A Slow Decline

The Golden Years

Ah, how wonderful to slip gently into retirement, with nothing but good health and time to kill!

For many, that could not be further from the truth. No savings, poor health, early onset dementia, physical limitations or worse, are the hallmarks of an aging population. Rather than dancing into the twilight, many stumble, crawl or just fade away.

I have had many debates on whether it is worse for an aging parent to be diagnosed with Dementia/Alzheimer’s, or to be mentally sharp, but unable to have the physical ability to look after themselves.

My mother was in the latter group. A brain tumour in her early 30s, caused life altering changes to her physical being. A broken back in her 20s while healed, years later came back to haunt her. Debilitating arthritis limited her ability to even open her hands near the end. She spent the last several years of her life confined to a wheelchair, unable to adjust her glasses, let alone shift positions in her wheelchair. She was completely at the mercy of the nursing staff – and privately praying to die.

Her mind was a sharp as a tack until near the very end. Unable to participate in the most basic of tasks – nursing home bingo, eating, changing the tv channel, scratching an itch – even answering the telephone became impossible.

My former In-Laws were in the other category. Two of the kindest, most wonderful people you could meet, they developed Alzheimer’s within a short time of each other. Having led an active and vibrant life until their mid to late 80s, they no longer knew those closest to them, including their children. Yet they were physically capable of doing many of the things my mother could not.

Mom’s situation was very difficult on her emotionally and intellectually. It was heart wrenching to see her so frustrated. My in-laws were seemingly happy in their own world, confined to happy memories of the past, but unfamiliar with the present – making it exceedingly difficult on their children to cope with parents they loved deeply – but unable to bring into the land of the present. Lost souls. Yet too healthy to pass, leaving a trail of despair and sometimes hurtful words, littered among their loved ones.

The Great Debate

Why do we insist on keeping our loved ones alive to endure a life they have no desire to be part of? If our pet is old and in discomfort, we ask the vet “is he in pain? I don’t want him to suffer. As much as I love him, we need to put him down and out of pain”. We can’t ask an animal if they want to live. We take that difficult decision upon ourselves to do the right thing.  However, we can for our loved ones. Why is it so difficult to let them go, if that is their wish, or if they have no quality of life?

Are we wanting to keep them alive for their sake, or ours? There are many debates for and against euthanasia. Valid points on both sides of the argument. What I believe may not be what you believe.

On visiting mom at the nursing home over the years, it was obvious that I was the exception, not the rule. Some residents seldom had visitors, if at all. They were sad, lonely, despondent. Day after day, sitting in a wheelchair, watching the clock tick their life away in the slowest, most excruciating way. No visitors. No one to advocate for them. No one to help make decisions for their care. No one to converse with them and keep their mind sharp – and help make the time pass – creating memories for them to enjoy for the next few days. Slowly but surely, they slip into a world known only to them.

The nurses were wonderful in my mother’s home. They made her feel loved and special. But there were times that I had to step in to ask questions. Several years before her death, my sister Kim and I noticed that she was constantly drowsy- at one point so much so, that she was unable to even lift her head. I had to cup her chin to get her to look at me. We questioned the nurse as to whether her meds had been changed. We were assured they had not.

The problem persisted. She lost significant weight. Increasingly concerned, one evening soon after, Kim and I made a surprise visit after dinner. Mom was lying in bed in the fetal position, unable to communicate. Thinking we were watching her starve to death in front of us, we confronted the nurse on duty. She said “your mom is old and is dying”. Logic told us that this had happened much too suddenly. We wanted answers and we wanted them NOW!

The Importance of Advocating

Told we could not talk to the Dr unless we saw him while he was on rounds – several days from then – we asked to talk to the head nurse. To my good fortune, I had coached this kind woman’s son in hockey. She intervened and agreed to set up a meeting with the Dr the next day, to answer our questions. The nurse that had told us she was dying was asked to attend as well.

It was soon established that her meds had in fact been changed 2-3 weeks earlier. They had an adverse effect with the cocktail she had already been given. It made her drowsy to the point that she could not stay awake to eat, and therefore lost so much weight. She was too weak to eat – a vicious circle.

The Dr immediately changed her meds. In a very few days, she was able to communicate again, regained her appetite and was soon back to normal. She lived another 7 years.

Knowing how difficult those last 7 years were for her, I question sometimes whether I should have just let her pass – she was likely days away. But I could not do that, knowing that she was literally starving to death. She had to go on her own terms.

My point is, that most nurses are wonderful. Most are there for the right reasons. We are all human and make mistakes. But if there is no one to advocate for the frailest among us, many die without explanation – simply because they are “old”. It is after all much easier to medicate and ignore, if there is no one to monitor subtle changes.

For a nurse in that environment, these are subtle changes. So gradual and so common that it is easy to overlook. Without regular visits from loved ones, there is no one to notice and to ask questions or to advocate.

A Shrinking World

It was an exercise in the human condition to watch my mother’s world shrink as she aged. She was 68 when my father died and fairly vibrant. She loved to travel but hated to travel alone. Soon after dad died, she sold their home in Vienna and moved to a condo in Tillsonburg to be closer to Kim. It was a lovely condo, with lots of space, an elevator to her 2nd floor residence, private parking and best of all no outside maintenance.

A few short years later, after experiencing some health problems, she sold the condo and moved to an assisted living building in the same community. As she downsized, she sold or gave away many belongings that no longer fit. Shortly after, she had a brief bout with epilepsy, and lost her ability to drive. Her world was shrinking.

A year or so after that, she fell a couple of times. It became apparent she needed more assistance and she moved into the nursing home where she would spend the remainder of her life. Farmhouse, condo, loss of freedom through losing her license, assisted living and finally a one room domicile, housing all her most beloved belongings – TV, bed, books, a few pictures and clothes closet for her most cherished items.

In Mom’s last several years, she would often say to me “Kent, why is God not listening to me? I pray every night to slip peacefully into HIS arms. I want to die. I am tired. Why is HE not listening?” Heartbreaking words from someone that had a challenging life.

Our world gets smaller as we get older.

But our lives are no less significant! As a society we are quick to ignore the aged and most vulnerable and forget all that they did for us in our lives.

Live life and make memories. Our world shrinks all too quickly.

Don’t forget about those that have given so much in better days.

Be an advocate.