Alzheimer's

At home with ALZHEIMER’S

It is possible most know of dementia, that crippling disease of the brain; the torturous forgetfulness, that look of being lost, the ever shuffling feet and unsteady gait. Clothes put in the wrong place; food placed in cupboards instead of the freezer or fridge. It must be a nightmare for those who are afflicted with the traumatic disease, or is it?

I have worked in Long Term Care Facilities and have worked with dementia residents for many years. Unfortunately, my wife has been tormented with the disease Alzheimer’s. It is one of a group of Dementias. There are seven types of Dementia; Alzheimer’s with Lewy body, Vascular Dementia, Parkinson’s Dementia, Creutzfeldt-Jakob Disease (Sometimes Called Mad Cow Disease), Frontotemporal Dementia (Pick’s Disease) and Fatal Familial Insomnia. Few other diseases become a factor but are treatable if diagnosed early.

What perhaps is not understood is the day to day living with someone who has dementia. I have elected to keep my wife home for the duration of her journey. Having worked with Dementia residents in a Long Term care Facility and witnessed some poor treatment afforded them, I had no compunction in keeping my wife home until the end. She is a retired Registered Nurse who also worked with dementia. Many years ago, we had promised one another that we would look after the one in decline instead of a nursing home or Long Term Care Facility.

My wife and I understood what to expect along her journey. But this was different. Care was not an eight-hour shift with three weeks paid holiday and stats off. Care for my wife would consist of twenty-four hours, seven days a week and year-round.

In taking on the role of primary caregiver, I had purposely denied any stressor that could and did befall me. I knew what I was doing, been doing it for years. Besides, she was my wife, and she knew about the disease. Life would be easy, simple, a piece of cake. Then that ugly traumatic word slipped into my peaceful sanguine mind; denial. The smooth road my wife had journeyed suddenly became bumpier. Life as I knew it would never be the same.

My wife wears a transmitter on her wrist. Placed there by Project Lifesaver of Saskatoon, it is there in case she happens to wander off. The members of Project Lifesaver can track her down within 30 minutes of their call-out. To prevent my wife from leaving home without my knowledge, I have placed alarms on every door. I have gone so far as to place an alarm on the balcony door. We are in a coach home and have thirteen stairs to the front door. To avoid the risk of my wife falling down the stairs, I have placed a large metal baby gate in front of them.

Handrails have been installed on each side of the stairs to help with my wife’s growing instability. LED lights on both sides of the stairs have been placed to see better the stairs’ centre. An electrician installed brighter lights throughout our coach home to aid sight. He also installed a kill switch for the stove and a lock for the fridge. It now is safe for my wife to wander at night and not come to harm. Or so I thought. I gave no credence to the wine fridge, something she visits often. I’ll have to lock that as well.

Wandering is something she does, and often. Her wandering, of course, keeps me awake. And lack of sleep sometimes makes tempers short. However, when she has a nighttime bowel movement, in bed or going to the bathroom, does my work begin. Although she is wearing incontinent underwear, they are no match for uncontrolled loose Bowles. I find feces in her bed, on the floor and on her legs. However, cleaning up is not much of a chore, for I have done that work for many years. It is a matter of ensuring he has finished emptying her bowels before putting her in the tub, showering her legs, then bathing her. The next stage is removing all soiled clothing and bedsheets and starting a load of washing. This, of course, often happens three in the morning.

As my wife progresses along her journey, bowel discharges are becoming more frequent. Unfortunately, it now occurs during the day. My wife, of course, wears incontinent underwear. She will change her underwear up to four times a day due to bladder incontinence because she sits on the toilet incorrectly. Frequently this will lead to urine spilling onto her clothes. This is becoming a daily occurrence, resulting in more laundry. Most people have one, perhaps two laundry days a week. I have one every day.

Disposal of my wife’s incontinent underwear was a simple matter. A small garbage can in the bathroom sufficed for a full day. But recently she has been leaving them in the toilet. They are, of course, designed to soak up water. Soaking up the toilet water makes the incontinent underwear both heavy and challenging. However, of late, she has been putting her pyjama bottoms in the toilet as well. It has become one more unexpected daily chore.

To keep washcloths for my wife’s pericare separate, I purchased snowy white washcloths. However, after washing them for the first time, they turned a dirty blue. I quickly learned mixing colours with whites in the washing machine was not a good idea. I also discovered my wife uses the laundry basket as a garbage can for her dirty incontinence products. It took just once to find remnants of underwear in the dryer. It looked like snow had fallen on all the clothes. I now check every single article that enters the washing machine and dryer. The adage, once bitten, twice shy, could never have been more real.

The discovery of feces laden underwear in various places in our home was a shock. I am a great believer in independence, and I allow my wife as much autonomy as I possibly could. I believe that the freedom to choose makes life for my wife and others more normal. Normality is what we strive to achieve as the mind loses the ability to remember. Therefore, she managed her bathroom visits. That came to a sudden stop when she toileted herself on the floor of the restroom. Had it been urine, no problems. But it wasn’t. It was that dreaded number two, and it stretched from the door to the toilet. It covered not only the toilet and her but also the walls and towels.

Fortunately, our step-in tub has a hand shower, and so after she was finished pooping, and yes, there was more, into the tub she went. I showered her bottom and legs to clean her of feces. Then I filled the tub. She had a relaxing bath while I set about cleaning up the mess. It meant another trip to the washing machine. Had that been a singular occurrence, all would have been fine. Unfortunately, it was the start of many such incidences.

Of course, loss of bladder control is also a nuisance for her, as often she will sit on the edge of the toilet seat. Only a small portion of her urine would fall into the basin, and the remainder would flood the bathroom floor. It isn’t easy to see anything at two in the morning, especially when working under a quarter light. (Dementia people dislike bright light). Inevitably I would find urine on the floor as I splashed through it. I needed to change my wife’s pajama’s and my socks and pants. Off to the washing machine, again.

The toilet and laundry room quickly became my focal point of the day. Life is becoming more challenging by the minute. Even though I promised I would never put her in a nursing home, difficult days with toileting a disaster, it sometimes draws to my mind perhaps my wife would be better off in a Long Term Care Facility. I concluded it would be better for me, not her. It was times like these I would shake my head, remember our promise to one another, and carry on with a renewed spirit.

I always allowed my wife to select the clothing she would wear for the day. It is something people do every day. Individuals with dementia should be no different. However, along the journey, she progressed to the point she could not remember what clothes to wear. I now have become her clothier, providing, of course, I can find any of her clothing. She finds great satisfaction in rearranging clothes in her drawers. To find a pair of jeans first thing in the morning can be a significant source of frustration.

The closet has become a playground for my wife. She owns several sweaters, pants/jeans that are required to hang in the closet. We have a walk-in closet, a mine and her closet. My clothes stay neatly on their hangers and are neatly presented. One quiet afternoon my wife was in the bedroom piddling. The need to touch and rearrange had developed over time. Her drawers in the bedroom had been her first target. However, it wasn’t until she saw me hang her clothes that she found that second source of important material to play with.

While in the kitchen washing dishes and generally cleaning up, I suddenly realized I hadn’t heard a sound from her. The monitor in the bedroom remained silent. It became the harbinger of things going wrong. She had managed to steal her way into the closet and purposefully removed every vestige of clothing from their hangers. She dumped them in a pile in the middle of the closet. So I had a mountain of clothes to re-hang. As usual, I got the culprit to help re-hanging all the clothes. Within the hour, we were done. I felt satisfied she would not do that again. That was two months ago. Her clothes have taken up permanent residency on the floor. Our cat loves it.

One morning, my wife came to the dining table wearing two sweaters. I suggested she may get quite warm. She didn’t realize she had dressed that way. Quickly she removed the extra sweater. That, unfortunately, was the start of my wife layering her clothes. It now is typical for her to wear many tops and sweaters at the same time. What has changed is her temperament.

Once peaceable and open to my redirection, she has since become easily annoyed and showing those tell-tale signs of aggression; fierce-looking eyes, gritted teeth, hands that turn into fists, and slamming of the bedroom door as she attempts to escape confrontation. The level of aggression is increasing the farther she travels along her journey, our journey.

And yet, through the adversities of memory loss and anger, we have never forgotten to laugh. Even as my wife is eating less and her clothes no longer fit properly, we find laughter calling her names like; skinny, bones, good looking and other choice words. It makes her feel good to laugh at herself and me whenever I do something wrong.

Learning to be the primary caregiver twenty-four hours a day, seven days a week is a struggle. However, there is always time for reflection on how things were in the past. Back then, times were fancy-free and footloose. We always seemed to have money in our pockets, more than enough to put gas in the tank and a pack of smokes in our pocket. The mountains or Saskatchewan lakes were well within our means, and we enjoyed what life had to offer.

Upon retirement, we had planned to travel to different countries using low-cost special excursions. There would often be unsold holidays to Mexico or the Caribbean. We would get perhaps a twenty-four-hour warning to be at the airport to catch our flight to wherever the plane was heading. It didn’t matter where we would go. It was the surprise, something we thought would be fun in our waning years. We purchased ten-year passports and readied two small suitcases stocked with clothing and toiletries in anticipation of our future travels. Then the dreaded disease Alzheimer’s struck.

Four months later, my wife was in the hospital with a severe case of Urinary Tract Infection. Assessed for Long Term Care, her healthcare team determined that she was level four care, someone who needed twenty-four-hour care and supervision.

Many years prior, we had discussed the possibility of either of us being admitted to a nursing home. It was a joint decision. We would not allow that to happen to either of us. I informed my wife’s healthcare team that she would be coming home to complete her journey, no matter how long that would take. With financial support from Saskatchewan health, I keep my wife at home and bring in qualified help to assist her and myself.

In all this strife and misery, CPAS (Client, Patient, Access Services) and Village Rose (home health care) have come through to support both of us. There is no doubt without them; the gloomy picture my wife and I would be facing would be more bleak and very difficult.

Asked about the love I had for my wife, I was proud to say that my love for her grows more deeply day by day. It was a strange question, for we have been married for forty-six years, and nothing could tear us apart. We are married at the hip. Her life is my life.

After the initial diagnosis, the average life span of a person living with Alzheimer’s is usually five to seven short years. However, those years seem more than sufficient to prepare for death and the grieving that undeniably follows. Yet, I have found myself sobbing, watching my wife struggle for words that are not there, or shuffling along the hallway with feet that would, in years past, swallow me in her swift pace.

I have concluded my wife is happy with her dementia, although outward appearances and actions may appear contradictory. At no time has she been upset with her limited abilities, although she did have several bouts of crying in the early stages, and then it was due to her not understanding her sadness or why she was sad.

I am not religious; therefore, I cannot be hypocritical and send someone on their final step with a prayer. And yet, I believe it is paramount to help those transitioning from life to death with a few comforting words. Therefore I turned to our indigenous peoples and their spirits. Moments before my wife leaves me, I shall whisper in her ear, “go ahead, my love, the Spirits of the Great White North are waiting for you.”

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Peter Bowden worked in a thirty-two-bed dementia walking unit for four years.

In 2015 he blew the whistle on abuse of residents that was occurring where he was employed.

He went on to publish a book on the abuse and the subsequent investigation that followed. It showed collusion between the office of the premier, the Department of health and his employer in an attempt to cover up the allegation.

ABUSE OF THE ELDERLY –and the political connection, (Amazon Kindle) ISBN-10 : 1544747101, ISBN-13 : 978-1544747101

Velma Bowden is a retired Geriatric Registered Nurse. She worked with countless Dementia residents over her 35-year career and is the focus of the preceding Biography.