How do we help someone feel secure in our care?
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.
Let’s talk about abilities and dementia
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.
Why do we want them to show us they know us?
So often I talk with people who are upset because a loved one in the later stages of dementia no longer recognizes them or other family members. Most of us find this painful. Often, we respond by trying to jog our loved ones’ memories and urging them to recognize us.
Is this logical? Is it kind? We need to think about what dementia is and what someone experiencing it has lost before we ask him or her to meet our need to be recognized. When a client fails to recognize his or her loved ones, I see shock and pain on their faces, a realization that receiving love from their spouse or parent may never happen again. Their grief is palpable, but their efforts to elicit recognition seldom bring results. Most often, the person with dementia will politely pretend to know who everyone is, while feeling bewilderment, failure, and fear.
Memory loss is a disability.
Dementia causes memory loss. It is, at present, irreversible. There may be days when your loved one recalls more than others, but the downward trend will not change. When someone has lost memories due to dementia, trying to jog their memory will not help.
People with dementia have lost the ability to retrieve memories, not just the memories themselves. Although a healthy brain can take in hints and reminders, then locate and retrieve a memory, the brain with dementia cannot. Asking a loved one to use memory to recognize you is the same as asking someone who is deaf to hear to you, or a blind person to see you. They do not have the equipment to comply. Asking them to use what they do not have is both hurtful and embarrassing.
Do what they cannot do.
You do have memory, though, and you can use it. Whether your loved one is still walking around and able to communicate verbally, or bedbound and unable to display any signs of awareness, you can use your memories to connect and share love. You can tell her who you are without demanding that her eyes fill with recognition. You can tell him why you’re so happy to see him and that you were there yesterday and the day before, too. You can recount for her a favorite shared memory from your childhood or describe for him a place he loved to visit with you.
We can enrich our loved ones’ worlds by using our skills, rather than asking that they use the ones dementia has taken away from them.
Show him you know who he is.
Particularly heartbreaking to me is the family member who waits by a loved one’s bedside for some indication – the slightest gesture or look to prove that a moment of clarity or recognition has occurred. “I just want her to see me one more time.” But the chance of being present for a moment of clarity is slim. How much better to spend our time at the bedside showing them that we know who they are, and filling their present with stories from happier times.
They experience the moods we bring them.
This is a very important truth to understand. Because people experiencing dementia are losing their rational thought processes, they cannot use recall, planning, or distraction to bring themselves out of negative moods. So, a negative mood can last a long time. However, this same lack of rational thought leaves them open to the moods we bring them. Because they still have intuitive thought, they continue to feel their own and our emotions.
This gives us, as caregivers and family members of people with dementia the responsibility of bringing positive moods and emotions to our clients and loved ones. Let’s do our grieving in private and bring to them our happiness and love. Let’s fill their present moments with the good times we recall. What we bring will last.