WHY SUPPORT GROUPS WORK.

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Some of us are afraid of support groups. I think we have the idea that we will be required to stand up and make a confession about weakness, when quite the opposite is true. We are afraid to share what we may perceive as embarrassing or shameful. The idea that we aren’t coping is exactly why we should go, but many of us wait until we are almost broken apart before we allow ourselves to go. These are just some of the reasons why not to go. But these are also all the reasons to go.

There is nothing as encouraging and strengthening as spending time with people who really truly understand what you are going through. Dementia strips away a lot of the pettiness in life. It’s a sort of humbling humanising experience that well managed can strengthen us.

In the right group you will meet people just like you who are at the start of this journey and people who are a long way along the road and who are still making it. That’s encouraging in itself.

Here are some of the reasons to join a group:-

THE PROBLEM IS NOT THE ANSWER.

Find a group that is focused on solutions. One that acknowledges the problem but then moves to seek a way forward. A strong well informed group will be able to share solutions and not spend time echoing the problems. 

MISERY SEEKS COMPANY

You don’t want to spend time with negative people so find a group with the ability to be positive and encouraging about finding solutions. Find people who understand the grief and the heartache but also know about strength and resilience.

WE BECOME THE COMPANY WE KEEP

A support group should help you to keep hope alive. What you hope for will change,  but as long as you have some hope about something you’ll feel a lot more confident.

SHARING IS CARING.

We talk to hear what we are thinking.

If you are caring for someone with dementia I know for sure that you have something to say that could change someone’s life forever – including your own. Nobody cares for a person with dementia without gaining a lot of new insights and knowledge. Sharing this can be the way to build the muscle you need to get you through this time.

WE EXPECT TOO MUCH FROM DOCTORS.

Doctors play a vital role, but your doctor doesn’t know everything about the lived experience, especially if they haven’t been through dementia in their personal lives. They need to stay objective. Their primary role is diagnosis and medicine and that’s a good thing. It’s a frightening experience to find out that your doctor doesn’t know all the answers and find yourself wondering aimlessly around not knowing where to go for help. A good support group is your soft place to fall.

 THE QUALITY OF THE ANSWER IS IN THE QUALITY OF THE QUESTION

Simply put – you will often find that someone else asks the question you were too afraid to ask – or better still – they ask the question you didn’t know you needed to ask! You knew the problem but you didn’t know what to ask to solve it.

A GOOD GROUP WILL BE OPEN TO DISCUSS THINGS THAT OTHERS WON’T OR CAN’T.

In my experience there are groups where it’s clear that the facilitator doesn’t have the capacity to deal with certain issues. Facilitators who are too afraid to take the lead. A good facilitator knows where the boundaries are and is aware at all times of the emotions in the group. You should be able to rely on your facilitator for that.

A GOOD GROUP WILL HELP YOU MAKE BETTER CHOICES.

Anyone in the world of dementia care knows that the issues are so vast and varied and that everyone seems to have an opinion or an idea which means you can end up very confused and frustrated. When you find the right group you should be able to come away from a meeting having gained some clarity about an issue. 

GRATITUDE.

You will always meet people who are way worse off than you which will leave you feeling grateful and encouraged to go on. You could even find yourself able to share something that could help another person in more ways than you can imagine. Maybe you’ve been where they are once before and you can tell them what you did that helped you through it. I have received some of the most profound ideas from the most unexpected sources.

FIND A GOOD MATCH

The most important thing is to make sure to pick a group that resembles your contempories. Don’t join a group that is made up of people you would never have chosen to spend time with. If you didn’t relate to them then you won’t relate to them now.

ONCE YOU ARE IN THE RIGHT GROUP THE BENEFITS ARE ONGOING.

I have a friend for life – at least one – from a support group. We go out together, and, yes we do talk about our loved ones a lot - because we can, but we also talk about the future and in that way we make each other braver imagining together that despite everything,  we can survive this and could even have a bright new future – changed as we are forever by this experience. Actually, we even laugh a lot – at ourselves.

In my view the very best group is the one run by Livewell Suites who have a meeting once a week somewhere in the Cape Peninsula. I have spoken at the Kelvin Grove group in Claremont and will do so again in August at the Somerset West venue.  Besides the good coffee and the freshly baked cream scones – the groups are friendly and always helpful. Terry and Nicolette who organise and run these groups are some of the kindest people I know. 

Livewell Villages

41 Lourens Street

Somerset West

021 851 6886

 

 

Remember to Remember.

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No Spouse, No children, No Caregiver: How to Prepare to Age Alone

An American statistic shows that 69% of people will need care in their elderly years and only 37% of us think we will.

I’ve recently come across a new phrase to describe those of us who are aging alone.  I don’t think any of us want to find ourselves known as an ‘elderly orphan’, but maybe you have come across people who fit this term already?

How has it happened that older people find themselves in this situation?

One way that this can happen to us care givers, is to overlook and forget our own needs and not spend enough time thinking about our own futures. It’s very easy for us to get lost in the current crisis and forget to keep making plans for ourselves for our own futures.

If you have children and family they may be the source of support for your old age.

But not all families are willing or able to supply that support.

Besides you may outlive your children.

Many people now put a career ahead of having children which means that the possibility of aging alone increases significantly.

Many of us are divorced with or without children.

And many families are spread across the world at distances that are not easy to get to once you find yourself in need of support.

Most of us would like to have a say and keep control of our lives, so its a good idea to start thinking about that now which means you are more likely to succeed.

Here are some ideas to consider;

PLAN AND SPEAK UP.

If you have the finances and the resources to make professional care your solution, then it’s a very good idea to start researching now. It may seem like a very long way off, but the sooner you know what your options are the better you can provide for them. Don’t be afraid to take the next step even when you think you are too young to do it. It’s comforting to know that you have chosen the place and the manner in which you want to be live when that time comes, if it does. If that means you must move there earlier, then keep the end goal in mind as a way of encouraging yourself to take that bold step now.

ACT EARLY.

If for example you decide that you would like to move to a retirement village one day find out what that really means. You need to know that there are those that require you to put your name down before you turn 60.  Put your name down – it’s a good way to create a plan B.  You can always change your mind later.

 MAKE NEW FRIENDS NOW – AND KEEP THE OLD.

There is no way to overstate this. It’s a good idea to have a mix of older and younger friends – some to challenge your thinking and some to create the comfort you get from spending time with your own generation.

APPOINT A PROXY.

Choose someone you trust and who knows you well. Make sure they know all the important things about you from who your doctor is to where your will is kept. There is a lot of comfort in knowing that somebody can stand up for you if and when you can’t.

CONSIDER MOVING.

Trying to maintain the status quo through out life often means that we stick to things that no longer serve us and miss the opportunity to find new and refreshing ways to live.   

Thinking about how you want to live in the future can make moving an exciting event. And if you do it while you are still young, all the better for you.

There are more and more people considering their own form of communal living i.e. buying a big property together and using it to live in as one large family.

I’ve come across people who live at sea on an ocean liner as their permanent home.

There are many ways to do things.

LIVE WELL.

Eat well, exercise well and challenge yourself to go for some adventure. Explore and learn new things and make yourself a really interesting person to talk to. And make very sure to use, understand and enjoy technology. It’s a very big mistake to reject it.

STAY IN TOUCH AND INFORMED.

If you fall out of what is happening in the world you will have less and less to talk about. That is the easiest way to lose the company of others. This means knowing about more than just the bad news.

Somehow through all that you are already going through, find a space somewhere in your mind to think about how you would like to live in a future that you have designed for yourself!  

Loneliness

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Last year the British Prime Minister, Theresa May, appointed the first ever Minister for Suicide and Minister for Loneliness. A sign of the times amongst a growing awareness that mental health issues need to be taken far more seriously and given the recognition they deserve.

I don’t know about you but over the last few years I’ve come across a surprising number of friends and acquaintances who’ve confessed to being lonely and who initially thought they were just sad or grieving -  but after some honest soul searching realised they are indeed suffering from loneliness and felt really guilty and ashamed to say so.

Those of us who are caring for a loved one with dementia have extraordinary demands placed on us and even when we know we are lonely we can mistakenly think we can’t do anything about it - but we must, we have to and we can. The what, the how and the where to begin, can only come once we accept this truth.  Admitting it - even if initially just in private, is often the scariest thing to do - but once we have accepted it we can then start reaching out in the right direction and focus our energy more accurately in the hope of finding some relief. Now we know what to aim for. Now we know what we are looking for. That is how we find answers and solutions. That is how we find new direction. Of course it’s much easier to fix loneliness when it’s not attached to a crisis. Those of us who are feeling punch drunk, overwhelmed and disorientated can benefit greatly by working through these times together.

I have many ideas and thoughts to share on this subject and would welcome a call or an email from you.

 

 

 

 

A New Day and a New You.

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It may be strange to think of yourself as successful when you’re in a crisis,  but if you are still standing there must be a lot of success in your life.

In most families there is at least one person with a chronic disease or a frightening problem to deal with. Everyone is dealing with some sort of catastrophe – some sort of tragedy. It seems to be the norm.

Catastrophe intimidates all of us and tragedy triggers self-doubt which makes it easy to become overwhelmed and traumatised.  But if you were to look back over your recent past at all the many threatening, frightening and difficult things you’ve had to endure  - you will see that you came up with ideas and solutions that are either tried and tested or brand new and that worked!

You might have stood up for yourself for the first time in your life.

You might have allowed others to help you for the first time in your life.

You might have changed something major or something minor - but you faced the threat and changed something and in a way that is helping you to build a stronger more reliable future. Maybe you can trust yourself more than you thought you could?

Most of us only pull out the powerful part of ourselves when forced to and that’s a pity.

From now on apply whatever you’ve learnt consciously. Repeat and repeat until they become a habit. Don’t keep them just for a crisis. Grow from your crisis. That’s how you will find meaning in your suffering.

 PS. Tragedy can strike and take you by surprise at any moment but so can happiness – are you ready for it?

 

 

Keeping it private.

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Which of these life experiences are you going through right now?

Death of a loved one.

Separation from a loved one.

Loss of a home or moving to a new home.

Chronic illness or injury to yourself or a loved one.

Financial worries.

Loss of a job/career.

Starting a new job/career.

These are generally considered to be the most stressful landmark events of anyone’s life. These are the things that put real meaning to words like catastrophe and tragedy.

When someone you love is diagnosed with dementia most if not all of these events come to life at once.

There are even some to add like grieving a life and a person and a time and a way of living while still caring for that person. In the case of dementia we call this ambiguous grief meaning it’s a confused grief. It’s a grief of a very unique kind.

What also isn’t on that list and yet is very common is family conflict. From issues of the past that surface at this this the worst of times – to conflicts about the best way to support and take care of the person suffering with dementia. Everything seems to come out in the wash!

This is overload in the extreme and nobody should have to go through this on their own.

Do not think you are weak if you are struggling. Look at the list again! And yet for many if not most of us who are caring for someone with dementia, we expect ourselves to be able to cope alone and still consider it a failure or weakness or maybe even an embarrassment to say we are not coping and we’d love to have help.

WHERE TO BEGIN

To be fair, we all struggle with where to begin. How to go about finding solutions, finding answers, who to speak to, what to prioritise. In essence we lose direction.  When we don’t know where to start, we do nothing. We try to survive knowing all the while that we’re falling apart and waiting for the other shoe to fall. This creates an intense anxiety and living in a state of anxiety is unhealthy for everyone.

TAKE ACTION

We are designed to make progress. Do not feel guilty about wanting to make progress!

To make progress we need to know where to start and what direction to go in.

For most of us what is happening feels like too much to share with everyone. We’re confused, anxious, exhausted and heartbroken. What we long for is one person to talk to who gets it – someone who knows what this is like and who really gets it! Someone to confide in and work with in private– someone who will keep our story confidential. Someone who can help to rebuild our confidence so that maybe one day when we are strong again we too can share our story with others, because remember that all the while we are all becoming experts!

DO NOT THINK OF YOURSELF AS SOMETHNG YOU ARE NOT.

If you are not able to cope then that is your truth. If you have reached your limits and the end of what you have to give, then you need to be honest and start working on finding another way.

Remember that what works for you may not work for someone else, so whilst there are some common practices you will also have to find your own unique and sometimes creative ways.

STUCK AND FRUSTRATED AND LOOSING HOPE.

When you first look at a bubble, all you see is the bubble. Look closer and you see a world reflected back at you.

When dementia arrives in your life all you see is dementia. All you see is a problem. Until you look further you don’t see what is within that problem reflected back at you that might help you to find your way to solving the problems that dementia brings your way. Sometimes solutions are staring you straight in the face but you don’t see them for the looking!

START HERE.

If you really want things to improve the best thing to do is find an independent and private coach. Someone who really understands what you are going through and knows how to help you prioritise your needs. Someone who will get you back and work with you to get you through this time.

You need a unique tailor made solution. One that works for you – and your loved one and perhaps even your extended family.

How do I know this?

Well when I found myself with more questions than I had answers for I discovered that there wasn’t anyone who could help in an inclusive and knowledgeable way – someone who really understood what dementia does to a care giver and to a family, and that is why I made myself available to help and I created Dementia Support where the help you get is coming from first-hand knowledge and first-hand experience. Nobody understands dementia like the one who is doing the caring. We are the real experts in this field.

I believe you can get through this time with your loved one in a way that preserves dignity and compassion whilst building a history that you will one day be proud to call your own. That is how legacies are created.

I look forward to meeting you.

 

 

 

There's been one tragedy - now don't let there be two.

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Dementia dismantles everything and everyone it touches. Nothing escapes it. There is no hiding from it or denying it. It has its own determined and relentless agenda.If you are supporting a loved one with dementia you know this already. It smashes your vision for the future down into a thousand tiny pieces. It takes all your dreams and breaks them apart. Gone is the plan and the dream and the vision you once had for the future.

In this time of immense challenge and heartache you must and can still keep hope alive – for both of you. To take care of the person your loved one thought worthy of love and care – that’s you – is to honour them and what they held dear.

Somehow you have to keep on believing in life because although that’s very hard to do the alternative is worse.

There are many hurts and betrayals along the way that come from the least likely and the most likely sources,  and you have to learn to rise above them all.

In amongst such a devastating tragedy comes the demand that you reframe and redefine your new life and you do it whilst you are still caring for your loved one who is living with dementia.

Life goes on with or without you and despite your tragedy,  and so to survive you must learn to once again, rise above all of it and begin to work out what your new life will be like  - you have to learn to keep moving forward – with life. You have to start to build a new dream and to create a new vision for your future. That is how you will keep hope alive!

You must learn to climb to the top of a very steep mountain so that one day when you get to the top you will be able to see forever into all that life still offers you.

You must learn what real courage is and remember that others are going through some really hard and difficult things too.

And the best way to do all of  this is to take action – to move – every day to move something – to do something - every day – something that shifts your energy in the direction you want to go because to do nothing but endure the suffering is like living in an endless Sunday afternoon.

There’s been one tragedy - now don’t let there be two.

We are holding a workshop on 6th October at Stoep Start Up in the Southern Suburbs which is designed to help you get started on rebuilding your life in the midst of all that you may still be going through.

In the workshop we will talk about what dementia is and how we can respond to it in a way that eases the suffering and gives us the courage to go forward in a constructive and useful way.

We will start the journey to the top of the mountain so that one day when we look back we will be able to say – ‘it got better’.

Details for the workshop are on my Facebook page at Dementia Support – click the Facebook link to go straight to all the information you need about the workshop.

Note: - There are sponsorships available for anyone who would like to attend the workshop.

When you book just make sure to request a sponsor.

 

 

 

 

 

I'm back and ready to help you find solutions!

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After a seven month intensive project training staff at one of Cape Town's largest care facilities in Dementia Caring Skills and providing support and assistance to the families, friends and loved ones of people living with dementia, I'm back in my happy place; writing, teaching and consulting privately as well as doing presentations and running workshops, with the added and invaluable knowledge and insight of what happens within such a large facility. I would have to say that the feedback I got from the staff made it a really inspiring experience.

Here are a few examples that I have summarised of the feedback from the carers:

‘Our residents are now not so likely to become aggressive because we learnt that aggression is often actually more about frustration than aggression, and that if the attention given to each resident is personalised in a way that makes the resident feel less frustrated, then aggression becomes rare’.  

‘We really now understand the importance of communicating with each other to make the entire floor run more efficiently and with a lot more accuracy and success.  Handing over small and large details and including the student carers in all these handovers too has made everything run more smoothly for us’.

‘We learnt that it is respectful and very helpful to remember that new staff should be shown simple but vitally important things such as where the hand sanitisers are. It’s important that all staff know how to answer the phone, how to use the lift, where the linen is, where the laundry and laundry bins are. Taking the time to inform all staff, even the most junior ones, goes a long way to running a more efficient facility and eliminates mindless repetitive responses that don't always adapt with the changing needs of the resident which once again can lead to frustration and aggression. Adapting to  the changing needs of the resident is not only helpful for the resident,  but makes  our lives as carers so much more interesting. This way we the carers can develop our skill levels in a practical and sustainable way and then everyone wins’.   

‘Knowing the history and story of each resident helps us to know who we are working with and makes it so much easier to understand what our resident is trying to communicate to us. For example, knowing that someone used to be a sports lover means we can talk to them about sport!

Teaching the carers to always be ready and prepared for each residents needs also made a significant difference to the levels of stress and anxiety of the entire environment. Otherwise waiting for something to happen and then trying to deal with it, means that the resident has to accommodate the delay, which they mostly can't do, and therefore it’s the resident who pays the price of having to deal with the delay. This is simply the wrong way round to deal with things - so making sure that whatever is going to be needed is always on hand, really does reduce the stress levels for everyone!

It was very satisfying to see the carers confidence levels improve and to see their eyes light up when they learnt something new and then tried it and it worked.   

And most importantly it was really satisfying to establish a routine that took the residents into the garden for lunch every day when the weather was fine,  or even just for a stroll or to spend some time sitting outdoors in silence. Going downstairs to sit next to the fireplace on a cold day for a change of scene makes a very big difference - especially for the staff.

Reducing the mundane elements of caring for someone who is living with dementia brought the humour back and lightened the load of this very demanding work.

 The heart of any care facility is truly represented by its carers for whom I have the utmost respect and admiration for their dedication and willingness to serve and help. Witnessing them in action has left me richer for the experience.

 WORKSHOP NEWS

 I will shortly be running a private one day workshop course in the Southern Suburbs for anyone looking for practical advice and useful and successful ways to manage the demands of being a care giver to someone with dementia. This workshop is aimed at loved ones who are at the start of the dementia journey or who are stuck and need guidance in coping with the challenges that dementia brings into a family’s life. Dementia is a complicated and extremely alarming illness that turns everyone's life upside down. Nobody is ever ready for dementia and as a result most of us have no idea where to go and what do to get through this intense ordeal.  Details to follow.

In the meantime, you are welcome to put your name down for this workshop. You can also call me for any help you may need in finding solutions to deal with your problems regarding the care of a loved one with dementia.  Just remember that for every problem there is a solution. Keeping hope alive and making progress by taking action is the best way to keep yourself strong.   

 

 

    

 

How much is enough?

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The question of how much activity and stimulation a person living with dementia needs or benefits from is complex.

It seems logical to want to keep a lot of activity going, but many people with dementia resist this and in fact seem to get over stimulated and anxious when there is too much going on.

Its really important to remember that they all  have different attention spans. Everyone's brain gets tired at a different pace - which makes group activities even harder to succeed at.

Another reason that some resist activity is the fear of failure or what can be called performance anxiety.

Sitting peacefully in a garden is often the best form of acitivty. Just the walk to the garden and finding somewhere to sit can be very demanding for a person with dementia. Once seated they are naturally taking in all the multi sensory stimulations around ie the birds, the breeze in the trees, cars passing by, conversations going on in the garden, fragrances, the heat of the sun  which are often plenty enough and all that is needed.

Another way to eleviate the stress but keep the activties going is to arrange activities and events that can be watched without any kind of performance or interaction required from the audience.  This could even be in the form of listening to conversations that visitors are having with each. This way the pressure is off them and the visitors can indulge in the moment and chat away - which ultimately takes the pressure off everyone.

Don't over stress yourself or demand from yourself that you come up with complicated activity plans for your loved one all the time. Keep it simple and remember that silence and stillness are the luxury care givers crave the most!

 

 

How to Socialise.

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At last you’ve managed to find a way to get out and go to a social event.

This is a rare thing for you, and you’ve really been looking forward to it.

But you can’t relax and you don’t know why.

And then you realise that you are on guard and worried in case someone asks you how your loved one is doing.

And you know someone will.

You panic.

What are you supposed to say?

What can you say about dementia?

What do you say about being a carer to those who have no expereince of being one?

You haven’t yet formulated the response that you're most comfortable with,  and so you’re taken by surprise by just how anxious you’re feeling.

Do you concentrate on your anxiety, or you answer – or do you just leave?

This is a common experience for all of us.

It takes time to learn how to frame your answers, and it may even take time for you to try them out before knowing which one suits you best.

And that’s ok.

Finding a way to speak about your loved one comes with trial and error and the best way to try this out is to expose yourself to social occasions with the people you feel safest with.

In the meantime, these simple questions can spoil your outing and have you driving home in tears.  They might make you feel like an outsider or an alien - as if you are the only one in the room with a challenge, and this can heighten your feelings of sadness and grief.

In other words, it can really hurt, because you’re not yet used to talking about your loved one in this way -  and besides  - you haven’t even gotten used to the idea yourself of just how much your loved one has changed.

The most dangerous thing about putting yourself out there without any preparation or protection is that it can make you feel that you don’t ever want to go out and be exposed to that sort of hurt ever again.

This is a danger sign.

This is where things can start to go wrong for you.

This is how your life can be reduced to staying at home and falling apart.

It can make you not want to go out again for fear that someone will ask  - because you know someone will.

Going out shouldn’t end up feeling like a punishment.

If you try one way out and still find yourself driving home in tears, don’t let that stop you – just know it’s not the way you want to do it and go back and try a different way.

Firstly know that whilst people really do care - they do not need to have a long detailed response from you.

That you do not owe it to anyone to go into a long detailed explanation.

That you are not being interviewed by a journalist.

That it’s not an exam question.

That you owe it to yourself to protect yourself from being overloaded by others who do demand too much detail from you.

That it’s okay to say what works for you.

So here are some examples of things to say:-

He’s doing fine in the context of where he’s at.

He’s comfortable and well cared for.

He’s the same as he was before but getting help for the parts he can’t manage anymore.

All things considered - he’s doing fine.

Or

There are some challenges we’re dealing with, and like all things in life, we are working through some of the ways to deal with them.

We have a great team of supportive and caring people with us who are making things work in the best way possible.

Or

He makes us laugh a lot.

He makes us look at life differently and we’re learning to see that life is much bigger than we used to think.

He’s teaching us what unconditional love really means.

He’s brought our family closer than we ever thought possible.

Remember you are out to enjoy yourself and not out to be the host of a chat show on dementia.

Or you can just say – “thanks for asking, but I don’t like or don’t want to talk about it’

Keep it cool short and sweet and make sure to join in the conversations in the room about other things in life – even if hearing about the exciting things others are doing also hurts.

After a while, people will get to know how you want them to respond when they meet you.

In the meantime – the more you engage in life, the more likely you are to create news that fits the occasion.

We're here to help you create a life worth living, because we believe you can when you know how - no matter the challenges.

 

You Belong in a Crowd.

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Back in the days of the Oprah show there wasn’t anyone else who really got just how powerful a television is in gaining access to an audience, bringing people together and sharing uplifting stories. Oprah brought people together in a respectful and honest way in which they felt they could trust her with their stories. If anyone had a big story to tell they chose her as their trusted resource. They came from all over the world and told of things that had happened to them that were sometimes unimaginably painful and extraordinarily difficult to endure. She did this for 25 years and was never short of a story to tell - there was always a crowd of very special and unique people to choose from.

I remember especially the woman from South America who had been burnt in a car accident. I’m not sure I’ve ever seen anyone as brave as her ever before, or since. Her name is Jacqui Subarido.  Jacqui goes through my mind continuously as a beacon of strength when I too am dealing with life’s heart breaking experiences. Jacqui reminds me of just how courageous humans can actually be. When I feel that life is asking just way too much of me, I think of Jacqui. Jacqui is my hero.

It’s not an easy clip to watch, but here is Jacqui on the Oprah show in 2003. Watch if for the courage it will give you. Watch it for the strength you will get from Jacqui.

The other person that I’ve always remembered from those shows is Matty Stapanek. Little Matty was simply way ahead of his time. He came onto Oprah’s stage with so much presence and confidence – as if he knew his message was urgent and that he wouldn’t have much time. Watch Mattie and Oprah here.

For those of us going through a hard time caring for a loved one living with dementia, we should look further than just the world of dementia for inspiration and courage. Hard things happen to people everywhere and listening to how they have coped can give us the courage and the motivation to go on caring and to remember that we are never alone. And that as members of that very special crowd, our stories are also inspiration for others. We are no ordinary people!

What is your way of dealing with what you are going through?

If you were on the Oprah show with your story - what would it be?

 

The many steps to finding a new life while caring for someone living with dementia.

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It seems natural to want to be at the destination before you've done the journey.  Finding out that a loved one has dementia really accelerates that desire. You find yourself trying at first to maintain the status quo. To keep encouraging life to stay as it was and not change in such a dramatic way. The trial of getting through the many medical assessments and evaluations required to arrive at a place of being given a diagnosis is often bitter sweet  Whilst you are relieved to have a diagnosis, the diagnosis is not the one you wanted to hear. But once you have it - its yours to deal with! Once you have it, you will have to find ways to adapt and progress through some really tough territory.

Having been through this twice in my life with loved ones, I can tell you that there are ways to go about it that can ultimately enrich everyone's lives. A lot of how you respond will be based on the relationship you had to that person before this diagnosis - which is what makes it so unique for everyone. You need to follow this uniqueness. Don't let yourself get confused by everyone else's theories. I believe that you do know what to do, I think its in you -  but sometimes you just don't know where to begin. 

My work with those who are given -  or chosen - for the job of carer - which is not a job you ever applied or volunteered for - is in exploring and finding new ways that are sustainable and strengthening and that get you through this time together. This is not a journey you should or need to undertake alone. This is something far bigger than just one person. Once you accept that - which believe it or not is often one of the hardest things to do - new doors will open and you will find answers and solutions that you never thought of before.

This is a time for honesty and a time for courage. Its a time to create a history that you will be one day be proud to call your own. Being present and showing up for the challenges  - if managed well - can even prepare you for the challenges you too may face in your own health one day.

I hope to meet you soon and help you to get busy on matching your intentions with your life in the best way possible. 

 

Benefiting together

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If you missed the dementia care giver workshop this last weekend then make sure to be on the next one because it really and truly is one of the best ways to get support and find answers and solutions to many of the challenges you face in caring for your loved one who is living with dementia.

Here are some of my thoughts about the benefits of working together that just amaze me every time.

One of the most rewarding things about our workshops is that we’re all in the same boat -and so we all have the same desires. We’re all looking for the same things.  We’re all connected.We are a community. We are a family. We are a team. And so working through these things together is a powerful process that really visibly strengthens us.

Dementia certainly brings a lot of difficulties into our lives, but we aren’t the first ones to go through this journey; and therefore can learn many things from others who have been through it before. Whether you are at the beginning of the journey or way along the path – what you bring to the workshop can sometimes equal what you get from it. There is always something new you can learn. I’ve seen this so many times!

There’s no doubt that sharing and helping someone who has just set out on this road with your own advanced knowledge will uplift you and make you feel that your suffering is not a waste of time that goes unnoticed or unappreciated by others. You do get heard and you do get appreciated and that’s a lovely thing!

In the workshop you get to look at who you are and how you can create a life around and with your loved one that is uniquely tailored to your needs and your particular circumstances. And that’s a good feeling!  For example - if you live on a farm your plan will be somewhat different to a carer who lives in the city. You don’t want to be distracted by trying to create a life that doesn’t match your circumstances. And so you also learn to make sure not to make problems bigger than they are and to the know difference between them. You learn to recognise the difference between a real and immediate problem and perhaps a worry about the future. In this way you can isolate a serious need and apply your attention to it in ways that are single minded and constructive. 

Because you are naturally programmed to always make progress, one of the difficulties of caring for someone living with dementia is that the demands are so extreme that you feel as if you can’t make progress, which leads you to feeling trapped, angry, resentful or even defeated. But by working out what needs your attention right now, you can learn to prioritise and isolate it and work on making progress through it. This relieves you from that trapped feeling. This way you can make progress. Working through these things leads to a better sense of clarity which is one way to feel a whole lot of relief and gives you a sense that you have not lost control of your own life.  When someone in the group makes a breakthrough we all celebrate the relief and progress they’ve made because it’s a mirror to each one of us reflecting what we can all do. For example if you discover in the workshop that your main  issue right now is that you are overwhelmed with anger - then you can concentrate on working with your anger. If you discover your main emotion is grief - then you can learn to spend at least some of part of each day working with your grief by doing really simple things like lighting candles and placing flowers in a vase each week or writing in your journal about it. Know the differences. This is how the workshop helps you. If you don’t do these things you tend to be all over the place and the thing that is trying to get your attention will just shout louder and louder which leads to a terrible exhaustion.

Its also valuable to learn to be aware of how you are thinking about your challenges because your thoughts have a habit of becoming your reality and your thoughts also become your words and the language you speak – to yourself  - and to others  - and these lead you on to take the actions you take. These are the ways that others experience you and therefore how they respond to you. This means you have a lot more power than you may know to create a world you want to live in even during this very demanding and exhausting time. The way we think speak and act will decide on the way we experience caring for someone with dementia.

I know it’s hard.

I know it hurts.

I know it feels as if you just can’t do this some days.

But you can.

You can.

Stand up today and do your best and at the end of the day thank yourself for all you do.

Join us for the next group and take your life to a better place.

Find new ways to think act and be while still making sure to get the very best for your loved one.

See you next time!

DATE -  26th & 27th August 2017

VENUE – to be announced.

COST  - R750 per day.

TO BOOK CALL  - 0834002349

hello@dementiasupport.co.za

 

 

Exciting news!

Caregiver solutions.

This is what you really need!

Read this – it’s so very, very important.

You can find a lot of what you are looking for here.

Well meaning people tell us carers to take care of ourselves.  We’re told about the benefits of exercise, meditation and eating well.

These are good ideas - but those of us who are carers know that it takes a lot more than that.

What we’ve been missing for too long is that there is an obvious resource for help from those who do know.

 We, who are doing the caring, are that resource.

We are the ones with lots and lots of questions that need answers

We are the ones that have found answers.

We are the ones that really get and understand each other.

And we are the ones that need each other for encouragement and support.

This means that we are the ones that need to gather together to strengthen ourselves through learning and growing and lots of sharing, so……….

We’re having a workshop just for us!!

We’re getting together for two days in a cosy comfortable space where we will be guided through a number of processes designed to create powerful ways to think, act and be as we go through this journey.

We’ll be looking at what we carers really need and want.

What we can change and what we have to accept.

Family dynamics are always a large part of the dementia journey and we’ll discover how similar our problems are and how we solved them.

We’ll look at anger, resentment, fear, sadness and grief.

What to do regarding home care or care home.

How to get the emotional support you need.

Managing stress.

Lifestyle changes.

And more.

It’s very comforting to be in the company of those who know and with those who really get it.

So you’re invited to join us – details as follows;-

Date -  15 & 16th July

 Venue – Noordhoek

 Cost – R750 per day.

To book call Rose - 083 400 2349

hello@dementiasupport.co.za

 

How to Keep a Loved One Warm & Relaxed in this Cold Chaotic Weather.

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Cape Town is living up to its name as the Cape of Storms. The wind is howling and temperatures have dropped. It’s cold and chaotic, which can make caring for someone living with dementia a lot more difficult to deal with.

 Here are some simple ideas that can help to ease things for you and your loved one.

Hot water bottles are not a good idea for obvious reasons.  Replace them with a lovely warm Happy Hugger – available at most good pharmacies and very easy to use. Some are already scented with lavender oil which is helpful for anxiety. Simply place in your micro wave for 5 or more minutes and keep doing this whenever the bag cools down.  I would recommend buying two or three so as to always have a warm one in use. And – get one for yourself too!

Note – Happy Huggers are excellent for calming the nervous system down   - which needs to be calm and switched off for you to be able to fall asleep.    Place the hot Happy Hugger across your stomach to alleviate the tension that comes from an all too alert fight or flight state,  and it will do a lot to calm and soothe your nerves.

The wind can whip up emotions too - so draw the curtains, switch on a lamp and play some soft soothing music – Mozart perhaps. If you’re loved one can manage ear phones – even better still.

When we are tense, our voices tend to take on a higher pitch - so be aware of how you are speaking and what you are speaking about.

Talk about being safe and warm.

Talk about comfort and anything that that is stabilising.

Mention the warmth of the room, the cosy blankets, the smell of tea and toast.

Try any and all of these ideas and you will find something that helps and works.

Read favourite poems, nursery rhymes or quotes.

Sing reassuring songs – Cliff Richard singing ‘We’re all going on a Summer Holiday’ can work magic!

Be aware too of your body language.

Try to be sure to have warm hands when changing your loved ones clothing.

Soften your touch so as to be comforting and reassuring.

Fingerless gloves are an easy way to keep hands warm while allowing for activity.

Socks are vital - the softer the better.

Shawls and knee rugs are easy ways to keep warm.

You’re breath also conveys your mood.

Short sharp anxious breathes will come across as just that.

Try to be aware of your breathing and focus mostly on your exhale.

Sighing with relief is calming to everyone.

Alarming conversations about storms and floods can really get your loved one stressed out. Be mindful of your words.

What does your expression say to your loved one? Try to soften your eyes – smiling is an easy way to do this.

The smell of warm soup and freshly made toast still make everyone happy.

There’s nothing like a slice of hot toast dripping with butter (and marmalade) together with a good cup of tea on a stormy Cape winters day to warm and soothe everyone’s nerves. 

PS A workshop for carers is coming up in July in which you can learn what taking care of yourself as a carer of someone living with dementia really means and why its so important. Warm wishes till then.

 

 

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 How do you find the good in a bad situation? You look for it!

You may have to look very hard - but it will be there – in small or large amounts - it doesn’t matter!

What you focus on grows - so if you keep reading and re reading the statistics and prognosis on this illness, you are going to be left feeling terrified and horribly disempowered again and again and again.

Focus on other things – things that can help you and your loved one through this time in your life.

It’s hard – it’s very, very hard.

But remember this - your natural instincts to survive and succeed don’t have to go away now just because you’re caring for someone living with dementia.  Why would they?  It’s not a sin to want to survive  Many of us struggle with this.  We call it guilt.  We worry about having any sort of joy in our lives if someone else is suffering.  Survivor guilt is a well known symptom. But if we are to honour our loved one don’t we owe it to them to survive and succeed?  Otherwise it’s as if we are both at sea and neither of us is swimming for help and that’s counter productive.

Follow the lead.

There are countless inspirational stories of survival and growth – from all sorts of people from all walks of life.  That means you don’t have to be a special person to do something extraordinary.  Right now if you are caring for someone with dementia you are already doing something extraordinary

Have a good weep if you need to.  Don’t delay or deny your sadness – but let it be your teacher because sadness needs its place in our world.  If you let it – sadness will support you and encourage you all the way. It will be there for you whenever you need it - or whenever it needs you to listen to its wisdom. It will tell you what you need to know.

In the meantime, the  sooner you stop reading and re reading the statistics and hard to digest facts about the disease, and allow yourself to breathe and climb down off the wobbly fence and into the story of your life, the better.  That way you will not miss the gems and special moments that love and acceptance will bring to both of you.

Shift your focus.

Yes you will fall, yes you will stumble - but let that be a part of the dance.

Let go of expectations that take away from your now time with your beloved. Make the most of each moment.

The late AA Gill, well known food critic and writer, whose father had alzheimers, once said that the best meal he ever ate was sitting in silence at a table eating chocolate ice cream with his Dad who no longer recognised him.

There can still be special times! There can still be the light in the darkness.

Dementia demands care x 2!

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Dementia Carer – this is for you.

I started this blog because I know how you feel. I've been where you are twice. Once in the 1980’s and again in recent times - that’s significant and I’ll tell you why.

FIRSTLY - AND JUST FOR YOU

You’re reading this because you’re directly or indirectly caring for someone living with dementia and you want help.

You can’t do this alone, and you know it.

 You need to be acknowledged for caring for that person living with dementia.

Whether you’re caring a lot - or caring a little – just for caring at all!

What you’re doing is more demanding than anyone could imagine.

You may even have found yourself carrying burdens that belong to others.

You may even be the destination for everyone else’s emotions.

Things are really hard for you and you are loosing hope or maybe you’ve already lost it.

But - and because you’re reading this - there is still something in you that hasn’t given up entirely.

HOPE CAN BE RESTORED.

What I know for sure is that we care for someone living with dementia very differently these days than we did in the 80’s which was when I had my first experience of being a carer. We no longer sit next to the rocking chair and drink tea and hope for the best. This is what I did back then! We’re much better at it now and that’s because we know a lot more about it. Nowadays you can learn to use these better ways for the benefit of your loved one - and for yourself.

THIS IS WHAT YOU NEED TO KNOW.

 YOU CAN MAKE GOOD THINGS HAPPEN IN A BAD SITUATION.

Yes you canIt’s not easy, and you will need help. The kind of help you need is personal and unique. There is no one size fits all remedy.

 You'll find inspiration and thought provoking articles on my Facebook page.