Being a carer for my husband – Part 3 0



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 It was becoming more difficult as Bill’s needs increased


I had to seek help as Bill’s needs had greatly increased. It is difficult to ask for help; the average person has no idea of what help is available, and the number of agencies involved.  It is a maze which is difficult to negotiate, particularly when you have reached the stage of desperately needing help just to survive.  Information is empowerment but a dozen or more pamphlets all needing to be read and understood – too much, too much!


It is humiliating to have to admit you can’t cope; it is embarrassing to let someone come into your home to do the floors and have them comment on the dust on your skirting boards!  And, frankly, most of us don’t understand, or even care, where the funding is coming from, we just want help!


I think it would be wonderful if carers who are caring for someone with complex needs each had a case manager.  Someone who would be the first person to sit down and talk to them about their needs and walk them through the maze, help them to understand what is available and assist with the access of services that will help to ease the load of caring.  Someone who would help smooth out rough patches.


I did have someone to ‘smooth out rough patches’ but I didn’t often give her the chance to help me.   Another problem, how do you help someone who resists help?


Respite makes a wonderful difference


By this time I was doing a lot of my volunteer work from home and would receive respite when I am away from Bill for more that a few hours.


I still feel guilty and worry that everything will be alright every time I leave home.


There is a grieving when you think of the things you had planned to do together which are no longer practical, or even possible. There is a grieving for the things you may have been able to achieve yourself but now can’t even try.  There is great sadness when you think of lost opportunities; but there is great joy when you are still together in your own home and you are able to help make your partner’s life just a little more comfortable or enjoyable.


There are the misgivings, even fears, as you take on tasks that your partner had previously achieved so easily.  There is a noise in the car engine – what is it?  Is it serious?  The gutters are loaded with leaves – could I manage to get the ladder from under the house and clear them?  The fluorescent light in the kitchen isn’t working any more?  Can I just buy replacement tubes?  What did Bill say about a new starter? Who do I ask?  Suddenly the house, garden and car maintenance are your responsibility.


A carer can’t share their problems with the person they are caring for; they just have to cope as best they can, smile and say ‘everything’s fine.’


Being a carer means that I had to be prepared to respond to Bill’s every need, it was immaterial if I was tired, busy, on the phone, ill or just in a bad mood.  For most of our married life Bill would bring me a morning cup of tea into bed, I still miss that.


We felt fully supported by the Services that was supporting us and confident in their sincere concern for our well being.  We received excellent care from the staff of various hospitals (I have to admit that I worried about the working environment within those hospitals but cannot fault the dedication and skill of the staff).  They did the absolute maximum with what was available.


Carers need support from practitioners and medical staff


I know time is precious but please allocate sufficient time to talk through the problems that carers have, help them to understand the issues.  Don’t rattle off medical terms, list numerous options and rush off to the next appointment.  You may have seen this situation many times before – it is probably a first for us, and we are in a daze!


Carers need support and encouragement or they run the risk of frustration and despair becoming the dominating factors of their existence!


Help us so that we can experience that great joy of being together in your own home


Bill died in January 2007, exactly 13 years after his first stroke.


image: sraburton

Nan Bosler

Nan Bosler has been heavily involved in volunteer community work for almost 60 years holding positions ranging from member to National President in a number of organisations. She has worked with and for people of all age groups and levels of ability, with particular emphasis on the needs of older people and those with a disability. She is a published author and has presented at conferences in both Australia and overseas. She revels in the fact that she is a great grandmother. Nan feels strongly that learning is a lifelong experience. She was over 50 when she first went to University and has five tertiary qualifications. Nan is the foundation president of the Australian Seniors Computer Clubs Association and seeks to empower older people by helping them use modern technology.

  1. Thanks Nan for your story – it is so meaningful to all of us seniors who are – or might be – in this position. At the moment I’m in the stage before yours – we are both still “hanging in there”. But a stroke or dementia can come out of nowhere so I’m always aware of that. I used to work in a stroke unit so I know how quickly your life can change. Hubby and I have one word that we live by – “NOW”. If we are dreaming of something, we do it now so that there won’t be missed opportunities to regret later. Thanks for reminding me of that. Best wishes to you in this new stage of your life.

  2. Nan, what can I say other than the courage and resilience you and your Bill you had and have is wonderful. Going through this very thing with my very elderly parents and went through it, albeit differently, when I was a carer for my son who has mental health problems. Thank god for the help that is available – I would have been totally lost without it all.

    The very best of wishes for whatever you are doing now – I loved your story. Thank you for sharing it.


  3. Thank you so much for sharing your story. I am sorry to read that you are now on your own but it must be helpful to know that you did all that you could to make the last years happy.
    all of the things and feelings you went through and mentioned in this last post are the same things that I experienced after my husband passed away from Melanoma in April 2007. Having to learn to do all the man type chores and I still miss my cuppa in bed as well.
    I loved reading all your story and hope you will write more for us. I am sure the ensuing journey has been just as interesting and would uplift us as well. It is always good when we realize we are not alone in our experiences

  4. Hello Nan, I think I was about thirteen or fourteen, roughly 35 years ago – when you and Bill ran a series of film making camps at Collaroy. I’ve had a career in film and television since leaving high school! The enthusiasm and generosity of you both I remember clearly. You are an absolute inspiration, and as someone who missed out on further education, I’m motivated to take my mid-life crisis at Uni 🙂

    Bill was a wonderful man. Those weekends camped in the hall at the top of the hill (you cooked for us all!) – and the anxious wait for Kodak to return our processed super 8mm film… They were great times and I hope that you will be happy to know that there are a bunch of lawyers, teachers, artists and one film editor – who will remember Bill with great fondness and appreciation for the gift of playing with film in our formative years.

    Wishing you all the best, and thank you for all that you do to improve the lives of so many.

    Fond regards, Kate

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