Palliative care is aimed at improving the quality of life for your Mum, Dad or loved one, by looking at their physical, practical, emotional and spiritual needs. Whilst also helping your family through this process. It’s not about ending life early or prolonging life at all costs – it is about having the most comfortable and highest quality of life until death. Starting palliative care doesn’t necessarily mean your loved one is going to die soon. It does mean that their illness can’t be cured and they are likely to die from it at some stage. The focus shifts from trying to cure the disease – called curative treatment. To palliating symptoms (hence the name ‘palliative care’) and pain, helping them to feel as comfortable as possible. They might receive palliative care for as little as a week or for a year or more.
Being referred to palliative care will most likely be a really tough time for your Mum, Dad or loved one and your whole family. It’s hard to shift your focus from expecting your loved one to get better. To accepting they probably won’t, and start dealing with the new people and a new treatment team.
Where can palliative care be received?
Your loved one can receive palliative care:
- At home
- In hospital (there might be a specialist palliative care unit)
- In hospice (a place that specialises in caring for terminally ill patients)
Sometimes people move between places depending on the type of care they need. Depending on their needs, your loved one may receive palliative care from their own GP or health care team. Or they may be referred to a specialist palliative care team. Don’t be afraid to ask questions and to lobby for the best care and support available to them.
My Mum/Dad/Loved One Is In Palliative Care, What Can I Do?
“What can I do to help?” is the question most people ask when someone they care about is going through a difficult time. A loved one’s decline is one of the most trying experiences many of us will ever face. It can be difficult to know what to do or say to comfort them when dealing with one of the most testing times in your life. While there is no single formula to follow. There are steps you can take that will enable you to support your loved one
and help yourself come to terms with the knowledge that death is near.
Here are the things you can do to help your loved one who is in palliative care:
- Don’t ask how to help
Although asking how you can help might be your first instinct, instead try to anticipate ways in which you can be useful. Your loved one has a lot on their mind and may not be able to identify or articulate the areas in which they need help. It’s also possible that they might feel uncomfortable asking
for aid. If you see a way in which you can provide assistance, do it. Make a meal. Clean your loved one’s bathroom. Your foresight and initiative will be appreciated.
- Don’t make them talk about their condition
Remember that your loved one has talked in depth to doctors about their illness, prognosis and treatment options. If you were not a part of those meetings, it’s okay to ask about general news, but resist the impulse to go into detail. More likely than not, this may discourage your loved one, make them feel less “normal”, and undermine the positive attitude they’re striving for. When they are ready to share, they will initiate the conversation.
- Listen with an open mind and heart
When your loved one is ready to talk, be ready to listen, even if the topic is one you’d rather avoid. The person may not need advice, but what they do need is a sounding board to help them think through the pros and cons of the options. They also need someone who won’t fall apart when they talk about fears and concerns. Make your loved one feel comfortable by asking questions and affirming their feelings.
- Help alleviate their fears
If your loved one is harboring fears about the dying process or death, it’s important to address them. Gently encourage the person to talk about what they are afraid of or apprehensive about. Do what you can to ease those worries, whether that involves physical action or encouraging words.
- Help them maintain their dignity and control
Although you might want to do everything you can for your loved one from the minute they receive their diagnosis. It’s important not to hover or treat them as an invalid. Let them maintain a normal life by doing the things they can for as long as they can. Otherwise, they might feel as though they have already lost control of their life. Once your loved one does need aid to get from one day to the next always be sure to ask their opinion and make sure their wishes are being followed.
- Reassure them that their life mattered
It is common for depression and doubt to set in when someone is facing the end of life, particularly if they have always been an “in-charge” person. Take every opportunity to express appreciation and admiration for their accomplishments and communicate what your relationship has meant to you. Make sure that your loved one knows how much you care about them, and encourage other family members and friends to do the same.
- Share in their faith
Whether your loved one is spiritual or a devout person of faith, they may be uncertain and apprehensive about what comes next. They might not feel comfortable initiating conversations about their beliefs. Look for subtle hints that they wish to discuss these matters and listen for openings you might be given. They may be comforted by the assurance that a divine being exists and that an afterlife awaits. Whether it comes from you or you offer to
bring in a priest or minister to speak with them.
- Create a peaceful atmosphere
The last thing your loved one wants is to be surrounded by reminders of illness and death. Most patients prefer to stay in their own home throughout the end of life. If your loved one has to remain in a healthcare facility or hospice, though, do everything you can to make their room feel like home. Keep the area free of clutter and harsh lights, try to hide or disguise medical supplies. Surround them with their favorite things, such as pictures, flowers, artwork, music and above all, people.
Give them permission to go
This is one of the most difficult forms of support you can give your loved one. Even after a person’s fears about the dying process have been addressed, some might still worry about leaving behind the people who love and care for them. Assure your loved one that everything has been taken care of, family members will look after one another, and they will be remembered and cherished. Let them know it is okay to let go when it is time. Removing any emotional obstacles that may remain will help open the door to a peaceful passing.
- Sweet things to say to your loved one in palliative care
Knowing what to say to your dying loved one can be both intimidating and heartbreaking. These are intensely personal conversations. It’s normal to not know where to begin and to worry that you will say the wrong thing. To assist with this, we’ve compiled some suggestions to help guide your conversation.
However, the most important thing to do is speak from the heart with kindness and compassion. Say things like:
- I love you so much
It’s never too late to say “I love you”. These simple words convey so much. If saying “I love you” isn’t a habit in your family, take the opportunity to say it now. Even if your dying loved one can no longer respond, they can still feel the impact of these words. As the end approaches, you may not have the luxury of knowing what conversation will be your last. So take every opportunity to remind your father, mother, or loved one that you love them.
- Thank you for all you have done
People want to know that their life mattered. Take some time to thank your loved one for the things they taught you and the experiences you shared. Use this time to share your memories and ask them to share theirs. Ask them what they’d like to be remembered for and what advise they’d like to leave behind. These conversations can be a great reminder of a life well lived.
- It is important to address unfinished business
Family relationships can be complicated by past hurts and regrets. If you are feeling remorse about a past action or issue, take the opportunity to ask for forgiveness. Regardless of how they respond, you will feel better knowing that you did your part to try to make amends. If it is your loved one who has wronged you, they may be looking for their own opportunity to seek forgiveness. It is also possible that they will never acknowledge how their actions or inaction affected you. For your own sake, you may wish to offer this forgiveness in your own way regardless of how they respond. This is
true even if they are no longer able to communicate or respond. Forgive them to free yourself of the burden of anger and pain and seek counseling if you need additional support in processing your feelings.
- It’s important to get support
Often when treatments are stopped and palliative care begins, people start to look a bit better. Your loved ones hair might start to grow back or they may even have more energy. The medical treatments probably made your loved one quite week and ill, so when they are stopped, their body starts to recover from the side effects. But unfortunately, the illness is still there. There will likely be some good days and some bad days. Take it day by day and if you can, try to get the most out of the good days together!
The palliative care team should include a social worker and/or psychologist who can help you and your family talk about your fears and feelings. They can connect you with support services and tell you about services to help at home. If you know what your loved ones funeral wishes are, you can prearrange the funeral to eleviate some of the pressure when the time coomes. If you need more advice and tips on what to do if your loved one is in palliative care, as your compassionate funeral home, we are always here to help
