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Horne: Emotions at loved one’s end of life

At one point she simply said, “I’m completely blind now.”that was the beginning of a rapid, steady decline in her health on all levels.
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Marjorie Horne

Having my mom live with me in my home during the final year of her life gave me a most intimate opportunity to closely observe the process of her coming to the end of her life.

That experience left a great impact on me in many ways.

Sometimes her behaviour was confusing and some days it felt like it was all too much to bear.

Everything escalated when she suddenly went completely blind one day from her glaucoma.

She only had limited sight in one eye and when it suddenly left, she didn’t tell me it had happened for several days.

Then at one point she simply said, “I’m completely blind now.”

And that was the beginning of it all, a rapid, steady decline in her health physically and mentally on all levels.

Mom had always had an incredible mind.

Her photographic memory was evident in her uncanny ability to remember any phone number after hearing it just once.

It also was an amazing thrill to listen to her recite sports scores on all her favourite teams and tell you facts on any player with an ease that would have put any good sports reporter to shame.

I watched as her memory faded and she began an inward journey.

Although you could see the signs of it, the understanding of it left me perplexed and confused as I did my best to care for her.

Watching someone you love steadily decline can be very fearful.

It of course generates your own anxieties about death and the fear that most of us have of leaving those we love and going into the unknown, even if you have strong faith.

When looking death in the eye, it is the human condition to be somewhat unsure of your footing.

For my mom, it appeared that her soul still had work to do.

I wondered how she could seem content to be in her bed each day and what little things seemed to be important to her and be a part of her own process of life review.

While it was very apparent that having her family so close around her gave her a great sense of contentment at this stage of her life journey, there were many emotions that surfaced and a very external display of some very deep introspection that she was going through that sometimes left me scratching my head.

However, being a spiritual seeker myself, I observed it all with a sense of wonder of what was all going on inside her.

It took me many months to really come to acceptance of it and to join in some understanding of what she appeared to be going through and how to support it as best as I could.

I think it is even more now as I reflect on it all that I am gaining some wisdom about it.

The path of life review and coming to terms with the experiences, choices and unfoldment of the decisions that we make in life was what my mom was experiencing right in front of me.

It seemed that this was very important for her to do before she died.

When you are around someone who has Alzheimer’s or any of the many other disorders of cognitive impairment, especially as a loved one, it can leave you feeling unable to understand or accept what is happening to the person who is changing so dramatically from the person you knew.

An interesting concept that I think would bring comfort to many caregivers was developed by Naomi Feil. It is called Validation Therapy.

It is what I came to know intuitively from caring for my mom and subsequently with my clients.

The way Naomi explains it is this: “Validation is a way of communicating with and helping disorientated older adults. It is a practical way to reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and holistic view of individuals.

“When one can step into the shoes of another human being and see through their eyes, one can step into the world of disoriented older adults and understand the meaning of their behavior that sometimes seems bizarre.”

Feil explains that in the final stage of life, this disorientation, often diagnosed as being an Alzheimer type dementia, can reflect a person’s need to actually try to resolve unfinished issues in order to die in peace.

Their final struggle is important and we, as family or professional caregivers, can help them.

Using the techniques of Validation Therapy, we can offer them the opportunity to express what they wish to express, whether it is with verbal or non-verbal communication.

She cites that the reasons that underlie the behaviour of disoriented older adults can be one of the following basic human needs:

1) resolution of unfinished issues in order to die in peace;

2) need to restore a sense of equilibrium when eyesight, hearing, mobility and memory fail;

3) need for recognition, status, identity and self-worth;

4) need to feel useful and productive;

5) need to express feelings and be heard;

6) need to be loved and to belong; need for human contact ;

7) need to be nurtured, feel safe and secure, rather than immobilized and restrained;

8) need for sensory stimulation—tactile, visual, auditory, olfactory, gustatory and sexual expression.

Naomi’s theory definitely helped me to better understand what my mom was needing from me and perhaps it is what we all need to consider as we try to improve the care we give to our elderly population.