For caregivers, end of life care, dying with dignity, and helping someone follow through with end of life wishes and treatment decisions, will bring on a huge range of emotions. It is likely something you are unprepared for as a caregiver.
You don't have to worry about the right thing to say or do at this time. There are no rules. Let love and patience be your guide.
Understanding the dying process will assist you in helping the person in your care in dying with dignity.
First, shifting our perspective through palliative care - which in the simplest terms, means changing the focus from cure to comfort - can be a great, huge relief.
Helping someone die with dignity is easier when you have an advanced care plan to help make decisions and help the person in your care communicate their wishes. It is hard to feel you are making the right choices when you are in the moment, and your judgement is complicated by your love for someone who is suffering.
Try and listen to what the person in your care is saying. The tendency is to try and encourage people - have something to eat, go for a walk. Sometimes that is absolutely the right thing to do but, at a certain point, “getting going” again can be debilitating.
Active listening is an act of love
Help the person you're caring for express and meet their wishes, even when it is not easy. This might include helping to repair relationships, or expressing their burdens of life.
Write their story
Reminiscing and sharing life stories brings relief to caregivers and care recipients, and can be very therapeutic. You or another family member or friend can help - not everyone sees themselves as a writer.
The power of photos
One son went above and beyond in meeting his mother's wish to have family pictures on the wall of her room in a long term care facility. He papered the walls with pictures from all aspects of her life. It was so cheery; hers became the go-to feel-good room for staff and other visitors. It brightened everybody's day.
End of life activities
A recent study that examined the perspectives of older Canadians living at home, and the findings indicated that people at end-of-life may be engaged in activities that involve:
- Living while dying
- Re-working everyday life
- Being guided by the will of the body
- Focusing on relationships
- Attending to the small things in life, and engaging existential orientations
(Canadian Association of Occupational Therapists)
Helping with physical comfort
There are health professionals who can help you address physical discomfort - issues such as bedsores, mobility, proper lifting, oral care (some medications can cause dry mouth or sores) and swallowing problems. Arrange for a personal support worker (PSW) or occupational therapist to come in and help you manage these tasks.
Even if the person who you are caring for is unable to speak, they will sense your presence. People are often afraid of dying alone; it's therefore helpful to let the dying person know that you're there. It is easier for people to spend their last days in emotional comfort if they know it's okay to talk about their fears and wishes with those they love.
Tell the person that you and other loved ones will be okay after they leave you. If possible, bring together important people in the person's life to say goodbye.
Take care of yourself and recognize your limits
Helping someone in your care to die with dignity is perhaps the most meaningful, yet also most difficult time of your life. Be good to yourself.
Recognize that as a caregiver, you're dealing with a lot and you need to take breaks. The more you can take proper care of yourself, the more strength you'll have to take care of someone who is dying.
Rely on family, friends, volunteers and your health care team. If you can no longer provide care, you may need to use a hospice program or similar facility in your area. Don't be ashamed to ask for help. You're doing the best you can.
Elizz also offers a wide range of caregiver support services.
It cannot be stressed enough that simply being there is extremely important in helping someone die with dignity. You don't have to worry about the right thing to say or do at this time. There are no rules. Let love and patience be your guide.