Caring for a dying relative

4 May

A coffin with a flower arrangement in a morgue

Caring for a dying relative

 

This is a very hard subject.  We don’t like to think about ourselves or our loved ones dying, but it is nevertheless an important subject.

 

If our loved one dies instantly, it is a huge shock, especially if we have not been expecting it.  If you have not had a conversation, then the next stage is commonly a state of shock before you can move into a more active mode of sorting out the arrangements.  This state of shock can last varying amounts of time, we are all different and how we deal with grief is different.

 

The death needs to be registered, the funeral arranged and then afterwards the estate can start to be sorted out.

 

If our loved one dies fairly quickly, this may give us an opportunity to say goodbye, to thank them for being in our lives and to let them know that they can go, if that is the right thing to say to them.  Saying thank you and goodbye is something we do for us, for them too of course, but letting them know that it is OK to go is something we do for them and a bit for us.  How we do that and whether we can do that will be different, sometimes we are not ready to let our loved ones go, especially if they are still young and we think that they have not finished their lives.  We can then have a little time to process the situation and try to emotionally deal with it.  And we cling to hope.

 

If our loved one dyes a lingering death, then we have that time to say thank you and goodbye and assure them that it is OK to go (assuming that it is).  We are upset and then process how we feel about it, however we cannot live on the adrenalin that this heightened state of anxiety will give us, so we get slightly used to it.  During this period of waiting, our loved one might rally, so we are given hope, perhaps only a glimmer or maybe a shining light, but we have hope.  And then they deteriorate and our hope dies.  If they have a fluctuating presentation, we can cycle through these emotions of despair and hope and we start living slightly on edge all the time, just waiting and not knowing.  This is very hard to watch as we see our loved one slowly slip away.

 

What happens if our loved one experiences a painful death?  Pain is something most of us fear.  We often wish we could trade places with a loved one in pain, but we can’t.  We can hold their hand, talk to them, feed them, play them music and lots of other things to try to comfort them and us, but we cannot take their pain.  Pain can be managed with drugs, but often it cannot be eliminated, watching a loved one in pain, whether or not they are dying is a horrible experience for both them and us.  I have been involved with many families when they are dealing with a loved one dying and a “peaceful” death is preferable, even though the death is often dreaded.

 

There is a finality with death, our relationship is forever changed, we can still love them, just not in person.  Death may be the time we stop and grieve, but if we are involved in sorting out their affairs, we may keep ourselves busy with that and not grieve and it is only when that is over that we do finally stop and grieve, which can come as a huge shock to anyone not expecting it, particularly since the death was some time before.  Greif takes time, but we can get over it and move on with our lives.

 

If during any of these stages we need help, friends and family may be around, but if we are faced with administration, legal or advocacy issues, I am here to help.  And I understand.

Care Fees – Top ups

20 Apr

Senior businessman showing a document

 

Local Authority Funding for care homes – Top-ups

 

When someone goes into care and they are not eligible for NHS Continuing Care funding, they must pay for their own care.  This payment of care is means tested, so if that person has limited assets then the Local Authority will pay part of their care, if they have savings, they privately pay.

 

The Local Authority will fund the care subject to an income contribution once the value of the assessable assets falls below £23,250.  This limit used to go up annually, but it hasn’t changed for a few years now.

 

When assessing how much they should pay towards their care, they are allowed to keep £24.90 per week from their income, this should be used to purchase their personal items, including new clothes and toiletries.  The rest of their income, they will have to contribute towards the cost of their care, including any pension (state or private) and any other income (with the exception of a few specified benefits).

 

The Local Authority will have a “standard rate” for the level of care that they have assessed that that person needs.  The Local Authority will then pay the difference between the “standard rate” and the person’s income contribution, so if their income goes up, the amount the Local Authority will pay goes down.  If this standard rate is not enough to cover the cost of care in the care home, then there may be a top-up involved.

 

Following the Care Act 2014, this is now payable to the Local Authority, who are responsible to the care home for any non-payment.  It is known as a “Third party top-up”, the first two parties are the Local Authority and the person in care themselves, so anyone who isn’t one of those two parties can pay this top up.  Which usually means family members.

 

So how can this be challenged?

 

The first thing to understand, is that the response of the Local Authority is likely to be to threaten to move that person to a cheaper care home, which if they are settled, is not what you want to hear!!  However, they can only move them if:

There is an alternative place that will take them

That has a vacancy

That can meet their needs

That will accept the rate

 

It is not enough to say that the care home down the road takes the Local Authority rate if they have no vacancy.  And importantly wherever they go, the placement must meet their needs.  What the needs are is defined in the care plan that the Local Authority should have done.

 

When the Care Act came into force, it brought in the concept of “wellbeing”, which has a statutory definition that the Local Authority has an obligation to promote.  The key way to set up the challenge is to look at the care plan and make sure that it is personalised and relevant to that individual.  So for example if that person has lots of friends in the vicinity, then it will have a detrimental impact on their wellbeing to move them to a cheaper care home that is 3 miles and 2 bus rides away for their friends to visit.  Or perhaps they need a home where they can bring their cat with them and the other nearest is 10 miles away, which is too far.

 

So the work on the challenge of the top up, is around looking at the care plan to make sure that it does meet that individual’s needs and not just an average person in care!

 

If there is no alternative placement at a cheaper rate, the top up shouldn’t be charged and is therefore challengeable.

GPS Trackers for people with dementia

6 Apr

GPS Systems for people with Dementia: The Human Rights Issues

 

Background

There are a number of GPS systems available on the market.  Some are simple GPS trackers (which work with a SIM card, like a mobile phone), others have additionally functions, such as phone, panic/distress button or watch.  Some devices are similar to pagers and some are like watches that can be worn on the wrist, amongst the designs available.   Some devices have a location service associated with them, which has a pre-set protocol that will be agreed upon when the device is set up with the company, others may just work from an App and the individual can be located whenever the carer (App user) wishes.

 

It has been agreed by search and rescue organisations that this would be helpful in the scenario that a person with dementia (or possibly a learning disability or other cognitive impairment) gets lost and needs to be found by the emergency services, thereby protecting their Article 2 – Right to Life.  The issue relates to the process of tracking an individual and their legal rights to wear it or have it put on them, their Article 3 right – Freedom from degrading treatment, their Article 5 – Right to Liberty and their Article 8 – Right to Private and Family Life.

 

Mental Capacity

The Mental Capacity Act 2005 indicates that an individual is assumed to have capacity to make a decision unless it is proven that they do not.  The capacity to make any decision is specific to the complexities of that decision and the time at which the decision needs to be taken.  The Mental Capacity Act 2005 indicates that if an individual lacks capacity to make a decision, but will regain the capacity, as capacity can fluctuate, and the decision can be postponed, then it should be.

 

Scotland

Within Scotland, the legislative framework is the Adults With Incapacity (Scotland) Act 2000, a different legislative framework than England & Wales with the Mental Capacity Act 2005.   Within the Scottish legal framework, the principles discussed in this paper are consistent to the Adults With Incapacity (Scotland) Act 2000.

 

Consent to wearing a GPS Tracker

In the situation where the individual has capacity to consent, in accordance with the test of capacity of the Mental Capacity Act 2005, then they can consent to wearing it themselves (or not if they so choose).  In the scenario where the individual has a Health and Welfare Attorney or a Health and Welfare Deputy, then the Attorney or Deputy can consent to them wearing it.

 

Refusal to wear a GPS Tracker

If someone has indicated that they do not wish to wear one, then if they have capacity then it should not be placed on them.  If they lack capacity, but have expressed the wish not to wear a tracker, then their previously expressed wish should be taken into account in making any best interests decision.  It is therefore unlikely that it would be in the best interests of someone who has expressed the wish not to wear a GPS tracker for one to be placed on them, after the lost of capacity.

 

The Issue

The remaining issue then relates to someone who lacks capacity, and is without an Attorney or Deputy for Health and Welfare.  What is in a person’s best interest will always turn on its own set of fact and will be an individual decision in every case.  However some general guidance can be considered.

 

Firstly there should be a protocol, which reflects the Principles of the Mental Capacity Act, that anything done should be the least restrictive of their rights and freedoms.  Clearly the least restrictive is to do nothing, but this could cause serious harm to an individual at risk of wandering, which may be a risk to their Article 2 – Right to Life.  Therefore any protocol for wearing one of these devices should be on the basis that it is worn and used the least restrictive manner (in accordance with Principles of the MCA), which would therefore indicate that it should only be used when the individual is at real risk of being lost and in danger and not simply to check up on them.  Therefore once they are located and it is considered that the location is safe, then no further enquiries should be made and the individual should not be necessarily removed from their location. The individual is entitled to have their Article 11 – Rights of Assembly and Association respected.  If the individual is in a place that the carer does not consider safe, then they can be located and their safety established and if necessary returned home or to hospital or to wherever is appropriate in the circumstances.

 

There is a risk that this could be used for an oppressive level of either monitoring and/or control over the life of an individual.  A person with dementia is still entitled to live as well as they can and to make unwise decisions, if they have sufficient capacity to make such decisions, even if the carer does not agree with their decision/s.

 

The individual with dementia should therefore be entitled to live their life freely, go where they choose, associate with whomsoever they choose and should only have their location told to their carer, when the balance between the risk to their life is so great that it take paramount precedence over their right to their many freedoms.

 

The issue still remains, is it acceptable that a carer makes the decision that a person with dementia should wear a GPS tracker?  MCA s.5 indicates that any act done in the care of an individual for their care is lawful if it is considered to be in their best interests.  MCA s.5 is primarily aimed concerned at medical decisions, however does include the wording “care or treatment” [emphasis added], which could extend to the wearing of a GPS tracker for safety reasons, in the same way that “piper alarms” can be used in the home and considered part of their care.

 

Alternatively, it could be considered under the Research sections of the MCA (s30-34).  These sections relate to “intrusive research”, as part of a “research project”, which would need “approval” by the “appropriate body”.  These Research sections are primarily aimed at clinical trials, however on the basis that the research is the individual’s location, then these may be the applicable sections.  In which case, in order for the research (into the individuals location) to be lawful, it would have to have approval by the Secretary of State in the case of England and the National Assembly in the case of Wales.  If therefore opinion is such that these GPS trackers are considered Research rather than Care, then approval for them to be worn should be sought, on the basis of a defined protocol, that they would only be used to the extent that the risks to life outweigh the risks to rights and freedoms.  The remaining issue is that of a “research project”, however if a protocol can be agreed, then the body making the application for approval can do so on behalf of individuals and companies for this research project.

 

The potential problems

The 2 main issues are firstly that someone with dementia will wander and have a serious accident or will be killed.  Just because someone has dementia, they should still be allowed to take a certain amount of risk.  It is about balancing the risk, but to be too risk averse just because someone has dementia would be to interfere too much with their privacy and freedom.  If it is important to the person with dementia that they can have freedom to roam, then there must be an acceptance that is the price they pay to retain that freedom is a certain amount of risk.

 

The second issue is that the carer will use the tracker too oppressively.  A good example of this is a husband and wife, if one of them were to roam and have an affair, then s/he should have freedom to do so, even if their spouse and carer, doesn’t want them to. Having an affair isn’t illegal and the spouse should not use the GPS tracker to interfere with their freedom of association, to do so, would be a breach of their human rights.  But it’s very hard for the spouse / carer not to interfere, as there is a conflict in their role of carer and the role of spouse.  The issue may not be an affair, but the person with dementia has freedom of association, so should be allowed to go where they want and meet with whomsoever they want, as long as it isn’t illegal.

 

Summary

It is likely to be lawful for a person with dementia, who lacks capacity to consent to wearing a GPS tracker, to have one placed on them by their carer if the protocol for locating them is followed and it is considered to be in their best interests to wear it.  Approval by the Secretary of State or Welsh National Assembly may be required.  In every case, it still has to be considered in the best interests of that particular individual with dementia to wear it, by their carer.

Diffability

30 Mar

Young physiotherapist teaching elder lady how to use a walker

Diffability

 

I have done some talks and talked to people with “disabilities” and there is a common theme around difference and the negative view of the word disability by some people.

 

There are some people who are very impaired and have to have almost everything done for them, including breathing and / or eating amongst many things.  Without support they would die in a few minutes / hours and often the lives they lead are not very independent and they have little or no choice and autonomy.  As a society, we may well consider them both disabled and disempowered.

 

But what about people living in the community, people working or volunteering, they are just like other people in so many ways, they work, socialise, contribute to society and pay taxes.  Isn’t that what “abled bodied” people do?  How are they different?

 

And the “able bodied”, those that do not fulfil the definitions of “disabled” for the purposes of benefit entitlement, which seems to be a relatively widely accepted definition of disability?  There are plenty of people who make choices that put them at risk.  Wearing high heels puts me at risk of falling and I cannot walk very far in them, but that would not make me eligible for any disability funding and no-one has ever said to me that they would consider me to be disabled when I am wearing them.  I know it is a choice and I can take them off.

 

I have met a number of people with significant self-limiting beliefs, which really disempowers them, they constantly self-analysis and doubt, the effect is paralyzing to their ambition, but since they can just about take part in society, again they are not considered disabled.

 

As for para-Olympians, the “super people”, they are inspiring and can often do more than able bodied people in their field and outside their field.  It took a lot of dedication to get to their state of fitness and achievement.

 

Why can’t we just be people?  We are all different, we have different things that we are good at.  The box ticking exercise works for some limited purpose, but in many ways it doesn’t serve us as a broader society.  There are 7 billion people on this planet, we have similarities, but we are all different.  The things that make us similar are global, we all want a good life and to make meaningful connections with others.

 

So let’s see “diffability”, difference, not inability, since we all have strengths and talents. #EveryLifeHasEqualValue.

Best Interests Meetings

16 Mar

Grown Up Son Consoling Senior Parent

Best Interests Meeting

 

These meetings need to take place when there is no Health and Welfare Lasting Power of Attorney in place, when the person under discussion has lost mental capacity to make decisions for themselves and there is a difference of opinion between the various parties involved.  Often the difference is between the family and the healthcare professionals looking after the person.

 

So who is involved?  What happens?  And how to they work?

 

The people involved are the person themselves, to the extent that they can participate, which may be not at all, but they may be very involved.  The person’s family, since it is usually the family that have the disagreement, but it may be that the disagreement emanates from the person themselves.  There is usually a chair of the meeting and someone to take minutes.  The other people there are those that are relevant to that person’s care.  So it might include a general nurse, a mental health nurse and doctor or consultant, a social worker or a physio.  It all depends on the needs of the individual.  There may also be an IMCA, who is an advocate for the person, they should have met and spoken with them prior to the best interests meeting and their role is to put forward that person’s view.

 

The purpose is to consider the options that are available and consider their advantages and disadvantages.  The chair of the meeting should also consider the Principles of the Mental Capacity Act 2005, which are:

 

  1. a) A person must be assumed to have capacity unless it is established that they do not have capacity.
  2. b) A person is not to be treated as unable to make a decision unless all practicable steps to help him make a decision have been taken without success.
  3. c) A person is not treated as unable to make a decision merely because it is an unwise decision.
  4. d) An act done or decision made under this Act for or on behalf of a person who lacks capacity must be done or made in his best interests.
  5. e) Before the act is done or decision is made, regard must be had to whether the purpose for which it is needed can be effectively achieved in a way that is less restrictive of the person’s rights and freedoms of action.

 

The key ones for this purpose, since the lack of capacity will have been established is the principle around best interests and that the option should be the less restrictive.  It is not the least restrictive option, since the least restrictive would be to do nothing and that is not always an option!

 

The meeting will then look at each of the proposed options one by one and each party will get a chance to say their views about the advantages and disadvantages.  Then having discussed the first option, they move onto the next one and then the third, if there is one.  Once there has been a discussion of the advantages, it is hoped that an answer will emerge after discussion.

 

Although the options are discussed, sometimes they are discussed is to “go through the process”, as someone will bring up a disadvantage that is unsurmountable, so it is never a realistic option and should have been dismissed before it was ever proposed at the best interests meeting.

 

These meetings can take 1-2 hours and seem laborious and stressful for families, the discussions seem prolonged and the process cumbersome.

 

For any family member going through this, if you feel overwhelmed at the prospect, let me know, I can attend and support you, which will take away some of the stress of the situation.  You will still have a poorly relative, I can’t change that, but I can sort out some of the situation for you.

Being a carer

2 Mar

shutterstock_74083021 (36)

Being a carer

 

Carers are amazing.  They have a tough job, living their own lives, doing the best that they can (it’s what we all try to do) and then on top of that they have the responsibility of supporting another human being.  The responsibility of trying to make their lives better and keeping them as safe and well as can be achieved.

 

They often do this will little or no thanks from the rest of the family and not always with thanks from the person that they care for.  Depending on the level of insight that the cared for person has, they may want to take unreasonable risks and feel themselves restricted, for which they are angry and resentful.  They may have side effects to their condition that mean that they self-harm or harm others.  This can be incredibly distressing for carers to watch and be involved with or the target of.  And they still do their caring role, even in the face of all that.  I’ve met many carers who tell me a story along the lines that other family members come into the situation infrequently, tell them how they are doing everything wrong and then leave without helping out.

 

Everyone who has a loved one that isn’t well gets stressed about the situation and we all have different ways of dealing with that stress.  Some people deal with the stress by avoidance, anger or blame and hence the family members come along and complain that things are not going well, what they are usually really concerned with is that things are not going well for their loved one, because they are ill.  But it doesn’t make it any easier to be a carer on the end of a family member’s rage!

 

It is not surprising that carers find caring a tough role.  If that person has only recently become unwell, they may be grieving for the loss of the person that they knew and grieving for the loss of their earlier life when they didn’t have a caring responsibility.

 

Carers should be acknowledged for the hard work that they do, in the UK each year they provide £11bn of unpaid care and 150,000 years of unpaid care each year!

 

Whenever I have talked to carers and told them that they are trying their best, so this is all they can do and therefore should be congratulated for their efforts, their faces blossom into a huge smile, they don’t hear it often enough!

 

I love supporting carers through the issues that they have caring for a loved one, they make a difference and I can make a difference to them with the issue/s that arise.  I am on their side and they are not alone.

 

My message to all carers is: Well done, you’re doing a good job, you deserve to be acknowledged for your efforts.

The Big Conversation – Dying Matters!

16 Feb

A coffin with a flower arrangement in a morgue

#TheBigConversation

 

There are a number of different organisations that are involved in this subject of talking about dying.  We live in a death phobic society, we rarely see real dead bodies, just fake ones in movies.  When a neighbour dies, they are not laid out in the dining room for the neighbourhood to come and pay their respects or anything like that anymore!  We avoid using the word “death”, there are lots of other sayings: “fallen off their perch”, “gone to the other side”, “passed on” etc.

 

And yet, this is something that eventually we will all do, yet we don’t talk about it much.  Lots of families find this a very difficult and uncomfortable conversation, but often once that first barrier is broken, of starting the conversation, the whole thing becomes much easier.

 

It is entirely understandable that people want to focus on living and therefore want to talk about living, about the exciting things they want to do with their life, the place they want to go on holiday this year or just what’s for dinner!  But it is still worth having a conversation, perhaps once a year or every other year about what you want to happen as you are dying and after you have died.

 

What sort of end of life treatment do you want?  Who will make those end of life decisions if you can’t?  What do you want to happen if you have a 50% chance of survival?  But what about a 70% survival chance or a 10% chance.  And what does “survival” really mean?  What is it about your life and lifestyle that is important to you?

 

And once you have died, what sort of funeral do you want?  Who do you want to be there?  Do any of these decisions matter or do you want your family to make some or all these decisions?  Is your family going to hold a wake, should there be a theme?  How do you want to be remembered?

 

In legal terms, this also leads into the making of a Will, which I have blogged about before.

 

Your family will be sad that you have died (hopefully) and one of the important ways that they are comforted in their grieving process is to be able to fulfil your wishes.  They can only do that if they know what your wishes are.  And they will only know what your wishes are if you have had a #BigConversation with them!