Q: DEAR Regina, I have been taking care of my sister for 2 years. Her energy level is too much. She has been rummaging through the house and removing everything and hiding or misplacing things. It is causing me so much stress! I have removed most things that are harmful to her. Why is she doing this? How do I stop her from doing it?
A: This kind of behaviour can be exhausting to a lot of families. The person with dementia is looking for familiar things as a coping mechanism during disorientation moments. Rummaging through items can be comforting to someone that is anxious. I know for myself that cleaning is a positive method for me when I am angry. It helps me think and calm down while de-cluttering an area that desperately needed attention. Your attempts to stop her from rummaging usually will increase her anxiety or initiate anger and frustration. Your best approach would be to try and manage the situation before it happens so that it is less disruptive and safer.
A few things that can help are:
Removing harmful objects you have to keep her safe. If you want a list of potentially dangerous items that most people do not think of that is harmful to a person with dementia, contact the local Alzheimer’s Association.
You will want to think about your valuable items for safety as sometimes these things can be thrown away or damaged.
Replace items that she is dear to that she frequently loses and try to learn her hiding spots.
Pay attention to the pattern of when she starts to rummage through things. Maybe it is the same time of day she does it or when something triggers the behaviour. Sticking to a routine will help decrease boredom and anxiety of looking for something to do. Choose an activity that she really enjoys doing and put her favourite item in plain sight.
To comfort her during a rummaging time, you may want to go through the items with her and say things like: “I remember this” and reminisce with her. You can also create rummaging boxes with all their familiar things or things they like and let them rummage. Remember they are looking for things that are familiar or they like. Make it an activity.
Q: Dear Regina, I live with my sister who has Lewy Body Dementia. I try not to isolate her but I generally do not invite my friends over. Most of my friends didn’t know who she was before she developed the condition and it doesn’t make sense to visit when they don’t know her. What do you think? Any thoughts or ideas?
A: Inviting people or friends to your home is for your comfort as well. I would educate your friends on your sister’s condition and some will be supportive and some will feel uncomfortable. Don’t judge the ones that are uncomfortable but challenge them to learn more about it. Do, however, cherish the ones who are supportive and engage them with your sister as this will help her and you from isolation.
Keeping life as normal as possible is the best approach and make adjustments when needed. It doesn’t matter if they didn’t know her from before. You can share stories of you and your sister while keeping your sister involved with the conversation.
Lewy Body Dementia can have depressive episodes and isolation can lead to deeper depression. The mood changes and hallucinations can wear on you so be vigilant to seeking support for your own health sake.
The following was written by a person with dementia who quoted his wife’s response after he came home from a meeting where he successfully presented:
“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I terribly miss.
“They, your audience, don’t see who you are when you are away from the spotlight.They don’t see the confusion, the anger, the anxiousness.They don’t see the man who can’t remember how to do the simplest of chores.
“They don’t see the man who has a reminder on his phone to eat and to take a bath.They don’t see the man who can’t remember something he was told 5-10 minutes ago.They don’t see the man who, without a prepared speech or notes, can’t speak without stuttering or going blank.
“So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”
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