Husband distraught every Wednesday that he doesn't leave the care home for good

Anna Louise

New member
May 21, 2024
8
0
Hi. My husband lives in a care home - he has mixed dementia and has become too aggressive to live at home. He is fit and active and still very eloquent. He always believes that he is coming home for good every Wednesday at 3.15pm. At 3.00pm every Wednesday he puts his boots on and waits for me to turn up with boxes to pack everything into. He plans for the Wednesday 3.15 thing all through the week. It is terrible. Every week it doesn't happen he is totally distraught. He sends me texts (he's still brilliant with his iPhone) saying "I thought you loved me", "yet again you have broken my heart", "I don't know what I've done to deserve this" - just dozens of heartbreaking messages. Sometimes he sends me videos of himself sobbing. Yet again Wednesday is almost here and I am already feeling so upset. I've had advice to try distraction but it doesn't work at all. He knows what day it is and he's already texting me saying to can't wait to see me tomorrow, when I come to take him home for good. This is breaking my heart every week. Last week I just texted and said that I couldn't go because I was ill. He was distraught. Every Thursday he does a reset and starts planning for the next Wednesday. Sorry this is long but every week this is so traumatic, just thinking of him being so sad is killing me. Has anyone had anything similar? Any advice at all would be great.
 

Kevinl

Registered User
Aug 24, 2013
6,979
0
Salford
Never apologise to us on here, long post though it was it just breaks my heart just reading it all. Well done you is all I can say, that and thank you on his behalf I'm sure. K
 

Knitandpurl

Registered User
Aug 9, 2021
860
0
Lincolnshire
Hi. My husband lives in a care home - he has mixed dementia and has become too aggressive to live at home. He is fit and active and still very eloquent. He always believes that he is coming home for good every Wednesday at 3.15pm. At 3.00pm every Wednesday he puts his boots on and waits for me to turn up with boxes to pack everything into. He plans for the Wednesday 3.15 thing all through the week. It is terrible. Every week it doesn't happen he is totally distraught. He sends me texts (he's still brilliant with his iPhone) saying "I thought you loved me", "yet again you have broken my heart", "I don't know what I've done to deserve this" - just dozens of heartbreaking messages. Sometimes he sends me videos of himself sobbing. Yet again Wednesday is almost here and I am already feeling so upset. I've had advice to try distraction but it doesn't work at all. He knows what day it is and he's already texting me saying to can't wait to see me tomorrow, when I come to take him home for good. This is breaking my heart every week. Last week I just texted and said that I couldn't go because I was ill. He was distraught. Every Thursday he does a reset and starts planning for the next Wednesday. Sorry this is long but every week this is so traumatic, just thinking of him being so sad is killing me. Has anyone had anything similar? Any advice at all would be great.
Oh gosh, this is so awful- for both of you. I don’t blame you for not going last week. My OH is still at home so I have no advice to offer, but I do have lots of sympathy. It’s amazing how some things they cannot remember from one moment to the next but they can remember others and fixate on them. I sincerely hope someone can come up with a suggestion that works here. Is there someone else who could visit on a Wednesday, (thoughts here of a possible switch to hosting mode on his part), or even visiting and taking him out for some activity he enjoys? The tears on this journey could fill an ocean.
 

maisiecat

Registered User
Oct 12, 2023
407
0
Hi @Anna Louise ,I so feel for you it must be so upsetting. My husband is also in a Nursing home and he also is relatively high functioning. He also is too aggressive during the night hours to be at home.
I only have to deal with repeat requests to come home and intensive planning with it. I cannot imagine how stressful it is to know the same pattern will be repeated. I have the same feeling of letting my husband down.
All I can advise is to try and get the home to put activities in place to distract him on Wednesdays.
 

Anna Louise

New member
May 21, 2024
8
0
Oh gosh, this is so awful- for both of you. I don’t blame you for not going last week. My OH is still at home so I have no advice to offer, but I do have lots of sympathy. It’s amazing how some things they cannot remember from one moment to the next but they can remember others and fixate on them. I sincerely hope someone can come up with a suggestion that works here. Is there someone else who could visit on a Wednesday, (thoughts here of a possible switch to hosting mode on his part), or even visiting and taking him out for some activity he enjoys? The tears on this journey could fill an ocean.
Thanks, they sound like good suggestions although there isn't anyone who could visit on a Wednesday unfortunately. I am going to try and get him booked onto an activity day for Wednesdays - they run from 10am to 3pm, so by the time I had him back at the care home it would easily be 4 o'clock and he should be tired by then. So that would get us past the dreaded 3.15. :confused:
 

Anna Louise

New member
May 21, 2024
8
0
Hi @Anna Louise ,I so feel for you it must be so upsetting. My husband is also in a Nursing home and he also is relatively high functioning. He also is too aggressive during the night hours to be at home.
I only have to deal with repeat requests to come home and intensive planning with it. I cannot imagine how stressful it is to know the same pattern will be repeated. I have the same feeling of letting my husband down.
All I can advise is to try and get the home to put activities in place to distract him on Wednesdays.
Thankyou. Yes, good idea, although there seems to be nothing on earth that will distract him from the Wednesday thing. His memory is terrible with everything else!
 

Banjomansmate

Registered User
Jan 13, 2019
5,607
0
Dorset
The problem with that idea is whether you could get him to go back into the home? Have you taken him out before on a different day?
 

Anna Louise

New member
May 21, 2024
8
0
The problem with that idea is whether you could get him to go back into the home? Have you taken him out before on a different day?
Yes, I take him out most days. We go for walks and visit cafes and garden centres - stuff like that. He always goes back in happily. I don't visit on Wednesdays any more though because I'm too anxious about what will happen when we get to 3.15.
 

Pollywobble

Registered User
Nov 13, 2023
121
0
You have my greatest sympathy. Your situation is very similar to mine: in a home due to aggressive (& suicidal threats), yet is quite active despite advanced mixed dementia. My man asks to go home every day and won't be distracted. It breaks my heart, so I have an idea how you feel. His Care Home suggested taking him for visits home, which I have done a few times. Would that be an option for you? (Except Wednesdays!) Good luck.
 

canary

Registered User
Feb 25, 2014
25,370
0
South coast
Mmmm........
Taking him for a visit home could massively backfire if he thinks he is coming home permanently and then refuses to go back to the care home.

How long has he been living in the care home? When mum moved into the care home she spent the first 6 weeks "packing to go home", but once she settled it stopped
 

Jan48

Registered User
Apr 25, 2022
136
0
Hi @Anna Louise ,I so feel for you it must be so upsetting. My husband is also in a Nursing home and he also is relatively high functioning. He also is too aggressive during the night hours to be at home.
I only have to deal with repeat requests to come home and intensive planning with it. I cannot imagine how stressful it is to know the same pattern will be repeated. I have the same feeling of letting my husband down.
All I can advise is to try and get the home to put activities in place to distract him on Wednesdays.
I am very interested in your post. If your husband is highly functional, How did you get him to consent to live in a care home.? Am asking, my husband is undiagnosed and highly functional. OK during the day but behaviour and fixation are more challenging at night.
 

maisiecat

Registered User
Oct 12, 2023
407
0
Hi @Jan48 , my husband was not high functioning at admission. He had been taken to hospital following a fall ( he has late stage Parkinsons). The 3 months spent in hospital was one infection after another,one fall after another and he was incredibly frail at this point.
Thing is with my husband is the nights as with yours, he was delusional and psychotic and attacked me again and again. He has vascular dementia as well as Parkinsons dementia and I think at night his blood supply to his brain falls and this worsens his behaviour.
As to consent he doesn't consent to be there but the psychiatric team said he was an ongoing risk and sadly my lovely, gentle husband frequently attacks the night staff. He also is becoming more verbally aggressive to some staff.
One of the things you must prepare is you will be judged. There is little sympathy for those of us who have someone with a high functioning dementia, the dialogue is always you could do more. My desire has always been to prevent my husband from being sectioned and in hospital it was a close run thing. Once sectioned relatives have little say.
On Friday we visited a Parkinsons consultant who told him she could see no reason why he couldn't come home. I have been fire fighting since and this cost me £100 in taxi fares which will have to be recouped from this month's food bills.
You know your husband best,always go with your instincts they are seldom wrong. Good luck
 

Anna Louise

New member
May 21, 2024
8
0
You have my greatest sympathy. Your situation is very similar to mine: in a home due to aggressive (& suicidal threats), yet is quite active despite advanced mixed dementia. My man asks to go home every day and won't be distracted. It breaks my heart, so I have an idea how you feel. His Care Home suggested taking him for visits home, which I have done a few times. Would that be an option for you? (Except Wednesdays!) Good luck.
Gosh, I thought I had it hard but you're having to deal with it every day. It's all just so sad. Would you mind telling me how it went with the visits home, as I'm thinking of trying it with my husband?
 

Anna Louise

New member
May 21, 2024
8
0
Hi @Jan48 , my husband was not high functioning at admission. He had been taken to hospital following a fall ( he has late stage Parkinsons). The 3 months spent in hospital was one infection after another,one fall after another and he was incredibly frail at this point.
Thing is with my husband is the nights as with yours, he was delusional and psychotic and attacked me again and again. He has vascular dementia as well as Parkinsons dementia and I think at night his blood supply to his brain falls and this worsens his behaviour.
As to consent he doesn't consent to be there but the psychiatric team said he was an ongoing risk and sadly my lovely, gentle husband frequently attacks the night staff. He also is becoming more verbally aggressive to some staff.
One of the things you must prepare is you will be judged. There is little sympathy for those of us who have someone with a high functioning dementia, the dialogue is always you could do more. My desire has always been to prevent my husband from being sectioned and in hospital it was a close run thing. Once sectioned relatives have little say.
On Friday we visited a Parkinsons consultant who told him she could see no reason why he couldn't come home. I have been fire fighting since and this cost me £100 in taxi fares which will have to be recouped from this month's food bills.
You know your husband best,always go with your instincts they are seldom wrong. Good luck
This is terrible and you are right - you definitely do get judged. You sound like you're having a battle when you should be being supported. I have experienced similar. I really hope things calm down for you.
 

Anna Louise

New member
May 21, 2024
8
0
Mmmm........
Taking him for a visit home could massively backfire if he thinks he is coming home permanently and then refuses to go back to the care home.

How long has he been living in the care home? When mum moved into the care home she spent the first 6 weeks "packing to go home", but once she settled it stopped
Yes, it could be risky. He's been in the care home for eight months now and in many ways he seems settled - just not with this Wednesday thing. I guess I should be glad that he's happy for 6 days of the week and it's only Wednesdays that he's upset. I know other people have it a lot worse!
 

Pollywobble

Registered User
Nov 13, 2023
121
0
Gosh, I thought I had it hard but you're having to deal with it every day. It's all just so sad. Would you mind telling me how it went with the visits home, as I'm thinking of trying it with my husband?
I had to prepare beforehand with lots of repeating that we were going back to the care home afterwards. The first time he didn't even take his coat off because he understood he was on a visit. The second time I made the mistake of going somewhere else first. The result was he didn't recognise home. The next time I did lots of preparation again, repeating that it was a visit and had a lovely time. Last time it was ok until I forgot to show him his garage so he was really awkward about going back, but he also was coming down with something. So I've learned that I've got to make sure everything is OK before we go and when we get there. Its definitely been worth it for us though, and I will take him again.