Have you ever found yourself asking How did I get here? or What am I going to do now? Whether you are living with dementia yourself or caring for someone living with dementia, it can be easy to get lost in the moment and simply try to make it through.
By Christine Browdy and Dan Bulgarelli, PAC Team Members
It is natural to have difficulty seeing the forest through the trees because as the condition progresses, more time and energy will be required from all people. Read on for three tips to help you improve your life as well as the lives of those around you.
1. The benefits of building a team that is aware and skilled
Many of you plan for a lot of possibilities in the future. You invest in retirement funds, create living and traditional wills, health directives, and some people even choose their burial plots. However, very few people tend to think about what life would be like if someone develops dementia. Few people want to walk down that road until it’s necessary. Why is that?
As the condition progresses, dementia will change nearly everything in a person’s life. Each person will still be the person they have always been, but things will be different. As a family member, friend, or professional caregiver, the techniques you’ve used to support and communicate will need to change as well. You also won’t be able to do it alone, so building a skilled team early on can make a major difference in the quality of life for you and your person.
2. Is this activity annoying, risky, or dangerous?
When a person is living with dementia, you may see them doing things that you don’t think they should be doing. Maybe they are stuffing items up their sleeves, tearing apart a tissue, or something else. For many of us, our natural reaction is to say Don’t do that, put it back in a stern voice. But I have two questions for you. Why? and Is what they are doing annoying, risky, or dangerous?
Do you know why they are doing something they’ve never done before? If you are familiar with Teepa’s teachings and her GEMS State Model, you might remember that people don’t lose their curiosity, even if they don’t have the same awareness of others and boundaries they once had. Maybe they like the look or feel of something and they want to examine it. Is it hurting you, them, or someone else? If not, then Teepa would recommend taking a deep breath and letting it go.
However, if the activity is risky or even dangerous, you may need to intervene – but with a substitution, not a subtraction. Yelling Stop! or grabbing their arm could actually startle them and make the situation worse. On the other hand, if you were to give an excited Ooh, Mom look here! because there’s something you want to show her, you are now tapping into her curiosity.
3. Move past myths and fear, explore what is possible
You have probably heard that dementia is the long goodbye. Dementia causes people to be angry and aggressive. You will need to do everything for them. None of this is true! Yes, dementia can be scary and overwhelming, but it is still possible to live a full and meaningful life – if you as a care partner are willing to add new awareness and skills.
Teepa helps us move past this generalization to realize that dementia doesn’t rob a person of everything, and it doesn’t happen right away. Depending on the type of dementia, a person can live another 20 years or more. It is true that dementia will cause people to lose certain skills and abilities over time, but not all of them. Let’s focus on what skills a person still has and use those. Support them where they need your skill but allow them to be as independent as possible. Utilize their passions, knowledge, and experience to help you.
Living life well with dementia is very possible, especially when you consider how you are viewing the situation. Building a team around you that is aware and skilled, understanding the difference between an annoying, risky, or dangerous situation, and choosing to move past false myths and fear of the unknown will help you shift your focus to life with dementia instead of life being dementia.