Having a caring role for a relative or friend with a life limiting illness can feel like riding a rollercoaster. Clear priorities can help you both make difficult decisions during chaotic times.
When things are tough, caring for a loved one can feel even more difficult. This can be due to a number of reasons including:
- challenging symptoms
- finding appropriate sources of medical, social or practical help
- very little time for yourself because of your loved one’s needs
When things are tough and in the thick of challenging moments, it can really help to have clear priorities. Knowing what’s most important to your loved one can be a great reference point to help you both make decisions.
Those with life limiting illness may have a variety of priorities – some I’ve witnessed include:
- Remaining in their own home
- Minimising pain and if possible, being pain free
- Living long enough to attend a special family occasion
- Enjoying their remaining time to the fullest of their ability
Knowing what your loved one’s priorities are could really help focus decisions about medical interventions, place of care, approach to life etc.
Having a clear set of priorities when things are tough, can also be helpful. Knowing what you want and need gives you another focus to help make decisions in challenging and uncertain times.
Recently, a friend was taking care of her elderly father. He had terminal cancer, diabetes, severe mobility difficulties and other health issues. After a lengthy period of caring for him, she wasn’t sure how much longer he’d need her support and her energy levels were low. She made the decision to hand over responsibility for a short while to her brother. She returned home (she lived abroad) for a short break and caught up with her own life. This allowed her to recharge her energy levels.
Her priority was to be there for her Dad when he was coming to the end of his life. She knew that without this break from caring, she wouldn’t have the energy to continue. She managed to have just under three weeks away before she needed to return. Her Dad’s health had deteriorated further at this point.
By taking a break, this enabled her and her brother to deal with difficult situations and make decisions about their Dad’s care, once he was unable to do this for himself. He died only a week later, having had continuous support from his son and daughter.
Challenging times can be part of the latter stages of life. Being clear about our priorities and those of our loved ones can give some clarity to help make decisions during these difficult times. What we experience will rarely be perfect. However, making choices based on our priorities will hopefully lead to us living in a more conscious and focused way, in line with our priorities.