so much to fix uncontrollable crying quickly.  But, maybe, what’s causing them to cry uncontrollably is that you’re in their space, they think you’re asking them to do something that they’re unable to, and they’re frustrated and angry, and all that.


Fran Emerson:  Right.


Sally Smith:  I mean, do you just have to, sometimes, say, okay, they’re going to cry?


Fran Emerson:  Yeah.  I mean, as a caregiver, we always want to fix things, don’t we?


Sally Smith:  Yes.


Fran Emerson:  And, you know, there are a lot of things we can’t fix.  And, crying, I’ve talked about this with family members, crying is actually good for you.  You know, crying is not bad.  Crying is an emotional demonstration of an emotional feeling.


Sally Smith:  And a release, actually.


Fran Emerson:  It’s a release.  And, you know, you release certain chemicals through your tears.  It’s a very good cleansing process, physically and emotionally.  So the first thing we’ve got to do is understand that our first reaction is to want to stop that person’s crying, when, in fact, they may be going through quite a pleasurable emotional experience.  They’re feeling some anxiety.  They may be having some memories that are emotional; they’re responses to be tearful.


Sally Smith:  Maybe even happy?


Fran Emerson:  Maybe even happy.  Now, I’m not saying that all crying is like that.  If crying continues for a long period of time, and it’s associated with anxious behavior, then maybe there are some medication interventions that may be necessary.  I always tell caregivers to try to look at non-medication interventions.  You know, try to get the person to talk about it, if they want to, or take a photograph to them, an object, or anything that may trigger some kind of response or recovery from that emotional process. 


Sally Smith:  One of the things that you said earlier that I want to ask you to say again, for everybody listening, is this wonderful attitude you have about this potential, new, relationship with a person, on new ground.  You know, so often, my mother, for instance, was turning into a child and I felt this great sense of loss.  But, actually, it’s like that wonderful poem where the ship is leaving port, and you’re seeing it disappear, but it’s actually arriving at another port.  So it’s not that it’s gone, it’s just changed anew, and needs rediscovery.  In a sense, is that how you see it?                


Fran Emerson:  I see it as there being a potentially good quality of life and experience after the diagnosis.  Now, my mother may forget who I am when I come to visit, but she can sure talk about her young children.  You’re going to hear stuff about yourself that you’ve never heard before.  This person is going to talk about her children as if you’re not there, because you’re someone else now.  You’re too old to be their child.


Sally Emerson:  You get to find out the real truth.


Fran Emerson:  Yeah.  So, you’re interacting with a new person, in a new relationship.  Now, how cool can that be? 


Sally Smith:  It’s pretty cool.


Fran Emerson:  So I always try to give caregivers the opportunity to get something positive out of this new relationship.  I’m not saying it’s all easy.  It’s not.  It’s a complex, difficult, overwhelming journey.  I had someone in my office who told me, I’m looking after my mother and she thinks I’m her husband.  He, of course, looks like his father did when they were married.  And, you know, think of all the conversations you could have surrounding that.


Sally Smith:  You know, one thing I love about the way you approach this is, in a way, you’re teaching us, through these interviews and the knowledge you’ve shared with us, how to remove a lot of the stressful, gotta fix it, attitudes from daily care so that you accept that and move on.  You can’t fix it.  So you take what’s there.  It’s attitude.  It’s in your head.  And that’s so positive.  It’s right there in front of us, but it’s so hard to do.  Does it just take time?


Fran Emerson:  It takes time.  I think it takes acceptance too, and that’s the tough bit.  There’s a bridge to cross between our world and the world of someone with Alzheimer’s disease.  If you can think about people who have the experience of someone in their family with Alzheimer’s disease, whether that’s a mother, a spouse, or any other relative, they have the privilege of having a piece of their life’s tapestry present that some people will never experience.  Someone told me once, when I was facilitating a support group, how unfair she thought it was, at the beginning, how unfair that my husband should get this, and my mother-in-law as well, and I’m the caregiver.  She was very stressed and bitter, and had sense of unfairness about it.  She came to our support group for some time, and one day she said she’d changed.  She said that she felt so privileged to have the opportunity to care for two people who were dearest to her, and that otherwise, she may never have had that experience.


Sally Smith:  Wow.  That is so powerful.  It’s also a way that you give up those days and sadness.  And I’ve seen people so wrenched that they, really, have been guilt-ridden.  Even though they’re doing a lot of things, they’re guilt-ridden.  They’re basically unhappy.  They’re overwhelmed.  They’re depressed themselves.


Fran Emerson:  Yes.


Sally Smith:  All this stuff.  In a way, you know, they have abdicated their happiness.  And what I think they don’t see is a choice; it may be a hard choice.  And you may have to come to it, as you say, from your friend, crossing the bridge.  It may not be that one day you wake up and say, oh, great, Mom’s got Alzheimer’s, you know, we’re going to have a great time; it’s going to be super.  I think one thing that’s a recurrent theme in all of this is that all of life is ultimately your own choice, for the person who still has the capacity to make the choice; the demented person cannot make the choice.  As you say, they’re like an infant.  There’s no bad or good, or right and wrong.  But with the caregiver, there is a choice.  And you do make a choice of whether or not you walk away from the rest of your relationships in the world and let them fall apart because you’re busy caregiving.


There are so many choices.  It comes down to a lot of inner self-confidence, a lot of strength, a lot of spiritual connectedness, and each person has to find their own way.  But I think it’s a powerful tool to realize that, in fact, at the end of the day, as bad as it may seem, and as hard as the cards you were dealt are to play with, it’s still a choice. 


Fran Emerson:  Yes.


Sally Smith:  In Man’s Search for Meaning, the author wrote about that.  Even in a prisoner-of-war camp, he had a choice about attitude.


Fran Emerson:  Right.


Sally Smith:  You’ve said that in a lot of different ways throughout.  I think it’s so beautiful.  Thank you very much.  Alright, well, thanks to all our listeners too for joining us.  We welcome you suggestions and comments.  This is Sally Smith, Age to Age, saying good-bye and wishing you courage and joy on your journey.  We are all connected.   


If you enjoy listening to Sally Smith, you can buy her book, The Circle.  It’s the story of how she personally responded to her mother’s journey with Alzheimer’s disease.  It’s a wonderful gift of hope for anyone with a parent with dementia.  Just click on Sally Smith’s name under the Health Professionals tab on the Podcast home page.  All profits support research at the Center on Aging.  Thanks.

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