Living The Journey As A Carer

LIVING THE JOURNEY AS A CARER

Foreword

I have thought long and hard before, and during writing this page, I must admit I faced it with some trepidation, as many carers (and sufferers) do not like to talk about, or face many of the areas I have covered. Many of the things I discussed or alluded to, when offering person to person support, I would normally have spoken about when the time was right or in some cases, I felt was necessary. So please don’t hesitate to scroll on past anything that may be too confronting for you, or at your particular stage in your journey – you can always revisit the page when the time suits if you wish.

Having lived the mesothelioma journey as a carer for my late wife ‘Julie‘ for over three years [Julie was diagnosed with separate Pleural, Peritoneal (and also had Reproductive area) Mesothelioma asbestos cancer], there was much I experienced and also learnt. My time spent as a support co-ordinator in a voluntary capacity with the Asbestos Diseases Society of Victoria (ADSVic), during Julie’s mesothelioma journey, and the following years with the Bernie Banton Foundation supporting people with all forms of ARD has only validated, and added to my twelve plus year journey knowledge bank.

It is important to understand every carer has a different journey, but many walk a surprisingly similar path. With this in mind, I have tried to document many of the recurring similarities, concerns and experiences I encountered, and I have found fellow carers have had, and do encounter. This is not meant to be a manual on how to be a carer, rather it is meant as something to allow carers to know what they are possibly going through or feeling may be normal. For sufferers and others, hopefully it might help them understand more of what the carer is possibly experiencing and also, perhaps more of their own journey.

The Asbestos Related Disease Carer Journey

The asbestos related disease (ARD) journey is not just about the sufferer, it is a journey that does impact everyone involved and close to the sufferer. In particular the role of a carer of someone diagnosed with a life threatening or terminal asbestos related disease is often a very fear filled and exceptionally lonely journey. I should mention here, not every asbestos related disease is considered terminal or life threatening (see ‘Facts and figures‘ below), thus all journeys will differ.

Facts and figures

The vast majority of asbestos related disease sufferers in Australia are over the age of 65 years, with a small number (in relative terms) of both men and women aged between 20 and 65 (mainly Malignant Mesothelioma sufferers).

The only asbestos related disease considered terminal is Malignant Mesothelioma (an asbestos caused cancer on the linings that surround the lung – but it is not lung cancer).

Asbestos Related Lung Cancer (a cancer of the lung thought to be caused by exposure to asbestos), Asbestosis (thickening or hardening inside the lung – but not cancer) and Asbestos Related Pleural Disease (a thickening on the lining that surrounds the lung – but not cancer) are considered life threatening but not necessarily terminal. However, as with most serious illnesses, they all can be life ending.

Asbestos related Pleural Plaques (a scaring of the lining of the lungs – this is not cancer) is considered not to be life threatening, however, is considered a definite indication that someone has had exposure to asbestos fibres/dust exposure – in Australia, Pleural Plagues is not generally compensable.

Nothing easy

There is nothing easy about being thrown into a journey that is not expected or wanted, for the carer it makes it even harder when the focus is almost universally on the sufferer. The relationship of the carer to the sufferer will play a big part in how the carer’s journey pans out. A spousal carer [wife, husband or partner] journey, for example will differ greatly (but may have similarities) to that of say a daughter’s or son’s journey – whether they are a carer or not. It goes without saying, where a parent, or parents are the carers of a son or daughter, it is a totally different journey again (thankfully this is relative rare – but not unknown at all).

Difference between carers and daughters and sons

The difference in situations, reactions and feelings between ‘spousal‘ carers and daughters and sons, goes without saying, is normally quite large. A spouse often see their future evapourating, their plans and hopes being swept away. The thing is in most cases (but certainly not all) spousal carers have often climbed their life mountain and are looking forward to their final years of life with their loved one [the sufferer] either in retirement or nearing retirement. Suddenly this is swept away and often replaced with emotions such anger and bitterness, experiencing the fear of the unknown, and the realisation they will possibly face a very different life to what they had planned and allowed for! How do I cope, what do I do, how do I do it? Will I walk into an empty house? Will I be alone for the rest of my life? Obviously fears and reaction will depend on the diagnosis and the particular disease prognosis.

On the other hand, a daughter or son faced with the possibility of losing a parent, will be going through the natural progression of life, this mostly doesn’t make it any easier, but it is certainly different. Daughters in particular often seem to experience a total non-acceptance, combined with anger, frustration and/or bitterness. The major difference is the spouse will mostly go back to an empty house with an uncertain future – the daughter or son will go back to climbing their own ‘life mountain‘ with their partners, and or family or loved ones!

As my Julie said to me, “Rod, you need to understand, the day after my funeral the boys (my three stepsons), and everyone else will start to get on with their lives as they knew it. You will have to forge a new life without me.” Julie was so right……. that was pretty well exactly what happened!

Hearing the diagnosis

Hearing for the first time the person you love, and has possibly been your best friend and life partner for many years, has been diagnosed, is to say at the least, a ‘proverbial punch in the gut‘. Depending on the circumstances leading up to the diagnosis, hearing the actual words for the first time will often be met with total shock. In the case of mesothelioma it is more often a case of ‘meso….. what?’.

In our case, we were given the diagnosis over the phone, at 7.30pm standing outside a local restaurant where we were celebrating one of my stepson’s 34th birthday. To hear the words, “I am really sorry, but it couldn’t be a worse diagnosis – you (Julie) have two forms of a cancer called mesothelioma!” Julie went pale, I listened, asked some questions and sort of went numb. We hung up and went back into the restaurant to continue the celebration without saying a word to the boys and other family members.

Reacting to the diagnosis

I really didn’t know what mesothelioma was, but I now suspect Julie knew far more than she let on. In 2008 I was not computer literate [smart phones didn’t really exist in my world either], whereas Julie on the other hand was right on top of computers and even had a Facebook account! That, and the fact she had hidden that she was having tests for nearly the first month of what turned out to be a two month process, is what leads me to think she knew far more than she was letting on.

My initial reaction was one of immediate unknowing denial, surely it couldn’t be that bad! Julie was just totally resolute and said it wouldn’t beat her. It wasn’t until 9.30pm (2 hours later) when we got home, that I rang my mate Dallas, he was an extremely well schooled and credentialed, tough kind of fella that genuinely did know about most things. When I told him, he was immediately obviously very upset (he was very close to Julie as well as to myself) – I said, “It can’t be that bad Dallas!” He answered, “Rod it is, there is no cure, Julie is going to die!” With those few words from someone I totally trusted to not only know the truth, but also tell me the truth, I without question accepted the situation, and I think looking back, immediately started to grieve.

This did not mean I gave up on, or didn’t have hope, I think I just accepted the inevitability and gravity of the situation. For me, acceptance meant I could face the ‘new normal’ head on, and support Julie in every way I possibly could. I also believe, it also meant I immediately felt a sense of foreboding and loss, and as I said, immediately started grieving.

So it was, I commenced a journey that has to this moment, spanned over 12 years. Over that period I have supported and dealt with carers and sufferers, and daughters and sons who have each handled a diagnosis very differently. It is such an individual thing, what is apparent is that there is no right or wrong way, there is no best way – often the only way, is the way that allows you to cope!

After the diagnosis – living the journey

As I said earlier, everyone’s journey as a carer and a sufferer will be different, a lot will depend on how they individually handle the diagnosis. Are they accepting of the realism of the diagnosis, or in denial of it? How a sufferer reacts to the diagnosis will directly impact on the carer, more so I believe than on anyone else, and of course it could rightly be said, vice versa.

There is no doubt the universal reaction to a life threatening or terminal diagnosis is one of unexpected shock. Some people accept the reality of the diagnosis almost instantly, there are those who are initially in denial and those who stay in total denial. Then there is the undeniable fact that every person is wired differently and will respond differently to pressure, stress, loss (of any kind) and grief – everyone’s journey will differ to dome degree.

A carer needs to ask for and accept help

If you are a carer be prepared to seek out and accept every little bit of help and support you can get – even if the sufferer doesn’t want you too! This is not a journey you should try to travel alone, do not be a martyr! There are a few things I think any carer should look at right from the start:

Register the sufferer for a Disability Parking Permit – it costs nothing and really is invaluable for both the sufferer and the carer. The permit goes with the sufferer, so can be used wherever the sufferer goes. If a sufferer is diagnosed with debilitating asbestos related disease journey [basically all bar Pleural Plagues] they will usually qualify…….. it is a must do!
Utilise every material aid you can to help maintain a quality of life and dignity. A simple proper made for purpose adjustable shower stool, would be the first thing on my list. I think it is something every sufferer should have at their disposal – if you are a carer reading this, don’t take no for an answer……. it is a must have!
Take the time to talk about registering with your local hospice or palliative care network – please gain the courage to do this very early in your journey. Remember, just because you do check it out, it doesn’t mean you have to, or will use it.
Read more about Supportive Care Options by clicking [here]

Loss of control

What is clear, the sense of loss of control for both a sufferer and carer is almost immediate. After all, it is hard to have control of something you most likely know little about and are (initially at least) totally unprepared emotionally and physically to deal with. Just getting your head around a diagnosis is often totally overwhelming, let alone dealing with the consequences. On this page I will try to articulate and highlight what I have found is the ‘normal‘ and what a spousal carer [and at the same time to some extent a sufferer], may often go through and experience during a journey caring for a loved one.

The need to win at all cost

Many sufferers will elect to have any, and all treatments, and try anything at all to survive. Often this is welcomed by the carer, but a lot will depend on the perception of quality of life versus longevity of life and what is best. On the other hand, it may be a carer who will do anything to ensure the sufferer continues to ‘fight’ even though it may be clear to many, the sufferer is not well enough to have treatment, or indeed want to.

Deciding not to have treatment

Sometimes sufferers will decide not to have treatment. Has the sufferer gone into depression, given up, or are they just, perhaps being realistic? Some sufferers will elect not to have treatment (often for very sound reasons), others may simply, actually put themselves to bed. As a carer this is often very hard to deal with, as it may almost be seen as a sense of betrayal, and the feeling they (the sufferer) doesn’t feel the carer is worth fighting for. Nothing may be further than the truth, as sufferers also have their own way of dealing with things.

Honest communication is essential

It is really essential that both the sufferer and the carer are truthful with each other and are able to be mindful and respectful of each others needs and wishes – the need for this to be a united journey is paramount. Unfortunately, in many cases, somewhere along the journey this often gets lost.

Life must go on as normal

Sufferers may elect to adopt the attitude that there is nothing wrong, and insist life goes on as normal. This, for some carers is hard to deal with, as clearly for the carer, life will not be going on as normal. So many things will change for the carer, including their role in their relationship with the sufferer. Keeping life as normal may be particularly hard in the case where a sufferer has been the prime person in dealing with the financial side of a relationship, and will not change the status quo due to insisting life goes on as normal. This one example could have dire future financial consequences for both the carer and the sufferer, but it is one I am certain happens often. Whilst keeping life normal may, in some cases be desirable to the sufferer and/or the carer, is it realistic? In many case it will have damaging consequences, as trying to live life as normal when it is clearly not, can be extremely stressful and costly to all concerned.

Protecting loved ones from the truth

Protectiveness may emerge where the sufferer does not want anyone else to know the real situation. The world doesn’t need to know our business! The kids have enough worries without adding ours! The list can almost be endless – in my own situation, Julie would don layers of clothes (even on stinking hot days) to hide weight loss, so no one would realise the truth of how advanced her illness was. When a sufferer adopts this attitude a carer is at risk of becoming estranged from family and friends, the very people who should be looking out for the carer’s welfare. In extreme cases, loved ones, such as children or siblings could even become angry in the belief a carer is overstating the severity of the situation. Unfortunately, not being honest with loved ones, family and friends could lead to a lifetime of experiencing regret and ‘if only‘ for those not told, and who are left behind.

The proverbial punching bag

Is there anger, bitterness or frustration coming to the fore? (see below) Often a carer will become the literal or proverbial punching bag behind closed doors when family (particularly the kids), friends and/or medical/care workers are not there! I call it the ‘Dr Jekyll & Mr Hyde‘ syndrome. It is not uncommon for a sufferer to literally (and no doubt in some cases, physically) to strike out at those closest to them. Sufferers may feel it is okay to hit out verbally and berate the carer, then be ‘as nice as pie‘, or ‘butter wouldn’t melt in their mouth‘ when family, guests or care providers arrive – and revert back as soon as they leave. This situation often will alienate the carer, who is not game to open their mouth, or is not believed by, in particular, family members. This situation could also feasibly be reversed…….. where the carer is the ‘Dr Jekyll & Mr Hyde‘ and the sufferer is wearing the brunt of the bad or aggressive behaviour. Either way, It is definitely not okay – and should not be tolerated……. but, I would say, mostly is!

Beware of the guilt trips and emotional roller coasters

All sufferers and carers can (and most likely do) go through dark times, and emotional ups and downs. This is a natural part of loss and grief all carers and sufferers will more than likely experience at some time. Striking out, comes to the fore when people are scared, angry, bitter etc.- unfortunately I do believe this happens in most relationships between carers and sufferers, it is a hard journey with so many forces at play. It is something both carer and sufferer need to be acutely aware of, and if happening, addressed.

A sufferer may be angry ‘Why me?‘, scared ‘Will I have pain?‘, resentful ‘It is alright for you, you have years to live!‘, relationships ‘You will find someone else!‘, money ‘You’ll be rich!‘ A carer, likewise may experience very similar emotions, anger ‘Why me?‘, scared ‘How will I handle looking after you?‘, resentful ‘How could you be doing this to me?‘, money ‘Will I be able to cope?‘, ‘Will I have enough money to survive?‘, relationships ‘I will be alone!‘, ‘I will need to walk into an empty house!‘.

The need to get things done

One of the major concerns a carer will have will normally be about financial security, either for during the journey, or for afterwards. Hopefully compensation will have been sought and gained, which may help alleviate some of the worries or concerns – but not everyone is fortunate enough to gain compensation. For those that do, it is not unusual for the sufferer to literally go off the rails with an almost insatiable need to get things done and/or give money away to children or grandchildren – almost like there is no tomorrow! [Realistically, of course, depending on the diagnosis, at some point for a sufferer, there being no tomorrow may well be the case.] Often this will be at odds with how the carer is thinking, as they may have real and genuine concerns about their future financial security and wellbeing. Diplomatic patience and firmness may be necessary from the carer to ensure unrealistic and excessive largess does not run out of control. This is a journey both the carer and the sufferer are on, there may need to be some give and take.

Money matters

Money brings out the worst side of many people, this may include family members. My advice to both carers and sufferers, is to not to opening discuss finances with all and sundry (including family) – particularly if there has been a compensation payout. If money management is not your forte perhaps think about sitting down with an astute financial adviser to help secure your financial future, or at least talk about it with someone you can fully trust.

Getting affairs in order

This is something many people seem to shy away from, but It really is essential that affairs are got in order, preferably at the start of any journey – everyone regardless of being diagnosed, or not, should do this anyway. Many people would be surprised how often people don’t have legal or up to date wills to reflect their current circumstances. I have known and heard of cases where extremely well off widows have been left without any accessible money, for an extremely long period, due to all finances being tied up in either their late husband’s accounts or company holdings. This particularly may be of concern if there are a number of beneficiaries and/or probate payable. It is advisable to consult a lawyer who specialises in wills [generally different from a asbestos related disease specialist litigator]. I have listed some of the things I can think of you may want to discuss and address with the specialist ‘will‘ lawyer:

First and foremost – do you have wills and are they up to date to reflect current circumstances, intentions and wishes?
Do you have medical and also financial enduring power of attorneys completed?
Do you have end of life Advanced Health Directives made out?
Do both parties know exactly what the other would want in the way of a funeral?
Do you both know each others’ family history?
Is your house and/or property in joint names?
Are bank accounts in joint names?
Does the carer have his or her own credit card facilities?
Does the carer have access to the family and business (if applicable) online banking facilities?
Is the carer, or an appointed responsible person aware of all assets, including share portfolios, bank accounts, property, etc.
Does the carer know what company various insurances are held with.
Are all usernames and codes documented for:
- Computers,
- Computer based online programs and Apps;
- Online banking;
- Power, water & gas utilities;
- Social media accounts; and/or
- Anything else you can think of that will require access codes.
Are property utilities [power, water, gas] in the carers name?
Animal registrations?
Are cars or vehicles registered in the carers name?

These a few of the things to think about, but there may be more – getting your affairs in order is something that should be done at the start of any journey. and re-addressed periodically when and if your situations changes.

The transition from being a wife, husband or partner to that of a carer

Many carers are often not prepared for the almost quantum leap of the realism, when (if) a chasm opens up, and they suddenly realise they have become a ‘carer‘. You may still be married or in a relationship, but the status quo has changed from that of sharing your life as a lover and/or best friend, to something totally different – often this will equate with moving into separate bedrooms. This can be very hard to come to terms with for both the carer and the sufferer. It is yet another sense of loss, that I don’t believe anyone who does experience it (thankfully not all do) could ever be fully prepared for.

A lonely journey

A carers journey will often become one of extreme loneliness, literally trapped in a house with no one to talk to. If you have never been the carer of someone with a terminal, or progressing life threatening illness, it would be hard to fathom how lonely it can be, particularly if the sufferer is sleeping or fatigued the vast majority of the time. Friends, and often family members stop being connected as they continue on with their lives, or can’t or don’t want to face the realism of the situation. Family and friends really do need to be told, and be conscious of the devastating and overwhelming feeling of loneliness that a carer may experience.

Ending a journey at home

A question often asked, is whether it is possible for a carer to look after a sufferer at home as they enter the end stage of their journey. Unfortunately there is no answer to this to fit everyone. It is possible for some carers and sufferers, but there are many factors to consider.

It it what the sufferer wants?
Is it what the carer wants?
Will the carer be able to emotionally cope? Remember you are not only helping someone you love, but often watching them slip away – it is a lot to deal with.
Will the carer have the physical strength to cope? This is a relentless 24/7 commitment, particularly when many sufferers may get to the stage where they cannot physically help themselves in anyway what so ever?
Is the home suitable to allow it – access, different levels, suitable bathroom, etc.?
Is professional help (nurses, care providers, doctors, etc.) readily available at the drop of a hat?
Will a carer have reliable, constant back up by family and friends? Caring for a sufferer cannot feasibly be done alone by most people, and certainly in my opinion, is not desirable.

Caring for someone at home is possible, if there is sufficient help and back up from family and friends, but frankly, this is rarely case. Talking about and looking at a back up end of days plan, such as a hospice is I consider, essential. Not talking about it and putting things in place in advance, takes away the ability to maintain and control the quality of life and dignity of a sufferer, at this very crucial end of life period. It is important to remember, the welfare of the carer is of equal importance as the welfare of the sufferer. Quality of life and dignity needs to be maintained for both!

Remember…. a carer needs to ask for and accept help

The guilt of a sense of relief

Being the carer of the love of your life, a person who was destined to be your life partner, is never easy where any illness or disability is concerned, but I think when that person has been diagnosed with a terminal or life threatening illness, it is particularly hard. It is a journey that is all pervasive and takes over your entire being and in most cases your life. It, in most cases is relentless, and all consuming, it is genuinely 24/7, whether you know it at the time or not. It is a journey that if you haven’t lived it, you more than likely would not fully comprehend it. Much like, say having a baby – as a man, I have no concept of what it is like to nurture and carry a child inside me for nine months and to give birth. But having been the carer of the love of my life Julie, a sufferer of mesothelioma, who survived for over three years, I feel I can say I would have walked a similar path to many other carers in this space.

For over three years I lived with what I call the terror of not knowing how I would cope with walking into an empty house [Julie used to tell people, “Rod doesn’t do loneliness well!”]. I was fortunate to be able to look after Julie at home until her passing. [I should mention that I was extremely fit and relative young, being in my early 50s.] Julie left us at 1.27am in the morning, however didn’t physically leave the house until mid morning. This is also when our boys (my stepsons) and their partners also left. I literally went manic cleaning the house and ridding it of any evidence of the mesothelioma journey [hospital type aids, chairs, shower stool, etc.]. Finally, late in the afternoon, with the house back to how julie and I had loved it being, I slowed down and sat on the couch with our two much loved dogs and a glass of wine……….. and for what seemed like the first time in three years, I relaxed and breathed! I realised I was experiencing an emotion I would have thought would have been the very last thing I would feel, it wasn’t loneliness, it wasn’t being scared, it was a sense of relief, a sense that I could breath again!

With it, also came an immediate sense of guilt, how could I possibly feel relief? Looking back, I now realise I had been wired to every reaction and nuance of change in Julie from the day she was diagnosed, I don’t think I had allowed myself to fully relax during the entire three plus year journey. Such is the self imposed and/or necessary responsibility [some would say burden] a carer can, and often does carry throughout a journey.

My feeling of guilt at my reaction stayed with me for a very long time, until I came to the realisation it was not only a perfectly reasonable reaction, but also a reaction a huge number of carers in similar circumstances experience!

Grieving

As I mentioned earlier on, I believe along with my almost immediate acceptance of Julie’s diagnosis, I also started to grieve. To be honest I don’t know I ever had a grieving period after Julie’s passing – I do however believe that I spent the entire time of our mesothelioma journey grieving. This is possibly the case with many carers, particularly those where the sufferer is faced with terminal illness diagnosis. I am just not certain many realise they are grieving, just as I am not certain I knew I was. However talking with many bereaved carers, many do feel (or know) that they started grieving very much the day of diagnosis.

Many of a carer’s peers are often surprised at how quickly some carers ‘move forward‘, I do think at what point a carer reaches acceptance does figure in when a carer begins ‘moving forward‘ in their next ‘life‘ chapter. I also believe the fact many people do not fully realise or appreciate the vast difference between a carer ‘moving on‘ and a carer ‘moving forward‘ factors in why they may be surprised. As with most things in life, there is no given or right or wrong, grief and grieving is very much an individual thing. Please read more about the difference between ‘moving on‘ and ‘moving forward‘ by clicking [here].

Anger and bitterness

Over the years I have experienced many widows and daughters who have had, and maintained a high degree of anger and bitterness for over many years over the loss of their loved husband or father. Unfortunately, not being able to ‘move on‘ from the anger and bitterness, also restricts that person from ‘moving forward‘. I have put the anger and bitterness down to the fact asbestos related diseases, are preventable and there is often someone/something that can be blamed – this is often not the case with many other life ending illnesses or occurrences. If you are bereaved and do feel anger and/or bitterness emotions that are sustained for an extended period, please consider seeking professional help to deal with it and ‘move on‘ from it. You can read more about the difference between ‘moving on‘ and ‘moving forward‘ by clicking [here].

Living The Journey As A Carer