As important as it is to provide support and care to the patient, the role of the carer must not be overlooked. For amyloidosis patients, most frequently the role of a carer become the responsibility of the spouse, child, close relative or friend.
For many, this often unexpected commission is acceptable in the beginning as many take up the challenge out of love and with good intentions. Rarely do we pause to think about what we’re getting into or weigh our options. We don’t right away contemplate whether we should keep our career going or if we’ll have to wind up quitting altogether. We don’t immediately ponder the impact that this new role will have on our children, or our own happiness. The caring for another has a life altering effect especially when the present situation is now nothing like the past and nowhere near what we had envisioned for the future.
We put our lives on hold to care for the one we love but when “on hold” becomes the new norm, a mental adjustment must be made before we hit rock bottom. This usually includes acknowledging and dealing with difficult emotions like resentment, anger, disappointment, being disillusioned and even envy because the focus is always on the patient.
As with so many things in the caregiving world, there’s no right answer for everyone on how to handle every scenario that comes with the tending of our loved one. Each person, family, financial status and condition is different. However, there are always options and changes that can be made for the better particularly when we allow ourselves a chance to open up and talk to other carers. **Empathy is the starting point for creating a community and taking action. It’s the impetus for creating change.
Such change can take place now through the sharing of each other’s journey; the pain, the joys, the highs and the lows. By bringing our story to light, we can help each other and hopefully lessen the burden we feel. However, If you are guilt-ridden or filled with resentment no matter what you do, go see a counselor. Talk through what your daily life is doing to you. Do not suffer in silence as you are no good at helping anyone when you yourself need help.
We would love to create a space for you on this site to share what life has been and is for you as a carer to your loved one. Write to us and together, let us get our voices heard so people can learn how amyloidosis impacts the patients and the carers. Our circumstance is so unique that agencies in New Zealand such as Work and Income have no discernment nor competency when it comes to the support of people with amyloidosis type conditions and their carers whereas carer support subsidy by MOH do not allow payment for the partner of the disabled person or a carer who lives at the same address as the patient.
Please feel free to write your comments below and begin to share your story..
**quote by Max Carver
Brilliant Jaime and Aubrey. Great to put all this together in such an efficient way. Here’s to the future.
Excellent report. We have asked Pat here in Australia to place your NZ link onto the Australian site. Also I…