PILs with complex needs, how to support them and partner

[cinemalovers]

I'm looking for help in how to support my partner and his parents, who are all having a rough time.

I will try to keep this short: MIL has alzheimers, FIL has MS. They are each other's carers, but their situation is fragile to say the least. They are determined to stay in their (very inaccessible and dangerous) home, and seem to view any intervention with suspicion - perhaps as a threat to their independence and their financial security. DP and I visit once a week, as does MIL's sister, and they have a wonderful cleaner and lots of friends. But between us we can't do enough to help them, and it's clear that they need some proper structured help with preparing meals, keeping the place clean, and taking their medication.

The main barrier to this is that every time we organise a package of care in partnership with PIL, Social Services and other medical staff (normally following a hospital visit), FIL (who is in control of the money) cancels it after a week or two because he says it is too expensive. We can't figure out why they are so worried about money, as they have two good pensions and own two properties, one of which they rent out as a holiday home.

I think PIL are both also depressed. They are more and more withdrawn and isolated. I think DP and I have not been able to give them the kind of support they have needed (we have a one year old son and in the past two years have also had serious health problems and money problems), and they no longer trust us to be able to sort things out, or they think we will make them move house (we tried to do this for a long time but have now realised we can't convince them). More worryingly, FIL has started to imagine we want to steal their money. Obviously, we don't. But we can't afford to pay for everything they need ourselves, and so we need their help to make things happen.

In the midst of this sad situation, I just don't know what to do to help my partner, who is an only child. He goes for days without wanting to confront the situation, then becomes overwhelmed and depressed about it, then gets full of big ideas like 'we will all buy a house together' or 'I will go round every day and cook them three meals', but these ideas are totally unrealistic and only doomed to fail. Things are very difficult as DP's business went bust earlier this year and we are struggling for money. I try not to ask DP's help with the baby or with money but every so often it just bubbles over. Last week I got shingles and tonsilitis and was exhausted. I asked DP to help with the baby in the night. In the morning he was knackered and missed a hospital appointment for his mum.

I will stop there as this is too long. But I wanted to ask if anyone can give some advice as to how I can help PIL accept our help and support, and how I can support DP through all the emotions of this situation, which is likely to last for years. My parents are fit and well and I think even this is very difficult for DP to see, especially as they can play with our son in a way that his parents cannot. We are all desperate, sad and exhausted and can't see a way out.

[Needmoresleep]

This, like so many posts on this board, is very sad.

No solutions, however:

1. Do what you can do to distance yourselves emotionally. You cannot take responsibility for other people's poor decisions. You can only help when you are able to. The rest is wasted energy.
   

1. In the same vein try to ringfence and acknowledge your own emotions. Worry, a sense of bereavement etc are all natural. Your Partner has lost the parents he once had.
   

Then think what can be done now and at the same time plan for the (almost) inevitable crisis. It can help to put yourselves in their shoes. Growing old is horrid. There is not much to look forward to, and lots of reasons to think that clinging on to what you have is the best approach. After all what they do have is each other and a home they know and where they feel they are in control.

Now:

1. Is there anyone they trust or will listen to. Vicar/priest/long standing friend. If so talk options through with them. Is there something like very sheltered accommodation near you. (Its worked really well for us.) They really need to either set up a POA or a separate "rainy day" money account, which someone else can access should there be a crisis. (Perhaps their solicitor or someone else if they are feeling very distrustfulness.) If both lost capacity it might take a year before their funds could be accessed for their benefit. Try the threat of social services taking over if they don't make sensible provision.....
   

Then think about the daily routine. Can you get them to bulk order Cook! meals and microwave them? Prompts for pills etc. Go over once a week to check cupboards and do a shop, but no more?

1. Prepare for the crisis. I ended up waiting three years for my mother to break her hip. She is very lucky it was not a stroke or something that left her incapacitated. We then got her to sign POA documents and were able to move her first from convalescent care to very sheltered. Once she had accepted this, it proved to be a huge relief. Clinging on had been very stressful. In retrospect the not knowing how things were was pretty awful. Though I had convinced myself there was nothing I could do, it was awful each time the phone went unanswered. It would not have been my fault had she been lying on the floor unable to move, but still.
   

The crisis required me to spend a lot of time sorting out my mother's affairs. Luckily I had been offered redundancy a year or so before which I had taken as I knew I would need the time. However your husband has other responsibilities. I think he might need to be clear that if they fail to work with him now to set up robust and durable arrangements, he will do what he can but needs to put his own family first.

[vdbfamily]

Hi there,
I am an occupational therapist and see situations like this all the time. I will make lots of suggestions which may or may not be helpful in your situation and in no particular order.

1. when you describe the house as inaccessible and dangerous, have they ever had an O.T assessment at home to suggest how it could be made safer/more accessible?Sometimes when the advice comes from someone other than family, it is accepted more readily. I would guess that fil has seen an OT at some stage if he has MS but maybe they need to revisit the situation and look at their current needs.
   
2. If meds are a worry, have you tried asking the gp for blister packs so that you can see at a glance what dose has been taken/missed. It would mean your fil could see whether mil had remembered certain doses.There are also medication boxes that beep at you at the time you need to take your pills.Sometimes these can be connected to Lifeline pendant systems and if you do not respond to the beeping, an operator will phone up and say Mrs ? have you taken your lunch time meds? etc.
   
3. Lifelines are reassuring and there are all sorts of technologies that can be attached to them these days such as falls detectors,smoke alarms, medication reminders, flood detectors etc
   4)If you are concerned about meals/cooking there are lots of companies that deliver frozen microwave meals to the home such as Wiltshire farm foods and Oakhouse. Also local WRVS often do Meals on wheels and can deliver tea on a plate to go in the fridge when the hot lunch is delivered.
   5)There are often voluntary organisations that do all sorts of things to help people stay safely at home. Check out Age U.K and WRVS to see what is offered. Also local day centres where you can join in with activities and have a hot lunch but also access hairdressing/chiropody/showers/shopping(sometimes)
   
4. Is there an MS support nurse involved. Is there a dementia crisis team locally. If you are really concerned I would try and contact a local team of professional such as 'Proactive Care' 'Intermediate Care' 'Social Services O.T/Social Work' and ask them to review the situation. Give them as much background as possible and list your concerns and then see if they can resolve some of the isssues directly with your inlaws.
   
   I don't know how close your partner is to his parents but maybe he needs to sit down,particularly with his dad and explain that he is just very concerned for their safety and wellbeing and if they would just accept a bit of help at this stage , life would be less stressful for everyone.
   Sadly,as the previous person mentioned, it sometimes takes a crisis for a situation like this to be resolved.Your in-laws are very interdependent and I would guess that fil is the brains and mil the more mobile so if something happens to 1 of them the whole fragile thing comes crashing down.You may just have to wait for that and accept there is not much else can be done. If FIL is compus mentis and they have 'capacity' to decide how their life should be, you have to respect that, however difficult it is to live with.
   Sorry life is so hard for you at the mo. Hope it resolves soon.

[cinemalovers]

Thank you so much for your replies.

We have tried some of the practical things, but not all, so thank you for all of those suggestions. I am hoping to get an OT assessment that can take into account both of their needs at once - what tends to happen is that adjustments make one of their lives more difficult. I spoke to Social Services today and they said they would try to make that happen, but can't guarantee it.

I will look into the Lifelline and tea on a plate. Unfortunately PIL can't prepare food themselves, so we have tried takeaways and frozen meals and online shopping, but it doesn't work.

re. POA - we have tried to do this but FIL is very suspicious. Is there a way we can get all the paperwork in place apart from his signature, and then talk him through it as and when the time comes? When I have called up solicitors they have said we have to go and have a meeting, etc. which is just impossible. When MIL first got ill she told us she wanted us to sort this out, but now she doesn't remember and is also suspicious of us.

Unfortunately the MS nurse, as well as most well-meaning friends and family, have been assigned to the status of 'unhelpful meddlers' by PIL. MIL has decided that the doctors told her she 'will never get alzheimers.' So although the dementia nurse is wonderful, it's difficult to channel anything through her. DP feels that his father is so unreasonable, and is so willing to put MIL at risk, that he doesn't see the point of trying to talk to him again. This makes it difficult for me - do I go against DP's wishes and try to initiate a conversation (which will make him angry and upset, and may put me in the 'unhelpful meddlers' camp as far as PIL are concerned), or do I respect DP's way of dealing with his own parents?

I feel like we have crisis after crisis. Last month FIL collapsed and MIL was stuck at the top of the stairs and didn't know what to do. Eventually she called 118 118, who called an ambulance. A few weeks before that MIL fell and broke her collarbone when she was at the shops. Now she is too scared to go out. But each time something happens, FIL refuses to talk about it - he will just ignore me, or hang up the phone - and MIL either cries or laughs and finds an excuse why nothing must change.

Thank you for the advice about emotional distance. That is obviously what I need! I will try to talk to DP about handling the situation in that way. It is heartbreaking for him.

[Needmoresleep]

Others in this section have been referred by their GP for counselling and found it helpful. Given how much you have going on, anything that might help separate the wood from the trees might be worth a try.

You dont need a solicitor to sort out a POA. In our case DM kept saying she would sort it, but never kept her solicitor appointments. Essentially it was a case of standing over her in her hospital bed saying sign here, with the priest as witness. Far from ideal, indeed given it was the day after her second operation I wonder whether she thought she had died and the priest was there to welcome her through the pearly gates. However I could not have done much for her in terms of sorting out her move and affairs without being able to say that the POA had been signed and submitted.

Things were in such a mess, including a worrying level of fraud and a tax investigation, that I took away my mothers cheque book and started giving her pocket money, which she hated. It took a good few months before she accepted that I had taken over, though actually I think from the outset she felt relieved that she no longer had the stress of all the paperwork. If you do need to seize the moment to get a signature, be prepared for the fall out. (The dementia will have made the abuse and accusations worse, but still not pleasant, though I am sure I did the right thing.)

Worth thinking though about access to some rainy day money, perhaps through a special joint account. I was lucky in that before my father died he had asked me to manage one of his rental properties. I then kept hold of rental money to build up a "sinking fund" to pay for needed refurbishments, providing her with monthly accounting. I knew and I think she did, that though refurbishment was needed, this sinking fund was more likely to be used for her.

One question worth checking early with the OPG on POAs is whether your husband's financial problems would prevent him from being an Attorney.

You might find more advice on POAs on the Talking Point forum. One argument I would use, beyond the reminder that failing to make arrangements could leave Social Services in the driving seat, is that your dad needs to make proper arrangements to enable his wife to be looked after should anything happen to him.

[whataboutbob]

lots of excellent points above, i will only add that MS as well as Alzheimers has the potential to cause paranoid delusions, it is sadly an occasional symptom of the disease. It's not definitely the reason of course, but it may be helpful to know it could be the nervous system's damage talking. I can only imagine how upsetting it must be to have your IL's suspecting your motives.

[CMOTDibbler]

My dad was very unwilling, despite having plenty of money in the bank, to pay for care and cleaning. But the carers centre and AgeUK outreach have filled out all the forms for attendance allowance and council tax exemption and been firm on the grounds of 'the government have taken money from you all your life, now its your turn to get some back eh' to get dad to sign them. I was then able to say 'well thats £170 a week, that'll easily pay for a cleaner and a few carer hours, costs you nothing', and it worked out. But its been a long, hard road to this.

The emergency pendant was surprisingly easy to get him to agree to, and mum has remembered how to use it twice, and he's used it twice too (in 6 months) and the response was so good he's all onboard with the point of it