JudyCornish

Becoming worn out in caring for someone with cognitive impairment is inevitable and unavoidable. I've also worked with people with traumatic brain injury in the vocational rehabilitation world, and with people with mental illnesses in a facility, but I think the most stressful caregiving role is caring for someone you love who is experiencing dementia. Dementia is progressive. It is also highly individual ... how it affects a person will depend upon what part of the brain is affected, the underlying disease that caused it, the person's personality, the person's past life experiences ... it's really difficult to respond to the constantly changing abilities and disabilities of dementia. I don't know what to say about streamlining, as you asked, but the way I started was to put myself fully in the moment whenever I stepped into the presence of the person with dementia. If I didn't let myself worry about anything but what was right there in our presence, I was giving myself a brief break. I'm always looking for beauty to share -- whether it's a cloud or a piece of chocolate or a tune or a cat's soft fur. But the problem with dementia is that it's always progressing, so if it's at all possible to bring in another caregiver, try to do so. We cannot do it all ourselves, because our loved one's needs are always increasing.

It sounds like you're dealing with a nasty double whammy: abusive behavior and dementia combined. I have often seen a parent with dementia single out the child who is actually the most dedicated and giving and caring for the worst treatment. I don't know whether you have siblings, but this is a pattern. In one family, the dad would call the other children and say that the local son was stealing his money and starving him. Sometimes this happens as a continuation of lifelong abusive behavior, but other times it begins with the dementia. This will be scant comfort, but when I was practicing divorce law we often saw the children act out in the worst ways with the parent they felt most safe with. It may be that she is acting out her fear and anger at dementia to you, the closest and safest target. That being said, I don't think I've ever seen a family or caregiver change a parent with dementia that is being abusive to a child. Without rational thought, people with dementia cannot be reasoned with or expected to learn new behaviors. If there is a way to bring in other siblings and remove yourself from the line of fire, that would be optimum. As long as she is targeting you, other caregivers should be able to meet her emotional needs. It isn't comforting, but this really is about her response to dementia, not you as a person or your kindness and generosity in caring for her. May I continue to think about your situation and write again?

It also helps if we think about ourselves and our loved ones as having both remembering selves and experiential selves. Kahneman got me thinking about this with his book, 'Thinking, Fast and Slow.' There is a part of me that remembers the past, that feels familiarity in certain things and places, that takes comfort in that familiarity. This remembering self is drawing from my past experiences through using memory and recall. There is also a part of me that is in the present, experiencing everything via my senses in the now. Kahneman's example of our two selves is in how people choose vacations ... some of us pursue new experiences while some of us treasure returning to something recalled as pleasant. However, when someone develops dementia they lose the ability to use memory and their pasts become increasingly inaccessible. They begin searching for that sense of familiarity and like us all, desire "home" and what was once so comforting. Their remembering selves are gone (or fast going). Yet even though that remembering self is gone, they continue to have experiences. The psychological present is three seconds. People with dementia live exclusively in their experiential selves. Even when they cannot remember what happened even a few minutes ago, they still experienced it, and what we experience is still a part of us. It forms our moods. Because dementia does not take away the instinctive, involuntary intuitive thought system, what someone experiences will affect their mood.

When we, as companions and caregivers of people experiencing dementia, come to realize the continued existence of the experiential self, we can fill their present -- their experience -- with things we know they enjoy and benefit from.

I don't know your personal situation at all, other than that you just said you are a primary caregiver, so please excuse my replies coming across as no help. My first experience of providing care for someone with dementia was for a woman who was living at home alone. Since then, I've helped people living with spouses, children, and in facilities. Each situation is very different -- for the caregivers and for the person with dementia.

I'm not sure what you are looking for in the way of an answer. However, I can start by saying that each person in all of the above situations found themselves feeling very insecure due to increasing confusion. So, one of the emotional needs I identify is the need to be able to feel comfortable despite confusion. That's the second "tool" I offer families ... ways to help their loved one feel secure even though they cannot become less confused.

Am I going in the right direction with this answer? Have you found that your loved one experiences or has experienced distress at becoming more confused?

That's quite a few questions, so I'm going to try to respond to each one separately. :-) It took me years (and many clients) to begin to see a pattern in which skills were lost and which retained in dementia, and longer to find vocabulary and metaphors to describe it for us -- families, people who are not scientists or doctors. But we all have two thought systems. Einstein called them rational and intuitive thought; Kahneman refers to them as System 1 and System 2; Roger Sperry said right brain and left brain. Intuitive thought is our involuntary, instantaneous, creative thought that is formed from our experiences. So, it is our intuitive thought system that causes us to swerve when a dog runs out, even though it might not be rational to swerve because of oncoming traffic. Or, when you see a painting or hear music, you instantly have a reaction of liking it or disliking it. You could also choose to use rational thought to explain to yourself of someone else why you like it or don't like it. And, when babies are born they begin immediately to interpret the facial expressions and moods of the people around them, and learn what actions produce what reactions experientially. When someone begins experiencing dementia, medical science tells us they lose judgment, decision-making, and executive functions as well as memory. For us, as caregivers, we need to have that translated into something we can work with. It helps to see those functions as rational thought. When I'm with my clients, I know they still experience beauty, can read my emotions and moods as well as their own. When I join them in looking for beauty, and making sure that they have lots of sensory stimulation in the forms that appeal to them, we have a peaceful, stimulating and pleasant companionship. However, if I ask them questions, expect them to have the ability to use memory, to recall the past or be able to use rational thought functions, they become uncomfortable. I'll post this response and then begin answering your question about our experiential selves. :-)