Dementia and end-of-life care
Comforting the person
“You have to take yourself out of the situation and think of the person who is dying. It’s not about you; it’s about your loved one. It was about making my mom comfortable and going through the transition from life to death with her.” – Debbie George, a caregiver in Nova Scotia
Even though the person may not seem to be aware of you during the last stage, your presence is still a comfort. Here are some suggestions on how to offer comfort to the person:
- Connect through the senses such as holding the person’s hand, smelling a perfume together or listening to music that the person has enjoyed in the past.
- Continue to touch and reassure the person that you are close by.
- Speak calmly and naturally.
- If needed, wash the skin gently and blot dry, using as little force and friction as possible.
- Raise the head of the bed if breathing is difficult or raise the person’s upper body with pillows.
- Gently massage hands and feet with lotion.
- Tell stories, reminisce about past events, read aloud or listen to music together.
- Keep lights low.
- When the person no longer accepts food or drink, keep the lips moist and get direction on providing mouth care including cleaning the teeth, tongue and inside of the mouth.
- Speak soothingly and reassuringly to remind the person that they are safe and cared for.
- Focus on the person’s physical, emotional and spiritual needs.
- Use proper pain control medications to relieve any pain or discomfort.
- Use slow, gentle movements to re-position the person to relieve pressure areas but do so in one part of the body at a time.
- Follow the person’s lead. For example, if they wince when trying to move them, stop doing it and try at a later time.
“She wanted us to hold her hand at all times. We felt we were giving her comfort. We stayed with her and stroked her hand, making her transition as easy as possible.” – Debbie George, a caregiver in Nova Scotia
It is important to check with health-care professionals before offering any food or fluids to the person. Some people may begin to experience difficulties with swallowing. You can find some strategies that may help when offering food and fluids to a person experiencing difficulties with swallowing in the Late stage brochure from the Alzheimer Society “Progression” series.
Saying goodbye when the end is near
Rachael Mierke got the call at 2 a.m. from a nurse at the long-term care home letting her know her father’s breathing had changed significantly and that the end was near. Rachael appreciated and was comforted by the nurse’s compassionate words. “She said, ‘I’ll stay with your dad until you come, so he isn’t alone.’ I knew someone was watching over him and that she cared. That was beautiful – that intimacy and thoughtfulness,” says Rachael, a First Link® Coordinator with Alzheimer Society of Manitoba in Winnipeg.
As a former palliative care nurse, Rachael recognized the familiar pattern of end-stage breathing as soon as she arrived in the room and saw her dad. He liked country and western music, so she put on some Johnny Cash songs in his room. “We watched him and kept the music quiet because dad was a quiet man. I said we were with him and loved him. I talked about how he had been a good father and about all the good things he had done. I believe hearing is the last thing to go and thought that if he could hear us it would be soothing,” she says.
As Rachael and her sister stayed with him during those final hours, something remarkable happened. “My sister and my dad had a difficult relationship,” explains Rachael. “Near the very end, dad sat upright, looked at my sister and said, ‘Well, well, well.’ He was so pleased to see her. She looked at him and said, 'Dad, I’m here.' It was a perfect death. There was communication between them and his pleasure in seeing her. It was a very powerful experience for me and a gift for both of them,” she says.
Next section: Tips for self-care