If you are unexpectedly faced with organizing care for a loved one, the experience can be overwhelming and bewildering.
The aim of this website is to facilitate the understanding of the physical, emotional and financial demands of caregiving while ensuring the dignity of the patient.
I strongly believe that preserving the dignity of the loved one is of utmost importance, no matter how helpless or disabled the person maybe. Their input in decisions about their own wellbeing and care is critical to providing quality care. “Preserving dignity” is not limited to ensuring their physical care and comfort; it also means addressing their mental and emotional needs. All too often, an illness that takes away an individual’s physical well-being makes caregivers uncomfortable and dismissive. Illness should not transform a loved one into someone who can be ignored or “seen, but not heard”.
Caregiving is something that should be thought about as early as possible; often it is first considered only in the aftermath of some calamitous event or diagnosis. In some cases, the patient’s wishes may be unknown, they may have difficulty communicating, or they may be in denial about their own future, and in many cases urgency becomes an unwelcome and restrictive factor in decision-making.
The goal of this website is:
- To give help and advice to caregivers, or people who are thinking about home care.
- To help you to ask important questions about your own circumstances and the advice of others
- To help you find answers and recommend resources
- To share with you some personal recent experiences
Since I had to fend for my self and confront issues and problems as I went along, searching for answers and studying various websites late at night and getting frustrated, I thought that it would be useful to make you aware of what is to come and save you some of the grief I went through. Even though I have listed what seem to be only difficulties, I certainly do not want you to feel that the entire experience was nothing but stress and problems.
Though it was often challenging, if I was to do it over again I would not change my resolve to look after my husband at home or give up some responsibilities like accompanying him to the doctors and keeping records. The entire experience was very fulfilling; we spent all our time together, we got a chance to share the friendship of those friends we really cared for, we watched and enjoyed many sunsets together, we went to museums, read together, enjoyed music. He could enjoy the food he liked (within the doctor’s restrictions) and could enjoy a glass of wine and eat whenever he desired.
To me the biggest reward was that I was always with him. If he had been in any kind of care facility we would not have been able to share all this. We would not wake up together or go to sleep side by side each evening. We also had the luxury of talking about the future, to find out about his desires and wishes without being restricted by the routines of a professional place which has to follow its own timetable.
So for me, in spite of all the stress and frustration, the last several years are a beautiful treasure chest of memories of time together. In many ways, our love became stronger.