Mom is living with a progressive disease with no cure. Dementia is a terminal illness. It will ultimately take her life. It is a terrible diagnosis. However, although there is no cure, we can provide care for her to try to make her days pleasant. She is no different than anyone else in that regard – she, like all of us, want contented, peaceful days. Your visit will help that.
Here are some tips that will help you as you visit her.
1. Visit, but be flexible. Something could come up and we may need to cancel. If she is agitated, the visit could be short and that is okay.
2. Don’t be afraid. Mom is doing fine in her new home and you can expect the visit to be pleasant. We all have good days and bad, and if she is not having a good day and your presence brings anxiety, make the visit short.
3. Remember the reason for the visit. As I said above, the reason for coming is to make her day better. You might leave feeling any number of emotions, but if you brightened her day, then mission accomplished. One visit can be good and the next, not so good. It is not your fault.
4. Prepare your mind. Mom might talk to imaginary people so be prepared for that. In the middle of a conversation with you, she might turn and talk to an empty chair or a coffee cup. That is a normal symptom for her disease. Most of the time her imaginary people do not upset her and we just go with the flow. Small upsets are fine. When I see a repeated pattern of larger upsets, I consult with her doctor.
5. Your name. Mom will likely remember your name, but she might not. Don’t take it personally; it is one of the hallmarks of the disease. If she cannot say your name do not assume she does not remember you. She will still remember you. To be safe, just say your name as you approach her.
6. Don’t quiz her about what she does and doesn’t remember. If you want to talk about a shared memory you have with the Mom, it is better to say, “I remember the time we …” If you begin talking about the event or memory, she may join in, but she might not be interested. That is okay. A statement about something is much better than a question about something.
7. Current events. Keep in mind that Mom does not watch TV, read the paper or monitor Facebook. Don’t expect her to know what is going on in your world.
8. Don’t try to convince her to see things the way you do. Mom has some beliefs or explanations for things that are incorrect. She might say that someone is stealing from her, or that she is twenty eight years old with a new baby, or that she just talked to her mother. These experiences are real for her, so just go with the flow. Gently redirect by talking about something like the weather or that you understand they have good ice cream here.
9. Avoid combining multiple ideas or requests into one statement. For example: “Why don’t you have a seat over here where we can talk. I’d like to hear about the children. Do you want some coffee?” would be less confusing if broken into three separate statements. After “Why don’t we have a seat?” allow time to sit down before asking about coffee (pour her a decaf – don’t give her a choice.) After you get coffee and get seated again, then make a statement about one of the children – “I understand _____ likes living in _______.”
10. Listen first, then listen some more. You can ask Mom what she thinks, feels, or wants. Take time to listen to what she has to say. She may say she wants to get out of the nursing home, but she cannot get the door to open. You can simply respond by saying something like, “Doors are tricky these days. Maybe they will get it fixed tomorrow.” Then you can talk about doors instead of getting out.
11. No regrets. If they visit does not go too well, don’t feel bad. You could come back tomorrow and everything that happened today will be forgotten.
I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
– Maya Angelou
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