Adjusting to life as a carer

19 Apr

 

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.

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Going to hospital with a loved one

5 Apr

 

Going to hospital with a loved one

 

There is that horrible phone call, from the police or paramedics that lets you know that something terrible has happened.  It’s almost always at an inconvenient time and they want you to drop what you’re doing and head off to the hospital or come to where they are, if you are near enough.

 

If the matter is a life and death emergency, then you will be advised to meet them there and they will be blue lighted to the hospital or possibly even by helicopter.  If not the ambulance will make its way to the hospital and you can meet them there.

 

Depending on where you are in relation to your relative and the hospital, if you arrive before them, then the emergency department administrators will know they are on the way and will be able to give you an approximate time of arrival.

 

There is a four hour target of arriving at A&E and being discharged from there, either home or into the hospital, possible to a medical assessment ward (MAU).  This four hours does not start to run, until the paramedics have handed them over and there can be a queue for that, which can take up to an hour or even more.  Therefore the expectation that this will be done within 4 hours of the ambulance pulling up at the hospital doesn’t necessarily take this extra time into account.  So when you get to the hospital and pass by a place that sells food and drink, buy some, you could be waiting a long time and might need sustenance.  Make sure that you have a book or your phone is fully charged, as the waiting may be boring and you might need something to occupy you.

 

There are periods of activity and a lot of waiting as the staff undertake their investigations, they undertake a lot of their work with you nearby, but not there for reasons of access and dignity.

 

The area can be very busy, depending on what time of day and what day of the week, late on a Saturday night is not a great time for an elderly relative to have a fall!  The staff are busy and are trying hard to do their jobs effectively in a challenging environment and many retain great empathy skills even when under immense pressure.

 

If you have a power of attorney for health and welfare and your relatives has issues with their mental capacity, then it is worthwhile ensuring that you have a copy of it available, if possible.  If you’re loved one lacks capacity to make a decision, then you make it for them, so you will need to let the staff know that you have it, to ensure that any decisions that need to be made are done so, having discussed them with you and asked for your final decision.

 

If there is no power of attorney for health and welfare, then they should still discuss the situation with you and ask what your loved one would want, however the final decision as to what to do is the healthcare professionals and they are required to make a decision in that person’s best interests.

 

When someone you love is poorly, it is always a distressing time, watching them ill and/or in pain.  You are there and you are trying your best, that’s all you can do, so be kind to yourself about how stressful this situation is.

 

My key suggestions therefore are:

Be prepared for a long wait.

Get some food and something to drink during that wait.

Bring your health and welfare lasting power of attorney.

Be patient and respectful to the staff.

Be kind to yourself with how upset you might feel.

 

 

Legal Fees

15 Mar

 

Legal Fees

 

People can find paying a lawyer hard to understand, as there can be a number of fee options.  With the new businesses entering into the legal market, the option on fees is likely to increase.

 

Traditionally we work on an “hourly rate” basis, whereby the solicitor will have a specific set hourly rate, usually based on their skill and experience.  Then for each hour or part of the hour that they work, they charge their hourly rate.  Most commonly they charge 10 units per hour, so for every 6 minutes or part thereof.

 

We can then work on a “fixed fee” basis, so before we start we agree a fee and unless something that we have excluded takes place, then the fee is known and agreed beforehand.  There is commonly a small element built into the fee to take account of any contingency, so that if a big contingency takes place, the likelihood is that the solicitor will lose, but if no contingency takes place, then the client will lose. And if a small contingency takes place, then the fees are probably about right.  The margins built in are small, so there are never usually significant winners or losers.

 

We can then work on a “conditional fee agreement” or CFA, otherwise known as a “no win no fee” basis.  This kind of agreement is relevant when the matter is being litigated and on litigation, the general rule is that the loser pays the winners costs.  A long time ago one of my undergraduate lecturers said that if you know the answer to the question, you don’t litigate it and I’ve always remembered that.  Litigation is therefore an arena to deal with an issue where the answer is not clear and therefore each party runs the risk of losing and having to pay the others costs.  The answer to this is usually insurance; the price of the policy can be passed onto the loser or sometimes the claimant will have to pay a small premium.  The concept of conditional fee agreements is that if your client loses, the lawyer gets no fees, but if your client wins, then you get a percentage uplift on your fees up to 100%, but it is based on the hourly rate system.  So effectively for every hour that you work, you can be paid for up to 2 hours work.  It is very profitable for the cases you win, but the firms want to be reasonably certain that they will win, so will access the likelihood of success very carefully before they agree to the conditional fee agreement.

 

The other kind of no win no fee agreement is the “contingency fee agreement”, also known in the industry as a CFA!!  This is based on the US model of a share of the amount recovered, that we are familiar with from TV and film.  From TV and film, we are comfortable with the idea.  This is used in an administrative process and not where the matter is being litigated, so there is no risk of adverse costs (the loser paying the winner) and therefore no need for an insurance policy to protect from adverse costs.  The fees are often far higher, but the firm again takes the risk that they may get paid nothing, clients are usually happy to have a share of something, rather than all of the nothing they had without the help of the solicitor.

 

There are also things like legal fees as part of your house insurance, but this can sometimes come with restrictions, because the insurer usually wants to know that either the fees are nominal or can be recovered via adverse fees.

 

There is no right and wrong answer on fees, some people like certainty with fixed fees, some people don’t want the risk of fees, so opt for a no win no fee and some just don’t want the uplift, so will pay an hourly rate.  As long as the fee structure is understood, the choice of how to pay for fees is the clients.

Lasting Powers of Attorney – practical issues – Health and Welfare

1 Mar

Lasting Powers of Attorney – some practical issues

 

There are two types of Lasting Power of Attorney, one dealing with financial affairs and the other dealing with health and welfare decisions.  In this blog, I’m going to give some practical examples of how the health and welfare one works.

 

One of the key features of the LPA for health and welfare is that it cannot be used unless the person has lost capacity to make their own decisions.  And as capacity is time and decision specific, for each issue that arises, the carer will need to check on whether that person has capacity to make a decision.  This does not necessarily need a formal assessment of capacity, no-one wants that each time a cup of tea is given!  However it might mean asking the question about how much milk and/or sugar goes into the tea and assessing the answer.

 

Each day, we make thousands of health and welfare decisions, how much butter is on our toast and how big a gulp of tea we take in the morning, each one of those is a separate decision.  And for most of those decisions, we might not be that bothered if the carer makes that decision.  But we all have our personal preference on for example how hot our tea is, how much milk and sugar there is, so if the care communicates that, it is helpful to those providing care.  And as long as someone is dressed it might not matter if their t-shirt is red or blue.

 

So if the carer is going to make lots of these decision, why create the LPA?  Because it resolves the big issues and the issues where there is a dispute!

 

Lots of people say that they want to stay at home for as long as possible, but according to the House of Lords post legislative scrutiny of the Mental Capacity Act, Social Services are risk averse and healthcare professionals are paternalistic.  And in either case, they are not necessarily empowering the individual to make their own decision, including the “unwise choice”, which is a principle of the Act!

 

So having an LPA in place will mean that the attorney can insist that the person is cared for in their own home or discharged from hospital.  It will mean that the care that is provided to them is done in accordance to the attorney’s instructions, as long as it’s possible to provide that care.  This is not an entitlement to something that is not clinically appropriate.

 

If you have any questions about LPAs, please contact me.

Lasting Powers of attorney – practical issues – Property and Financial Affairs

15 Feb

Lasting Powers of Attorney – some practical issues

 

There are two types of Lasting Power of Attorney, one dealing with financial affairs and the other dealing with health and welfare decisions.  In this blog, I’m going to give some practical examples of how the financial one works.

 

It can work, if you are well, but have a physical impairment and cannot get to the bank to deal with your financial affairs, at this time, your attorneys should act on your instructions only.  They are effectively doing your running around.

 

If and when you ever lose capacity, your attorney will act for you, but they make your decisions, so it is important that you trust them.

 

Unless restricted, the LPA will cover everything you own, which includes all those lovely sentimental things that you own, as well as your cash and house.  Make sure your attorney knows your intentions for all of it, the sentimental stuff is where people often row!

 

So what if you don’t have an LPA, well if you can’t get to your money, then unless you’ve made arrangements no-one can, so your bills won’t get paid.  If you live at home, your repairs or new equipment can’t be purchased, which will impair your ability to successfully live at home.  If you are in a care home, then your fees won’t get paid and the home will not want you there.  Often the Local Authority will step in on an interim basis to meet your fees in the short term, but they will want reimbursement and if necessary will take on deputyship themselves (which is like a power of attorney, but granted by the Court of Protection), which is a far more expensive option.

 

So what can your attorney do with your money?  It is meant to be used for your benefit, so making modest gifts probably is for your benefit, if you have always made them, you could appear ungenerous if you stopped giving Christmas and birthday presents.  However the power to make gifts is very limited, it must be “on occasion”, such as birthday, Christmas, wedding etc and it must be reasonable in all the circumstances, including the size of the estate, which means that the attorney cannot give themselves thousands of pounds just because they fancy it! Or at least they shouldn’t, which is why you should trust your attorneys.

 

They can spend the money on you, on your needs, to ensure that you are housed, clothed, fed and cared for.  And beyond these basic needs, depending on how much money you have, they may also buy for you some luxuries that you like, such as a holiday, if you are capable of travel.  Whatever they spend your money on, it should be with you in mind, not just what a generic person like you would want.  Some people love chocolate, others are allergic, so whatever your guilty pleasure is, if you have enough money for it and there is no clinical reason why you can’t have it, your attorney should purchase this for you!

 

If you have any questions about LPAs, please contact me.

Assisted Dying and Disability

1 Feb

 

Assisted Dying and Disability

 

There is a new case going to the Court soon with a disabled person asking the Court to allow them to take their own life with the assistance of a medical professional, which is currently criminal in the UK.  http://www.bbc.co.uk/news/health-42733993

 

But should it be?

 

If I want to I can take my own life, it is not criminal.  What I cannot do is: aid, abet, counsel or procure mine or anyone else’s death.  So if I choose to take my own life, it has to be my settled decision and the act of doing so must be mine and only mine.

 

Is this discriminatory?

 

I can choose to take my life in a number of ways, but what if I wasn’t?  What if I had a physical health impairment that meant that I couldn’t do that?  It would mean that there is another part of society that I was unable to participate in.  The Equality Act 2010 says that where there is someone with a disability who needs access to something, then “reasonable adjustments” should be made to allow that person to do what they want / need.

 

The taking of a life is a huge, which most of society wishes wasn’t necessary, but in the depths of despair it can seem the only way out and is a difficult final action to take.  Many people have suicidal thoughts, not all of them act on it, it is part of depression.

 

The Mental Capacity Act has 5 principles and they are aimed at empowering the individual, including principle 3: No person is to be assumed to lack capacity because they make an unwise choice.  Because we all make what others would think is unwise choices from time to time!  So, the unwise choice to take one’s own life is not in itself sufficient to indicate that that person lacks mental capacity to make decisions, it might just be their physical impairment.

 

And who wants to be that person who assists?  That is a very difficult role to take on, since the entire subject is difficult and socially challenging to deal with!

 

Terry Pratchett took this argument to the Court a few years ago in 2011, the arguments will keep coming and the Courts will keep being faced with this issue.

 

I’m always sad when I hear that someone has taken their own life or wants to, my wish for them is that this desire and its underlying causes weren’t an issue in their life, but life isn’t always like that.  I wish all parties facing this issue the best.

Disability

18 Jan

Disability

 

I’ve looked at the World Health Organisation statistics on disability and whilst they are global, it is relevant to us here in the UK, so here goes:

 

There are over a billion people living with disability, that’s 15% of the global population.

 

Disability disproportionally affects vulnerable populations, such as women, children, the elderly and adults who are poor.

 

People with disabilities often do not receive needed healthcare! Whilst this might be more relevant to the global population, here in the UK, disabled people are still badly treated, which is demonstrated through various whistleblowing scandals and as we have NICE guidelines, which effectively rations healthcare, disabled people might not get all the treatment they need.

 

Children with disabilities are less likely to attend school than non-disabled children.  In the UK, school is compulsory and non disabled children tend to be taught to their ability and can be put in “streams” or have access to grammar school.  Disabled children can attend mainstream school, but can be more at risk of bullying.  When disabled children attend special needs schools, there are higher staff ratios, these schools are for more profoundly disabled children and teaching to their ability can be difficult, when it is hard to work out what their ability is.  So this global statistic has relevance in the UK.

 

People with disabilities are more likely than non disabled people to be unemployed.  In England & Wales, we have the Equality Act 2010, which incorporated the Disability Discrimination Act 1995, which gives disabled people the legal right to expect “reasonable adjustments” to be made for them, but the recent post legislative scrutiny of the Equality Act by the House of Lords indicated that there is still a lot of work to be done.

 

People with disabilities are vulnerable to poverty.  This links with the statistic above, if a person cannot get work, it is harder to lift themselves out of poverty.  They might start a business, but without ever having experienced work, it can be more difficult to make the connections for a successful business.

 

Rehabilitation helps maximise function and support independence.  With the NHS, we are fortunate in the UK to have access to rehabilitation.

 

People with disabilities can live and participate in the community.  Normalising “difference” is really important to the experience of people living in the community and the Dementia Friends social awareness movement is a good example of normalising disability.  The knock on effect of empathy to one condition, is it often leads to acceptance of other “differences”.

 

Disability barriers can be overcome.  All new building projects should be designed with good access in mind, which not only includes things like ramps for people with physical health impairments, but with a view to other disabilities, including hidden disabilities.

 

The Convention of Rights of Persons with Disabilities promotes, protects and ensures the human rights of all people with disabilities.  This is a concept about which I am passionate, people are people first, they are not just their disability, there is always more to them than that and if/when they are seen as people with dealing with the burden of their disability, the compassion to made adjustments or support them can progress.

 

#EveryLifeHasEqualValue