Without warning, you might find yourself standing in the shower with the shampoo in your hand, drawing a blank about what to do with it. Or, you might find yourself halfway through making coffee one morning with no idea how to add water to your coffeemaker.
To find yourself suddenly unable to do something simple is terrifying. If you realize that you are becoming increasingly impaired, you know that depending on others to provide for your every need is coming. You know you’ll become more and more of a burden and you also know you will have to trust those who love you to keep you safe and comfortable.
How can we, as families and caregivers, help our loved ones come to trust us – even though they are becoming increasingly less able to make sense out of what we are asking them to do?
Help them feel safe being confused.
One of the surest ways to help people who are losing memory and rational thought feel safe is to make sure that whenever they are with you, they can ask for information as often as they need it without upsetting you. If you are never alarmed or irritated when they display that they do not understand or cannot recall, they will at first feel safe asking, then eventually feel safe not asking. They will begin to trust you to keep track of what’s going on even though they can’t.
For someone experiencing dementia, becoming increasingly confused is unavoidable. As their companions, we do them a great kindness when we help them become comfortable with it.
Help them feel safe when doing tasks.
Whether people with dementia are with their family members, friends or paid caregivers, there are always things that need to be done. Even if they are simply getting ready to go for a walk, a few preparations must be made. Although it may be obvious to us that appropriate shoes are necessary, it won’t be apparent to someone without memory or rational thought.
If I want my loved one to feel safe being in my care – and be comfortable with the constraints dementia creates – I will have to become an easygoing and nonjudgmental partner in accomplishing what needs to be done each day. If my responses are concern or irritation when my loved one doesn’t understand what should happen next, I am putting myself in a position of superiority and we will have problems.
My role as someone spending time with a person with dementia is that of a teammate – a fellow traveler on the road of forgetfulness and finder of ways to enjoy the world intuitively. If I am there as a companion rather than a superior, we will have a pleasant time together.
Help them feel safe about memories.
With memory loss comes an altered sense of reality – both about the past and the present. If I accept the inaccuracies that result with memory loss and work with them, rather than demanding that my loved ones or clients to use the memory and rational thought skills no longer available to them, they will again begin to feel safe with me.
People with dementia learn either that they are safe in our care or not through their day-to-day experiences with us. It’s up to us to use our rational thought skills to help them become more comfortable as their condition progresses.
When we are with people who have dementia, we should take responsibility for their moods. Actually, whether we realize it or not, we are already creating their moods because changing moods requires rational thought and memory. People with dementia are missing both.
Think about how you manage your own moods. If you are feeling sad, you might use memory to recall happier times. If you are feeling frustrated or insulted by someone’s behavior, you might draw to mind reasons for why they behaved that way or analyze why you should be patient with them. You could plan to give yourself a treat later or distract yourself with thoughts of an upcoming vacation.
People with dementia don’t have these tools at their disposal. As a result, negative moods from failure at tasks or embarrassment in conversations are predominant and persistent. Studies have shown that moods last longer for people with dementia and that the further into dementia the person is, the longer the moods last.
There’s another complication. With intuitive thought, people with dementia continue to be able to read the moods and feelings of those around them. Yet, without rational thought they are unable to analyze why their companions might be experiencing negative moods or feelings.
One of our clients, Mary, had two DAWN caregivers in her life as well as a daughter who lived nearby. All three women were kind, empathetic and very much attached to Mary. One day, one caregiver called me saying that our client was having trouble with back pain and needed an overnight caregiver. Lately, Mary had been complaining of pain almost every time this caregiver was with her and, when this caregiver prepared to leave, Mary became more anxious and begged her to stay. I told the caregiver that I would begin a review of our care plan.
When I spoke with Mary’s daughter, she was mystified. I checked with the other caregiver and she was surprised, too. When they were with Mary, Mary had no trouble with pain and was unconcerned about being alone when they left.
Our client was the victim of unintentional mood management. My empathetic caregiver was communicating concern and worry to Mary, particularly as her shifts drew to a close. Mary easily read her concern and, without analysis, assumed there was something in the present to be concerned and worried about. Once she was anxious, her aches and pains became more pronounced and she didn’t want to be alone.
I have watched loving and concerned family members do the same thing. They come to visit their loved ones and bring their own sadness, guilt and loss. We watch their loved ones absorb their pain and retain it after they leave – until we fill their presence with joy and love again.
People who have dementia have no skills to analyze the reasons for the moods we bring to them. Whatever we bring into their presence will be absorbed and mirrored back to us. We should use our own rational thought skills to put aside any negative feelings we might have about their situation and come to them with our joy and love instead.
As dementia caregivers, we do both ourselves and our loved ones great harm when we focus on what is lost to dementia rather than what is kept. At DAWN, we focus on our clients’ abilities, not their disabilities.
Dementia is the condition of progressive cognitive impairment, but not a condition of complete cognitive impairment – not for a very long time, if at all. When we engage with people experiencing dementia only on the level of what they cannot do, we disable them even more.
There are abilities in dementia. These are and should be recognized as strengths – skills that people can still use to enjoy daily life. What are these skills?
Our intuitive thought processes.
Medical science tells us that people with dementia are losing executive thought functions as well as the ability to use judgment and make decisions. That’s a helpful diagnosis for doctors, but it doesn’t help me understand how to enjoy spending time with someone experiencing dementia. We caregivers need to think in terms of what our loved ones can and cannot do. Here, we see our clients lose the ability to see cause and effect, prioritize actions and ideas, or follow sequences (all rational thought processes) but we don’t see them lose their intuitive thought processes.
It’s intuitive thought that enables us to do the fun things in life: to be creative, enjoy beauty in all its forms, feel our own feelings and read the moods and feelings of those around us. Intuitive thought helps us gather and enjoy sensory data – everything we can see, hear, taste, smell and touch. When caregivers realize that their loved ones are able to do these things, they can fill their lives with sensory stimulation and beauty, while taking care of rational thinking for them. The result is companionship and mutual enjoyment of the present.
Our experiential selves.
Yes, people with dementia are losing memory, but they are not losing the ability to experience. We have both remembering selves and experiential selves.
When I am with my clients and fully present (enjoying the moment with them), we have a wonderful time. They feel valued, accepted and satisfied. It doesn’t matter that they cannot recall what we did a day, hour, or even minute later. They have the experience and their positive mood will last.
Because I recognize that my clients continue to experience the present despite dementia, we can experience companionship and enjoy our time together. I make sure that their experiential selves are given lots of positive stimulation, although I don’t expect them to recall it later.
The tools of mindlessness.
I believe mindlessness is as valuable to those of us with dementia as mindfulness is to those of us with healthy brains. Without rational thought, people with dementia lose the ability to follow the steps of a task or tune out distractions. This makes simple tasks like getting dressed or eating a meal difficult.
However, if they are still in their own homes – where they have performed a task many times before – they can use muscle memory and automatic thinking scripts (the tools of mindlessness) to continue to function more successfully for longer.
When we are caring for people with dementia, our focus should be on what they can do, not on what they cannot do. Putting our focus on their strengths enhances companionship and lowers stress for all.