Strategies for sundowning?

[EssexBoy1]

My mother's condition seems to be deteriorating rapidly. She is still waiting for a formal diagnosis (we've been promised an assessment this month after a long wait) but she is already suffering from daily prolonged "sundowning". She's usually (though not always) OK in the mornings, but anytime after 3.00 PM the symptoms will start and basically continue until bedtime... this manifests as being convinced she simply isn't "home", and in her head she's being constantly shuttled between various houses. Her anxieties include being suddenly told to move (so she's always packing bags and getting ready to go), having to pay rent for the place she thinks she is currently at, other residents (she will often set the dinner table for up to 5 people, despite there only being herself and my father in the house), and losing things because she "doesn't know where anything is kept here." I live 100 miles away and can only visit a few days per week, and even though we have a great local carer who comes in twice a day to give them their meds and keep an eye on them, I'm getting more and more afraid of leaving them alone at all. (NB My father has his own issues and can't look after himself.)

I'm getting used to the notion that they will either need a 24/7 live-in carer before too long, or go into residential care, but in the short term, are there any successful strategies anyone has used to minimise the effects of sundowning? Of all things, the thing that I've found that works best with Mum so far is to ask her to concentrate on the furniture, and the fact that it's familiar does seem to help. My temptation would be to put up notices on every available surface to say "This is your house, you live here, you've lived here for over 25 years, no-one else is here, you don't need to move, relax!" but I'm sure that's probably not wise... so far she's not getting (too) distressed about things (she takes my word for it when I tell her she's safe and in the right place) but common sense tells me that's unlikely to last... all help appreciated, thank you.

PS as an aside, I've been clinging to the article of faith that keeping Mum & Dad in their own home is the best thing for them, but would Mum even notice if she was moved?

 

[McSuffolk]

Hi @EssexBoy1
I wish someone could offer a solution to this … i empathize with your experience re your mums sundowning as what you have described is, to a T, what my mum did. And how you respond is how I responded and for a while mum would accept that yes, these were all her things in the house but she‘d say she was living in about 4 houses. Unfortunately mum lived alone, started wandering in the night with police call out and we moved her into residential care for her own safety.
However I’m still wishing that there could be a solution because now, if I go to visit after lunch the sundowning seems to start even earlier than it used to! I feel reluctant to go unless it’s morning as I really find dealing with or responding to it difficult 😞

 

[Jennamaria]

My mother's condition seems to be deteriorating rapidly. She is still waiting for a formal diagnosis (we've been promised an assessment this month after a long wait) but she is already suffering from daily prolonged "sundowning". She's usually (though not always) OK in the mornings, but anytime after 3.00 PM the symptoms will start and basically continue until bedtime... this manifests as being convinced she simply isn't "home", and in her head she's being constantly shuttled between various houses. Her anxieties include being suddenly told to move (so she's always packing bags and getting ready to go), having to pay rent for the place she thinks she is currently at, other residents (she will often set the dinner table for up to 5 people, despite there only being herself and my father in the house), and losing things because she "doesn't know where anything is kept here." I live 100 miles away and can only visit a few days per week, and even though we have a great local carer who comes in twice a day to give them their meds and keep an eye on them, I'm getting more and more afraid of leaving them alone at all. (NB My father has his own issues and can't look after himself.)

I'm getting used to the notion that they will either need a 24/7 live-in carer before too long, or go into residential care, but in the short term, are there any successful strategies anyone has used to minimise the effects of sundowning? Of all things, the thing that I've found that works best with Mum so far is to ask her to concentrate on the furniture, and the fact that it's familiar does seem to help. My temptation would be to put up notices on every available surface to say "This is your house, you live here, you've lived here for over 25 years, no-one else is here, you don't need to move, relax!" but I'm sure that's probably not wise... so far she's not getting (too) distressed about things (she takes my word for it when I tell her she's safe and in the right place) but common sense tells me that's unlikely to last... all help appreciated, thank you.

PS as an aside, I've been clinging to the article of faith that keeping Mum & Dad in their own home is the best thing for them, but would Mum even notice if she was moved?

Hi, I am in a similar position with my mum she lives on her own & she is not too bad in a morning but around 2-3pm she gets really confused about her house, somedays she thinks she is cleaning someone else's and needs to go home but she can't leave till the people she is cleaning for come home, other days she thinks we are moving her out of the house, etc etc it varies from day to day. To ground her I talk to her about her neighbours and ask her to look outside at what she can see and talk her through it that way and that is working at the moment. I am with you on clinging on to the belief that keeping her at home is best but I am starting to have doubts. I wonder if her being on her own a lot if that makes the sundowning worse, I have just via social services got carers to come in and do an evening meal for her but that was all organised over the phone.

 

[Colin47]

My wife suffers from dementia and sundowning is frustrating, I do appreciate that because her short term memory is poor, at these times she lives in the past often 50 or so years back. At times she doesn’t know who I am or thinks she lives elsewhere, and worries about her sisters needing to be cared for (her sisters are in their 60’s)
There really doesn’t seem much, if anything, that the doctors etc can do to help. I often feel that we carers are left “to paddle our own canoe “
This may not be of much help, but you are not alone

 

[Lida]

My mother's condition seems to be deteriorating rapidly. She is still waiting for a formal diagnosis (we've been promised an assessment this month after a long wait) but she is already suffering from daily prolonged "sundowning". She's usually (though not always) OK in the mornings, but anytime after 3.00 PM the symptoms will start and basically continue until bedtime... this manifests as being convinced she simply isn't "home", and in her head she's being constantly shuttled between various houses. Her anxieties include being suddenly told to move (so she's always packing bags and getting ready to go), having to pay rent for the place she thinks she is currently at, other residents (she will often set the dinner table for up to 5 people, despite there only being herself and my father in the house), and losing things because she "doesn't know where anything is kept here." I live 100 miles away and can only visit a few days per week, and even though we have a great local carer who comes in twice a day to give them their meds and keep an eye on them, I'm getting more and more afraid of leaving them alone at all. (NB My father has his own issues and can't look after himself.)

I'm getting used to the notion that they will either need a 24/7 live-in carer before too long, or go into residential care, but in the short term, are there any successful strategies anyone has used to minimise the effects of sundowning? Of all things, the thing that I've found that works best with Mum so far is to ask her to concentrate on the furniture, and the fact that it's familiar does seem to help. My temptation would be to put up notices on every available surface to say "This is your house, you live here, you've lived here for over 25 years, no-one else is here, you don't need to move, relax!" but I'm sure that's probably not wise... so far she's not getting (too) distressed about things (she takes my word for it when I tell her she's safe and in the right place) but common sense tells me that's unlikely to last... all help appreciated, thank you.

PS as an aside, I've been clinging to the article of faith that keeping Mum & Dad in their own home is the best thing for them, but would Mum even notice if she was moved?

My mum was adamant she wouldn’t move from her house but there were many problems with care (she wouldn’t accept it!) and sundowning meant increased anxiety from late afternoon. The decision was taken out of our hands, thank goodness, after she had a minor fall. In hospital and ever since she moved into a care home she has been convinced she is still at home. It’s inevitably confusing for her to fit the change of circumstances to that belief but somehow she does it. She remains anxious but our fears that she would be very distressed have not really materialised. I can’t say that will be true for your Mum, I see lots of different behaviour in the other residents of her care home, but it might be that as she is already confused a new place would be no worse and of course in terms of her care it could be much better. Good luck.

 

[Flossyflo]

My Mum is also convinced that she is constantly moving between lots of different houses. I completely sympathise. I found with my Mum that when she started getting anxious that I would put Cliff Richard(Mum loved him as a teen!) on Youtube and we'd sing along. This definitely helps with her mood and her anxiety will diminish, I think it's a bit like changing the subject. I haven't yet found another strategy that helps unfortunately. Sending love to you x

 

[Montyfergus]

I so do sympathise with all you good people, this disease is so dreadful and very cruel to everyone who suffers from it and of course family and friends who try and hold onto there family members as they were. My mum is 91 years young and was diagnosed in November 2022 she too is going through sundowning and her symptoms are the same almost as you are all experiencing one thing we did was when we could not calm mom down and she was adamant she was not at home one of us would take her out in the car drive around for 10 or 15 minutes asking mum to direct us to the home she new most times mum directed us back to the home we had just driven from we would take her into the house and she would be relieved to be home, we would stay awhile make a cup of tea and she was fine and this worked for awhile. The last few times we did this mum refused to get out of the car so this then gave us another problem which we struggled with. We have now just moved my mom into an independent living flat with carers on hand 24/7 mom always said she was very lonely and frightened at the bungalow, she would search all cupboards etc whenever she returned home and then we noticed she would get up at 2 or 3 in the morning and the ring doorbell captured her unlocking her front doors.
so anyway she is in a beautiful flat we have tried to keep her furnishings the same as best we could and mum has been there just under a week we do think we have now done tge right thing by her but the last week has been no piece of cake, and I know it’s very early days I can only hope that she is happier she has told me she feels safer which is a bonus but all our lives have changed in so many ways since diagnosis and I’m sure we have seen nothing yet we have faith in god and I pray for mum every night and ask god to give us strength. I know this probably isn’t a great deal of help to you all but we are all a family of carers now and I send my love to you all.

 

[Cardinal]

Hi @EssexBoy1
I wish someone could offer a solution to this … i empathize with your experience re your mums sundowning as what you have described is, to a T, what my mum did. And how you respond is how I responded and for a while mum would accept that yes, these were all her things in the house but she‘d say she was living in about 4 houses. Unfortunately mum lived alone, started wandering in the night with police call out and we moved her into residential care for her own safety.
However I’m still wishing that there could be a solution because now, if I go to visit after lunch the sundowning seems to start even earlier than it used to! I feel reluctant to go unless it’s morning as I really find dealing with or responding to it difficult 😞

Many years ago we went through something similar with our mom. She started wandering, day and night, entered strangers homes and refused to leave. Like you for her safety we moved her to a care home.

I only visited in the morning. The few times I visited in the afternoon or evening she was too agitated to enjoy my visit. I usually visited when an activity was going on and I would join my mom in the activity.

 

[special 1]

Hi there. Yes this an awful thing this sundowning as they call it. Like my husband as you say it can start anytime, they should actually call it witching hour as my husband starts off getting up and wandering about the house even though he has a balance issue where I have to shadow him where ever he goes. Then the aggressive side starts, verbal then the physical abuse starts. So I can understand how you feel . Goo Luck