Doing the ‘right’ thing
“In these matters, the only certainty is that nothing is certain.”
As a family caregiver, you need to look after your own well-being - in order to care effectively for your loved one. This guide offers guidance to help you achieve that balance.
In everyday life, we humans like to know; we don’t like not knowing. It can cause us to be afraid and anxious and behave in ways that may seem irrational to others and even ourselves. Never is this truer than when caring for a dying loved one: there are so many questions flying around with no real answer. All this uncertainty mixed with lots of sadness and fatigue can be burdensome.
In our experience of working with people who are dying, certain stages usually happen in the dying process. We’ve listed some of them here to help you identify them and hopefully make them less scary. It’s important to stress that these general signs of dying will sometimes appear in different orders or combinations: every person is different.
Loss of appetite
Your loved one will eventually spend a lot of time in bed, and so their energy needs decline. Your loved one may begin to refuse meals or liquids or accept only small amounts of bland foods. Even their favourite foods may hold little appeal. Near the very end of life, your loved one may be physically unable to swallow.
Excessive fatigue and sleep
You will notice your loved wanting to sleep the majority of the day and night. This is a sign that their metabolism is slowing down. They may become difficult to rouse from sleep.
Mental confusion or disorientation
Organs will begin to fail, including the brain. Your loved one may not be aware of where he or she is or who else is in the room. They may also speak or reply less often and may respond to people who can't be seen in the room by others. They can also become more confused about time or may act restless and pick at bed linens.
· Remain calm and reassuring.
· Speak to the person softly, and identify yourself when you approach.
Breathing can become irregular and laboured. Sometimes excessive secretions create loud, gurgling inhalations and exhalations.
As the body shuts down, your loved one may gradually lose interest in those nearby. They may stop talking, mutter incoherently, stop responding to questions, or simply turn away.
A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behaviour. This can last less than an hour or up to a full day.
· Be aware that this is a natural part of the dying process and not a reflection of your relationship.
· Maintain a physical presence by touching the dying person and continuing to talk, if it feels appropriate, without demanding anything back.
· Treasure an alert interlude if and when it occurs, because it's almost always fleeting.
Changes in urination
Little going in, as your loved one loses interest in food and drink, means little coming out. Dropping blood pressure, part of the dying process also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-coloured.
Loss of bladder and bowel control may happen late in the dying process.
Swelling in the feet and ankles
As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially, and sometimes also the hands and face. These areas may take on a swollen, puffy appearance.
Coolness in the tips of the fingers and toes
In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the hands, feet, fingers, and toes become notably cooler. Nail beds may also look more pale, or bluish.
Skin that had been pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.
Things to do
You can see from the list above, that the focus is on keeping your loved one comfortable. There are other activities that we recommend for your loved one which can enrich your time together, helping them and you at this trying time.
1. Hand and foot massages with essential oils
2. Reading aloud to the patient, maybe their favourite book or newspapers, poetry, whatever has meaning to the patient
3. Play their favourite music and listening together
4. Bring in family photos to reminisce together
5. Make the room smell nice with scented essential oils
6. Chat gently with the patient and keep them updated on what is happening in the family’s day-to-day life (children, grandchildren, at school, neighbours still washing their car every Sunday, etc.)
7. Little tastes of their favourite food or drink, if they are still able or interested in food. There's another section on offering your loved one food & drink.
Again, remember that this can be a challenging time but what you are doing, caring for your loved one in this way is a wonderful and very real expression of your love for them. Knowing that you’ve looked after them so well can really enrich your life and help with your grief, when they’ve passed.