Updated: Oct 6
by Teepa Snow, MS, OTR/L, FAOTA
When told that you will be living with dementia, you may choose to retreat. Decide to pull away and hide. Find yourself hiding in a private, dark, and lonely cave. Each person is unique, and yet many people find themselves unable or unwilling to come out, to re-engage with the life they had before the announcement, to start a new life after the words were said.
How can those around them help? How can they provide the just right support to engage this hurting human being, in living? Where is the boundary between their right to solitude and your responsibility to offer a way forward?
If the offer is too forceful or demanding, the person may well reject it as an attack on them. They may see it as evidence you find them an object of pity or as being incapable or unable without a parental-type relationship. It is critical to consider the issues of rights and responsibilities when making an offer. Making any statement that starts with “I know you must…” is not an offer. It makes an assumption that you know, could know, anything about how this announcement has affected me! So, try not to do it! Instead try, “I can’t imagine how this hit you!… Can you tell me anything?…” It acknowledges the other’s personhood and privacy, while seeking to enter into a relationship, given the new situation. If the person doesn’t offer anything, even after a pause.
Consider offering a simple option. “Are you more angry or scared?” Select two emotional options from the core five to consider, as making even simple choices might be challenging at this time. Core emotions can be categorized as angry, sad, lonely/feeling trapped, scared, or bored.
If the offer is too timid, the person may well think and feel that you don’t really want to do something but are making the offer due to a sense of duty or obligation. Trying to make it sound like “it would be good for you,” or that “You will be surprised about how much fun you will have once you get out,” is not typically going to encourage a step forward. Changes in the sense of self, self-confidence, or self-assurance may have been caused by stigma and labelling.
Otherwise, the person would have already emerged on their own. Consider something more along the lines of a partnership to take on what could be a challenging adventure for a first time out. It may be the first time that the new, changed me shows itself to others. Simply doing anything at all will take a massive amount of courage and support. Keep it short and simple. If the person has truly secluded him or herself, any amount of time out of the cave may feel like forever. Five minutes seems to be a magic number for an interaction or attempt. Pre-think what we could do that could be finished in five minutes or possibly go on for longer, if things go well. Have at least three options as possibilities in mind. So, the offer must be made in a just right way. How is that done? It starts by knowing the person and who they have always been. Consider personality traits, personal preferences, and life experiences when making the offer.
Are they more of an extrovert or introvert? In other words, in times of distress do they seek to be in control or seek to get connected?
Are they more of a planner or a person who lives in the moment? In other words, are they more spontaneous or do they need advance notice prior to agreeing to do anything?
Are they someone who does something because if they didn’t it would not be fair to another person or because it would hurt the person’s feelings?
Are they someone that likes to know how they are going to do something or why they should do something? In other words, do they need the details, or just the big picture to get going?
Are they a watcher, talker, or doer kind of person? How do they like to spend their time doing something? For example: You know the person always enjoyed birding.
Would it be better to: Suggest they come help you look for ten types of birds on a list? Ask them to help you identify birds by telling you what to look for? Or would it work better to ask them to help you set up a feeding station for cardinals?
What makes them more comfortable: Space-wise, sensation-wise, social-wise, even surface-to-surface contact-wise (textures, human contact, air movement, temperatures, water on skin)? Offering what best matches preferences can make a yes or maybe more possible.
Better time of day, morning, afternoon, or night? Matching a Circadian pattern for higher activity preference could make or break the potential for stepping up and out.
Keeping it short and simple – limit the time and the intensity. Think baby steps. Emerging from a cave can be a tricky business. EVERYTHING can seem intense and overwhelming at first. Take it a little at a time. Sitting on a front porch or outside on the back porch could be a big first step, if I am no longer feeling that I even want to emerge from my room.
What are previous activities or actions that I took to make a difference or help others?
Does that appeal or maybe we should go for something entirely different? Something that I have no experience or expectations about. That way I don’t compare the current me with the past me.
What or who needs help? Can they be part of the plan? Can I still be a helper rather than someone being helped? Can I still find a way to contribute, to matter?
How have I made it through adversity before?
How much time and space do I need to brood or think?
Do I need to go WHACK something and let it go for a while, without causing harm to anyone or anything?
Do I need you to just sit and be still with me a while until I can find my voice and you can listen and reflect what you hear?
Would I rather talk while we sit, walk, drive, rock, or lie out under the sun, the clouds, or the stars?
Do I need to see something amazing to lift me up? Or look at something or someone in distress to let go of my own pain to offer what I am to others?
Once you consider all these pieces, consider making an offer using a Positive Physical Approach, one or more Positive Personal Connectors, and a Positive Action Starter.
Positive Action Starters
Give SIMPLE and SHORT info
Offer concrete CHOICES
Ask for HELP
Ask the person to TRY
Break the TASK down to SINGLE STEPS at a time
To learn more about caring for a loved one with dementia or to download guidance on how to use the Positive Physical Approach and Positive Personal Connectors, visit www.teepasnow.com.
Takacs McGinnis Elder Care Law can help, too. Just give us a call at 615.824.2571.