"The long goodbye" originated from the former first lady, Nancy Reagan, regarding her husband's long battle with Alzheimer's. Many caregivers and their families have since used this phrase when describing their journey with dementia because the roadmap forward is very vague and unique to the individual travelers.
I write on this dedicate topic not to minimizes its prognosis in any way, but in hopes of bringing some level of comfort and awareness to those who may find themselves engulfed by dementia's emotional rollercoaster. And my approach is twofold : (1) To share a piece of what I've witnessed throughout my own experiences. (2) To help others recognize the role grief and loss contributes in the long goodbye.
Having worked with dementia patients throughout my career in long-term care, as well as having witnessed a dear friend's life unfold with this illness, gave me a firsthand look into the different degrees of losses and grief that were present for caregivers and their families. And although its progression varied from person to person—depending on which type was diagnosed (the most common form being Alzheimer's), I'd not witnessed any loss more painful than the loss of normalcy in their interactive relationships.
For instance, impairment progression brings with it immense changes and challenges to one's personality such as confusion and bouts of agitation, which can become physically and emotionally taxing for everyone involved, in particular, the spouse. On the positive side: These relational changes usually happen over time, with many periods of normalcy in between.
However, due to the unpredictability of this illness, it's impossible to know what yours or your loved one's experiences will be like.
For me, unlike when I worked with patients in the latter stages of dementia, where they were severely impaired, and full-time care was required, I was involved right from the get-go with my friend's prognosis. For the first five years, there was hardly any change in our relationship. Furthermore, even when his memory did decline (because of our thirty-two-year history together), I was fortunate enough to be able to help him piece together positive events from his past, where he and I'd often found commonality and laughter.
During impairment progression, reverting to the past more so than living in the present is not an uncommon occurrence for your loved one, nor is it unusual for a significant other to want to keep them attached to the present—as such we are always adapting our communicative approach. And sharing memories through this communicative approach is one of the treasures in the long goodbye, for the reason that memories are the foundation of who we are; therefore, the positive ones need to be cherished as a precious gift.
Think about it: Who better to bring shared memories into the present for your loved one than you. Whether that's helping them navigate their own or whether you are the voice that carries the conversation for them, your memories will always be the love connection that binds.
Unfortunately, though, there will be other times when dementia—like a thief in the night—will rob valuable pieces of your loved one's past, leaving you grieving over the relationship that once was.
And while grief is a personal experience, and everyone will cope with it differently, at their own pace, it's important to understand that grief is very much a healthy and natural response to the many painful losses you will experience on this journey. Don't be afraid to permit yourself to grieve, because (all too often) grief gets misunderstood and overlooked, causing emotions to mask beneath the day-to-day challenges, which can become unhealthy for one's well-being.
Last but not least: Be kind to yourself. Don't try and make the journey alone. Lean on the people you trust as well as seek professional help when/where you need it. Also, reach out to others who have gone through similar experiences. No doubt your "long goodbye" is unique, but you will be surprised how much your stories will have in common.
I write on this dedicate topic not to minimizes its prognosis in any way, but in hopes of bringing some level of comfort and awareness to those who may find themselves engulfed by dementia's emotional rollercoaster. And my approach is twofold : (1) To share a piece of what I've witnessed throughout my own experiences. (2) To help others recognize the role grief and loss contributes in the long goodbye.
Having worked with dementia patients throughout my career in long-term care, as well as having witnessed a dear friend's life unfold with this illness, gave me a firsthand look into the different degrees of losses and grief that were present for caregivers and their families. And although its progression varied from person to person—depending on which type was diagnosed (the most common form being Alzheimer's), I'd not witnessed any loss more painful than the loss of normalcy in their interactive relationships.
For instance, impairment progression brings with it immense changes and challenges to one's personality such as confusion and bouts of agitation, which can become physically and emotionally taxing for everyone involved, in particular, the spouse. On the positive side: These relational changes usually happen over time, with many periods of normalcy in between.
However, due to the unpredictability of this illness, it's impossible to know what yours or your loved one's experiences will be like.
For me, unlike when I worked with patients in the latter stages of dementia, where they were severely impaired, and full-time care was required, I was involved right from the get-go with my friend's prognosis. For the first five years, there was hardly any change in our relationship. Furthermore, even when his memory did decline (because of our thirty-two-year history together), I was fortunate enough to be able to help him piece together positive events from his past, where he and I'd often found commonality and laughter.
During impairment progression, reverting to the past more so than living in the present is not an uncommon occurrence for your loved one, nor is it unusual for a significant other to want to keep them attached to the present—as such we are always adapting our communicative approach. And sharing memories through this communicative approach is one of the treasures in the long goodbye, for the reason that memories are the foundation of who we are; therefore, the positive ones need to be cherished as a precious gift.
Think about it: Who better to bring shared memories into the present for your loved one than you. Whether that's helping them navigate their own or whether you are the voice that carries the conversation for them, your memories will always be the love connection that binds.
Unfortunately, though, there will be other times when dementia—like a thief in the night—will rob valuable pieces of your loved one's past, leaving you grieving over the relationship that once was.
And while grief is a personal experience, and everyone will cope with it differently, at their own pace, it's important to understand that grief is very much a healthy and natural response to the many painful losses you will experience on this journey. Don't be afraid to permit yourself to grieve, because (all too often) grief gets misunderstood and overlooked, causing emotions to mask beneath the day-to-day challenges, which can become unhealthy for one's well-being.
Last but not least: Be kind to yourself. Don't try and make the journey alone. Lean on the people you trust as well as seek professional help when/where you need it. Also, reach out to others who have gone through similar experiences. No doubt your "long goodbye" is unique, but you will be surprised how much your stories will have in common.
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