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A heartbreaking but alas, all too familiar story from our wonderful and wondrous guest blogger Jim Ferguson – I’m cowardly avoiding the harsh wintry chill of the northern climes today… palm trees are my punishment.

It’s all yours Jim…

The Long Goodbye by Jim Ferguson

Mum sits before me

Once independent and proud

Now a shadow of her former self

Her mind befuddled, lost in a cloud

“I don’t know who I am”, she cries

As she slips deeper into the mist

Wringing her hands her head hangs low

Tears stain her cheeks ‘neath that furrowed brow

Vivid images of you in your prime

I choose to keep those pictures in mind

So young and full of joie de vivre

Those memories fade now 

Playing cruel tricks that deceive

“Who are you? Have we met before?”

“Hi mom…it’s me Jimmy, your son for ever more”

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Dementia is a cruel and unforgiving illness.

It offers no quarter, no mercy.

Watching your parent decline rapidly before your eyes from the effects of dementia is heartbreaking. I am experiencing such heartbreak today as I write this blog, thus the above few poetic lines.

My mum is 90 years old and is a physical and cognitive shell of the woman who was fearless and grabbed life with all her zest and zeal and conquered the world (in her own way).

If she had the capacity now to know she was in this state, she would be horrified. We have seen her friends with dementia, and she has been heard to say, “I never want to be like that.”

Mum was born in Sioux Lookout, Ontario on August 26, 1933, which puts her a 90-years-old although don’t tell her that today as she will tell you with conviction that “it doesn’t matter what you say my birthday is, I am 92 years old”. “Ok mum, you were born on August 26, 1933, and you are 92 years old.”

One thing I have learned as a family medicine provider with 32-years of experience, often working with patients with dementia and their families, and my most recent experience watching my mum decline rapidly before my very eyes with dementia is this: there’s no “winning” an argument with someone with dementia so just let it go and make life simpler for all involved. That’s good advice.

Mum’s “new” age is one of many aspects of her life she has either forgotten or simply recreates a new reality for. I won’t go into all the details but suffice it to say that it is simply better to let her believe what she believes.

Mum and dad moved 34 times in 69 years of marriage. They moved many times within Canada and to Barbados and twice to Belize. Mum spent months in India, Malaysia, and Singapore. She was always on the go. It is easy to see how, with her dementia, that she can get confused about the many aspects of her life.

Dementia rarely “travels alone”.

Depression, anxiety, and agitation are common companions of dementia.

Mum is chronically depressed and thankfully I arranged for her to see a good medical provider in Sarnia, Ontario where they now live. Her provider has her on a low dose of antidepressant medicine, and it seems to be helping. We can increase the dose until mum finds more consistent relief. The medicine also helps with her anxiety.

While the depression is constantly present, the anxiety comes in waves and can be quite challenging to manage. Her provider has also started her on medicine for agitation. The agitation and anxiety often lead to bouts of crying, anger, frustration, and sadness. These episodes are very challenging to manage and all the medicine in the world won’t resolve those moments. I have learned that the best remedy is to have mum come sit with me on the chesterfield and to put my arm around her and hug her.

One episode recently saw the two of us sitting together for over 30 minutes as she sobbed, and I sat there and hugged her. That’s often what she longs for…attention and demonstrations of love. Hugs are often the best and most effective “medicine”.

Compounding these challenges is my dad’s stunted emotional capacity.

Dad was away much of the time during my childhood. He was a Royal Canadian Navy pilot and often traveled the world on “maneuvers” and would be gone for 3-4 months at a time. Even when he was home he was never very demonstrative with affection to my brother and me. I never witnessed him hugging mum either.

He is 93 years old now and I love him dearly, but he has stunted emotional growth and at this time when mum needs that emotional attachment more than ever, dad has simply “checked out” …AWOL.

I never knew how much this, and other early life experiences impacted my stay-at-home mum until these past few years. It seems her dementia has brought to the surface many old gripes and issues that have been buried deep for decades.

One of her gripes is that dad was gone a lot, never called her when he was away, which translates into “he doesn’t love me” (after 69 years of marriage now). At least, that is how she remembers this period of her life now.

There’s no magic pill to deal with these and other emotions and with the progressing dementia, it just festers until it explodes like a volcano. Usually we experience 2-3 “blow ups” weekly and I must say that her current medicines have helped but I am hopeful for tighter management and control of mum’s emotional rollercoaster.

My older brother lives with my parents as a companion. He has no medical training, but the fact he can be on-site is a huge benefit.

My wife and I usually give him relief by coming to stay for up to a week so he can take some breaks. We bought a house across the bridge in Port Huron, so we are only 15 minutes away.

We also have a female Community Health Service provider coming in 3 mornings per week to help with showers and other hygiene needs. All of this is currently working, and we feel mum is getting good care, BUT as her dementia progresses we realize that a Long-Term Care Facility is likely in her immediate future, probably within 6-12 months. Then we’ll have to figure out how best to help my dad who is also in a slow cognitive decline.

Mum’s brain fog is getting thicker making it more challenging for her to find anything familiar to anchor to. More than half the time she does not remember who I am or who my brother is and at times does not know who dad is. She has lost all memory of her grandchildren, nieces, and nephews. She has sketchy memories of friends but has mostly forgotten them as well. She has distant memories that cause her great longing yet cannot be fulfilled. 

In closing, it is interesting how life works out.

A year-and-a-half ago my wife and I were making plans to move to the Caribbean. I had retired from clinical medicine practice, and we had sold our 5.4-acre farm in Oregon and plans were afoot for the move.

Then it became clear to us that mum’s cognitive abilities were declining at a fast rate and we needed to position ourselves near my parents or better still, position them near us. Then mum fell and broke her hip 6 months ago in Montreal and the cognitive decline accelerated significantly.

My brother needed a place to live and the next thing we knew we had decided on Sarnia and had an apartment rented and some community health services lined up, and here we are today with a completely different focus on how we will spend our retirement.

While Canada has healthcare system challenges as I witnessed when advocating for mum in Montreal after she broke her hip this past summer, I am thankful they are NOT in the states where the “healthcare system” thrives on bankrupting people who cannot afford care.

This is occurring in epidemic proportions in the U.S. but that, my friends, is a theme for a future blog post.

Peace,

Jim Ferguson