Care Givers Need To Relax As Well.

John Bellamy

Some years ago I nursed a friend ( Bill ) in Florida who was dying - and he had these private female nurses who came in 24/7 to look after him at home and they were driving him up the wall, so I took a leave from work in London, flew over and spent the last 5 months of his life nursing and caring for him in his own home. 
After a month I knew I needed help but knew absolutely no one in the area.   What was I to do ?  Phone someone through Yellow Pages ?  Ha Ha..  Not me... When he was asleep one evening I snook out and went to a local gay sex venue and got chatting to anyone I could find who would listen - as I was asking if they knew a male nurse who was looking for some work - and while several gave me some very odd looks, one guy took an interest in my story and took my number.  The next day someone else phoned and said that  he was a nurse and available for private work, and he really was a God Send.

He came round the next day and met Bill and I - and luckily they got on really well,  and the next morning when he arrived for his first morning shift,  I told him how I had been up all night as he had wet the bed and not slept well etc.  and the first thing he said to me was - 'GOODBYE.'
When I looked puzzled - he said it again - ' Goodbye - You are going out now.'

Curios, I said that no I wasn't as I had laundry to do and some clearing up while he was bathing and dressing Bill - and he said

' You are my patient as well. You have been up all night.  You have been here 24 / 7 for a month without a break. Go take a quick shower, get your things on and go shopping, go see the sites of Sarasota ( where we were ) and stay out  and have some lunch.  Spoil yourself and I don't want to see you back here until at least 3pm.  Bill is quite safe with me and you do not need to worry, everything is fine. Now go.'

( no mobile phones in those days )

I could have cried
. 
Carers rarely consider themselves in the package and while offering all they can for the other person,  it is vitally important for the carer to look after themselves as well, as if they get burn-out or become ill, then there is no one.

I need to be in control of every aspect of the care package.

Many carers feel they need to stay in control, stay on top of things, be involved with every aspect of the care package when the truth is - they do not.  If -  as in this case - I had a brilliant nurse who knew how to bathe a bed bound patient and dress him - and knew not to take any of his crap and moaning - and knew how to sooth Bills worries and understand his dementia periods - and probably better than I could,  and 'letting go' was a powerful and releasing energy that allowed me some time for myself and for my own emotional and physical well being and I learned to trust a professional.

Caring for a loved one is enormously draining on the emotions and without some respite - some help - some space - the shit can hit he fan and then no one is helped.

I cannot stop thinking about them even when I am not with them.

This is common but is unhealthy.  Take an interest. Be concerned and care - deeply - but realise there are limits to what you can do and limits to what you physically and emotionally can do,  and you need to learn some easy techniques to switching off - Meditation - Integrated Breathing - or even simply going to a cinema - which is different than watching a DVD as in the cinema you cannot pause the film and - kinda - have to stay because of disturbing others, but do pick your film wisely - a comedy is always a good idea...  Some aspects of anyone's care package will include the professionals and trusting them is important - and while you may wish to keep an eye on them -  do let them do their job and relax.

I feel guilty when I am not with them and guilty if anything goes wrong.

This is just selfish silly talk.  If they lay a guilt trip on you,  tell them to stop straight away and  put the guidelines - the goal posts well and truly in place as to what you are willing to tollerate from them and what you will, and will not, put up with, and if they push those boundaries - be aware that often it is purely for selfish reasons and mega doses of ME ME ME - and this is unhealthy for them as it is for you and DO NOT allow them to get away with acting badly.  If they cry and say ' but I am ill - I am dying.' you just answer softly that you understand and appreciate their position as you hope they will understand and appreciate that you are doing the best you can and there will be times when you cannot,   and will not,   be at their beck and call,-  and that you are not about to start running in circles for them,  as you will do your best and they must - MUST - meet you half way on some things and then, and only then,  you can both move forwards.'   
Allowing bad behaviour is like being  a parent to a spoiled child, if you allow them an inch they will take a yard and then you have created a problem for yourself.  

Some people with dementia do not know who - or what - and in this instance you just have to make sure they are clean,  all peed and poo'd,   fed and watered and after spending time with them making sure they are alright and you have chatted with them for a while,  you then have to leave them alone - knowing that no harm will come to them and - like my Mother - she was bed bound and didn't really know where she was.

Do not alow others to lay a guilt trip on you when you are doing your best - as after all -

My life matters.

Realising that you can be swallowed up by the whole thing is a realization that your life, your health and your emotional and physical well being is important and in whatever way possible,  you cannot and must not allow the patient to take advantage and saying NO sometimes is for the best if you feel it is taking advantage and that it is impinging on you personally. Besides, you will not get a medal.

Ask for help, and repeat it if no one listens

Never be afraid to ask for help and do not resent those who do not offer, as can happen.  Some may be there for you and those you would have thought would offer with open arms,  sometimes run for the hills and are not to be found and just desert you when you need them.  Some people really cannot face ill health and cannot cope with this sort of thing and while this seems selfish and self centred to those who give so freely of themselves, it is just how it is. Accept any help offered - and it may be that they cook you some meals to have in the fridge ready  or offer to do some laundry,  and in whatever way help is offered, be accepting, simply say thankyou, and move on

Sometimes you have to accept you cannot fix it

You are not a miracle worker and you are not God.  People get ill and die and the sooner we all realise this the better off we all are, sad and tragic as it seems.  The point is, when you take time off to be away shopping - or whatever - you need to switch off to what is going on at home and concentrate on you for a change, to value and appreciate yourself, your space and your needs.   Try and put it 'out of your mind' for a while and have a laugh.  Some think this is harsh and some disrespectful, but they have obviously never cared for someone full time and if people give you an attitude while you are on your 'off time' - then just tell them to mind their own business and that sometimes to avoid burn-out you desperately need to 'blow off steam'.  You cannot change things,  you cannot fix it,  and you will be around after your patient dies and you need to realise you have to get on with your life and do NOT put your own life and feelings 'on hold' while caring, as then you have no life of your own and you become a prisoner to their needs  and not to your own, and this is unhealthy for both.  When they die,  you are alone and have to start re building your own life.

Do not sit holding their hand if they are - quite literally - dying  at any moment.

This was always one of the hardest things I had to explain to people when I was a bereavement therapist.  If you stay with someone  who is dying at any moment,  the most common thing I heard was that as soon as the carer went to make themselves a cup of tea or to take a pee,   the person died all alone,  and this would upset the carer and family members hugely.

DO NOT WORRY THOUGH - as it was your energy,  your life energy,  that was actually stopping them from dying and as soon as you moved away, even if they are unconscious or 'dancing with the fairies' - there is something about the human spirit that - very often - needs to be alone - and dying is often one of these times. 
I heard so many people say how upsetting it was to loose ' Dear old Ma -  She died all alone and I wasn't there for her after all that time of sitting beside her - couldn't I have waited for that cuppa ?'   and when I would explain that this was very VERY often the case - it would make them feel beter - and is the truth.

I sat beside Bill for almost 36 hours,  and in the morning when I went to make a cup of tea, after - LITERALLY - one minute,  I knew, I just knew,  that Bill had died and I rushed back to hear the final breath leave his body and straight away - the atmosphere in his house changed from that of a friendly home with an ill person in it - to a building full of furniture but with absolutely no atmosphere at all...  This was Bills home - and he wasn't there any more.  It was immediate and it was palpable.

I could have done more.

This is a common feeling after someone has died and is redundant.  Yes maybe you could have knocked up a magical cure in the kitchen or walked on water or learned to raise the dead, but the point is, -  you didn't, -  get over it.  With reflection,  learn from your experience and if another occasion opens for you to be a carer,  remember those little things you wish you had done, and do them, be there and be open and honest and learn from what you felt was a mistake last time, but do not - DO NOT - beat yourself up as it really serves no puropose other than to make you feel guilty which is a total waste of time.  Take responsibility and move on.

Everyone is different and everyone's expectations, needs and desires are different and how much we can cope with another being ill, does differ from person to person.  Do not complain that someone else is not doing enough if they suffer a dreaded fear of illness, which some do,  or a fear of hospitals. It may be naive and selfish,  but that is their fear and they will have to live with it. 
My Step Father was a real mans man and yet was scared shitless of hospitals and would never visit my Mother 30 years ago when she had a hysterechtomy and she spent the 2 weeks in hospital without a single visit from him.  We are all different.

Bill died almost 20 years ago now and I have always felt blessed that he allowed me to be a part of his ' end days' - the end of his life and that I was able to be there for him.  The nurse I found through the gay sex bar was an angel, an absolute angel in more ways that I can possibly say and the funny thing is,  I cannot remember his name or picture his face in my minds eye at all, and yet remember every single day spent with Bill for the whole 5 months I was there. 

Take care of yourself before you take care of others, it is important to be good to yourself.

A friend died recently aged just 66 after a 5 year spell of ill health where he relied on another friend to be his carer almost 24/7.  Besides holding down a job caring for the elderly,  he would shop and cook, clean and cater to his demands and one day almost hit him because it just all got to be too much.  

It seems that some, when they become elderly or ill, become badly behaved and make demands that would not be tolerated under different circumstances,  and this was how he was.  He would complain :-  ' I'm ill you know' as if he was the only person to ever be ill.  

Another friend barked back - ' And I had cancer and fought my way through it alone,  and if I can do it, then you can damned well behave and shut up about how damned ill you are all the time or you will be left on your own to cope just as I did.' - and that - kinda - shut him up for a while...  ( only a while ) 

It's easy to regret outbursts - but some people do drive you to despair with their selfish and self centred ways and during ill health some people do become incredibly insulated - the whole world evolves around them and their ill health,  and this is not  a healthy world view for them.  If they are dying, then that is another criteria, as I would suggest allowing them space to talk about their life and their achievements as this will help them feel good and you will learn about the person, for we all have a story to share.

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