Dreading the evenings

[Lin B]

My OH is getting confused almost every evening about where he is. He clearly believes our house is a place that he works at. He talks constantly about having to get home and how he will have to walk or catch a train as he can't drive any longer. He thinks our little 3 bed terrace is much bigger than it is and tells me it's a maze. He goes into the kitchen to find the loo which is upstairs and is clearly disorientated until I actually get him to go to bed which gets earlier and earlier. He won't go to bed without me which is very annoying. In the morning he seems to understand that he has been confused and then tells me how scared he is that he will be put in a home. I try reassuring him morning and evening but this delusion is repeated every day now. It is rare if we get an evening without it. On top of that he still thinks I am one of 'several people ', all called Lin who apparently work alongside him. I know it's not his fault and that I should try and cater to his reality but I find it so hard to do that over and over again. At his neurologists suggestion we have tried switching the times of his Trazadone medication but it doesn't seem to make any difference. I know there isn't anything that can be done but I needed to vent so thank you for this forum which has allowed me to get things off my chest tonight.

 

[DeeCee7]

Oh gosh @Lin B this is exhausting for you to deal with, night after night. Sundowning is a very common issue, and you may find some tips if you do a search on here, and I am sure others will be along with suggestions. It’s a dreadful situation and you have my utmost sympathy. I hope it’s helped to share how you feel. x

 

[maggie6445]

Oh @Lin B , I empathize. My OH has been like that for months. He always asks if there's a toilet in this building and I have to take him upstairs. He regularly doesn't recognise our home and yes , there's a team of me as well. The others aren't as nice as me!
This isn't just a sundowning thing ,it is constant. When I park on the drive I have to keep telling him to get out of the car as we are home. He just doesn't recognise home anymore.
He doesn't recognise our reflections in the mirror and will try to socialise with us.
It's sad, but I'm used to it now and I try to see the humour in it.

 

[Stella22]

Hi first time on .yes I also dread night
From late afternoon really. Also he's alcohol
As.weĺl vascular dementia
So so hard
Nite godbless x

 

[Jay Ross]

Hi first time on .yes I also dread night
From late afternoon really. Also he's alcohol
As.weĺl vascular dementia
So so hard
Nite godbless x

 

[Jay Ross]

Hi, first time I've been on the forum in the middle of the night. Just wanted to speak to someone. I've had horrible vomiting bug, trying to recover. Coincidentally, but fortunately, husband is due to go to respite care tomorrow - later today- so yesterday despite feeling like death I managed to get all his stuff packed, meds sorted, lists drawn up, clothes laid out. Just heard noises in his bedroom, he's opened and unpacked suitcase, dressed himself in an assortment of clothes from it, and is irritated that I was just leaving him to do everything himself since, he explained, it was 9am. It is pitch dark outside, freezing cold, and I am so angry at the absolute futility of all this. I know he's ill, but just now, for the first time in all these years of being the reliable little carer, I am ill too, yet there is no-one to care for me and I am so tired. I read, a lot, that we are meant to meet them where they are, but just for once I'd like someone to meet me, where I am. Which is, currently, sitting at my desk too filled with anger to go back to bed and sleep. Always, up to now, there has been something funny to find in every daft/sad situation but tonight, now, I can find nothing funny anywhere.

 

[2ndAlto]

Hi, first time I've been on the forum in the middle of the night. Just wanted to speak to someone. I've had horrible vomiting bug, trying to recover. Coincidentally, but fortunately, husband is due to go to respite care tomorrow - later today- so yesterday despite feeling like death I managed to get all his stuff packed, meds sorted, lists drawn up, clothes laid out. Just heard noises in his bedroom, he's opened and unpacked suitcase, dressed himself in an assortment of clothes from it, and is irritated that I was just leaving him to do everything himself since, he explained, it was 9am. It is pitch dark outside, freezing cold, and I am so angry at the absolute futility of all this. I know he's ill, but just now, for the first time in all these years of being the reliable little carer, I am ill too, yet there is no-one to care for me and I am so tired. I read, a lot, that we are meant to meet them where they are, but just for once I'd like someone to meet me, where I am. Which is, currently, sitting at my desk too filled with anger to go back to bed and sleep. Always, up to now, there has been something funny to find in every daft/sad situation but tonight, now, I can find nothing funny anywhere.

Oh Jay Ross, I feel your pain / hurt / anger and exhaustion. I hope you can get a good rest while your husband is in respite. I was thinking a couple of days ago - for most people, an illness with support may feel difficult but an illness when you STILL have to support and be continually on watch for your PWD is almost unbearable. And he has no idea....I know, not his fault etc etc but it is b. hard. Sending you hugs from this downunder end of the world

 

[Lin B]

Oh @Lin B , I empathize. My OH has been like that for months. He always asks if there's a toilet in this building and I have to take him upstairs. He regularly doesn't recognise our home and yes , there's a team of me as well. The others aren't as nice as me!
This isn't just a sundowning thing ,it is constant. When I park on the drive I have to keep telling him to get out of the car as we are home. He just doesn't recognise home anymore.
He doesn't recognise our reflections in the mirror and will try to socialise with us.
It's sad, but I'm used to it now and I try to see the humour in it.

Hi. Like you, while my OH is worse in the evenings it also happens during the day as well. If we are out of the house he is ok but he just clearly associates home with being his work place. He hasn't worked for about 8 years. I try and find things for him to do round the house to make him feel useful but I'm not sure if this is making the 'work' situation worse. This morning he has told me that he will probably get the sack because he 'got it all wrong ' last night. I wonder what would happen if I told him he was fired.

 

[Lin B]

Hi, first time I've been on the forum in the middle of the night. Just wanted to speak to someone. I've had horrible vomiting bug, trying to recover. Coincidentally, but fortunately, husband is due to go to respite care tomorrow - later today- so yesterday despite feeling like death I managed to get all his stuff packed, meds sorted, lists drawn up, clothes laid out. Just heard noises in his bedroom, he's opened and unpacked suitcase, dressed himself in an assortment of clothes from it, and is irritated that I was just leaving him to do everything himself since, he explained, it was 9am. It is pitch dark outside, freezing cold, and I am so angry at the absolute futility of all this. I know he's ill, but just now, for the first time in all these years of being the reliable little carer, I am ill too, yet there is no-one to care for me and I am so tired. I read, a lot, that we are meant to meet them where they are, but just for once I'd like someone to meet me, where I am. Which is, currently, sitting at my desk too filled with anger to go back to bed and sleep. Always, up to now, there has been something funny to find in every daft/sad situation but tonight, now, I can find nothing funny anywhere.

Hi Jay Ross I hope you get to feel better soon. Its awful when as a carer you are ill yourself . There is no empathy from OH any longer. If I tell him that I am not feeling well he always tells me that he is feeling worse. So we struggle through. Like you I find it so hard to meet him in his reality. Its like my reality doesn't exist any longer. I am pleased you are getting some respite and wish you a speedy recovery.

 

[maisiecat]

Hi @Jay Ross you are exhausted and unwell and what is a burden on ordinary days is impossible when you are unwell.
I can now do the living in his world but that is because he is in a Nursing home and I no longer have to manage the other behaviours. When you are trying to cope with everything its impossible to be patient. My husband couldn't find the toilets in our house so urinated in the waste paper bins even the wicker ones!.
Take some rest while he is in respite and look to how you want the future managed. I know so many people want to care for their person to the end, I did, but we hit crisis and the decision was taken from me. Looking at it now with some time having passed his quality of life is much better in the Home and our relationship is warm and companiable.
Best wishes

 

[Grannie G]

Welcome @Stella22 I hope you will find the forum helpful and supportive.

Please post here when you need support.

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

 

[Grannie G]

Hello @Jay Ross

I hope your husband gets to respite care and you will have the time and energy to look after yourself.