Sundowning
This is really strange, but mum seems to get much worse after 5pm. She will start to look for her coat and say she needs to 'go home', or she'll head out and when I catch up with her, she says she 'can't find home'. Sometimes she starts describing a house she lived in years ago, and sometimes it makes no sense.
It's so horrible to see her so upset, usually I can calm her down but not always. It just seems to happen in late afternoon - is that normal? What do I do?
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Do you have any tips to support a person with dementia who becomes anxious and wants to 'go home', often in the late afternoon? (This is known as sundowning.)
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Thanks
Serena
Sundowning is really to be frank the most awful part of the dementia illness that sufferers experience. My Mum has it particularly bad, even more so as she is scared of the dark. To give you an idea, my Mum when she first went into care was visited in the morning by the DOL team, who assessed her as being able to make a judgement/decision. I asked them to visit Mum again, after 4pm. When they did, their decision was reversed! The best way to handle the request to get my coat, I want to go home. Or I have finished work now and need to get back home. Is to change the subject, just try changing the subject or use delaying tactics. Such as, ok Mum we will go home but we need to wait for John, Peter, any family member or friend. if she says why, say they said they would come over and pick her up, or they are coming for tea or something. It really doesn't matter too much, be fairly vague, she will forget but it will change the subject and hopefully move her onto something else.
I won't hold back though, it is hard, very hard indeed as you are trying to reason with her about not going home, because she is already home and she will swear blind she is not home. she will often not recognise her surroundings. I often have Mum on the phone saying she wants to go home and I gently tell her she is and she shouts she is not. So we play the game, I call it the recognition exercise.
Ok Mum where are you calling me from? describe your surroundings, as she does I say you remember your green chairs, the ones you got from the store? Do you see pictures on the wall, are they x y and z? is there a television in the corner, what does it look like, then after awhile Mum recognises her surroundings and it dawns on her she is at home in her sitting room. I know it sounds odd but really the sundowning does affect the sufferer in such a way they don't recognise where they are and often can think they are somewhere else. Often Mum would say she was at the doctors or she was just back from shopping ( when she had not been out). Now Mum sadly is in a care home but she will tell me herself and another resident have been out shopping and are just back from Bluewater.
She frequently calls me and asks me to pick her up and take her home and tells me she is somewhere else, and I do the same recognition exercise with her. You are at your home Mum, where are you calling me from, are there green chairs there? do you have a television, pictures on the walls, family photographs? The recognition test really does help as once they focus on their surroundings, the surroundings then become clearer.
Home does seem to be a feature of the sundowning though, as Mum is now in a residential care home but is constantly telling staff and the family she wants to go home, but she doesn't really know where home is anymore. When you gently tell her she can't go home as there is no one at home anymore ( my Dad died four years ago) she will say but Mommy and Daddy are there ( she is referring to her own parents here)..... as she is thinking of her home as a child rather than her house she lived in before she moved into care.
My Mum has had this awful illness for probably five years or more but it only become apparent really after my father died. The sundowning started virtually soon after her diagnosis in nearly 4 years ago now and I have found over time the recognition test works the best way I have found to handle the request to go home, when they are home.
Another aspect of the sundowning and "I want to go home", is the packing. You may not have experienced this yet, but as they are convinced they want to go home, they don't just get their coat but they start to pack as well.
Mum frequently when she lived at home, packed her clothes up along with some contents from the fridge and other things she thought she would need, even the toilet brush would get packed! As she could not access where her suitcases were stored, she would use other means to pack, such as the laundry basket, pillow cases and various handbags. Often I would arrive at her home to find her clothes all over the bedroom and everything under the sun packed into various bags and I would have to unpack and put it all away ( throwing away the food that had been out of the fridge).
Now she is in permanent care, she still packs but not as often. We had to remove her suitcase from her room as she packed frequently. Often now I will go to see her and her clothes are all over the bed and she has packed using carrier bags or pillow cases and the laundry basket, amazing how clever she is in finding ways to pack. You just have to say, oh Mum you have packed again, I will sort it out. she will ask you to leave it alone as she is going home and you can't stop her. I will then use the usual tactic ( as she is of course not at her actual home anymore) ok but we need to wait for John, Peter, whoever as they are coming for tea, pick her up. Then change the subject. I hope some of this advice helps. Good luck xx
