As a family caregiver, it is often challenging to fully prepare for the loss of a loved one. The many changes that take place as the end of life nears may feel sudden and scary. Uncertainty about what to do next or some level of discomfort spending time in the room and providing support are common reactions. While there are no exact indicators of how much time your loved one has left, you can help to prepare yourself by understanding common signs that death is nearing. Doing this can help you gauge where your loved one is at in the process and determine the best way to provide meaningful support in their final stage of life.
Signs Death is Nearing
If your loved one has been diagnosed with a life limiting condition, the earliest signs that death is nearing are often noticeable about one to three months before those final moments of life. Indicators might include:
- Changing sleep patterns, napping more often or sleeping for longer periods of time
- A decreased desire to eat or drink
- Changing toileting habits resulting from reduced food and liquid intake
- Withdrawing from social interactions
- Weakening body muscles
- Confusion about time of day, date or what’s going on around them
Supporting Your Loved One When the End of Life is Near
Once your loved one has been diagnosed with a life limiting condition and starts to exhibit these symptoms, they might begin to experience a strong desire to review their life, make amends and attempt to answer some important questions, know that this is common. Planning ahead can help to make the idea of dying a little easier to cope with and accept. As a trusted family member, there are many ways to provide your loved one with support throughout this time of discovery. Let’s break them down into three areas – emotional, physical and spiritual support.
Emotional Support: Use encouraging words, show compassion and help your loved one to understand that your primary goal is to listen and honor their wishes. If your loved one has specific fears, offer reassurance without attempting to diminish their concerns. Hold your loved one’s hand to provide that valuable physical connection. Silence is also an important tool that allows time for processing before expressing thoughts. Don’t be afraid of pauses in conversation. Most importantly, simply be present in the moment to show you care.
Physical Support: As metabolism slows, your loved one may need more time for rest. They will likely have less energy, and as more time passes, it will become increasingly difficult for them to complete personal care tasks or manage a home independently. In the early stages of this process, it’s important to support whatever level of independence they are comfortable with. Encourage your loved one to break up tasks into time periods of no more than 15 minutes to conserve energy. Don’t immediately step in to help, but let them know that you’re there to provide assistance or supervision when they need it. As early as possible it’s also a good idea to begin discussions about the physical support they will need as they progress down this path. Focus on their goals and the ways in which the right support can positively impact quality of life.
Spiritual Support: After being diagnosed with a terminal illness, your loved one might pray more, seek spiritual guidance, talk even incessantly about the meaning of life or search for opportunities to connect with their own spirituality. Never force these conversations, but do encourage your loved one to explore their beliefs and feelings. It is often valuable to just listen and ask open ended questions or invite a trusted spiritual leader to pay your loved one a visit.
Discussing End of Life Options
Supporting your loved one also means understanding their goals and wishes for end of life care. If you haven’t previously had these conversations, it’s time to start. While this can feel uncomfortable, broaching the subject while your loved one is lucid gives them the best opportunity to actively participate in the decision making process so you truly understand what they want.
Your goal shouldn’t be to steer this conversation, but if you and your loved one are having a difficult time getting started, begin with a few open ended questions.
- What are the things that matter most to you at the end of life?
- What are your preferences about where you want to be?
- How do you feel about curative treatments?
- How involved do you want me to be?
- What are you most concerned about?
- What comforts you or brings you joy?
Support Through Hospice Care
In the course of these conversations, it’s helpful to talk about options. Your loved one may have the choice to continue with curative treatments or forgo them and move to comfort care. If their choice is comfort care, hospice is worth exploring. Hospice utilizes a professional team approach that shifts the focus away from curative care and toward managing pain, providing comfort and ensuring that dignity and quality of life are the primary focus. Hospice neither hastens nor postpones death, rather, it ensures a more peaceful time of transition and can provide valuable support for the entire family during this final stage of your loved one’s life and beyond. The choice of which hospice care provider to use is always up to the patient. Options for hospice care settings include:
Home care: NHPCO statistics show that in 2017, 55.7% of hospice care was delivered at home versus a nursing home, hospital or other in-patient setting. This is the space patients are often most comfortable in especially when the goal is to remain connected with family and friends.
Inpatient care: Your loved one might prefer around the clock care in a hospice facility or nursing home. As with hospice care at home, specialists in facilities provide comfort care and pain management that is based on a specifically laid out plan of care.
Encourage your loved one to include their primary care provider in the hospice decision making process and evaluate their own physical, emotional and psychosocial needs. While it is often tempting to put your own needs or goals first, respect that this is a personal decision. The patient always has the final say in whether or not to enter hospice care and in which hospice care provider to use. It’s okay to provide some guidance and input, but the most important component in ensuring dignity is to empower your loved one to make their own choices.
What are the Signs of Impending Death or Active Dying?
There may come a time when, even seemingly suddenly, your loved one’s symptoms shift or worsen. This is often an indicator that death is days or perhaps even hours away. Your loved one’s needs will shift when these changes occur, which means you can best continue to support them by being prepared and anticipating when they have reached the active dying stage. Here are some common signs and symptoms to be aware of.
Symptoms of Active Dying Include:
- Long pauses in breathing and irregular breathing patterns
- Seeing your loved one fall into a coma or semi-coma like state
- Increased incontinence, tea colored urine or a decrease in urine output
- Significant drops in blood pressure and other vital signs
- Skin appears sallow or grey and feels cold to the touch
- Agitation or hallucinations
- Gurgling sounds while breathing due to fluid buildup in the lungs
- Dark bruising as the body system slows down and blood begins to coagulate
- A distinctive acetone scent due to changes in your loved one’s metabolism
Supporting a Loved One Who is Actively Dying
In this active dying stage, your presence is probably the most important support you can offer. While your loved one will be much less responsive, continue to offer friendly, gentle touch and massage if that feels right. You might notice faint pressure from their fingers or slight twitching, possible indications that they are responding to your touch.
The sound of your voice offers great comfort to your loved one even when they are not responsive. Though not scientifically proven, hearing is believed to be the last sense to go, so never assume that your loved one can’t hear you or isn’t listening. Play peaceful music or use sounds of nature to create a more serene atmosphere. Invite friends and family in to spend final moments with your loved one if that feels right. Think back to those wishes and goals your loved one expressed a few months ago, and do your best to honor them during these final moments.
It’s never easy to know that a loved one’s life is nearing the end, but understanding the dying process and preparing yourself to provide the right support can help. In closing, keep in mind how very important it is to take care of yourself during this difficult stage in life. If you need support, Salus Hospice is always here to help. Contact us anytime.