Don’t know what to do next….

[ClareBh127]

Hi all. my MIL has Alzheimer’s and vascular dementia. She still lives at home with my FIL who has severe anxiety. FIL can still make decisions for them but he is getting worse and they are both in their early nineties. MIL has good and bad days, and the bad days consist of her being extremely angry and hostile towards FIL. She constantly suffers with neck and shoulder pain and has been checked over many times but nothing can be found to be wrong. On bad days she will shout that no one (us) is helping her and everyone is on FIL’s side. she says that he ignores her all day and that she is left on her own. We know this is not true, but she comes out with all sorts of accusations against him, true or not, we don’t know.
they have both been assessed by SS and deemed to still be able to make their own decisions so will not step in. If they need care or home help they will have to self fund but Dad is very old school and seems reluctant at times to pay. He has not actually said this and is very kind and generous when family need help, but he is not a man of many words so getting private/personal info out of him sometimes is very difficult. On a bad day we offer to find them help and care and they agree, but when mum has calmed down a couple of days later, they are dead against it. MIL always seems to have a UTI and we believe this is when she seems to be most angry. She knows who we are and remembers events and occasions from long ago, but her short term memory is not really there, so doesn’t remember Dr’s appointment's and results etc. My husband is an only child so gets the brunt of everything, every angry phone call, every argument and accusation, but his mental health has taken a beating lately and he is reaching his limit of what to do. They need help but we just don’t know what to do for the best. Husband has LPA for both of them but as both are deemed ‘ok’ he can’t do anything with it.
any help or advice on anything we can do will be greatly received.
thanks for listening x

 

[DeeCee7]

Hello @ClareBh127 , I am glad you have found the forum and posted your story. I hope it helped to set it all down. How long ago did SS make their assessment? Things can change quite quickly, and it might be appropriate to ask for another assessment. You are right about UTIs affecting behaviour and emotions. Would it be possible to make a Dr appointment for your mother in law, and either you or your husband going with her. You could write a letter to the GP beforehand, setting out your concerns, so they are not seen to be coming from yourselves. The GP could arrange a memory test etc.
It sounds like you are not supported by the wider family, especially with your husband being an only child. How much are you able to help at the moment?
I think another conversation needs to happen where you say, they must accept some help in the form of carers, and that none of you can continue like this. It’s a hard conversation to have, but necessary.
I am sure others will be along soon, with more advice than I can offer.

 

[SAP]

Hello @ClareBh127 , this is such a difficult situation, on one hand you know they need more help and on the other, they won’t accept it.
Yes UTIs can make things more difficult and need treating to prevent further damage.
I know this sounds hard but maybe your husband needs to sit down with his dad and lay his cards on the table and be quite blunt about the possible issues for both parents and himself. As @DeeCee7 has said, it may be time to request another assessment of your parents needs and express your concerns about both parents. Yes social services can not force someone who can make their own decisions to accept help but they also have a duty towards safeguarding and if your in laws carry on as they are then this will become a safeguarding issue.

 

[northumbrian_k]

Hi @ClareBh127 and welcome to the Forum. This is a great place to find information and learn from the experience of others. No 2 situations are alike, but what you have described seems familiar from other posts that I have read. My own experience is different as it is my wife who has dementia. I do understand though why people such as your father-in-law are reluctant to seek help. Things will inevitably get worse and - although it is hard to stand by - it may take a crisis to make him see that not coping is no longer an option.

 

[Violet Jane]

You don't have to involve SS if your mother, or father, as the case may be, would be funding his/her own care / support. Is your mother getting Attendance Allowance and related Council Tax discount? They are not much but would help towards the costs of a carer or cleaner or day centre. They are not means-tested.

Your FIL may not be aware that if your MIL moved into a care home the house would be disregarded in any financial calculation and only her income and assets would be taken into account plus half of any joint savings.

What help do you think your parents in law need? Someone to do the washing and cleaning? Help in the garden? Help with meals? Help with personal care? It's a good idea to delegate what you can. Or is the problem that you are constantly being called to intervene in arguments or deal with crises?

It's hard to do but I'm afraid that if your FIL won't accept help then all your husband can do is take a step back and let your FIL deal with everything himself. Eventually there will be a crisis of some sort when something will happen. Whilst your FIL can always call upon your husband there's no incentive for him to accept outside help.

Your parents in law have had very long lives. It's not right that your husband's health is compromised by your FIL's stubbornness.

Regarding the UTIs, it may be worth speaking to the GP to see whether your MIL could be prescribed a low dose of antibiotics on an ongoing basis. It's delicate, but I think that you also need to find out more about your MIL's personal hygiene. Is your MIL washing her groin area properly / changing her underwear / wiping herself front to back after she has passed urine / cleaning herself properly after she has had a bowel movement? If not, then this may be causing the UTIs.

 

[ClareBh127]

Thank you all for your replies so far. we are currently arranging for a private carer to go round and help mum with bathing and dressing in the mornings. That may help with identifying how all the UTI’s keep occurring. They may spot something that we are missing. They have agreed to that as I think/ hope dad is realising that he can’t do it all. Hopefully this is a start to them accepting more help. Unfortunately they / we don’t have a wider family that can pitch in and help and support. Dad would not accept that anyway, so it is on my husband and I to do what we can for them. Mum has some more antibiotics for her current UTI so hopefully that will help to calm her again.
We have talked to dad re care homes and finances and he does understand what it involves re their house and everything but he is an Extremely proud man of what he has worked hard for and we truly believe that he doesn’t think it is necessary to go down that route. He is very old school and believes it is his duty to care for mum as she is his wife.
They are aware of my husbands health issues but I don’t think they truly grasp how serious things have been for him. So I fend off as many phone calls from them as possible and only pass them over to him if they are ‘calm’ or have a genuine request.
I think unfortunately it will take something serious to happen for them realise just how bad things are.

 

[sheepfield]

Thinking of you all. My husband and I are both autistic, my husband reports feeling a little depressed sometimes and I have anxiety. I've found it hard to spread myself thinly between them both and care for myself so please do make time each day to prioritise yourself and do something that you enjoy. I'll be volunteering this evening at an ADHD group though with everything going on, I keep forgetting stuff and I didn't realise that it was on till yesterday!
My mother in law lives alone and thinks that she can look after herself. She's used to looking after herself, her husband and her son. But now she can't remember that she hasn't got ready for bed, hasn't eaten etc.
She had a small fall and a day in hospital about a month ago, nothing broken, but that seems to have encouraged her to get a carer to help with meds and a home help for laundry etc. She hasn't even accepted help from me and husband but hopefully she will accept more and more help from professionals. When we visit we get cold cups of tea and biscuits on grubby plates as she forgets sometimes to put the kettle on. She likes to show hospitality to us, not us to wait on her.
So if there is an event that leads to your in laws accepting more help, I hope that it's as small as my mother in law's was.

 

[sheepfield]

Oooh just one more thing, when my mother in law finally accepted some help, we went down the route of social services as she seems to respond to professionals differently to suggestions from me and husband. The hospital made a referral to social services after her little fall.
She's self funding but they seem to know that none of us three (there is no other close family) wants to spend hours poring over care company brochures and reading the small print or whatever you might have to do. We don't have the mental health to do it, husband and I are both having more meltdowns than usual, and mother in law gets worked up, she's always been quite highly strung. So they're just going to step in and carers start next week! I'm pleasantly surprised. I hope that they will look after you just as well.
Have you had a carers needs assessment? You can have this independently of the people who you care for. My local carers group have been great with me.

 

[ClareBh127]

Hi everyone. Thought I’d give an update. So after a couple of months that saw MIL slowly getting worse, FIL’s health starting to deteriorate also and social services kind of getting involved, things kind of came to a head.
MIL took to going for nighttime ‘walks’ down her road, sometimes without FIL knowing. He locked the front door but she found the keys everytime. She would knock on neighbours doors, or let herself into their house if the door was open. fortunately they all know her and her situation so tried to take her home. She would always refuse and it would take either a long time to get her to go home, or us driving 45 mins a few times to convince her to go home.
one night she went to a different neighbour and they called the police. They were brilliant as one officer recognised mums problem and they took her to hospital as they did not think She was safe at home due to her condition. After 2/3 weeks in hospital, they have assessed her and said that she should be in a home. Social services have gone in to assess her and because she said she wanted to go home, they have decided that she is capable of making her own decisions!!!! ’Home’ to mum is usually Wales, as that’s where she was born and bought up ( she has lived in Suffolk for 20/30 odd years). They later called my FIL and asked if he locked her in of a night. He explained that he locks the front door - as does almost every household of a nighttime - and they actually told him ‘maybe you should leave it unlocked for her then she might not get agitated !!!!! since MIL has been in hospital, FIL has improved slightly and is more relaxed and coping better. But during their call, he got upset as he now knows and accepts he can’t look after her and she needs proper help and they seem to be suggesting she might not need a home and will be discharged back to their home. They then called my husband and asked him the same question re locking the front door!!!! When asked what we do re her running round the streets of a nighttime their response was ‘it’s a domestic issue’!!!! What does that even mean?????
There is no way either of them could cope if she went home and FIL is absolutely scared that this is going to happen. Social services said they will assess her agin in 2 days in case she was having a ‘good ‘ day today, but we just don’t know what to do if they say the same thing. We are furious with SS and really don’t think they are looking at all the past history, only concentrating on what MIL is saying now about going home.
Really not sure what we do now…..

 

[SAP]

Your FIL needs to refuse point blank to have her home, he needs to be crystal clear he can not and will not care for her as it is not safe for him to do so and that there is no family support. Your husband also needs to be clear that he will not be taking up the reins and that his father is no longer able to keep his mother safe. He needs to ask if this is a safe discharge. Then inform them that if anything happens to either of them, the social worker will be wholly responsible. I know this sounds dramatic but honestly they will not take any notice unless you are blunt. Do everything via email and cc the director of social services.

 

[Rosettastone57]

Does anyone have lasting power of attorney for finances and health? Sorry if this has already been asked earlier . If your mother in law is self-funding a care home can be arranged without social services, which is what we did for my mother in law.

 

[ClareBh127]

Does anyone have lasting power of attorney for finances and health? Sorry if this has already been asked earlier . If your mother in law is self-funding a care home can be arranged without social services, which is what we did for my mother in law.

Yes - my husband has LPA for both of them. We have not ‘activated’ either of them yet but they are in place. We have been told that mum would have to be assessed to see if she can make her own decisions before we can activate them. But Ss seem to think she does and can. So not sure here we stand with that.
They would be self funding but thought we would need the LPA for that as not sure who would assess her if not social services.

 

[ClareBh127]

Your FIL needs to refuse point blank to have her home, he needs to be crystal clear he can not and will not care for her as it is not safe for him to do so and that there is no family support. Your husband also needs to be clear that he will not be taking up the reins and that his father is no longer able to keep his mother safe. He needs to ask if this is a safe discharge. Then inform them that if anything happens to either of them, the social worker will be wholly responsible. I know this sounds dramatic but honestly they will not take any notice unless you are blunt. Do everything via email and cc the director of social services.

We have explained to SS already that she cannot go home, is not safe there, dad is not fit/ well enough to care for her but they don’t seem to be listening. Think we may need to speak to someone higher.

 

[Rosettastone57]

Yes - my husband has LPA for both of them. We have not ‘activated’ either of them yet but they are in place. We have been told that mum would have to be assessed to see if she can make her own decisions before we can activate them. But Ss seem to think she does and can. So not sure here we stand with that.
They would be self funding but thought we would need the LPA for that as not sure who would assess her if not social services.

Hi @ClareBh127 I'm a bit confused here. Do you mean that the LPAs are not registered with the office of the public guardian ? If not then they need to be, if they are then for finances if there are no particular restrictions, it can be used straight away by registering with the bank etc . With the health it can be used when the person with dementia has lost capacity. I'll explain what happened with my mother in law

My mother in law was self-funding in her own property with private carers . At no time did we have any involvement with social services whatsoever. She had a history of not engaging with professionals and had mental health issues before the dementia diagnosis. It became apparent that she needed to go into care. We waited for a crisis scenario and she eventually went into hospital. Once there we organised a care home . The care home manager came to assess her and agreed to take her. We discussed with the doctor about her capacity to understand her situation using the health LPA that my husband held. Together my husband and the doctor assessed her and she went straight to the home. Social services were never involved . Contrary to popular belief you don't need an official assessor for the LPA. Some forum members have used an independent social worker to assess the situation and organise a home. That obviously incurs fees. I'm sure others will be along soon with better advice or to correct me

 

[ClareBh127]

Hi @ClareBh127 I'm a bit confused here. Do you mean that the LPAs are not registered with the office of the public guardian ? If not then they need to be, if they are then for finances if there are no particular restrictions, it can be used straight away by registering with the bank etc . With the health it can be used when the person with dementia has lost capacity. I'll explain what happened with my mother in law

My mother in law was self-funding in her own property with private carers . At no time did we have any involvement with social services whatsoever. She had a history of not engaging with professionals and had mental health issues before the dementia diagnosis. It became apparent that she needed to go into care. We waited for a crisis scenario and she eventually went into hospital. Once there we organised a care home . The care home manager came to assess her and agreed to take her. We discussed with the doctor about her capacity to understand her situation using the health LPA that my husband held. Together my husband and the doctor assessed her and she went straight to the home. Social services were never involved . Contrary to popular belief you don't need an official assessor for the LPA. Some forum members have used an independent social worker to assess the situation and organise a home. That obviously incurs fees. I'm sure others will be along soon with better advice or to correct me

This is very helpful thank you. Yes the LPA’s are registered with public guardian office but we were told that in order for my husband to ‘take over’ or ‘activate’ and be the legal decision maker for her, she would need to be assessed by social services to see what mental capacity she did have. We strongly disagree with what SS have said as they have met her for one 10 minute session and not seen her all other times, and we seriously fear for my FIL’s health if they discharge her home. He just would not cope at all and would go down hill very quick, thats despite the anger and aggression that she displays towards him that SS are aware off.
if SS assess her again and say the same thing, would the Doctors at the hospital she is in help assess her (they have already told SS that she should be in a home) and help us do it by ourselves I wonder?
Trying to find someone higher up or even an e-mail for someone else in SS is impossible!!

 

[Rosettastone57]

This is very helpful thank you. Yes the LPA’s are registered with public guardian office but we were told that in order for my husband to ‘take over’ or ‘activate’ and be the legal decision maker for her, she would need to be assessed by social services to see what mental capacity she did have. We strongly disagree with what SS have said as they have met her for one 10 minute session and not seen her all other times, and we seriously fear for my FIL’s health if they discharge her home. He just would not cope at all and would go down hill very quick, thats despite the anger and aggression that she displays towards him that SS are aware off.
if SS assess her again and say the same thing, would the Doctors at the hospital she is in help assess her (they have already told SS that she should be in a home) and help us do it by ourselves I wonder?
Trying to find someone higher up or even an e-mail for someone else in SS is impossible!!

The doctors may help . This is an important topic especially with mental capacity

 

[Jools1402]

If she is in hospital there should be a discharge team that will assess whether MIL is safe to go home. They should speak to FIL or your husband before discharging her. However it would probably be best for you to be proactive and ask to speak to them - the ward sister should get them to contact you if you ask. It may be that they decide on a discharge to assess bed in a care home for a few weeks (funded by NHS). Whoever is involved in any decision making must be told - very firmly - that this is a safeguarding issue and FIL will NOT have her back home. Wishing you well.

 

[StressedDaughter]

This is very helpful thank you. Yes the LPA’s are registered with public guardian office but we were told that in order for my husband to ‘take over’ or ‘activate’ and be the legal decision maker for her, she would need to be assessed by social services to see what mental capacity she did have. We strongly disagree with what SS have said as they have met her for one 10 minute session and not seen her all other times, and we seriously fear for my FIL’s health if they discharge her home. He just would not cope at all and would go down hill very quick, thats despite the anger and aggression that she displays towards him that SS are aware off.
if SS assess her again and say the same thing, would the Doctors at the hospital she is in help assess her (they have already told SS that she should be in a home) and help us do it by ourselves I wonder?
Trying to find someone higher up or even an e-mail for someone else in SS is impossible!!

There is a box on the LPA forms. One allows you to act when appropriate and the other only allows action when capacity no longer exists. I’m guessing your husbands is the second kind. I have just done my own LPAs (dealing with my older relatives has focused my mind re my affairs) and it does have a warning re the second box.
I find the whole capacity thing mind blowing. Either way (I am trying to get agreement Mum has capacity to sign the sale of her house for care home fees) it seems virtually impossible. Hoping things work out for you.

 

[Jaded'n'faded]

When asked what we do re her running round the streets of a nighttime their response was ‘it’s a domestic issue’!!!! What does that even mean?????

It's not a 'domestic' issue, it's a Safeguarding issue.

As others have said, you need to stand your ground and refuse to let your MiL return home to your FiL. You could even tell them FiL won't be there because you've had to take him away for a break due to the stresses of caring. Add that you don't know when/if he'll be able to return. Point out that SS have Duty of Care, not your Fil. Ask them to put their so-called capacity decision in writing and to state that they will be personally responsible if anything goes wrong because family are no longer able to help in any way and they are going against the opinions of the doctors about MiL's care needs.

Some of the above suggestions may be empty threats but they don't know that. They can't return MiL home if no one is there. Insist she is sent to a Discharge To Assess setting. Ask for a Best Interests Meeting.

Do all the above and stay strong. The right decision needs to be made for both your MiL and FiL (who has the right to a decent life too - point this out! Not to mention your husband...)

Wish you luck...