I always say that good health is a precious gift, not to be taken for granted. Living with illness makes one look at life in a different way. Receiving the diagnosis of any chronic long term illness can be earth shattering, and a shock to the system. It may take some time to process this new information that is clearly going to seriously change your life, and that of your family. You may possibly feel relief to finally know what has been troubling you for so long. Being able to put a name tag, as it were, to the ill health package you've been handed in life, at least gives you something to tackle and a plan of action can be implemented, instead of wandering around aimlessly in the dark. For some the journey to diagnosis can be an agonisingly long one, interspersed with countless tests and dashed hopes.
As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.
There are so many facets to this complicated situation, it's difficult to know where to begin. Despite trying to carry on life as before, putting on a brave face, ultimately huge changes begin to take place, whether one likes it or not, touching every aspect of one's life. Not only is the future thrown up in the air, but plans and dreams that were made together have to be altered accordingly and sometimes are simply no longer possible.
Whilst family and friends may shower the caregiver with words of sympathy professing to understand what's involved with caring for someone 24/7, these otherwise flattering comments can feel empty and without substance. Practical help is often not forthcoming, and it is highly unlikely that a caregiver is willing to openly admit they need assistance. One of the most annoying things that people say is: "If you need anything - call me." I can assure you, a caregiver more than likely will never pick up the phone to accept the offer.
If you're a person who sincerely wants to help, then be direct and specific as to what you are able to do. Perhaps you're going to the supermarket to do your own shopping; it would be of tremendous help to ask any caregiver for a shopping list of required groceries. Maybe you are going to the pharmacy - no doubt a caregiver spends much time filling prescriptions, and would be very happy if on occasion this never ending task could be shared. The same applies if you're going to the post office, paying bills or posting letters, a caregiver would be pleased for relief from these mundane jobs on occasion. It just takes a little thought - don't wait to be asked, just step in. If the shoe were on the other foot, you too would be very grateful.
The on-going sole responsibility and subsequent financial burden lay heavily on the shoulders of a caregiver. Being able to talk to someone about the worries and anxieties of being the sole breadwinner won't necessarily solve anything, but lighten the load a little, and ensure he/she doesn't feel quite so alone.
Being a caregiver, is a lonely role to bear, often experiencing social isolation which can be painfully magnified by the lack of visitors and invites. Inviting guests over, hosting dinner parties and socialising as in the past, may no longer be possible. However, social interaction is vital for both patient and caregiver, and for obvious reasons has to be adapted to suit the current circumstances. Although there might be big changes, for emotional welfare, a social life of some sort needs to exist.
Every caregiver needs "time out" and an activity or hobby which is outside the confines of the home and is solely theirs, is essential for good mental health. Taking regular breaks from the daily pressures to recharge those internal batteries is vital for his/her emotional and physical well-being, which enables the caregiver to continue taking care of a loved one.
The price paid by a caregiver looking after a parent or spouse/partner, over a period of time is high and can take a terrible toll. It is therefore extremely important the needs of a caregiver be understood and met. I write from personal experience, for my caregiver is my darling husband. I wish with all my heart that I was blessed with good health and I'd give anything to be the healthy high spirited woman he married all those years ago.