The Long Way Home tells a wife’s story of her husband’s life with Alzheimer’s disease and her experience of caregiving. This book helps to create awareness of the condition and could be very helpful to caregivers of persons living with the condition.
The book begins, unlike most books by entitling the very first chapter “The End”. The end, for Marian Ritchie the author, was the beginning of her understanding of Alzheimer’s disease which had as far as she could see, suddenly entered her husband’s life. They were on their way from Canada to spend the winter in Florida.
The holiday had been planned long in advance. She was not aware that her husband was unwell. That first night of their vacation when they stopped to overnight at a hotel, was to be a rude awakening. In the middle of the night she was awakened by her husband’s plaintive cry. He was asking in a very loud voice: “Where am I? What’s happening? Why am I so cold?”
The first chapter sets the tone for the remainder of the book as it describes the dramatic onset of the disease (or so it seems, in her husband Edwin’s case) and its subsequent effect on every aspect of their lives.
Marian notes that the trip to Florida marked the end of everything, as they had known it. It was the beginning of what was to be a new and uncertain path.
This book is not about general health issues or medicine. It is practically a step-by-step, day-to-day account of what transpired in Marian and Edwin’s life after he was diagnosed with Alzheimer’s.
For Marian the diagnosis was just a formality because after that first night on the way to Florida... there were many similar nights. She was tempted to abort the holiday and return to places familiar, but hoped in her heart that the long-planned vacation would make a difference.
That however was not to be as during the month of the vacation, Marian had a very good introduction to what it would be like to live with someone with Alzheimer’s disease. She says at the end of that first chapter, “How could I have known that faithful night on the way to Florida, that I was facing the end: the end of life as we had known it, the end of our happiness, the end of the road. Everything was different! Edwin had become someone else—a stranger to me”.
The onset of the disease in Edwin’s case, seemed rather sudden but as Marian states in Chapter 1, Page 28, “In retrospect I do believe Edwin was actually beginning to lose his sense of taste at that point. Perhaps the disease had actively started to affect that area of the brain which controls the taste buds”.
The book makes reference to the Sundown Syndrome which some patients with Alzheimer’s experience. It is a condition that manifests itself literally as the sun goes down. Some individuals with Alzheimer’s disease become increasingly agitated as the day progresses, “beginning in the afternoon and ending in the evening hours, after the sunset”. Marian outlines how agitated Edwin would become and how she minimised the problem by leaving on all the lights in the house.
The remainder of the book reports on how they lived out the winter in Florida, the drive back to Canada and life back in Canada. It would seem that almost everything that one can experience with a long-term case of Alzheimer’s was experienced by Marian in her care of Edwin in those few months.
Some of the things she speaks of include the change in Edwin’s behaviour from being the clean, meticulous person about his personal hygiene to the opposite. From being verbose and articulate, to being much less so, and to Edwin developing a shuffling posture and gait.
Edwin also began to hide things and search endlessly for things convinced that someone had stolen them. He was also dressing and undressing himself for no apparent reason.
Marian hints that Edwin, in the early days of the disease confessed to her that every time he dozed off, he would wake up totally disoriented, but when he saw her he would know that things were alright.
This book is very interesting because it gives us a glimpse of how complex a condition Alzheimer’s disease is. Having spent the winter in Florida on the way home, Edwin says to his wife “Now tell me exactly what are we going to be doing, once we get where we’re supposed to be going?” She explained that they were going home and then he asked, “What exactly do you mean by home?”
Although it took four days to drive from Florida to Canada, Edwin had lived in the house for 39 years; he appeared to have no conscious memory of the house and thought it was his “new home”.
Back in Canada, when she consulted their family physicians and specialists, she queried the sudden onset of Edwin’s Alzheimer’s disease. The doctor explained that it “only appeared to be sudden; a frequent occurrence in many Snowbirds” (ie older people who go south for winter).
Since the patient is uprooted from their familiar surroundings and it becomes harder for them to pretend, or put on an act. In Alzheimer’s disease the last thing to go is the social skills, so even though they are aware that something is terribly wrong, they are able to hide it sometimes for a very long time...” (Page 73). Having had this explanation from the physicians, Marian notes that on reflection, she could see many signs signalling the onset of the disease, but at the time had made excuses for Edwin.
The remainder of the book is a fairly detailed outline of their day-to-day life together and how as a caregiver she became completely exhausted with her care-giving responsibilities. She had been Edwin’s second wife, his first wife having died. The book does not say exactly how old Marian is at any point in time. One gets the feeling that she is quite a bit younger than Edwin, maybe as much as 14 years.
We note for example one doctor’s suggestion that maybe she should cut her losses with Edwin, divorce him and regain her life seeing that they had not spent too many years together at that point. At one of the consultations with one of the physician’s, she reports that the physician said, “You’re still young and attractive... I’d strongly recommend you walking away from this while you can.”
Edwin has one child, a son with whom it appears he does not have a close relationship but this relationship improves once the son learns of his father’s diagnosis and he becomes very helpful to Marian.
Another very helpful person in terms of support to Marian during Edwin’s illness is her good friend and neighbour, Alma. Alma is there for Marian from the time she returned from Florida, through the early part of Edwin’s illness, through the later years including the period of his institutionalisation. Though not stated directly, the time Edwin is institutionalised seems like seven years until his demise in the nursing home.
The book reads well. It is sad in part but has patches of humour. It is a book which tells it like it is. It is not a book for the faint-hearted. It does not ‘window dress’ the situation of Alzheimer’s disease in the late stage, when the patient, knows no one and cannot do for himself.
The book provides excellent information about the need to reach out for help, and that there are organisations which cater to the needs of persons with Alzheimer’s disease and their caregivers.
The book ends giving thanks to all Marian’s friends, nurses, caregivers and organisations that helped Marian over the years, from Edwin’s diagnosis until his death. It also adds a reminder to those who care for persons with Alzheimer’s disease, that it is a good idea to do some pre-planning for the demise of the loved one and not to leave it to the end when one might be overcome by emotion and the practical matters to which one would need to attend.
• Dr Joan M Rawlins is a health sociologist/gerontologist and board member, Alzheimer’s Association of Trinidad and Tobago.