Tag Archives: carers

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.

Mental Capacity – what does it really mean?

31 Aug

 

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.

Caring for someone with a dementia

3 Aug

 

Caring for someone with a dementia

 

There are lots of different kinds of dementia and they have slightly different presentations, but the key points about all dementias is that they are changes to the brain, that affect memory and brain function, that is deteriorating.  There can be changes in personality and the deterioration might not seem to make sense, as someone can still retain one key skill long after they have lost other key skills, it doesn’t always work that the person with dementia loses everything at a nice even pace!  And importantly, eventually it will be terminal.

 

It is useful to get a diagnosis of the kind of dementia that the person has, as it will help the carer to understand some of the changes that will happen.  Diagnosis is also a gateway to access some services, that will support both the person with dementia and/or their carer.  And making sure that the carer is supported is really important, as without the carer their life would be much more impaired and disempowered.  The carer will facilitate the best outcome that can be achieved.  In the UK dementia costs £26bn a year, the biggest part of that figure is made up of the work of unpaid carers, £11bn, and the NHS and social services make use of that unpaid care, which means supporting the carer to ensure that carers can keep going.

 

There is no cure for dementia, there is a lot of worldwide work being done currently looking at different cures, creating new drugs and repurposing existing ones and although there have been some promising initial results, I have been told that a cure is a least 10 years away, if not more.

 

Because there is no cure, the only therapies are those that keep the person in the state that they are in, but do not roll back the clock on the progression of the illness.  These drugs only work for a certain period of time, as they will not stop the underlying progression of the illness, but will maximise the cognitive abilities that they have.

 

The other therapies that are useful are the social interactions, as long as they are meaningful and there is a lot of work being done on these.  Music seems to be quite powerful to many people.  Football dementia cafés are great for football fans and here in Plymouth we are lucky enough to have a dementia café for veterans.  Elsewhere there are dementia farms, which for former farm workers is incredibly powerful that they are once again able to participate in the workings of a real farm.  When the idea was first mentioned there was concern about the risk, but the risk is managed and the participants get a lot of value from it.

 

Carers need support and respite, they need to be able to have a life of some kind away from their caring role, for an hour, a day or a week. Family carers do an amazing job to care for people with dementia and yet they are working alongside a progressing condition that is slowly taking their loved one away.  85% of carers are clinically depressed within a year of diagnosis, it is hard dealing with the condition and its progression.

 

A person with dementia can live a fulfilling life, they can be empowered to do the things that they want to for as long as they are able to.  It takes the carer and the understanding of a whole community to do it well.

 

If you need help caring for a loved one with dementia, let me know, I understand what it is like.

The Life of a carer

5 Jan

Young physiotherapist teaching elder lady how to use a walker

The life of a carer

 

I have recently gone to a number of meetings to support carers or the cared for.  When facing a meeting or contact with either health or social care, individuals and carers in particular are already stressed.

 

I have heard a statistic from the Alzheimer’s Society that within a year of diagnosis of a dementia, 85% of carers are clinically depressed.  I’ve also heard that it is around 50% in the USA.  Statistics aside, carers are usually stressed and struggling.  They are struggling just to cope that their loved one is not well.  Dealing with that is enough!  Then add onto that another issue / problem and they can easily feel that they can no longer cope.  And these issues happen all the time, things will be fine for a while, and then the person gets ill or has a fall or has a financial issue.  Some of these issues can be resolved, but when someone gets ill, sometimes all the carer can do is hold their loved one’s hand and / or cry!  The life of a carer is tough!

 

I love this work, helping and supporting carers.  When I get involved in this kind of situation, I can support the carer to ensure that the latest issue that has arisen can be resolved and positively.  The carers love having someone on their side, I am not neutral in the situation.  And the carers have that sense that someone has empathy for them and also that they are not alone battling against whatever is happening.

 

Sadly, all too often, no-one can stop that person from being unwell and often they are deteriorating.  It isn’t great to watch a loved one slipping away over a period of months or years.  As sad as it is, it is not something that can be stopped, so my message is to be realistic about that.  Don’t aim to keep them alive, as eventually we all die.  And don’t aim to stop them from deteriorating, if they have a deteriorating condition, it will happen and you cannot stop it.  My message is that you can keep them happy and as safe as is achievable.  If you’ve done that, you’ve done a good job.

 

My message to all carers is: Well done, you’re doing a good job.  Thank you.

Carers feel alone

15 Sep

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Carers feel alone & bullied

 

In recent weeks, I’ve attended a couple of assessment meetings to advocate on behalf of a client, one of which was a PIP assessment and at the end the client is so happy that they want to hug me, not shake my hand!  I’ve always attended NHS Continuing Care assessments and Social Services assessments and always with good results.

 

With 2 clients expressly saying to me that shaking my hand is not enough, it struck me that there must be so many people out there feeling alone and out of their depth.

 

Sometimes when I’ve turned up at meetings, I can be greeted with something along the lines of “you don’t need a solicitor” or “the meeting will have the same outcome either way, this wasn’t necessary”, but the reality is that it is necessary and the outcome is not the same.  For starters, the person that I am advocating for doesn’t feel alone and nervous, they are more relaxed, as they have someone there on their side!

 

These meetings can discuss very personal issues, things that they don’t like to talk about with friends and family.  They don’t want to burden them with their issues or the keeping of their privacy, but they still want someone compassionate and understanding, who is not going to judge them.

 

Carers are amazing, they do a brilliant job of looking after people and if they all stopped, it would cost the UK billions (£11b for dementia alone in the UK).  They are often stressed because they are caring for a loved one, doing that is enough of a burden, they don’t need to feel isolated as well.

 

So if you are attending a meeting or know someone who is and want someone there on your side, give me a ring.  Love to help.