I seem to have run out of options, I am looking after my husband who has FTD and the last year he has become really bad, in fact he has started to escape from the property, this has become bad since going into respite against my better judgement, he was neglected there, got out over a wall and disappeared at 9pm at night without me being told and it wa me that found him on the gps I have. He then eterioated due to this and has a real fear now that they are coming back for him (Prior to the home he was happy to wander around the town and i knew he would come back, now I can’t risk it) due to being so bad he has become more aggressive at night when I will not give him the car keys and the police become involved to an extent he was taken into hospital for a few days, he caught COVID and he did not see me for 2 weeks, I have brought him home and his illness has taken a turn I dont recognise, I tried live in care, the wrong person was sent and I had to get rid of them after one day, so he has had 3 traumatic changes in 4 weeks. I cant send him away, I am struggling to keep him safe at home and now being threatened by the dementia team who are telling me my LPA will be overturned and he will be taken to a home that can cope with him 9Sedated) and this could be anywhere in the country. I have no idea what to do. I am between a rock and a hard place. I cant cope on my own anymore, lhe cant cope with anyone living in and I refuse to put him in a home. Has anyone been in this position? Any ideas as I am at my wits end. thank you for reading
I dont know what to do
- Thread starter Berniemack
- Start date
Welcome @Berniemack
First of all can I ask what kind of help you are looking for? It sounds as if you are in an impossible situation and something will have to give.
I hate to say it but sedation might be the kindest action to help your husband. He is obviously deeply unhappy and confused. Sedation can be modified to suit the individual and could really help him. This would need to be in a 24/7 supervised placement in order for staff to observe hima at all times.
It doesn`t have to be permanent. He could be allowed home to you once his behaviours were modified.
First of all can I ask what kind of help you are looking for? It sounds as if you are in an impossible situation and something will have to give.
I hate to say it but sedation might be the kindest action to help your husband. He is obviously deeply unhappy and confused. Sedation can be modified to suit the individual and could really help him. This would need to be in a 24/7 supervised placement in order for staff to observe hima at all times.
It doesn`t have to be permanent. He could be allowed home to you once his behaviours were modified.
Sadly I have seen what sedation does to him and I can’t bear it, He is not unhappy and does not know he is confused, he just likes to wonder and get back to London where he lived all his life.I suppose I am looking for some help during the day, a sitter for a couple of hours so so at a time who can get to know him and befriend him during the day, but finding them is almost impossible.
I forgot to say that with FTD no medication works, so if he goes into a home it would be permanent and that is not what I want. If you have seen the film One flew over the Coockoos nest and remember how Jack Nicholson turned out then that is what I see with my husband, it’s inhumane. There has to be a middle ground somewhere??
Im sorry @Berniemack , you must feel that you are caught between a rock and a hard place.
Unfortunately, once wandering starts it does not better until they lose mobility. Often it starts quite innocuously - just going out for walks during the day, but can often spiral quite rapidly into going out at night and getting lost. This is what happened to mum - she too started by going out for walks during the day, but then suddenly started going out at night in the freezing cold, dressed only in her nightwear and banging on random peoples doors in the early morning because she was lost.
Once this happens, Im afraid that there are very few choices
1 - manage it yourself, which can become impossible
2 - get live-in care, which frequently does not work because the carer may well not be able to prevent them from going out either
3 - a secure care home
I do not know of any other choices
If you cannot prevent him from wandering (which puts him at high risk of coming to harm) and are not willing to move him to a care home, then yes, Social Services will override your wishes as, legally, they are the ones who hold the duty of care. They would probably apply to the Court of Protection for a legally binding ruling on where he should live and you are unlikely to have any say in it.
Please dont let it get to that.
Care homes are not all the same. I know that you have had a bad experience, but dont feel that they will all be like that. The one my mum was in was homely and caring and she thrived there once she had settled. I know it will be hard for you, but it would be much better if you could work with SS in finding a good home that can meet his needs
xxx
Unfortunately, once wandering starts it does not better until they lose mobility. Often it starts quite innocuously - just going out for walks during the day, but can often spiral quite rapidly into going out at night and getting lost. This is what happened to mum - she too started by going out for walks during the day, but then suddenly started going out at night in the freezing cold, dressed only in her nightwear and banging on random peoples doors in the early morning because she was lost.
Once this happens, Im afraid that there are very few choices
1 - manage it yourself, which can become impossible
2 - get live-in care, which frequently does not work because the carer may well not be able to prevent them from going out either
3 - a secure care home
I do not know of any other choices
If you cannot prevent him from wandering (which puts him at high risk of coming to harm) and are not willing to move him to a care home, then yes, Social Services will override your wishes as, legally, they are the ones who hold the duty of care. They would probably apply to the Court of Protection for a legally binding ruling on where he should live and you are unlikely to have any say in it.
Please dont let it get to that.
Care homes are not all the same. I know that you have had a bad experience, but dont feel that they will all be like that. The one my mum was in was homely and caring and she thrived there once she had settled. I know it will be hard for you, but it would be much better if you could work with SS in finding a good home that can meet his needs
xxx
Thank you for your advice from experience. Luckily the house is secure and he sleeps through the night. I am going to continue to try snd keep him at home, if he becomes immobile it will be easy, issue us with FTD it is the opposite from vascular dementia and I am hoping someone on this forum has experience if it so they may have sone ideas
Am I being too caring? ShouldI be harder and not care about the way my husband ends his life? It seems to me that all the authorities think I am being too emotional.
@Berniemack, sorry you had a bad experience of care homes. It is hard to have someone else share the caring if you've been doing it so long, but I think that's what you need for your husband. If he goes into care it will be horrible at first while his medication is sorted, but eventually I think he will improve and you can be a loving wife again and not a carer at their wits end.
You will still be caring for your husband wherever he is but in a care home there will be a team of people to help not just you.
You will still be caring for your husband wherever he is but in a care home there will be a team of people to help not just you.
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If you are struggling with your husband to keep him safe at home, then what do you think is going to happen when he inevitably gets worse?
You are fighting everybody who is trying to help you and the sooner you get him into a place where he can be settled for long enough for him to be comfortable, then you will both more at peace.
This really is about his needs to reduce the chaos in his life and not what you think you want for him. Whilst this maybe not what you want to hear, what is happening at the moment is headed for more problems if you don’t get this sorted sooner rather than later.
You are fighting everybody who is trying to help you and the sooner you get him into a place where he can be settled for long enough for him to be comfortable, then you will both more at peace.
This really is about his needs to reduce the chaos in his life and not what you think you want for him. Whilst this maybe not what you want to hear, what is happening at the moment is headed for more problems if you don’t get this sorted sooner rather than later.
There is no chaos in his life and sadly all the homes are the same. Reading about FTD and having the experience noise and disorder are the worst thing. He wants to be with me only and I am not being selfish or doing what I want for me I am just trying to do what he wants. As long as he settles by 5 pm which is is stating to do its getting better as he has had 6 weeks or disruption.
The people I am fighting don’t want to do what is best they just want him in a home as I am self funding it’s easy for them to put us in a box. He will not be at peace in a home he will be sedated every night as with FTD you can’t use medication and he needs to be in familiar surrounding not strangers and sadly people a lot worse than him.
I know you all mean well with the comments, but I feel there is no compassion anywhere and after looking after my mother for three years with a frontal temporal brain tumour and now my husband for 8 I Do know I am up against and if he becomes immobile it will be easier.
I forgot to say, is there nothing in between, there must be a way of finding sitters during the say for a couple of hours?
FTD deteriorates slowly his dramatic decline is the fault of the people who are trying to help as they are not listening to my views and knowledge and personality of the person, therefore can’t they be wrong in their decision making.
The home they told me that was so good they did not even know or have any experience of, the reason it was selected was because it had a room nothing else. Apparently too expensive for Social Services, a home was a selected for him for respite by someone just going through a list of homes, I could have done that, in fact neglect had been covered up at this home 5 months prior my husband arriving. Him escaping over a wall and being lost for an hour with damaged ribs is a serious safeguarding issue? That would not have happened at home.
The advice I have been getting from Social Services is to leave the front door open all night in case he climbs out of a window at home, is that good advice?
Why does it have to be a care home or live in care and thats it?
I feel I am missing something, I just can’t find it.
I am sorry to be going on but I have had constant conflicting information from the dementia team, gP and Social Services and my judgement has been clouded and I can’t trust anyone anymore.
All answers have been appreciated and I will not write again as I feel I have chosen a path which is unusual and not widely acceptable or understood.
Regards and many thanks
Bernice
FTD deteriorates slowly his dramatic decline is the fault of the people who are trying to help as they are not listening to my views and knowledge and personality of the person, therefore can’t they be wrong in their decision making.
The home they told me that was so good they did not even know or have any experience of, the reason it was selected was because it had a room nothing else. Apparently too expensive for Social Services, a home was a selected for him for respite by someone just going through a list of homes, I could have done that, in fact neglect had been covered up at this home 5 months prior my husband arriving. Him escaping over a wall and being lost for an hour with damaged ribs is a serious safeguarding issue? That would not have happened at home.
The advice I have been getting from Social Services is to leave the front door open all night in case he climbs out of a window at home, is that good advice?
Why does it have to be a care home or live in care and thats it?
I feel I am missing something, I just can’t find it.
I am sorry to be going on but I have had constant conflicting information from the dementia team, gP and Social Services and my judgement has been clouded and I can’t trust anyone anymore.
All answers have been appreciated and I will not write again as I feel I have chosen a path which is unusual and not widely acceptable or understood.
Regards and many thanks
Bernice
If your husband is self-funding then you can find sitters yourself and have them for whatever time you want. I'm wondering whether your husband would be helped by having more exercise / being out of the house more and whether what you should be looking for is an active young or younger man to take him out for long walks, perhaps swimming or to the gym. There are often volunteering opportunities in parks e.g. litter picking or gardening. I may be grasping at straws here but perhaps it would be worth a try.
Hello @Berniemack I wonder if you would find it helpful to contact either the Alzheimer's Society helpline or the Admiral Nurses for some advice. I have attached links for your information. I have found both to be helpful in the past.
www.alzheimers.org.uk
www.dementiauk.org
Contact us
Find out how to get in touch with Alzheimer's Society by phone, email, post or online.
www.alzheimers.org.uk
What is an Admiral Nurse and how can they help?
Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.
www.dementiauk.org
Thank you I will do so todayHello @Berniemack I wonder if you would find it helpful to contact either the Alzheimer's Society helpline or the Admiral Nurses for some advice. I have attached links for your information. I have found both to be helpful in the past.
Contact us
Find out how to get in touch with Alzheimer's Society by phone, email, post or online.What is an Admiral Nurse and how can they help?
Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.
I have looked and looked and there are no groups or agencies with space, I have been so proactive and that’s why I am so lost for ideas
I am assuming that your husband is relatively young, and fit. I'm not suggesting groups but a companion / befriender that could take him out. One member of this forum advertised for a male companion to take her husband out twice a week and found two. One wouldn't accept any payment but she paid for his lunch. I wonder whether a male student who doesn't have many contact hours might fit the bill or, alternatively, a stay at home dad who has a bit of free time. I may be completely barking up the wrong tree thinking that more exercise during the day will help but, clearly, it's exhausting looking after someone who wants to go out all the time and, at the very least, you would have a much-needed break when he is out.
If only I could find such a person, also I am so busy running around watching what he is doing time is a problem so its a cat h 22
If the nights are the worst thing then you could get a waking night carer for a couple of nights a week. S/he might not be able to stop your husband going out but s/he could go with him.
Whether a carer takes your husband out during the day or at night there are potential risks to consider if they go out by car. Your husband should *not* drive him/her anywhere and the carer must have appropriate (probably business) insurance if he drives his/her own car. I think that you'd have to satisfy yourself that your husband could safely be taken out in the carer's car. If your husband is likely to be agitated, domineering or agitated in the car, not wear his seatbelt or try to take over the driving or get out of the car or do anything that might cause an accident then I really wouldn't take the risk.
There is another member on this forum who eventually had to move her husband with FTD to a home because of his agitation (constant wandering with associated difficult behaviours) and the broken nights. She had reached breaking point and couldn't go on caring for him at home.
You are in an incredibly difficult situation. I think that you need to try to work with SS to find a solution which both you and they are happy with. If you dig your heels in then they will override your wishes. You say that your husband only wants to be with you but, currently, looking after him on your own isn't working, and you do need to get some support from somewhere (family, paid or a volunteer). It's possible that your husband will become more settled as time goes on and I would suggest this to SS.
I'm confused about whether it's the days or the nights which are the problem. You say that you had to call the police one night but also say that your husband sleeps through the night. If he wanders during the day then could you use a tracker to monitor his movements? Is he safe on the roads and it's just a matter of him getting lost? Are you too exhausted to go out with him, perhaps following him at a distance? Could you go out in the car with him at night?
I think that the member who advertised for a companion did so on Next Door. You could approach local churches or advertise on local WhatsApp groups or local forums. If there is a local university you could approach it. Many students need to work during term time. Do you have a friend or family member who could help you with this?
Whether a carer takes your husband out during the day or at night there are potential risks to consider if they go out by car. Your husband should *not* drive him/her anywhere and the carer must have appropriate (probably business) insurance if he drives his/her own car. I think that you'd have to satisfy yourself that your husband could safely be taken out in the carer's car. If your husband is likely to be agitated, domineering or agitated in the car, not wear his seatbelt or try to take over the driving or get out of the car or do anything that might cause an accident then I really wouldn't take the risk.
There is another member on this forum who eventually had to move her husband with FTD to a home because of his agitation (constant wandering with associated difficult behaviours) and the broken nights. She had reached breaking point and couldn't go on caring for him at home.
You are in an incredibly difficult situation. I think that you need to try to work with SS to find a solution which both you and they are happy with. If you dig your heels in then they will override your wishes. You say that your husband only wants to be with you but, currently, looking after him on your own isn't working, and you do need to get some support from somewhere (family, paid or a volunteer). It's possible that your husband will become more settled as time goes on and I would suggest this to SS.
I'm confused about whether it's the days or the nights which are the problem. You say that you had to call the police one night but also say that your husband sleeps through the night. If he wanders during the day then could you use a tracker to monitor his movements? Is he safe on the roads and it's just a matter of him getting lost? Are you too exhausted to go out with him, perhaps following him at a distance? Could you go out in the car with him at night?
I think that the member who advertised for a companion did so on Next Door. You could approach local churches or advertise on local WhatsApp groups or local forums. If there is a local university you could approach it. Many students need to work during term time. Do you have a friend or family member who could help you with this?
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