Neighbour with dementia

bugslet

I'm wondering if anyone has any knowledge or experience of the following issue.

One of my neighbours has had dementia for a number of years and she is at the stage of having toilet accidents frequently, she can't follow a conversation fully though she'll pick up on some things, she can feed herself just about. She certainly can't cook, manage stairs or bathe by herself.

Her husband has been looking after her as he promised that he would never put her in a care home.

I pop over once or twice a week, my husband had dementia so the husband feels that I 'understand'.

The problem is twofold: firstly his health is really not good - he's been taken to hospital twice recently and discharged himself against the doctors wishes both times and secondly for at least a year, myself and other neighbours have heard him screaming at her, using foul language for a sustained period of time, by that I mean 15-20 minutes. Usually this relates to toilet accidents and trying to get her clean afterwards. When the windows are open, you can hear several houses away, even in winter if you pass you can hear. I have called his son and daughter and in turn they have rung social services and one time got the police to intervene. His wife understandable gets very distressed on these occasions.

I do believe that he wants the best for his wife, but it is all too much for him and he cannot cope on a physical and emotional level, however his son and daughter are at their wits end with worry over their mother. Social services don't seem to be able to get involved as he is her carer and legally (as I understand it), has the mental capacity to decide when she needs outside intervention.

Does anyone have experience of a similar situation either personally or from a professional perspective and a suggestion of what his grown up children can do?

Thank you.

Edit to add that everyone has tried to get him to get help in the morning at least, he just won't accept any help - he's rather stubborn. If a social worker were to call round he'd say yes to things to get him/her to go away and then not do whatever was suggested. There's always a reason why something wouldn't work.

marliepanda

I don't believe that anyone has the right to decide when someone else needs care especially in the circumstances you describe.

I was going to suggest contacting SS but you already have, I would continue to report as this is not good enough.

I would report it yourself, as it may be that the son/daughter as they are not personally witnessing the abuse (and it is abuse...) they are maybe sugarcoating or not giving a fulll picture. Police involvement seems inappropriate in this situation, she needs to be in a proper care environment.

Keep_pedalling

Your local authority should have a vulnerable adults department and they need to be contacted without delay by the children.

charlie3090

Is there a dementia crisis team in your area? ,
these were the people who sorted everything out for us when the dementia was too severe for us to cope with,
we were referred after several heated arguemnts with various doctors.
long story short, the dementia crisis team were fab,really good, they
arranged a couple of weeks respite care to give us a rest and it was decided while dad was in the care home that he couldnt ever return home even with carers as the dementia was too severe.

bugslet

marliepanda wrote: »

I don't believe that anyone has the right to decide when someone else needs care especially in the circumstances you describe.

I was going to suggest contacting SS but you already have, I would continue to report as this is not good enough.

I would report it yourself, as it may be that the son/daughter as they are not personally witnessing the abuse (and it is abuse...) they are maybe sugarcoating or not giving a fulll picture. Police involvement seems inappropriate in this situation, she needs to be in a proper care environment.

They have witnessed what is going on and I don't think they are sugar coating. I will continue to report it so there is at least a log. I know the son has told them that if anything happens he will hold them - social services - responsible. I don't know the legality of that, but obviously the son was upset at the time.

Thanks marlie

Keep_pedalling wrote: »

Your local authority should have a vulnerable adults department and they need to be contacted without delay by the children.

I will look that up for them. They are both nice people, but not confident shall we say, at dealing with authority.

charlie3090 wrote: »

Is there a dementia crisis team in your area? ,
these were the people who sorted everything out for us when the dementia was too severe for us to cope with,
we were referred after several heated arguemnts with various doctors.
long story short, the dementia crisis team were fab,really good, they
arranged a couple of weeks respite care to give us a rest and it was decided while dad was in the care home that he couldnt ever return home even with carers as he dementia was too severe.

Dementia crisis team - another one I hadn't heard of, I will look into that as well.

arielsmelody

One problem might be money - somebody has to pay for a carer, either privately or through the local authority. Unless one of the adult children has an LPA for finances, that would mean the husband would have to fill in an assessment form for the local authority, and that might be a big sticking point for him.


I agree with other people - the children need to be sorting this out, they are the only ones who have any chance of making their dad face up to things.

spadoosh

If the police left her in his care they clearly thought there isnt an issue in terms of safe guarding.

Imagine caring for someone 24/7 with dementia and trying your best for it to be suggested youre not capable by people who dont appear to do that much to help?

The guy feels completely isolated. Hes taken the burden of care upon himself because he knows the outcome if he doesnt. "see ya mum, have a great time, ill see you again next christmas"

I shouted at my daughter the other day because she took her nappy off and then proceeded to wet the bed. Someone should take her off me because im an abuser clearly. :cool:

The best carers i know arent the ones that dont shout and do everything by the book but the ones that completely understand the situation and the person and play to those personalities. Reminds of the guy i know who cared for his wife with severe dementia for over 20 years. They nearly put him in jail because he strapped her in her armchair. They offered him respite (he was in dire need of it) and got carers in, they ended up in a&e 3 times because she kept throwing herself out of her chair and in to the coffee table. They tried moving the coffee table but they couldnt get her to relax after that. The husband suggested she liked the coffee table being where it was. He knew excatly what he was doing and had to do and he was by far the best person to care for her, his methods werent PC but she died how i know she wanted (i saw her personality change when she went dancing, her eyes lit up, just as they would when her husband walked through the door once he took up his hobbies again after getting decent respite in place for him), in her home, in her chair in his arms. You need to be so careful if youre even remotely thinking of denying someone that for the sake of what is 20 minutes out of the 1440 minutes in a day.

Not only would it have been detrimental to her to put her in a 'more suitable care environment' it wouldve destroyed him. He got the support he needed. It helped him better prepare for life without her. It was a huge win all round. It couldve been terrible if the pencil pushers who tried to get her in a home got their way.

marliepanda

I highly doubt you shouted and swore at your daughter for 20 minutes for wetting the bed.

If you did, then yes, that is abuse! That is what was said in the OP, do not trivialise it with 'oh looking after someone is super hard you guys'

I have been there, I have cared for my Grandad, not once did I swear at hime for soiling himself!

bugslet

spadoosh wrote: »

If the police left her in his care they clearly thought there isnt an issue in terms of safe guarding.

Imagine caring for someone 24/7 with dementia and trying your best for it to be suggested youre not capable by people who dont appear to do that much to help?

The guy feels completely isolated. Hes taken the burden of care upon himself because he knows the outcome if he doesnt. "see ya mum, have a great time, ill see you again next christmas"

I shouted at my daughter the other day because she took her nappy off and then proceeded to wet the bed. Someone should take her off me because im an abuser clearly. :cool:

The best carers i know arent the ones that dont shout and do everything by the book but the ones that completely understand the situation and the person and play to those personalities. Reminds of the guy i know who cared for his wife with severe dementia for over 20 years. They nearly put him in jail because he strapped her in her armchair. They offered him respite (he was in dire need of it) and got carers in, they ended up in a&e 3 times because she kept throwing herself out of her chair and in to the coffee table. They tried moving the coffee table but they couldnt get her to relax after that. The husband suggested she liked the coffee table being where it was. He knew excatly what he was doing and had to do and he was by far the best person to care for her, his methods werent PC but she died how i know she wanted (i saw her personality change when she went dancing, her eyes lit up, just as they would when her husband walked through the door once he took up his hobbies again after getting decent respite in place for him), in her home, in her chair in his arms. You need to be so careful if youre even remotely thinking of denying someone that for the sake of what is 20 minutes out of the 1440 minutes in a day.

Not only would it have been detrimental to her to put her in a 'more suitable care environment' it wouldve destroyed him. He got the support he needed. It helped him better prepare for life without her. It was a huge win all round. It couldve been terrible if the pencil pushers who tried to get her in a home got their way.

Spadoosh, I thought I had made it clear that my concern was not entirely for her, but also for him. He collapsed last week on the floor, for the second time in two weeks. His wife did not have the ability to take the phone to him.

I have seen him over the last 5 years turn from someone in reasonable health, to a very ill man, he is literally grey. He isn't isolated beyond of his own making. His children see him regularly, by that I mean more than once a week each. One lives three streets away, the other less than a mile

Neither of his children would be once a year visitors; his daughter has recently given up her job to try and take more care of his wife, but with three school age children, her hours are limited to the time they are in school and limited to what her Dad will allow her to do.

I also made it very clear that everyone knows that he is doing the caring out of love and a promise made.

However, there is more than 20 minutes of shouting, it goes on in spasms through the day. I could write a three page post, but I'm trying to not be too identifying (probably failed).

I've seen a very vulnerable woman crying, afraid, asking ( as well as she can) not to be near him. He has choices, she has none. I know his children are worried about him losing his temper and hurting her - I can't comment on that as I haven't witnessed anything. However it's very distressing to watch for both their sakes.

spadoosh

marliepanda wrote: »

I highly doubt you shouted and swore at your daughter for 20 minutes for wetting the bed.

If you did, then yes, that is abuse! That is what was said in the OP, do not trivialise it with 'oh looking after someone is super hard you guys'

I have been there, I have cared for my Grandad, not once did I swear at hime for soiling himself!

Im not trivialising it in the slightest. The guy is clearly in need of help that does not mean he is incapable of caring for his wife though.

People differ, me and my partner swear quite a lot (not in front of child of course ) . Im just not someone who thinks shouting and swearing is defined as abuse. Its circumstantial. If i have to clean up poo, ill swear and shout. Like i said its a 20 minute snippet of 1440 minute days.

spadoosh

bugslet wrote: »

Spadoosh, I thought I had made it clear that my concern was not entirely for her, but also for him. He collapsed last week on the floor, for the second time in two weeks. His wife did not have the ability to take the phone to him.

I have seen him over the last 5 years turn from someone in reasonable health, to a very ill man, he is literally grey. He isn't isolated beyond of his own making. His children see him regularly, by that I mean more than once a week each. One lives three streets away, the other less than a mile

Neither of his children would be once a year visitors; his daughter has recently given up her job to try and take more care of his wife, but with three school age children, her hours are limited to the time they are in school and limited to what her Dad will allow her to do.

I also made it very clear that everyone knows that he is doing the caring out of love and a promise made.

However, there is more than 20 minutes of shouting, it goes on in spasms through the day. I could write a three page post, but I'm trying to not be too identifying (probably failed).

I've seen a very vulnerable woman crying, afraid, asking ( as well as she can) not to be near him. He has choices, she has none. I know his children are worried about him losing his temper and hurting her - I can't comment on that as I haven't witnessed anything. However it's very distressing to watch for both their sakes.

No i got that you where concerned for him too.

OK so theres more shouting. So is it worse than you made out then?

Youve also seen someone with a mental illness displaying all the signs of someone with a mental illness.

The best way to help her or both of them, imo, is to focus on helping him. It seems clear he doesnt want 'help' per se but things would be better if he was helped. Find a way to help him without him thinking its help or him not being able to cope. Everything thats happened so far looks like hes being made to feel inadequate, you dont get cooperation with that method you get walls and barriers. (ETA, id say there always a call for social services, mainly for the contacts but that said you want as much family involvement as possible because its very easy to say things arent being done and they need something which isnt beneficial to anyone involved ie a care home, it might be needed, dont assume thats the best outcome though, its not if she goes in and dies a week later only for him to go in to a spiral for not doing 'right' by her)

Theres lots of rule books and guidelines to follow, the reality is though dementia is personal and completely individual due to the nature of it effecting the mind.