Elderly, frail parent refusing home help - can we use LPA?

ChasingtheWelshdream

I will try to keep this brief as there are several back stories leading us to this point.

MIL is pushing 90 and lives on her own. We are 400 miles away and she has no other close family. We are currently driving down every 3-4 weeks to do household chores, gardening, shopping etc. She has always refused any other help or to discuss the future.

Her health has recently deteriorated, including her memory, and she is increasingly frail and currently housebound whilst recovering from an illness. We have requested a needs assessment from Social Services and are arranging district nurses, GP house visits etc in the interim. Social Services say it could be weeks before we receive an appointment.

It is an incredibly stressful time. She rings several times a day, wanting us to remind her of things, call the doctor, order shopping etc. - and then calling again 30 minutes later to ask the same things. We both work full time and have kids/animals so can't just go at a drop of a hat.

We would really like to arrange some home help. She doesn't need personal care, but we would feel much happier knowing there is someone regularly popping in to see if she needs anything and do light household jobs or pop to the shops if she has run out of anything. And also to alert us if they have any concerns. We've found a local company that offers exactly than and can visit for an hour each week.

She is point blank refusing to even consider it. One of the reasons is she doesn't want to pay. She has plenty of savings so everything is self-funded but she doesn't see why she should have to.

Other than persuasion, is there anything we can do? DH has LPA for finances, but we assume we couldn't just go ahead and arrange a care plan with her money if she is not consenting?

There is a complication of her worsening confusion and memory, and if she actually does have capacity or not. But until that is assessed we have to to assume she is able to make her own decisions,

It is just really starting to affect our family and relationship with the strain of having to pick everything up remotely. 

BrassicWoman

I'm sorry you are going through this.

Capacity is tricky because it is not always constant. If she does generally have capacity she has the right to make what you would call bad decisions.

You also have rights; the right not to let her bad decisions impact you to the extent that they currently are.

It feels like a chat with Age Concern might be helpful for one or both of you?

Brie

Well I'm not going to suggest you lie to the old dear but sometimes phrasing is everything.

Does she get attendance allowance?  If not apply for it.  If yes tell her that's what the government gives elderly people to keep them safe and pays for someone to come and visit to ensure she is safe and happy.  Even if she hasn't got it yet maybe you could say you're paying for the "friend" to visit.

Have you had a key safe installed?  If not get one.  The visiting carer will be able to access the house with this if she doesn't come to the door.  You can also ensure that her doctor's surgery has combination so nurses can get in when they need to.  Or if a neighbour calls you and says they haven't seen her for a few days you can give them or the police the code rather than having to break down the door.  

Do check with the care company how their charges work.  It was actually more cost effective to have someone for 3 hours once a week for MiL as there was a visit charge and then an hourly charge as well.  One hour was very expensive and not a lot could get done.  The AA that MiL got was about £90+ and the carer for 3 hours once a week was £70 so she was quids in.

DH should be using the LPA in her best interests.  If that includes paying someone to visit occasionally to ensure she hasn't burned the house down that sounds like money well spent.  

otb666

My 92 elderly relative has a gardener once a week and an online sainsbury delivery.  This helps and gardener/delivery person get to know them so that kinda kills 2 birds with one stone.  Also limit the call to them calling you once a day at a certain convenient time for you both.  We also made friends with the neighbour so they keep an ear out for them.  Its very hard for us but you have to respect their wishes and it does seem to be keeping them active and alive for longer than if they were in care.  Obviously we would prefer them in care and not have to worry but they do what they want and we just have to live with it.  We recently realised that due to mobility and toilet being upstairs relative pees in a jug downstairs in daytime.  They do not want to spend their money on alternative (lift/fitting new toilet)  Their choice but obviously we would prefer alternative.

ChasingtheWelshdream

BrassicWoman said:

I'm sorry you are going through this.

Capacity is tricky because it is not always constant. If she does generally have capacity she has the right to make what you would call bad decisions.

You also have rights; the right not to let her bad decisions impact you to the extent that they currently are.

It feels like a chat with Age Concern might be helpful for one or both of you?

She seems to have capacity in many things things, yet - and this is one example - asking us to call the GP because she can't get through and is stressing about having some dressings changed. When we call the surgery, she has already spoken to them that morning! And told them the dressings are fine and she doesn't need anybody to come out. But she can't remember doing it at all. then gets cross. To me, this is worrying.

Age Concern we've been in contact with and have guides for different care types etc.

Brie said:

Does she get attendance allowance?  If not apply for it. 

I have the claim form here ready for her to sign when we are down next. Age UK wanted her to apply a couple of years ago and put in adaptations for her. She refused.. 

Have you had a key safe installed?  If not get one. 

We installed one last week - it didn't go down well but we did end up insisting for that very reason. 

Do check with the care company how their charges work.  I

This particular company are per hour (£20ish) with an initial registration fee and  a commitment for a minimum of 1 hour per week. They are not carers, more companionship and home help. 

The dilemma we have is that she is a very private person and rather anti-social. She has never liked people in the house (including us!!!) so wouldn't welcome people popping in for a chat. And we have to respect that right.

On the other hand. Each time we speak she bemoans how hard everything is and how lonely she is and how nobody wants to help her. She was cross with us today because she had "run out of food" and "why can't you just order me some shopping". She actually just fancied some crisps. We got her shopping at the weekend......

We have no concerns over her ability to keep the house clean - it is immaculate! But, with heart failure she is making herself ill when she exerts herself. So a home help is more for our piece of mind, but we can't afford to fund it ourselves. And do we have that right to impose something just for our own wishes.

She does have a care alarm pendant so there is help in the event of an emergency.

Sorry, this is turning into more of a vent. 

elsien

The difficulty  you will have if someone doesn’t want the support is that when the carer/cleaner/whoever comes they refuse to allow access. And if the person lets themselves in using the key safe and the person tells them to leave, if the person understands at that point they have every right to send the care agency away regardless of the LPA. 

You can’t apply best interests to someone who has capacity, and as you say, capacity around her care and support needs has yet to be ascertained. 

And if they don’t understand and are confused, they start to accuse the carers of being burglars or breaking in or become angry/abusive with them. 

So it only really works if people are in agreement or able to begrudgingly comply.

Aside from which, if she is saying no to the help you can’t override  her wishes at this point. 

And as above, set your own boundaries is if that’s what you need to do. Because the carer going in once a week probably isn’t going to help with the repeated phone calls so maybe you need to say that you’re only available at certain times of day and not answer the phone in between that? I know how hard that will be. But on the basis at the moment that she has capacity to understand, she also has the capacity to understand the consequences. Which is that you cannot be at her beck and call.

 So do what fits in with you and your life. Tell her that you can’t come up and do her gardening and if she wants it doing she will need to pay a gardener. See if you can arrange online shopping for her rather than going up and shopping in person. Just as examples. 

Some people also get scared because they think that everyone is trying to get them out of home and into a care home so they downplay their difficulties on that basis. If you can reassure her, that’s not what’s happening then sometimes people are more willing to accept help.

And avoiding the word carer can be part of that although I wouldn’t be so far as misleadingly calling them friends. Personal assistant?

But some people as they get older do you become increasingly more self-centred and find it hard to see other perspectives. You may find that she will continues to take as much as you are able to give because she has no need to change things while you are still doing it. Where that line lies for you is a conversation that you and your husband need to have. 

otb666

This is the same situation we are in.  It seems helpless sometimes and i really feel for you as know how the stress is effecting us.  We have had to rush round (50 miles) when they collapsed on floor with water infection. I will never forget having to sort them out whilst they were naked and delusional etc.  They have no memory of this now. ( But its seared on my brain forever. ) and fully recovered and healthier than ever,  I wish I had the answer but the others given good advise. I go from admiring them to hating them dayly.

Angelica123

It is admirable that you are doing so much to support your MIL. I know it is easier said than done - but as long as someone has capacity (and all that matters is that they have capacity in that specific moment even if later on that changes) - then there is nothing you can do to stop someone from making bad decisions. Your MIL is very clear about what her boundaries and it sounds like it is time to start setting some boundaries for yourself. Part of setting boundaries is about having to accept that there may be negative consequences of maintaining them. However, the reality is that right now, if she is refusing help, there may be situations where she won't get the help that she needs. 

I think the first thing that needs to happen is you and your husband need to decide what you are realistically willing to do for your MIL (of things that are in your control). Are you willing to move to be closer to her? Are you willing to keep answering the phone at all hours (and if not, are you willing to accept that you may miss an important call from her)? Are you willing to set realistic expectations with MIL re what help you are willing to provide? 

Unfortunately, as frustrating as it is to watch someone makes what appears to be bad decisions, you can't fix their problems or impose your will on them. You could have a frank conversation about what you are willing to provide and then your MIL has to live with the consequences of that. The other thing is whether she has someone in her life she respects? Someone else who has less of an invested interest in the outcome that could talk to her about her current situation? Maybe her GP?

Once she loves capacity, it becomes a safeguarding issue and then one can act in her best interest. But you are limited to what you can do before then. 

Danien

I really do think you need to get her capacity assessed at a time you can be there for the assessment in case she doesn't necessarily tell the truth or remember the issues she is having.

At the moment I can't see how you would know whether her bad decisions are due to simple obstinacy or due to declining capacity, especially if she actually cannot remember the problems she is having and is experiencing confusion. Simple household tasks are ingrained in someone that age and even someone with poor capacity can continue to do them. Is she doing things that endanger her health (heart failure) because she is stubborn or because she cannot remember the importance of not doing them. I have heart failure and there are important aspects of care that only she can do. Is she on medication? How sure are you that she is taking them? 

A full dementia assessment needs to be done before you can make an informed decision. The results will tell you how bad her forgetting actually is - and I suspect it is worse than you realise, as it often is if you're not there day in day out. 

The assessment will help you decide in co operation with social services and GP what solution is best. It may be she needs more than one hour a week, she may need daily visits, sheltered housing, sheltered housing plus or full time care. 

Other things to consider are other dangers around the house, for instance cooking. Does she have a gas stove might she leave the gas on, or even forget something she has put on an electric hob. If she's forgetting things from an hour or two ago, it is entirely possible for her to forget something on the hob.

I do think the forgetting you've described is more serious than you realise, her short term memory appears quite poor.

And yes, if the situation is worse then you think you may need to use the LPA and she won't like it but there will be no choice, but you will have the assessment to back up the decision. There will need to be input from you and your spouse for a period of time to liase with GP, describe your concerns, insist on a full dementia assessment and be there for the assessment, but in the long term it will reduce your obvious worry and load.

elsien

It’s not as straightforwards as  just saying get her capacity assessed. The person has to be willing to have the memory assessment in the first place and the LPA cannot insist on a full dementia assessment being carried out because that still requires the person’s cooperation. On a practical basis, how do you assess the memory of someone who point-blank refuses to discuss with the GP or for a scan for example?

And even if there is a query around the capacity in any area, capacity being decision specific, there are still the access problems as above. LPA does not give carte blanche to override someone’s wishes and opinions

There may well be more going on. But dealing with it is not as easy as you make it sound. 

Danien

elsien said:

It’s not as straightforwards as  just saying get her capacity assessed. The person has to be willing to have the memory assessment in the first place and the LPA cannot insist on a full dementia assessment being carried out because that still requires the person’s cooperation. On a practical basis, how do you assess the memory of someone who point-blank refuses to discuss with the GP or for a scan for example?

And even if there is a query around the capacity in any area, capacity being decision specific, there are still the access problems as above. LPA does not give carte blanche to override someone’s wishes and opinions

There may well be more going on. But dealing with it is not as easy as you make it sound. 

I understand that there can be issues, but surely the OP is asking 'where do I start, what route should I go?' 

If the person refuses the assessment (personally I would arrange with the GP to say it was a necessary appointment and not state what the assessment was for, as it seems the person is engaging with GP surgery albeit in a confused manner) then that will be another issue that can be looked at.

Is it our job to catastrophise possible problems before they happen? You're right we don't know all the information and all I can do is give my advice according to my experience. Others may disagree with that advice and that's OK. I just gave what I felt was the next step to try.