Dementia – “I want to go home”

At some point, I think every carer will go through a stage where there loved one with dementia will say “I want to go home”.

Two Elderly men walking

Sundowning

My mum has Alzheimer’s, initially, she started to repeatedly ask to go home in the early evening/night time and after doing some research we learnt about “sundowning“. Sundowning is where those living with dementia may experience more confusion, anxiety, restlessness, and agitation in the late afternoon or evening.

So every night, she would look around the living room and not recognise her own home that she’s lived in for over 30 years, not recognise the lovely pieces she collected over the years hanging on the wall, and all she wants is to go home. We learnt strategy tools to try and combat this and help settle her at night. However, the last few weeks have been difficult as she has deteriorated significantly so that she’s asking to go home as soon as she wakes up.

So now it’s not just sundowning. It’s heartbreaking as she doesn’t recognise me as her daughter anymore from the moment she wakes up until she goes to sleep. Each day is different I’m her cousin, her aunt, daughter of her sister anyone except her daughter. I’m blessed with the fact that she still feels safe with me, that would terrify me that she didn’t recognise me and was scared of me, and I pray that day will not come.

I distract her with food, talk and games but as soon as I leave the room she scared, sometimes she’ll call out to me to get a bag to pack away her things, or her purse so that she has bus money to go back home. Other times, I’ll walk back into the room and she’ll be relieved to see me asking me where have I been and why did I leave her alone in the house.

It’s difficult as we don’t go out much now as she’s terrified of using the wheelchair, any bump or uneven pavement elicits the response “I’m falling”, so our outings are limited. So we’re stuck at home, and mum is worrying that her mother is missing her, or that we have to be quiet as the men in the other room will hear us, or we have to go home as her house could be burgled as no one is home, and throughout this is she is constantly packing and unpacking her bag and pointing out everything in the room that needs to be packed (including curtains, sofa, mirror etc).

TV was a distraction tool, as she had favourite programmes like Lewis, Vera and any detective drama where we could discuss and guess who the killer was but now she immerses herself so fully into the programme that she believes what she is seeing is real, so now we only watch light-hearted programmes.

Learning from the Dawn Method, I live with mum in her world, sometimes that’s the present, sometimes that a younger version of herself, but whichever version it is I really need to listen and pick up on the cues of what she’s trying to tell me by wanting to “go home”. Sometimes certain strategies work like promising to take her home tomorrow or having a family member call and promise to housesit so the house is not burgled, or distract with games like balloon tennis until she’s too tired or forgets about her worries or to just sit and reassure her.

What I’ve learnt with “I want to go home” is that there isn’t one answer that we have to try different options, what worked yesterday may not work today, all I can do is make sure mum feels safe and secure. One of the best resources that I have used to help support mum on her dementia journey comes from Teepa Snow, and here in this webinar on her training, she tackles the question of “I want to go home” from 1.15 in and practically demonstrates a possible way to diffuse the situation.

For now, I continue to struggle, continue to learn, and just be there for my mum.

  1. INFOGRAPHIC: Coping strategies for sundowning and sleep issues

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