Tag Archives: DisabilityAwareness

Dying and Bereavement

26 Oct

 

Dying and bereavement

 

When a family member is terminally ill, everyone deals with that information in different ways, that includes the person themselves.  The Kubler-Ross model has 5 stages: Denial, Anger, Bargaining, Depression and finally Acceptance.  These stages can work for all parties involved.

 

Family members can therefore choose to be very involved or not at all and this difference of grieving process has an impact on family relations, at an already difficult time.

 

Some people are afraid of dying and don’t want to do it alone, they will hang onto life for as long as they can.  Others accept it and at the end willingly go there, rather than cling to life.  Some terminally ill people don’t want their family to witness their death, they consider it personal.  So for family’s who are on a 24 hour vigil, the 5 minutes in which they leave the bedside to have a comfort break will be the 5 minutes that person chooses to pass away.  Others want their family there, will white knuckle the hands of a loved one, rather than let go and feel alone.  Either situation has its emotional impact on all parties.

 

Some family members will communicate with the others that turn up and let them know that if there is anything they can do to help, they will, yet when asked, are always busy with something more important.  They just can’t deal with facing the situation.

 

Some family members want to be involved with everything, do as much as they can, which might be more than is required and might be an invasion of the privacy of the dying person.

 

So what is the answer?  There is no “one” answer and there is no “right” answer.  Everyone deals with death and grief in their own way.  It is important to remember that, however anyone else deals with it, they might not understand how you do and vice versa.  So just give everyone a bit of slack.

 

When in doubt, imagine yourself in a week, a year and a decade and do the thing that means that you won’t have regrets, whatever that is.  And whatever you choose, know that you are not the only person in the world that has felt that, grief is universal, even if you feel alone in the moment.

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Managing Risk for People with Dementia

21 Sep

 

Managing risk for people with dementia

 

We all take risks, we do it all the time.  We cross the road without looking carefully, eat too much, exercise too little, drink too much alcohol or smoke to name just a few of the things that all of us do.  And sometimes this has serious consequences, with the number of road traffic accidents there are a year, but there are far fewer accidents, than the numbers of people carelessly crossing the road each day.

 

People with dementia are still people, I have red hair (sometimes it is even referred to as being ginger!), but I’m not just known as that, I’m also a solicitor, resident of Plymouth and parent.  There are lots of different facets to me, but when dealing with a person with dementia, why is that the key facet that is seen?  They are more than that, much more.  So if I can take a risk, why can’t someone with a dementia?

 

From the human rights aspect, they can, they are still human and human rights are universal!  The overriding human right it the right to life, so as long as they are not seriously risking their life, everyone, including people with dementia should be allowed to make unwise choices.  We are all allowed a private and family life, freedom of religion, as well as freedom of assembly and association and freedom from discrimination.  We should all be allowed to exercise all of our human rights and it is only at the point that we risk our life, should our ability to exercise our human rights be curtailed and they should only be curtailed to the extent needed to protect our life.

 

In the Mental Capacity Act 2005, there is legislation regarding ensuring whatever decision is made on that person’s behalf, it is the less restrictive of their rights and freedoms.  The key word here is less, it is not least, to do the least restrictive would be to do nothing, but that might mean that it is too risky and becomes a risk to their life.  How many people with dementia say that they want to live at home with no help?  They might want to, but would be dead in a few days if they did, as they have no ability to care for themselves.  So the less restrictive might be to put in a daily carer, possibly even multiple times per day.

 

People with dementia are still people and like the rest of us, are completely unique, with their own views about themselves and the world around them.  They might be very risk averse or happy to take risks, even big risks.  All their characteristics needs to be taken into account when making a decision about someone with dementia, including what they say now, not just what they would have said when they were well.

 

The decision should be the less restrictive, let the person with dementia feel like they are still a person and not just a medical diagnosis and let them take a certain amount of risk as too restrictive a regime might be just as bad and dangerous for health as a too unrestrictive one.  Balancing risk is about seeing the person first, as a real person and not just their dementia.

 

And to all carers out there, from time to time, you may get it wrong, but mostly you get it right and just by caring, you get it right.  Keep up the good work.

 

If anyone needs advice in caring for a loved one, let me know, I understand.

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

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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.

Disability Awareness and the House of Lords post legislative scrutiny

2 Jun

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Disability Awareness and the House of Lords post legislative scrutiny

 

In the UK there are 7 million people registered as disabled, that’s about 10%!  Some of those disabilities will be catastrophic, these people will need 24 hour specialist care and within day to day society we will have limited contact with them.  At the other end of the spectrum of disability are people who live independently and have lives that look very much like those who are able bodied. And as far as spectrum’s go, there is everything in between.

 

Most of us have experienced temporary disability, if we have ever been ill or injured, we are fortunate enough that we get better and that the illness or injury is not persisting.  So if we have all experienced some level of disability, then hopefully that will give us the ability to have empathy for those who experience disability that does persist.  I am of course not suggesting that illness and/or injury is the same as long term disability, just that it can give an insight into what it is like living with an issue.

 

There are lots of different diseases, injuries and conditions and we will not be able to experience them all, we can never fully understand what it is like to live with a disability, unless we do live with it.  Disability is a personal thing and for those people who do talk about, they often don’t share all the details, but that is exactly the same as everyone, people don’t share all the details of their personal lives with others, just the bits we want to.

 

The biggest adaption that people living with dementia and other disabilities is a sense of kindness and compassion, as well as to be treated like a normal person and not just to be treated as a carrier for the disease, with people seeing only the disease.  It is easier to forgive a blunder in the way that someone is spoken to, if the spirit in which they are spoken to is kindness.

 

The House of Lords post legislative scrutiny said that disability should be considered from the point of view of the person with disability, not the company/organisation or person trying to adapt to it.  The only way to do that is to talk to that person and find out what is their priority and what they need to be done to support them.   This may be a difficult conversation if this has never happened in this organisation before, but it is through these difficult conversations that better understanding of the issue will come.  And once conversations about disability become more normalised, then accepting disability as a normal part of society will follow.

 

And next time an able bodied person becomes ill or injured, have empathy for the fact that you will get better, you are lucky and you do not have to live with this forever, others have a different experience.

Disability and the House of Lords post legislative scutiny

12 May

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Disability Awareness and the House of Lords post legislative scrutiny

 

Following on from my previous blog I wanted to discuss disability awareness in broader terms and not just relating to my relative.

 

The House of Lords report of the Equality Act 2010 said that disability should be considered from the point of view of the person living with disability, rather than the burden that it might be to an organisation.  This is a fundamental shift about whose point of view is key.  But there are lots of different disabilities how can any organisation understand the point of view of people with such a diverse range of needs?

 

I am part of the Prime Minister’s Dementia Challenge Team, am a Dementia Friend, a Dementia Champion and a Purple Angel Ambassador.  As head of the Vulnerable Client Team at Nash & Co, I meet people with various disabilities on a regular basis.  So what is disability awareness like for them?

 

As taken from the Dementia Friends Awareness session, things can be misinterpreted by someone living with dementia.  So lines in a carpet could look like snakes to them and black mats at the entrance of a shop, could look like a hole.  So how would anyone walk across a floor made of snakes?  And what would anyone do when faced with a huge hole in front of them?  The answer is that they would behave in a way that an able bodied person might not understand and to them it would look different or dare I say weird!

 

If someone has a visible disability, such as a wheelchair, it is easy to perceive that they might need some support in their lives.  It is the invisible disabilities that warrant extra care, as the presentation may just look different and inexplicable and because of exactly that, extra care and compassion is required.

 

How we understand disability is not by trying to understand every single medical condition, that would be too much detail, but simply to know that if someone is behaving in an unusual way, it does not necessarily mean that they are drunk, on drugs or psychotic.  I have heard a story about a man arrested and put in the police cells to sober up, as he was drunk, only to realise 8 hours later when he wasn’t “sobering up” that he had dementia!

 

So how does anyone deal with this situation?  The first thing is don’t be scared, people with disability are still people with hopes and dreams like everyone.  Talk to them, have some empathy, be compassionate towards them and any behaviour they may be displaying.  Then ask them what they need.  Walking them around a black mat doesn’t cost any money, often the adaptations that need are not expensive.

 

People with disabilities don’t want to be treated as second class citizens or patronised, they want to be treated as people and depending on their disability, they may be in jobs significantly contributing towards the economy and the services in it.  Those not in work still contribute, as they allow us to demonstrate our understanding and compassion towards all, which is no small contribution, as smile from another human is always valuable.

 

So how do we deal with disability – with compassion and ask the person, it may just make your day and theirs!