Transitions Part 4: End of life
Dementia is a progressive condition for which there is currently no cure, so it’s important to be prepared and to know what to expect at the final stages. This is a part of dementia that we all find hard to face up to, especially early on in the condition, but we at Alzheimers Otago feel we have a responsibility to not shy away from the difficult topic of death so that we can help you, our clients to be as prepared as possible when this time comes.
As difficult as it can be, taking the time to talk as a family in the early stages of dementia about what is important for all of you in this final transition may help you to feel more confident about advocating for your loved one at the end of their life.
There are some key legal documents that we advise families ensure are in place early on, these are an Enduring Power of Attorney, an up to date will, and an Advanced Care Plan. These documents will help you by ensuring that the person with dementia has an opportunity to communicate their wishes, and that family can spend their last days with their loved one, knowing what they wanted, and spend less time having to make difficult decisions.
What does this transition look like for the person with dementia?
Everyone’s symptoms of dementia are different, and this is no less true as we reach the end of life. You may not be able to make your wishes known, or to clearly communicate your emotions, pain or discomfort. So it is important to have the Advanced Care Plan in place so that your family and caregivers know how you wish to be supported through this final phase of your life. Make sure that your family understands your preferences around medical interventions, that they know the things that will reassure and bring comfort, and that your spiritual needs are known as well.
What does this transition look like for the family?
This time can be distressing, as you face the finality of death and a new chapter in your grief journey. Being prepared ahead of time can help to relieve some of the pressures so that you can simply focus on spending time with your loved one and family/whanau.
Palliative care at the end of life focuses on the comfort of your dying loved one. All decisions made and actions taken should be considered in light of the question, ”Does this support dignity and comfort for my loved one?”
You can play a significant role in ensuring your loved one’s comfort by being able to interpret signals of pain and discomfort, and advocating for appropriate symptom management. By providing comfort through your physical presence, through your voice and touch, by playing familiar and much-loved music, or other gentle and calming activities that are special for your loved one.
Remember to take care of yourself as well during this final transition period. Take breaks that help to restore you, get as much sleep as you can, remember to eat and drink, so that you can remain strong and resilient. Seek the support of your family and friends, and the caregivers and nursing staff.
The team at Alzheimers Otago can spend time preparing you for this final transition, by answering your questions and concerns, and providing emotional support for you and your family. We also have copies of the Alzheimers NZ booklet The later stages of dementia and end of life care. Please contact us if you need information, advice or support.