When is the right time for someone to go into care?

The question seems sooo simple, but the answer is very complicated.  The simple answer is…. It all depends!

It depends on what medical condition/s the person is living with, what their home living circumstances are like and what their views about living in care are, as well as the views of their family.

Some medical conditions make it virtually impossible to be cared for at home, because of the complexity of the condition, the equipment that might be needed or the availability of skilled staff. However the conditions that make it virtually impossible are relatively rare and although it might be quite tricky to continue to stay at home with some conditions, it remains possible. Some equipment can be costly and/or cumbersome and therefore not suitable for an average domestic home, but homes can be adapted. Some adaptions are necessary, and not that difficult, installing a stair lift for example or grab rails in the shower. The stair lift is quite expensive, but grab rails are very easy and cheap to install.

Sometimes the person with dementia needs really skilled staff to help support and encourage them. It can also take a great deal of patience, which might mean that the carer/s needs a break from time to time, so that they can maintain their own emotional resources to deal with the situation. When someone is angry, shouting and aggressive it can take a calm and gentle approach to distract them from what has agitated them, which can be difficult, in what seems to be a threatening environment. It can also become very tiring for example, if the person with dementia becomes paranoid and accusational. Therefore sustainability of the system of carers needs to be considered, whether the carers are paid or unpaid family carers.

The next consideration is the physical living environment at home and its sustainability into the future. Considering how an individual may deteriorate in the future and trying to future proof that potential deterioration, with either adaptions to the property or the knowledge that with some piece of equipment can be brought in to adapt to a likely imminent deterioration. As well as looking at the living space, which might be the entire house that they live in or a few rooms within its, it is worthwhile considering the wider community and area. Are there support services that the person with dementia can go to see, such as memory cafes?  Is there a network of friends that the person with dementia can still visit? And then some more basic things such as how easy is it to get to the shops so that they can buy food?

The final thing to consider is the views of the individual themselves and also their family members. I have had a client say to me, that no matter how bad things get that home they will NEVER go into a care home. I’ve also had another client say to me that she was quite lonely at home after her husband died and was happy to be admitted into a care home, as she recognised she had some needs that needed a little help, but what care home did more than anything else was give her a community to belong to and company to be with. Family members can also have a strong view one way or another whether or not person should go into care. Generally most people say that they would prefer to home as long as possible.

So back to the question, it’s often about staying at home until it becomes impossible to do so. But what constitutes “impossible” is around the tolerance of what people will accept as a standard of care and an acceptable standard of living environment. Each person and their family have different view on what makes living at home versus living at care the right answer. This also means that there is no one definitive time when it’s the right time, it’s always about when it’s the right time for that person as a unique individual. It’s always about kindness, respecting their choice and compassion for them.

The New Social Care Reforms

The new social care reforms

With the fantastic new announcement that people will not have to pay more than £86,000 for their care, what does it all really mean?

There has been discussions for years about the crisis in social care and/or the NHS, but the pandemic made a difficult situation far worse, the increase in national insurance contributions will help, if the money is directed to the places that need it.  This is the good news, even though it’s not such great news, as it means people pay more taxes, which no-one likes, however it is necessary.

The cap of £86,000 on care costs, covers only “care” and not “hotel” costs, which is food and accommodation.  The government has indicated that people will not pay more than £12,000 per year in hotel costs, but with residential care costing about £35,000 and nursing care costing £50,000, this still leaves £23,000 – £38,000 of care costs a year that will need to be paid.  But not all of these costs will contribute towards the cap, as the government has also said that they will have their own cost limits, for care, so they might count only £30,000 of the £38,000 that is being paid in care.  Which means that of the £50,000 someone is paying, perhaps only £30,000 will count towards the cap. Therefore by the time somebody has racked up £86,000 worth of “care costs”, they have probably spent IRO £150,000 on care in total.  The good news is that care at home will also count, but again, not necessarily the rate that is being paid, but the rate that the government think the care is worth.

In reality, there are few people who spend £150,000 of their own money on total care (care and accommodation costs), to be able to benefit from the government’s cap.  Whilst there are plenty of cases of care costing this much, it is often funded by the NHS or local authority in any event and not from people’s own resources.  This announcement makes a good headline and makes people think that they will not have to sell the family home to pay for care, which is a hugely emotive subject, but unless the family has significant cash assets as well, they will probably end up selling the house to pay the £86,000 of care costs.

There are some positives, but the government will need to do a lot more to make significant improvement in social care and as we all get older, this should be increasingly important to all of us.

Caring for the carer

Caring for the carer

 

Self-care by a carer is not selfish, it is essential.  And caring for and about a carer is compassionate.  Many people with long term conditions have carers, some of the carers are paid for their work, but many are unpaid family (and friends), who feel an obligation and this role can be daunting.  Caring for anyone is not done in isolation, there are many people within the structure/s of care.

 

Many carers of people with dementia have clinical depression within a year of diagnosis, they are by definition ill themselves.  This is true of all ages of carer, but if the person with dementia is being cared for by their spouse of many years, that spouse may also have numerous age related health conditions themselves, before the stress of being a carer is added to their burden of concerns.

 

If the carer burns out, the whole situation might collapse, with both the carer and cared for needing a lot more support and the cared for might end up permanently in care.  Even if an admission into care is temporary, this can have a big impact on the wellbeing of both the cared for person and the carer.

 

Admission into care can often feel like “failure” and although there is no basis for that view, nevertheless, it appears to be a common misconception that is widely held.  If the condition that the cared for person is living with is a deteriorating one, then often if they live long enough with it, admission into care, either permanently or temporarily is inevitable, unless the carer has the skill to nurse them with complex needs at home.  Most unqualified family members have the best of intentions, but not the skill or capacity to provide the care, particularly if it involves both day and night care, as the carer will soon burn out with exhaustion.  The assistance of paid carers, respite and eventually permanent admission into care is the only sustainable way to cope.

 

It is key, that whatever plan is put in place has sustainability built into it, as the condition changes over time, so how the person is looked after must change.  In addition, when there is a new care plan in place, this new light that has been shone, often by a new person looking at the situation can make new suggestions that the people involved had not thought of.  When the care has been the same for a long time, the plan become do whatever was done before, without giving thought to changing it, because it worked.  When a care plan needs updating, for whatever reason, it can bring new ideas, that might or might not be accepted and actioned, but can be useful to have the discussion.  Any changes will hopefully support the carer to continue for longer, with an improved care plan.

 

Caring for the carer is essential.  The carer is a crucial role in ensuring that the person with care needs can continue as well as they are doing and the carer’s input will hopefully slow down any deterioration in their condition.  Caring for the carer is not selfish, caring is an act of love, compassion and dedication and should be applauded.

Issues that arise in assessment meetings

Issues that arise in assessment meetings

 

I recently attended an assessment for NHS Continuing Care Funding, the person being assessed was an elderly person who had severe dementia and other healthcare issues.  They had been for a long time in a residential home and had deteriorated over the time that they were there.

 

NHS Continuing Care assessments look at all the needs of the person and the nurse assessors can offer advice, support and suggestions for how the person should be cared for and often do.  They will suggest that previous assessment done by some of the specialisms within the NHS are updated, if there is a health issue that is no longer such an issue, yet the medication for it persists, for example.  Often when people are first diagnosed with dementia and they already have other healthcare issues, it is often the other issues that have the bigger impact on them.  So when someone has minor memory problems, but major mobility issues and keeps falling over, them falling is more important than forgetting that they have already bought milk.  As time goes on, this balance of what issues are key will change, as their disease progression changes, so an updated assessment by an expert for a particular need is of value.

 

However at this recent assessment, there was a focus on the placement, as the district nurse was coming to the home to support the carers and asked them how they were managing and had concerns about the carers response.  This issue then raised concerns and the NHS Continuing Care assessment shifted priority from looking at the persons needs in relation to that assessment to advising the family that the person needed to be moved to a nursing home.  The family were resistant, as they wanted their loved one to stay in the familiar home, surrounded by carers who knew them well and where they were stimulated by the activities.

 

Since the messages were being mediated through me and I held my position that it was the decision of the Health and Welfare Attorney and not the NHS or Social Services decision, but that the attorney should listen to the opinions of what is being said and why before they make a final decision.  Having full information is the best basis for making a good decision!  Still the persistence of the need to move was suggested, even after it was first rejected, so to resolve the issue of the various parties not discussing the situation together at the same time, I asked for a discussion meeting to be convened.  The issues were raised, resolved and the insistence on moving to a different home was ceased, which was creating stressful pressure on the family members.

 

The focus then went back to whether they were eligible for NHS Continuing Care Funding and how this person’s needs could be met and if there was any further support or advice on optimising the persons quality of life.  In the end it was a good result, but was tricky for a while and needed good advocacy to get the result and to relieve some of the pressure that was felt by the family.

The day everything changed!

The day everything changed!

 

I was contacted recently by the son a client, whom I had dealt with around 18 months ago.  My client has just passed away.

 

My client was very elderly and frail at the time I was instructed to assist the son, who was told that his mother needed to go into a care home.  She had had a fall, was admitted into hospital and there was concern for her safety if she were to return home again.

 

The hospital called a best interests meeting and this one was much small than others that I have attended, as there were only around 6 healthcare professionals, often there are around 12-15!  The reason for the size of the meeting was because the son was health and welfare attorney.  Nevertheless, the professionals had concerns about going home.

 

The chair of the meeting went around the meeting attendees, starting with the professionals at this meeting and asked their opinion and one by one they all said that this lady needed to go into residential care, until it was my turn.  I said that I whilst I heard what the professionals wanted, I recognised that the decision maker was the son and my real interest was therefore what he wanted.  He said that he wanted what his Mum wanted, so I asked what that was – to go home and be with her dog.  I said that was what all attendees to the meeting should work towards then and de-risk this option as far as was possible.  And once these discussions got underway, it became clear that the professionals had not really appreciated what was in place already and so how little additional support would be needed to make this possible.

 

My recent phone call was to say that Mum made it home, lived a further 18 months, was happy and got to spend that time with her much loved dog.  She was regularly visited by family, knew she was at home and knew she was loved.  She lived as well as was possible and became very poorly about 2 days before she died and she died peacefully at home in bed, with the dog in the house, having sat with her head resting on this lady’s lap all afternoon, before she went to bed for the night, but never woke up.  She died happy and peacefully.

 

What the son told me was that meeting was the moment that everything changed, that he stopped being under pressure to make decisions that Mum wouldn’t have liked.  Although he was sad that his Mum had died, he wanted me to know how grateful he was that her last months were able to be spent how she wanted.  I was very glad that he phoned and let me know.

Respite Care

 

 

Respite care

 

I act for some people as their attorney or deputy, either where they don’t have family that can do it or they are not local.  And a couple of the lovely people that I help to care for have had health issues that has meant that they have needed respite care.  And it is something that everyone dreads.  They believe that it is the beginning of the end!

 

Well, it might be the beginning of the end, but the end was coming anyway and respite might just be the booster that keeps that person at home a little bit longer.  Or the in the case of my clients, it was because they were ill or injured and needed some support to get them over their urgent health issue.

 

The choice of respite is as important as the choice of care home when someone is permanently admitted, but the criteria for the decision should be different.  Respite is just a temporary home, so they need to be able to fit into the environment into which they are coming, therefore the other residents need to be in a similar state of health approximately.  And the care home needs to ensure that as well as assessing the person and their needs, which they will need to do in order to care for them, but that they won’t over care for them and disempower them from being independent at home again, once the respite is over.

 

Respite also gives a baseline regarding needs, which is of course, only relevant for that particular period of time, if the person has a deteriorating condition.  However when they go home again, it is useful to know that they have been settled at night for example, which helps inform the level of care that they will need when they go home again.

 

Respite can be needed for other reasons as well.  Where the partner / spouse is the carer, they can easily develop carer burn out and respite gives them a break, so that they can cope in the longer term.  This need for a break is not limited to carers who live in the same property, but children or other relatives who are carers and provide a lot of support can also have issues about burn out and need a break.  They will find it difficult to relax when they are concerned about their loved one, so respite can be the peace of mind that they need for their temporary break from the caring role.

 

It is useful to stay in contact with the respite home, so that even if you are miles away, you can still know what is happening and have input into how the person is respite is being cared for.  The respite home will also find the open communication helpful, so that they can deal with any issues that crop up as whatever the issue, it might have been something that happened before and there is a strategy to deal with it.

 

Good respite is helpful, even if it is the beginning of the end.  In the cases of the clients that I assist, it allowed them to have extra support for a short period to get them over an acute period and then they are back at home again and enjoying their live

Managing the affairs of someone else – A professional appointment – Health and Welfare Decisions

 

Managing the affairs of someone else – A professional appointment – Health and Welfare Decisions

 

There are two ways in which a person can be appointed as an ongoing basis to manage the affairs of someone else and this is by appointing them under a power of attorney or the Court of Protection appointing them under a deputy application.  A person can appoint their loved ones or a professional whilst they retain the capacity to do so.  The Court of Protection will appoint someone if this has not happened, they lose capacity and need someone to support them or take over. Health and welfare decisions can only be made when that person lacks capacity to make decisions for themselves, so they are always relying on the decision making of the attorney to make decisions that they would be happy with.

 

In general, a professional appointment of a solicitor tends to be for finances only, as it is generally accepted that loved ones would know the person well enough to make health and social care decisions, but it would be hard to make decisions against medical advice for a professional who doesn’t know what the individual would want.  It is for this reason that the Court of Protection would be very unlikely to grant a health and welfare deputyship order to a solicitor.

 

So, there are limited circumstances in which I will agree to act as either deputy or attorney for health and welfare.  The circumstances are either when they have no suitable family member to act and I have had an opportunity to sit down with them and go through their medical history and have an in-depth discussion about their care priorities.

 

The other circumstance that I will act is where I am co-attorney with a family member who lives further away and needs someone to be “on hand” to deal with the issues that arise.  I would always defer to the family member who knows the person better, however with my experience, I can make suggestions to the co-attorney about how the persons care can be best managed.  This arrangement works well, I stay in communication with the family member and they are able to effectively support their loved one from a long distance away.  The attorneys and the person themselves know that the role will be undertaken professionally and that their distant loved one is supported in their attorney role, which can be distressing with an added element of feeling helpless through the distance in which they live away.

 

This is work that I love, I get to meet the person and make sure that they are cared for in a manner that is best suited to them and that their loved ones are informed, but still able to maintain their own lives.  It is a great outcome for all!

Managing the affairs of someone else – Health and Welfare

 

Managing the affairs of someone else – Health and Welfare

 

In the past I’ve discussed creating LPAs, so that you can appoint another person to manage your affairs, if you become unable to do so.  It is probably worthwhile looking at this from the other angle, how do you manage the affairs of another person?

 

I’m going to take these subjects one blog at a time, starting with how to make health and welfare decisions for another person.

 

The only time that you can ever make decisions about another person’s health and social care decisions is when they lack capacity to make decisions themselves.  Each decision is different, it relates to the complexity of that individual decision and the time in which it needs to be made.  So people can lack capacity for complex decisions (such as what care to have or where to live) and still have capacity for simple decisions (such as whether they are thirsty or want to eat chocolate).  We almost all have something that is a pleasure to us, it becomes a habit, it might be a certain piece of clothing or a certain food (chocolate is a good example) and so people know for a long time that they like that thing, even when they lack insight into the bigger picture of their situation.

 

So the things to consider when making a decision is what would the person want?  That doesn’t necessarily mean that this is the decision that you will make, but it has to be a big influence on your decision.  Sometimes what people want isn’t possible (most people don’t want to go into care, but it might become necessary).  They might not want to make a fuss and accept what is going to happen, but that also might not be the right thing for them.

 

When making a decision you have to look at all the factors, the pros and cons of any situation and in the end you make the decision yourself, if you are attorney or deputy for health and welfare.  It must be an individual decision taking into account all the information that you know about this person, it should not be a generic decision about someone of the same age, race, gender, disability etc.  People have the right to make an “unwise choice” and should not be deemed to lack capacity because they do so and this also goes for attorneys, but the unwise choice must be in their best interests.  The primary purpose of the decision should not be to end or shorten their life, even if that is the case, there need to be another motivation to make a decision to shorten someone’s life, around why it is in their best interests.  This is to overcome the potential conflict of interest that arises when an attorney is a beneficiary of the estate and will ultimately inherit, so the shortening of life will hasten the inheritance.

 

Whatever you decide, you are responsible for the decision and the reasons behind the making of that decision, so if this is ever questioned by a family member of the authorities, the attorney will be able to stand by their decision and the reasons that they made it.  If the decision is not in their best interests, such as discharging a very poorly person from hospital to their home with no package of care, it would be considered neglect and an application to the Court of Protection to have that person removed could be made.

 

I’ve been consulted about lots of these kinds of matters and they are often around going into care, the continuation of medication etc, however I’ve also had the point raised by a client that they were a football supporter and did not want to wear the football strip of their rival team.  Universally the important decisions are often where someone should be cared for and their end of life decisions.  In order to help your potential attorneys, it is useful to have a conversation about these issues, so that they know your views.

 

Adjusting to life as a carer

 

Adjusting to life as a carer

 

When you are a carer for a loved one, either spouse or parent, there is a period of time to adjust to the new role.  If you are caring for a parent, it appears to be a switch in roles, they cared for you and now you care for them.  Your life is now changed.

 

This takes time to mentally adjust to the new situation and there is a grieving in doing so, as you have lost what you have before.  However this grieving is very challenging, as it seems strange to grieve for someone who is still alive!  Many carers are clinically depressed with the struggle of the change, the new role and the thanklessness of the situation, particularly if it is a deteriorating situation.

 

It takes time to adjust, to make changes in your life, to find the time that you used to do something else, to then use as a carer.  And everyone in your immediate family has to adjust to that as well.

 

If you are working, then you can discuss any changes you might need to make with your employer.  If you don’t want them to know, there is no requirement for your to tell them, but you will have to if you want them to make adjustments for you.

 

It takes a huge amount of mental energy to be a carer, which is disproportionate to the amount of time it takes to provide the hands on support of visiting and dealing with whatever needs sorting out.

 

It might also mean that you have to give up something that you did before, at least for a while or change it.  When I was a carer, I made the decision not to go on long haul flights, it was just too far to get back, if there was a problem.  And I didn’t go away short haul very much!

 

I hear a lot of comments about how stressful it is to be a carer and about how people are able to cope.  People find ways to cope and it is useful to be mindful of your stress levels and find something that will allow you to deal with your stress, be kind to yourself.  Having good mental health is one of the most important attributes of being a carer.

 

There is a lot of pressure on you, as a huge amount of the cost of care is undertaken by unpaid carers, so the health and social care systems are set up to take account of the support that people are given.  It become something that appears expected, rather than treated with gratitude, as the generous gift of time and energy that it is.

 

The truth is, people get ill, people die, it’s not something families like to face, but nevertheless, it is true.   If as a carer, you have turned up and done your best, then that is all you can do.  You have done a good job and should be congratulated.

Mental Capacity – what does it really mean?

 

Mental capacity – what does it really mean?

 

When someone has lost their mental capacity, what does that mean?  With the Mental Capacity Act 2005, capacity is considered to be time and decision specific, but what does that mean?  Every decision that is made is made at a certain time, it might even be made each day at the same time, such as eating breakfast or getting out of bed, but each decision is made every day and tomorrow the decision to have breakfast is a new decision.  Capacity can be fluctuating, so if someone is very unwell today, they might not be tomorrow and their capacity can return.  This is why decisions are time specific.

 

What about decision specific?  Some decisions are much more complicated than others, such as the decision to move house, but a decision about what to eat for dinner is much easier, so someone with poor cognition may not be able to make one decision, but might be able to make another.

 

The statutory test of capacity at stage 2 of the decision making process is about understanding it, weighing it up, retaining it and communicating the decision.  So how does someone weigh up the decision?  The easy answer to that, is to ask them.

 

What isn’t part of assessing someone’s capacity is the “nice answer” or the “risk free answer”.  So whether someone with a cognitive impairment can decide to live with a relative or not, should not depend on whether the arrangement would work well or would be good for one of more of the parties.  Or just nice to see happen!  Ask them if they understand the proposition, look at the different aspects of it, how would an “average person” analyse the situation, unless you know they have skills in the area greater than an average person, then that’s the criteria to assess them by.

 

When deciding if someone has capacity to eat dinner, an average person would be unlikely to know how many grams of saturated fat they have eaten today, or how many calories.  An average person knows they are hungry and what they might fancy eating and that it’s approximately dinner time.  There is no reason to make the decision more complicated than it needs to be.

 

One of the key aspects of the Mental Capacity Act is the presumption of capacity, that someone is considered to be able to make a decision until it is proven that they can’t.  Capacity is often a balancing act and it is only when someone is in a coma or other minimally aware state that there is a total lack of capacity, even people so impaired that they are non verbal can refuse to eat or drink or have care undertaken.  And they might refuse to eat their meal, but agree to eat their pudding or sweets, because they know the difference and have a preference.

 

The ideas behind the Mental Capacity Act were about enabling and empowering people to make as many decisions that they can for themselves.