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Respite break/assessment - best approach

Littlebear

Registered User
Jan 6, 2017
121
Devon
My husband has FTD, is unable to speak and has violent outbursts and rages. Periodically his medication needs to be tweaked as it ceases to be effective. His MH practitioner, who is incredibly good, has said he needs to do this now but that he no longer feels it is safe to do this at home & has recommended that he goes into a nursing home for 2-4 weeks whilst this is done. It will also give me some respite which after 3+ years of 24/7 caring is much needed.

However I still have very mixed feelings about him going. I’ve now been told that he will have to isolate in his room for 14 days. This is going to be horrendous for him as the highlights of his day are going for walks (at least two) & a visit to the pub or local cafe. He constantly wanders between the house & garden.

He still has a level of understanding & will know where he is. At the moment he knows nothing about these plans. He’s due to go in on Thursday. Do I just say we’re going to the doctor and drop
him off or should I prepare him in some way? I don’t know what to do for the best. I worry that if I tell him it will cause him a lot of anxiety & his behaviour will worsen but I’m also worried that he will feel abandoned if I just leave him there. I’m already feeling very tearful at the prospect of him going as I know it’s going to be very frightening for him but the reality is that if we can’t get his medication right it won’t be safe for either of us if he stays at home.

Can anybody offer practical advice? I’m speakIng to the nursing home manager on Monday so will ask her but trying to decide what to do for the best is making a difficult situation even harder.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,307
Yorkshire
hi @Littlebear
this is tough on you

if your husband will accept an explanation about an assessment of his meds being needed, maybe mention that the doctor wants to do this in a few days but don't mention the respite stay ... just so your husband 'knows' about the tweak

on the day of the move into respite, just go out as usual, maybe mention you want to try a new place for coffee after a walk
when you get there hopefully the staff will be helpful ... depending on how your husband is (you are best placed to know this) either say it's a hotel to stay in for the meds assessment and to be pampered, and you wanted it to be a lovely surprise for him (or whatever he might accept) or slip away leaving him to the staff (seing how he reacts is, in a way, part of the assessment)
you might leave some cards and gifts for him, for the staff to give him each day so he knows you are thinking of him ... maybe write a brief explanation in the cards so he has the chance to grasp why he's staying

if you can't manage to pack for him before he moves, go back later that day with his things and just leave them with the staff

wishing you both well
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
hi @Littlebear
this is tough on you

if your husband will accept an explanation about an assessment of his meds being needed, maybe mention that the doctor wants to do this in a few days but don't mention the respite stay ... just so your husband 'knows' about the tweak

on the day of the move into respite, just go out as usual, maybe mention you want to try a new place for coffee after a walk
when you get there hopefully the staff will be helpful ... depending on how your husband is (you are best placed to know this) either say it's a hotel to stay in for the meds assessment and to be pampered, and you wanted it to be a lovely surprise for him (or whatever he might accept) or slip away leaving him to the staff (seing how he reacts is, in a way, part of the assessment)
you might leave some cards and gifts for him, for the staff to give him each day so he knows you are thinking of him ... maybe write a brief explanation in the cards so he has the chance to grasp why he's staying

if you can't manage to pack for him before he moves, go back later that day with his things and just leave them with the staff

wishing you both well
Thank you for your reply. It is so hard emotionally & even the practicalities need military organisation. I will mention to him the need to tweak his pills. I’ve already got lots of cards, presents, favourite treats etc on order I just don’t want him to feel I've abandoned him.

I was having serious doubts yesterday (a good day) but today has been pretty bad so I know I need to do it. His current meds are barely taking the edge off his rages. I think my biggest fear is that he won’t come back home.
 

MAMMYGRANNY

Registered User
Jan 26, 2016
66
Hi Littlebear,
Just read some of your posts and I am so sorry about what you are going through with the unpredictable rages from your husband. Mine also has Ftd with but with Parkinsonism so has become unable to move. He can still speak but he also would have difficulty making himself understood when under any stress such as being in hospital. However he has had a few stays before Covid and one since Covid came on the scene.
The approach I took was that there was no point in ramping up his anxiety in advance but told him he was going for a checkup and when we were there said they wanted him to stay in while they did the tests. I like you was in an awful state worrying about him feeling abandoned but in his case there was no choice as he had to go in for medical treatment. He did survive five days which was very stressful for both of us. The illness is in itself a nightmare.
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
Thanks MAMMYGRANNY for your response. Yes it is an awful disease & the rages are both frightening & exhausting. I’m currently sitting downstairs whilst my husband who went to bed two hours ago is still stomping around, slamming doors & hitting the walls. I’ll see what the Nursing Home says about your suggestion but I agree with you about not ramping up the anxiety. He’s always quite happy to go to the doctor although it was a struggle to get him to the flu clinic today! Are you still able to look after your husband at home? I’ve just got an awful feeling that mine isn’t going to be able to come home again.
 

MAMMYGRANNY

Registered User
Jan 26, 2016
66
Thanks MAMMYGRANNY for your response. Yes it is an awful disease & the rages are both frightening & exhausting. I’m currently sitting downstairs whilst my husband who went to bed two hours ago is still stomping around, slamming doors & hitting the walls. I’ll see what the Nursing Home says about your suggestion but I agree with you about not ramping up the anxiety. He’s always quite happy to go to the doctor although it was a struggle to get him to the flu clinic today! Are you still able to look after your husband at home? I’ve just got an awful feeling that mine isn’t going to be able to come home again.
[/QUOTE]
Littlebear I really feel for you it must be dreadful living with that level of aggression. Mine only gets aggressive when he's uncomfortable or tired but mostly around bowel problems. Constipation, thinks he's done it when he hasn't etc etc. Very difficult as it always happens when I'm alone with him. I have to hoist him and its a two person job. We have a carer three times a day to help me wash and change him but they are here at set times of course.
He thinks of hospital and nursing home as one and his main problem with being there relates to toileting naturally they can't spend hours dealing with it as they have other patients.
I hope your man will be allowed home once his medication has been adjusted. It feels like when you send your baby off to school the first day worrying all day are they OK. Usually they are and you have stressed yourself out worrying for nothing. Try to detach a little and just concentrate on the pracalities which, having to be done surreptitiously, are indeed a military operation!
I will be thinking of you on Thursday and praying all goes well for both of you.
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
Thanks MAMMYGRANNY for your response. Yes it is an awful disease & the rages are both frightening & exhausting. I’m currently sitting downstairs whilst my husband who went to bed two hours ago is still stomping around, slamming doors & hitting the walls. I’ll see what the Nursing Home says about your suggestion but I agree with you about not ramping up the anxiety. He’s always quite happy to go to the doctor although it was a struggle to get him to the flu clinic today! Are you still able to look after your husband at home? I’ve just got an awful feeling that mine isn’t going to be able to come home again.
Littlebear I really feel for you it must be dreadful living with that level of aggression. Mine only gets aggressive when he's uncomfortable or tired but mostly around bowel problems. Constipation, thinks he's done it when he hasn't etc etc. Very difficult as it always happens when I'm alone with him. I have to hoist him and its a two person job. We have a carer three times a day to help me wash and change him but they are here at set times of course.
He thinks of hospital and nursing home as one and his main problem with being there relates to toileting naturally they can't spend hours dealing with it as they have other patients.
I hope your man will be allowed home once his medication has been adjusted. It feels like when you send your baby off to school the first day worrying all day are they OK. Usually they are and you have stressed yourself out worrying for nothing. Try to detach a little and just concentrate on the pracalities which, having to be done surreptitiously, are indeed a military operation!
I will be thinking of you on Thursday and praying all goes well for both of you.
[/QUOTE]
Thanks MAMMYGRANNY for your response. Yes it is an awful disease & the rages are both frightening & exhausting. I’m currently sitting downstairs whilst my husband who went to bed two hours ago is still stomping around, slamming doors & hitting the walls. I’ll see what the Nursing Home says about your suggestion but I agree with you about not ramping up the anxiety. He’s always quite happy to go to the doctor although it was a struggle to get him to the flu clinic today! Are you still able to look after your husband at home? I’ve just got an awful feeling that mine isn’t going to be able to come home again.
Littlebear I really feel for you it must be dreadful living with that level of aggression. Mine only gets aggressive when he's uncomfortable or tired but mostly around bowel problems. Constipation, thinks he's done it when he hasn't etc etc. Very difficult as it always happens when I'm alone with him. I have to hoist him and its a two person job. We have a carer three times a day to help me wash and change him but they are here at set times of course.
He thinks of hospital and nursing home as one and his main problem with being there relates to toileting naturally they can't spend hours dealing with it as they have other patients.
I hope your man will be allowed home once his medication has been adjusted. It feels like when you send your baby off to school the first day worrying all day are they OK. Usually they are and you have stressed yourself out worrying for nothing. Try to detach a little and just concentrate on the pracalities which, having to be done surreptitiously, are indeed a military operation!
I will be thinking of you on Thursday and praying all goes well for both of you.
[/QUOTE]

Thank you. Xx
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
My husband went into the nursing home last Thursday & I feel dreadful. I’ve been desperate for a break but I’m hating it - all I want is to have him
back home. I can’t bare him not being here. The NH called me on Sunday asking if I’d like to speak to him. I was so excited at the prospect but all he did was shout &scream at me wanting to know why he was there. I tried to explain but he just put the phone down. The NH have said I can visit him in the garden but I’m so scared he will be angry again & want to come home with me. I don’t want him to be upset. I feel awful,.I’m constantly on the verge of tears - I just don’t know what to do for the best. When I said this they suggested we try a video call on Thursday but I know he’ll be angry with me again & I’m not sure I can cope with that.
 

canary

Registered User
Feb 25, 2014
13,641
South coast
Hi @Littlebear , you dont have to visit, video call or phone him.
This is only going to be for a few days, so treat it as respite. When OH went in for respite I did not contact him at all.
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
The respite break wasn’t a great success. He was meant to be away for 4 weeks but he was deteriorating so quickly I brought him home after just over 2 weeks. I visited him twice whilst he was away & both times he was angry & violent towards me. I had decided not to visit him again but just to FaceTime. When I spoke to him the following day I was so shocked by his decline that after a sleepless night I decided it was less stressful having him home than him being away. The SW & MH practitioner supported my decision & so the following day I picked him up.
The improvement started the moment he got home when he closed his mouth & stopped drooling, something he’d never done before. Within a few days of 3 short walks a day his mobility was almost back to where it was. Sadly that’s not the case with his incontinence & he is now incontinent which he wasn’t when he went in. After nearly 2 weeks that hasn’t improved & I suspect that will continue to be the case. The worse thing is his behaviour.

He’s always had violent outbursts but they now seem to be almost constant. I organised a morning carer for his return, I thought he’d accept it more easily having been cared for by professionals in the NH but he hits & pushes her and I’m not expecting her to stay. He tried to push her down the stairs this morning. He is also hitting & pushing me. I had expected him to have settled in by now but it’s getting worse. I spoke to the GP as I wondered if he had a UTI & he’s now on antibiotics as a precaution but it’s not helping although it has been only two days.

i just don’t know what to do. One of us is going to get hurt soon. I can’t bear the thought of him going into permanent care - he hated it, as did I. Visiting him was the worst thing I’ve ever had to do & I’m not sure I could do that on a regular basis but neither could I abandon him. I’ve thought of getting live in care at home but who is going to be prepared to care for him if subjected to constant physical abuse. I just don’t know what to.
 

Woo2

Registered User
Apr 30, 2019
2,775
South East
I don’t have any suggestions @Littlebear , I just wanted to say I’m sorry it’s been so hard on you and to send some hugs 🤗 It does sound that the options are limited, my worry is for you and your safety . Do you keep a phone on you in case ? Have you somewhere safe you can go ? A room with a lock if needed ? Hopefully someone else will be along soon with some better ideas . Take care
 

Littlebear

Registered User
Jan 6, 2017
121
Devon
Thank you. It’s an on-going problem but the intensity is just so much greater. I have taken all the precautions I can, I guess I accepted it as a ‘calculated risk’ but I’m just not sure how much longer I can carry on.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,307
Yorkshire
I'm sorry to read your update @Littlebear

I do appreciate how you must feel, wanting the best for your husband ..... however, your situation is not going to improve ... you need to be safe in your own home and any carer has the right to be safe when carrying out their duties ... it's very different being home alone with an aggressive/violent person than being in a care home environment where there are more staff, more space and access to specialist medics to support the staff

sorry, this isn't what you want to hear ... it's time for full time residential care for your safety and for your husband's ... if he harms you, you will not be able to deal with that immediate situation and will not be able to carry on trying to care for him .... as the lesser of 2 awful choices, please reconsider your decison and reach out to Social Services for more support

Admiral Nurses may be able to help support you
0800 888 6678,
 

canary

Registered User
Feb 25, 2014
13,641
South coast
Its hard @Littlebear , but deep down you know what the answer is.

No carer is going to be willing to work in such an unsafe environment, so you will be on your own with him.
SS can say that you are free to make unwise decisions, but if he injures you so that you end up in hospital he will have to move to residential care anyway.
Someone I know who is the wife of someone with FTD said "FTD will take one life, I wont let it take two"

xxx
 

Just me

Registered User
Nov 17, 2013
386
I worry for you @Littlebear. I’ve had recent experience when mum was out of control, banging windows, sweeping things on the floor, rampaging round the house.and this only lasted a couple of days.

She was admitted to hospital last Saturday for assessment. She’s been scared and frightened there but she was at home, the heart tearing thing is how much she’s missing me.

Fast forward to today when she was admitted to A&E and I felt if only I hadn’t called the crisis team....

However looking back at the daily notes I makeI see how bad it was and how I couldn’t calm her down. She was a danger to herself and me.

What would happen heaven forbid if your husband does harm you and you couldn’t get help?

I do feel I’ve abandoned mum and criticise myself for not being able to cope but sometimes you just have to let the professionals do the job they are trained to do.

Please take care x
 

maryjoan

Registered User
Mar 25, 2017
1,465
South of the Border
@Littlebear I have just read your post from beginning to end, and the responses from our other friends on here....
I respectfully suggest that you try to stand outside the situation and view it impartially - your dear husband is no longer with you - his mind does not think like yours does ( same goes for my situation).
If you put yourself outside the situation you would see that it is not tenable - he needs to be looked after by a team who are able to deal with his outbursts and who are not emotionally involved like you are.
I feel it is no longer about him - it is about you, and you cannot carry on like this.
Also, have you a plan 'b'? If you were to become ill or incapacitated what would happen to him? he would have to go into residential care.
This IS plan 'b' now - you are incapacitated by the strain of looking after him.

My OH is currently in his first respite care - I speak to him each day - I will not go and see him - because that is not the point.

Take care of yourself now, whilst you can - your job is done, you have done your best for as long as you can, you have shown courage and love, and no one could ask more of you.