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Caregiver Recognition of Dying

Dementia is such a broad term to explain well over 100 different ways our brain can deteriorate, causing the loss of basic functions. One of the first ways I began to understand the term and what was happening to Mom was to grasp the stages of Dementia. A couple of years ago, when I realized Mom was in stage 6 of 7 stages, I feared experiencing the inevitable. Would I be able to recognize the signs of dying? Would I be able to fulfill wishes as described in her Advanced Directive to Physicians?

Today’s guest, Dr. Sammy Winemaker, has joined from Ontario, Canada to help wrap our minds around what our loved ones may be experiencing during their final stage of life. Dr. Winemaker is a graduate of McMaster University Medical School. She completed her residency in Family Medicine and fellowship training in Palliative Medicine. Her clinical work is predominantly community-based, caring for people in their homes. She is an associate clinical professor at McMaster University in the Department of Family Medicine, in the Division of Palliative Care.

Dr. Winemaker is an active educator and researcher passionate about examining the interface between primary care and palliative care. Most importantly, Dr. Winemaker is an advocate for palliative care reform. Her beliefs are strongly rooted in the idea that the basic principles of palliative care should be the business of all health care providers and integrated into care seamlessly. Dr. Winemaker is also passionate about patient and family empowerment with health literacy. She is the founder and co-host of the podcast Waiting Room Revolution.

I had a wonderful opportunity to speak with an end-of-life doula, Melissa Wood, who explained the importance of starting the talk about the end of life to get your affairs in order. Now I am fortunate to speak with Sammy about the physical signs of dying and prepare for what we often avoid until it is time or scared to accept. Grieving will begin before we lose a loved one. Hopefully, when we understand what can be done or when to step back, then that decision will not haunt us after they are gone.

What I found very interesting is that the body knows how to die, but we do not know how to let the wind-down process happen, even when our loved ones are ready for the end. I want to be prepared for this time to come for Mom because I know once it begins, it will be an emotional struggle for me to let the body do its part to release her soul. I came to terms with choosing comfort care for Dad only when the doctor explained he was in a terminal state. Not knowing his body was in an end process as the ICU nurses managed his symptoms, I was left clinging to hope for a miraculous change in events.

For some reason, the moment the nurse mentioned black stool, my mind and heart aligned. Dad was in his process of dying, and my hope was redirected to prayers that he would transition painlessly and peacefully. Now, as I witness Mom decline through the stages of Dementia, I find myself praying for the same transition for her. Staying in the present moment to enjoy as many smiles and hugs from her takes quite a bit of energy. Understanding the stages of Dementia also helped reduce the fear of simply knowing what to expect. Every form of Dementia is different and so is each individual experiencing the end-stage.

My fear of wondering what she would look like, sound like, or even smell like during this process kept me from enjoying our present time together. Would it be a fast heart attack, a battle with pneumonia, or would I recognize tell-tale signs in the months ahead? Stage seven in terms of Dementia may last 1 to 3 years. A brain that was once weighed three pounds would deteriorate down to one pound. Although adult-sized, your loved one will resemble a newborn child. Sammy explains this slowing process more in detail during the podcast.

I catch glimpses of a young four or 5-year-old girl from time to time when Mom smiles or responds with a childish giggle. At that moment, I smile back with the realization she has become younger still and closer to an end I’m not ready to experience. Turning my attention to her body for signs of change instead of listening for shifts in cognition brings about a morbid awareness. I now am more aware of trends happening month by month. Whether we are ready or not, the body knows what to do, and God will make the call home in divine time.

Here are a few signs to expect with your loved one in the final stage of Dementia:

1. Your loved one will most likely no longer recognize names, faces, or whereabouts.

2. They may attempt to remove clothing regardless of temperature.

3. Although it may be painful to look into their eyes, you may witness a vacant look without focus.

4. No matter what you try to do, your loved one may resist all caregiving.

5. Your loved one may have experienced significant weight loss from loss of appetite.

6. They may drool more as swallow reflexes diminish and talk less.

7. Your loved one may begin to sleep more, 20 hours a day even, or experience restlessness, aggression, and anxiety.

8. Skin infections or breakdowns may occur.

9. As this end nears, your loved one will lose the ability to smile as the brain can no longer tell the body how to sustain life.

10. Circulation changes cause the hands and feet to feel cool to the touch and possibly appear pale or purplish.

11. Urine slows and becomes a deeper yellow.

12. Breathing slows and changes patterns until it stops.

Thank you for joining in and listening with us today. You can find more about this topic on the blog at I hope this gave you more food for thought and until next time, BE PROACTIVE. Take care, everybody.




Intro: Vacation Time by Khris Paradise

Outro: Misty by Khris Paradise

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