What are the key things to say?

[Kath610]

My husband is in the late stages of Alzheimer's and we have a visit from a Social Worker from Adult Social Care later this week.
I need to know the key points I should tell her to make it clear that what I need is for my husband to have some respite time in a care home, with a view to a permanent placement later in the year. I don't want to be fobbed off with talk of carers in the home (I have already researched this), Day Centres (he refuses to go) or continued visits from representatives from ASC, the Alzheimer's Society, DISS and the Memory Clinic. They have all visited and they have been really good and helpful but he is beyond that now.
I have researched the care homes in our area, asked locally for personal recommendations and have two of them in mind.
I have emailed a report to the Social Worker , saying exactly what my husband is like at this time. I believe she has also received a very desperate message I sent to the representative from the Alzheimer's Society just before Christmas.
I would really appreciate suggestions from people on here who have done this already - I am desperate for help and respite from my husband, who is driving me mad.
Thank you in advance for any suggestions

 

[ShivyDevon]

My husband is in the late stages of Alzheimer's and we have a visit from a Social Worker from Adult Social Care later this week.
I need to know the key points I should tell her to make it clear that what I need is for my husband to have some respite time in a care home, with a view to a permanent placement later in the year. I don't want to be fobbed off with talk of carers in the home (I have already researched this), Day Centres (he refuses to go) or continued visits from representatives from ASC, the Alzheimer's Society, DISS and the Memory Clinic. They have all visited and they have been really good and helpful but he is beyond that now.
I have researched the care homes in our area, asked locally for personal recommendations and have two of them in mind.
I have emailed a report to the Social Worker , saying exactly what my husband is like at this time. I believe she has also received a very desperate message I sent to the representative from the Alzheimer's Society just before Christmas.
I would really appreciate suggestions from people on here who have done this already - I am desperate for help and respite from my husband, who is driving me mad.
Thank you in advance for any suggestions

Will he be self funding or will local authority need to fund his care? If the latter, my mum was in same situation - wanted my dad to move into a care home and not carers. Unfortunately social services said she had to have a community care package in place first and would need 4 carers a day before they would assess for a care home. We even said what if mum left as she couldn't cope and they said he would be moved to a flat with a community care package and monitored.

To be fair, the carers coming in now has helped my mum and I see why social services want people to have this in place first. Mum was assessed and funded for 4 weeks per year respite which she has now used and we're going to go back for more for this year.

All I can suggest is try and communicate how difficult things are on the worst day. Perhaps write it down and send it to them ahead of their visit so you can focus on those issues in the appointment.

Good luck - I hope it goes well and you get what you need.

 

[Canna]

I think it helps if you can explain why additional carers will not keep your husband safe. For example, my mum was mobile and very active, so she was wandering during the day, and she didn't have a routine, so was getting up and going to bed at wildly varied times. Because of this I was able to argue that the timings of the carers' visits wouldn't keep her safe. Although I was looking after her almost full-time, I'd reached a stage when it was no longer sustainable, and I knew that a home was the only realistic option. My Carers' Assessment showed how much I was struggling, and how close I was to breakdown. It sounds as if your message to the Alzheimers Society shows the same thing.

Although the financial side of Social Services were keen to make us try a 4x a day carer package, our social worker was on our side and backed me up. It took a few heated phone calls and emails to the head of service, but mum did progress from a single lunchtime visit directly into a care home.

It's awful that we have to reach desperation to get what our loved ones need. Making the decision that 24 hour care is needed is hard enough without the additional stress. Good luck, and I hope you have a good outcome.

 

[Kath610]

I think it helps if you can explain why additional carers will not keep your husband safe. For example, my mum was mobile and very active, so she was wandering during the day, and she didn't have a routine, so was getting up and going to bed at wildly varied times. Because of this I was able to argue that the timings of the carers' visits wouldn't keep her safe. Although I was looking after her almost full-time, I'd reached a stage when it was no longer sustainable, and I knew that a home was the only realistic option. My Carers' Assessment showed how much I was struggling, and how close I was to breakdown. It sounds as if your message to the Alzheimers Society shows the same thing.

Although the financial side of Social Services were keen to make us try a 4x a day carer package, our social worker was on our side and backed me up. It took a few heated phone calls and emails to the head of service, but mum did progress from a single lunchtime visit directly into a care home.

It's awful that we have to reach desperation to get what our loved ones need. Making the decision that 24 hour care is needed is hard enough without the additional stress. Good luck, and I hope you have a good outcome

 

[Kath610]

Thank you @Canna , we have had a really bad day today - I left home and drove to my daughter in law's to make phonecalls to DISS and Adult Social Care. As a result I have sent another report to the social worker who is coming later this week and have given the duty worker a verbal account which will be passed on.
Your points about your mother being vulnerable when the carers aren't there is a good one and I tried to say the same. If I wasn't there 24/7 my husband could not make himself food or a drink and cannot self medicate. I hope to get this across to the social worker and I hope she is as supportive as yours was.

 

[Kevinl]

Just say "I love you" might.be those three little words might just heip.
K

 

[Canna]

Thank you @Canna , we have had a really bad day today - I left home and drove to my daughter in law's to make phonecalls to DISS and Adult Social Care. As a result I have sent another report to the social worker who is coming later this week and have given the duty worker a verbal account which will be passed on.
Your points about your mother being vulnerable when the carers aren't there is a good one and I tried to say the same. If I wasn't there 24/7 my husband could not make himself food or a drink and cannot self medicate. I hope to get this across to the social worker and I hope she is as supportive as yours w

I hope you have a better day today. It's so tough to have to deal with all the bureaucracy, phone calls and paperwork when you're caring full-time too.

Our social worker had looked after her father when he was ill with dementia, so she understood the challenges. We had to battle with senior managers, but at least she was on my side.

Looking back, I wish I'd actually asked the people we came into contact with what their experience of dementia was, outwith work. You could tell from who really knew what things were like. Unless you've been there it's quite easy to miss how much propping up a carer is doing to give the illusion that things aren't too bad. Things like getting them dressed appropriately; asking questions and leading conversation in a way that supports the person in social situations; adapting routines and the house to keep them safe.

 

[Kath610]

Just say "I love you" might.be those three little words might just heip.
K

 

[Kath610]

I'm sorry @Kevinl but I can't do that. The man I have been married to for 48 years, raised three sons with, who has been my friend, support and love for all that time has gone. Thanks to five years so far of living with Alzheimer's, he has been replaced by a foul mouthed, angry and aggressive person who is currently pacing up and down the landing, banging on the bannister and telling me to P off because I stopped him from going out of the front door at 10:30 at night.
It's his birthday tomorrow and I have written "Love as always, Kath x" on his card. It is not true and those three little words will not help at all, sadly.

 

[ShivyDevon]

I'm sorry @Kevinl but I can't do that. The man I have been married to for 48 years, raised three sons with, who has been my friend, support and love for all that time has gone. Thanks to five years so far of living with Alzheimer's, he has been replaced by a foul mouthed, angry and aggressive person who is currently pacing up and down the landing, banging on the bannister and telling me to P off because I stopped him from going out of the front door at 10:30 at night.
It's his birthday tomorrow and I have written "Love as always, Kath x" on his card. It is not true and those three little words will not help at all, sadly.

Sorry to hear you're having a tough time tonight. Can you film his behaviour so you have it to show at the visit?

 

[Melles Belles]

@Kath610 sending you a virtual hug.
i think you should tell them what you’ve just posted. The pacing, swearing and banging on the bannister. That’s abusive and aggressive behaviour and you wouldn’t be expected you to tolerate it if your husband wasn’t a PWD.

 

[Kath610]

@Kath610 sending you a virtual hug.
i think you should tell them what you’ve just posted. The pacing, swearing and banging on the bannister. That’s abusive and aggressive behaviour and you wouldn’t be expected you to tolerate it if your husband wasn’t a PWD.

Thanks @Melles Belles and @ShivyDevon - similar behaviour to this is already in the 2 emails and the verbal report I have given/sent in the last few days. I will tell them about this latest outburst when I see them tomorrow. The social worker emailed me this afternoon to say she is bringing a nurse from the Dementia Intensive Support Service with her so I hope that means they are taking our situation seriously.

 

[Melles Belles]

There seem to be a number of PWD who get aggressive and potentially violent where social services choose not to be concerned with the spouse’s safety and wellbeing.
Has anyone had any success with contacting Womens’s Aid for support? I know from Mumsnet that they help in domestic violence situations.

 

[sapphire turner]

I was referred to social services when my husband became aggressive and I didn’t feel safe to stay in the house. The dementia wellness team saw him quickly and got his medication changed and SS were supposed to be helping me with a personal safety plan. When they eventually got back to me I had a phone interview. They asked if I had small children (no), did I live in a home where I could go in another room to get away from my husband (yes) and had he ever physically attacked me (no). I felt like a time waster and never heard from them again.

 

[Kath610]

Well we had the visit today from a member of the DISS team and a social worker from Adult Social Care. I had sent two email reports and a verbal report to the ASC worker so they knew the situation exactly.
There was no mention of carers, they have agreed to a respite stay in a care home and say my husband is entitled to six weeks in the year. A more permanent arrangement will be considered depending on how he gets on. We will have a financial assessment but the funding will be based on half of our joint account and my husband's current account. My account and the value of the house will not be involved.
They have also recommended starting Risperidone along with the Memantine to help with the nightly wandering.
It's a good result and my husband seemed to accept it, even after they had gone. He was fine when they were here but I thought there might be ranting and blame once we were alone. This was not the case, we had a cup of tea and discussed it and he seems to accept the idea.
Thank you @Canna for your helpful suggestions as to what to include in the reports because that was definitely what achieved the result

 

[Banjomansmate]

👍 👏

 

[maisiecat]

Well we had the visit today from a member of the DISS team and a social worker from Adult Social Care. I had sent two email reports and a verbal report to the ASC worker so they knew the situation exactly.
There was no mention of carers, they have agreed to a respite stay in a care home and say my husband is entitled to six weeks in the year. A more permanent arrangement will be considered depending on how he gets on. We will have a financial assessment but the funding will be based on half of our joint account and my husband's current account. My account and the value of the house will not be involved.
They have also recommended starting Risperidone along with the Memantine to help with the nightly wandering.
It's a good result and my husband seemed to accept it, even after they had gone. He was fine when they were here but I thought there might be ranting and blame once we were alone. This was not the case, we had a cup of tea and discussed it and he seems to accept the idea.
Thank you to the people on here who suggested what to include in the reports because that was definitely what swung it.

I hope you are feeling more settled tonight. I am sure now things will progress for you as he will display the full range of unacceptable behaviour to the staff who will put in reports to help future decisions. My daughter said to me she thinks many of the professionals saw me as hysterical. My husband was admitted to hospital after a fall and all I heard from the staff was how have you coped and they would phone me to come in and calm him.
Take your time while he is in respite and decide what is best for both of you. Without doubt my husband is better off in his Nursing Home although it takes time to get used to it. Remember we are so programmed to not protect ourselves which makes its difficult to make good choices.
Wishing you well

 

[Kath610]

Thank you @maisiecat I am feeling better after a bad night last night full of will they, won't they..... The two ladies were so supportive and helpful. They didn't promise anything but they did ask if I had any preference for any of the local care homes. I asked on Facebook for recommendations so had three in mind. Just want to get on with it now.

 

[Sarasa]

That sounds like a good result. I hope a place in one of your preferred homes is found very soon.

 

[maggie6445]

Well we had the visit today from a member of the DISS team and a social worker from Adult Social Care. I had sent two email reports and a verbal report to the ASC worker so they knew the situation exactly.
There was no mention of carers, they have agreed to a respite stay in a care home and say my husband is entitled to six weeks in the year. A more permanent arrangement will be considered depending on how he gets on. We will have a financial assessment but the funding will be based on half of our joint account and my husband's current account. My account and the value of the house will not be involved.
They have also recommended starting Risperidone along with the Memantine to help with the nightly wandering.
It's a good result and my husband seemed to accept it, even after they had gone. He was fine when they were here but I thought there might be ranting and blame once we were alone. This was not the case, we had a cup of tea and discussed it and he seems to accept the idea.
Thank you @Canna for your helpful suggestions as to what to include in the reports because that was definitely what achieved the result

Hello Kath 610, I'm pleased you are getting the help you need. I don't need help at the moment but I can see that I'm heading in that direction . My partner is passive and compliant( when I can make him understand what I'm asking) but I find it exhausting as his comprehension is fading fast. You say you are entitled to six weeks respite a year, is that to be financially means tested or something the LA awards to carers at the point of need following a needs assessment? Hope you don't mind me asking, I'm just trying to work my way round a complex care system.
Best wishes to you