Mindful Strategies For Supporting Loved Ones During The Final Stage Of Life
Fall was in full bloom in Michigan during my dad’s celebration of life
We all seem to have our own ways of dealing with death, our own mortality, and that of those we love. What does death really look like? How can we best show up for it when it arrives in our lives, as it inevitably does? I wondered this while my dad was dying recently. Prior to this experience, I knew death just a little bit. I knew it enough to know what it looked like. I saw my a few loved ones near the end of their lives and my dad looked similar when I showed up at the hospital. My dad was skinny, out of it, and weak and I knew in my gut that it was probably his time.
Me holding my dads hand during his final days
I have come to realize that we currently live in a culture that has become very fearful of death and we have lost much wisdom and traditions surrounding it. How can we be there for ourselves and our loved ones during such a tender time, if we are afraid of it? None of us are getting out of here alive, right? So, why avoid something that could be normal and dare I say it, beautiful, primal, biological, and messy, just like childbirth is? How can I bring mindfulness to myself and loved ones in the face of death?
I was thinking today how much childbirth mirrors the final days of life. Both death and childbirth require absolute presence and calmness in what feels like utter chaos and pain. Both often happen in hospital environments which ARE helpful, but aren’t exactly nurturing. Both childbirth and death involve a strange kind of waiting - you can’t rush those phases and you can’t avoid some of the pain. The best thing you can do in both stages is to tap into your intuitive wisdom, try to listen to your body, and lean on your loved ones.
If you are bearing witness to a loved one nearing death I think the best thing you can bring is a calming presence. You can offer sips of fluid, chit chat, music, share stories, and ask final wishes. You can share medical team updates and reality or make plans for a future you both know is unlikely. You can try to intuit the needs of your loved one that cannot exactly express their needs and wants in usual ways. Ensure your loved one has a health advocate who is there 100%, 24/7, especially as the body shuts down in the final stages and days. I found both birth and death to be so much in the flow of life’s basic needs that sleep and normal busy life was just not relevant or necessary. Be calm and loving in whatever little ways that feel appropriate. These are such tender and vulnerable phases of life.
I am sharing the following in hopes that it might help prepare you to anticipate symptoms of approaching death in a loved one and how you might help navigate through them as well as possible. The symptoms listed here indicate how the body prepares itself for the final stage of life and how we bearing witness can help in mindful ways. Not all of these symptoms will appear at the same time, and some may never develop. These changes may occur gradually over a period of days, or the onset of this process may be sudden with very rapid downward progression. As each of us is unique in our living, so too, in our dying. Hospice and palliative care teams are great resources to help navigate this tender phase with grace and dignity and I greatly appreciated their support with my dad. These are the expected changes that occur as disease progresses.
Physical Changes During Final Stage Of Life And Ways To Help
Me and my dad during his last night
Mottled skin: The patient’s skin may appear mottled, especially in the upper half of their body, underside, or ears. Legs may feel cool to the touch. You can help by keeping your loved one warm with light blankets.
Body temperature: The patient’s body temperature may increase. Use light bedding, cool compresses, sponge bath, or dress lightly. I noticed my dad was much warmer than usual during his last day. We kept one light blanket on him for most of his final days.
Sleeping: The patient may increase the amount of time spent sleeping and have difficulty in waking. Plan to be with patient fully whether or not they are alert. Do not shake a patient. When they awaken, speak gently and reassuringly. Since hearing is usually the last sense to decrease, assume the patient can hear you. Singing helped calm my dad during his final days. Which is ironic as he liked to say I had a terrible singing voice. I thought about reading to him, but it didn’t feel right. Music didn’t feel right on my phone either. He preferred the tv to be muted during his final days too.
Sleeplessness at night: The patient may experience agitation or periods of restlessness, also known as terminal agitation or terminal restlessness. Mention who you are, day or time, and your purpose for being there. Speak softly. Talk with the care team to see if medication might help relieve some of this. My dad needed pain meds and something for his fidgeting to help him sleep, even though he insisted verbally he wasn’t in pain. Palliative care noticed other signs that indicated likely pain. My dad’s last several nights were difficult for him and the hospital had to bind his wrists to the bed rails because he kept tearing off his face mask which immediately dropped his oxygen levels. I spent a night in the hospital trying to help the nurse get his medications right, help him adjust his breathing mask, to help him settle and rest. The nursing staff was so kind and brought me a recliner and blanket so I could nap a bit at his side.
Urinary incontinence: Changes to bowel and bladder function may occur. Disposable padding beneath the patient may decrease the need for continued linen changes. The patient may need a catheter to drain urine from the bladder. Decreased kidney function is part of the body’s “shutting down”. In reality, my dad spent his final weeks of life at home, in his recliner, watching the news and napping on and off. He went to the hospital because he could no longer get out of his chair to use the bathroom. He passed away one week after getting admitted to the hospital for pneumonia with compromised lungs in general, with lung cancer lesions present and emphysema. He didn’t tell anyone that his lung cancer had returned so the hospital visit was a sort of surprise.
Increased congestion: Patient often cannot clear mucus or secretions by coughing. This is known as terminal congestion. Use swabs to moisten mouth, gently turn head, position to side to move secretions, elevate head of bed. Medications may help.
Increased restlessness: Patient may pick or pull at bed linens and muscles may twitch. You can play soft music, be a quiet physical presence with use of gentle touch on the arm, or hold the patient’s hand. Some people need reduced stimulation. My dad wanted the tv volume off. Sometimes medications can help and ativan helped this with my dad. My dad seemed to calm when I held his hand and sang to him. He also had foot and leg cramps toward the end and we rubbed lotion on his feet and I could feel the cramp knot in his foot.
Surge of energy: Patient might regain appetite, have increased alertness, and may wish to be more social. This may be due to an increase in spiritual energy as the body prepares for transition from this world to the next. Enjoy this time with the patient. It is usually short lived. My dad wanted to sit up in bed and take the oxygen mask off. The nurse negotiated with him and said he could sit up as long as he kept the mask on. We sat together with me holding him up for 5 minutes. It’s a tender memory for me. I’m sure he wanted to walk but his legs were too weak by that point.
Decreased appetite: The person may stop eating or drinking as much. This is the sign of the body shutting down. Offer food and fluid as desired and tolerated. Frequent small bites. Do not force food or fluids. Keep lips moist with lotion or lip balm. My dad liked fountain soda sipped through a straw periodically.
Eye changes: The patients vision decreases in clarity. Eyes become dim or lack luster, gazing, remain continually open. Continue to speak softly and reassure patient of your presence. Identify yourself to the patient and keep needed belongings close at hand. Keep room adequately lit, eyes free of discharge, and use eye drops if needed. My dad didn’t wear his glasses near the end. He woke up occasionally and locked his eyes on me and seemed to get comfort from seeing me.
Voice changes: The patients voice becomes weak or slurred. Listen carefully. Ask simple yes or no questions. Patient may also moan or cry out loud, especially when turned or touched. Giving pain medication an hour before moving patient and reassure patient by talking to them. You never know when your last word exchange will be spoken. I honestly think the last thing we talked about was whether he liked Tom Petty or John Cougar better. He said he didn’t know. I think he liked John Cougar.
Breakdown of skin: Skin may get sore or red. Reposition every two hours as tolerated, apply lotion to improve circulation. Avoid pressure on reddened areas with pillows or padding, but don’t rub these spots. I really appreciated how the hospital care team made sure to move my dad often and kindly.
Breathing changes: Breathing patterns may change, with periods of rapid, shallow panting or breathing that stops for 10–30 seconds. This may be due to decreased heart rate, blood pressure, and blood circulation which causes a build up of waste products in the body. Elevating the head of the bed or repositioning the patient may relieve some of the breathing difficulties. This is an expected change as the body continues to shut down the breathing process and is often a sign that death is near. After watching my dad take jerky, compensatory belly breaths for 3 straight days, I didn’t notice that they were getting more shallow and slow towards the end. His doctor had to point it out to me and I was grateful for his shared observation. My nerves were so shot and I was so keyed up from the entire experience.
Walking in nature has been my saving grace yet again during this difficult time. This was a sunrise hike I took just after my dad passed.
Other More Emotional, Spiritual, and Mental Changes During Final Stages of Life
Unresponsive: Patient may seem withdrawn or in a comatose like state. Speak in a normal tone, identify yourself, hold the person’s hand, say whatever you need to say that will help the person “let go”. I told my dad his body seemed to be shutting down on him and he said, “I hope not!” I said “me too dad, me too”. I told him we were taking off his respirator and that it is ok for him to go when he’s ready and that we loved him. He was more unconscious at this point. I told him he was exactly the dad I needed and I’m so glad he was mine.
Vision-like experiences: Patient claims to have spoken to persons who have already died, or to have been to places not accessible or visible to you. Do not contradict, explain away, belittle or argue about what a patient claims to have seen or heard. Affirming their experiences will calm them. My dad did this a few times, referred to his mom still being alive and going to her house. My aunt reminded me to just go with it. Similar to someone who has dementia. This is a time to practice deep listening.
Repetitive or restless tasks. Patient may have something that is unresolved or unfinished preventing him/her from letting go. Talk to a hospice care professional and find ways to help the person find release from the tension and fears, give assurances that it is ok to let go.
Inner circle: The patient wants to be with only a few or even just one person. If you are not part of this “inner circle”, it may mean that you have already fulfilled your task of giving permission to let go. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission.
Out of character: The patient may make a seemingly out of character statement, gesture, or request. Accept the moment when it is offered. Kiss, hug, hold, cry and say whatever you most need to say.
Holding on: The patient seems to be holding on, even though it brings increased discomfort. Reassure the patient, assure them that it is ok to let go. My dad seemed to hold on the last day, his last hour. I wish I told him it was ok to let go more frequently than I did. My aunt and uncle say that I did but I hardly remember. I told him I loved him a lot though.
Goodbye: The patient is ready to say goodbye. Stay close, hug, speak softly, say “I love you” or share happy memories. Crying is ok. Tears express your love and help you to let go.
This was my dads favorite photo of us walking back from the store together in 1978 on Henry Street in River Rouge, Michigan
In summary, be present, be open to what is happening, try to be on the lookout for ways to help your loved one feel more comfortable and at peace with this tender stage of life. Be a good listener to yourself and those around you. Get little doses of rest and nurturing where you can. Being present for my dad during his final days, and for my brothers and family throughout, was some of the hardest days and moments of my life. I was devastated for a week following. I’m still finding it hard to function in my day-to-day life a month later. Saying goodbye is never easy and endings just hurt in all forms.
I didn’t talk much about the feelings of unfairness and pain that accompany saying goodbye to a loved one. Perhaps that will come in another post.
Remember, it is our job to show love and help loved ones let go, when it is their time. What a great gift to offer.