20 questions to ask yourself if you’re wondering whether or not you should visit someone who lives with dementia

This week a new subscriber sent me an email, which said in part:

“My mother has dementia, and I went to see her a year ago. She got violent with me and verbally abusive. I took it personally and I haven’t seen her since. However, I have been sending cards and items of clothing in hopes to cheer her up. I was just told that she has 6 months to live, so I’m flying back down there the beginning of October.

Until I saw your [BANGS video] today I have been sitting here petrified and in total dread. Now I’m starting to feel empowered and not so scared. I feel so guilty for not seeing her this whole time. I hope our upcoming time together goes well, and we create some memorable last memories. With your advice I think I can make this work.”

I don’t know if this person’s mother lives in a LTCF or not, but the email made me think of all the people with dementia who live in LTCFs, and who don’t have visitors for whatever reason. Many who remain in their own homes or in the homes of their care partners also do not get visits from family members and friends. This tragedy made me think of 20 questions people may want to ask themselves when they wonder whether they should make the time and space to visit family members and friends who live with dementia.

Here are the 20 questions:

1. How does it feel to feel lonely? When do I feel most lonely? What do I want when I feel lonely?
2. How does it feel to feel loved? When do I feel loved? What makes me feel loved?
3. How would it feel to never see my family again? How would it feel to never see my friends again? What is it like/would it be like to feel abandoned?
4. How important is touch to human health? How important is touch to me? How important is touch to the person I know/love who lives with dementia?
5. What does it mean to be connected?
6. How important is connection to human health? How important is connection for me? How important is connection to the person I know/love who lives with dementia?
7. How does it feel to be bored? What are some ways to alleviate boredom?
8. How important is it to human health to be active and engaged? How important is it for me to be active and engaged with life? How important is it for people who live with dementia to be active and engaged with life?
9. What are the benefits of visiting people in hospital for the people who are being visited? What are the risks?
10. What are the benefits of visiting people in hospital to the visitor? What are the risks?
11. How do I feel when I see someone I like/love who I haven’t seen in a long time?
12. What might stop me from visiting someone I know/love who lives with dementia? (Make a list of as many things as you can think of.)
13. What lies behind the list of answers to question 12? What emotions might play a role in my answers?
14. What would happen to me if I became isolated, bored, disconnected, lonely, and unloved? What might happen to others in similar circumstances?
15. What am I grateful for? What am I angry about?
16. What is important to me? What is my purpose? What constitutes living?
17. How has the person I know/love who lives with dementia impacted my life? Has my life or well-being ever depended on them? In what way?
18. What do I want the person I know/love who lives with dementia to know about the way I feel about them? Have I told them? When and how? Have I shown them? When and how? What did that feel like for me? If I haven’t told them, why not?
19. Is it important that the person I know/love who lives with dementia recognizes me? If yes, who is it important to?
20. If the person I know/love were to die tomorrow, would I have any regrets?

Sometimes questions are more powerful than answers; I hope these are helpful. I think it’s also important to remember that we can’t control others’ behaviour and some people will choose to distance themselves no matter how much we might wish them to be involved (more on that here).

Links to other sets of 20 questions here.

https://myalzheimersstory.com/2020/02/16/20-questions-to-ask-yourself-when-someone-who-lives-with-dementia-wants-to-go-home-or-tries-to-escape-wherever-they-are/

https://myalzheimersstory.com/2016/10/14/20-questions-to-change-the-direction-of-dementia-aggression/

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Take my short survey on behaviour here.

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