Grief Loss and Bereavement
Sustenance for the family caregiver
In a recent interview with Oprah Winfrey, New York Times columnist and author, David Brooks, eloquently responded to Oprah’s statement where she said, “I hear that authors write the books they need to read.” Mr. Brooks’ response:
We writers are beggars who tell other beggars where we found bread.
He further explained that statement by saying:
We found it here, we want to share it with you.
That is what the more than 200 AlzAuthors have in common. Each author may describe their quest or mission somewhat differently, but no doubt many of them would agree that the impetus to write about their personal experiences was a call to action they could not ignore.
As a member of the AlzAuthors community, I personally feel that the more mainstream the conversation surrounding the Alzheimer’s and dementia experience becomes, the more the AlzAuthors’ vision will be realized:
Our vision is to lift the silence and stigma of Alzheimer’s and other dementias.
May you find sustenance within the AlzAuthors community.
My extraordinary success as an author
A lot of time and effort go into writing a book. Regardless of the genre, much needs to take place prior to that work of art arriving in the public’s eye to be consumed. The writing process is grueling: outlining; picking character names – developing those characters to become who you need them to be, killing off characters that don’t add anything to the storyline or content; researching anything and everything having to do with absolutely every topic you decided to include within the front and back covers of your project; pounding out page after page of your shitty first draft – because every first draft is shitty; editing, cutting and pasting, throwing out your manuscript and then retrieving it from the garbage because you can’t bear to give up on something that initially seemed to mean so much to you.
But the preparation for my novel began years before I knew I would even be writing it.
My life changed forever when my father was diagnosed with Alzheimer’s disease. Up until that point, AD was something that happened to other people. Just like everyone else, I was afraid of it – had friends whose parents or other loved ones were diagnosed with it – but just like everyone else, I really and truly did not think it could get close enough to harm me, but it did. You see, I had hoped my professional work in the assisted living and memory care field would be as close as I would ever get to the dreaded disease that is always fatal, but I was wrong.
As my author bio states: Having previously worked in memory care, she was not new to the disease, nor was her family immune.
Years after my father’s death I chose to prolong my involvement with all things dementia, venturing forth into one of the most competitive fields around because it appears that everyone … everyone … has a story to tell, and many have chosen to tell it. With well over 8 million books currently available on Amazon and just a fraction of those touted as Best Sellers, a person would be crazy to even think about adding to those numbers!
Or that person would be brave.
Bravery sounded better than crazy to me, knowing that putting myself out there would leave me vulnerable, exposed before every critic who, although a reader and not an author, would not shy away from tearing apart my completed labor of love. But I wanted something positive to result from my father’s and my family’s Alzheimer’s experience so rather than shying away from risking failure, you know, doing nothing that might prove disheartening, I chose to lay my heart out on the line.
And I am a success.
I am a success, not because Requiem for the status quo made it to Oprah’s book club and/or the New York Times’ Annual Top Books list, and certainly not because of any wealth publishing a novel has brought me…relatively few authors make money in this field. I am a success because I let my love for my father be translated into a novel, creatively based on my own family’s experience, so that others – whether a million in number or just a thousand – could find some encouragement and hope through the ashes of my family’s grief.
And guess what, others read my story and told me time and again how much it resonated with them; how my writing seemed to mirror what they too went through, or were currently going through. Readers thanked me for my story … they thanked me! If that isn’t success, then I don’t know what is.
All I can say is, “You’re very welcome.”
Grief: The First Times Without.
Grief: The First Times Without.
In the article linked above, a fellow blogger provides an exquisite sampling of the types of circumstances some life journeyers may be going through resultant from losses that have placed them in a difficult transitionary time in their lives.
Chances are all of us will experience more than one of the transitions that Don frames in this article that so delicately – and movingly – touches on the topic of grief and loss that occur when “first” occasions without someone come around on the calendar.
May all of you receive the comfort you need during the “first” times on your grief journey.
The Journey of Grief: A Personal Snapshot
The Journey of Grief: A Personal Snapshot.
Grief – when one experiences a loss, there is no way around this emotion. It has no clearly defined end. It manifests itself differently for every individual. The writer of the above article shares the personal side of how this emotion presented itself in his own life in this continuation of his series of articles on grief.
This “personal snapshot” is a follow up to his first article in the series that addressed an event in ones life for which everyone’s grieving experience takes on a slightly different character. I hope you’ll read the article attached above, and his previous article – also available on his website.
The Experience of Loss and Grief.
Divorce As An Experience of Loss and Grief.
Sit down some day and take the time to write down as many experiences of loss that you can recall during your lifetime. Quite naturally, you will list times of grief resultant from a death in the family, grave illness, and the like. But there are other losses that we experience that can have just as much of an impact on our lives. The end of a marriage is one of those.
The article linked above does a great job at shining the spotlight on the loss that is experienced when a marriage ends through divorce. Even if both parties to the marriage come to a mutual decision on the matter, the parties oftentimes enter a period of mourning. Understandably they feel a certain sense of relief at the conclusion of the divorce process, but a feeling of loss becomes a very unexpected part of their lives going forward.
My thanks to this Blogger for giving couples permission to acknowledge the loss they are feeling at the dissolution of their marriage – even one for which they were both on board.
Ambiguous loss – the experience of caregiver spouses
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
Life’s final deadline.
In the past year, I have lost two coworkers to cancer. Just recently another coworker left his job due to – you guessed it, cancer – so he could spend what remaining time he has with his family. These wonderful people were given a death sentence. They had a head’s up as to when their life’s end/deadline would occur.
Because I care for these people, I’ve been grieving and pondering what their remaining days and weeks were like.
What does one do when they leave their doctor’s office after receiving a fatal prognosis and a guesstimate of how much time remains for them? Of course the initial news floors them and their emotions run wild with rawness, sadness, fear, and maybe even extreme anger. But then they get home, hopefully surrounded by at least one loved one, and…then what?
I know much discussion will ensue of an emotional, practical, and perhaps even legal manner. That goes without saying.
But do you then get out your bucket list and see if any remaining items can be checked off before time runs out?
Or how about a game of Scrabble? Does that seem too mundane and unimportant in light of life’s waning hours?
I’m not trying to be cavalier about this matter and I hope I’m not coming off as insensitive. I’m really troubled by even thinking about having such a prognosis and filling out my remaining days in a valuable way. And again, I’m thinking about my coworkers’ final days and wondering what those days were like for these stellar people. How did they manage?
Personally, I have a very realistic outlook on death – it’s certainly inevitable. I’ve accepted the fact that no one can escape it. And of course I have my preferences on the manner in which I die. For example, if I’m fortunate, I’ll follow in my mother’s footsteps when back on September 24th, 1994, she went to bed none the worse for wear, and never woke up again. Since no autopsy was done, we don’t know the actual cause of death but on this my family can agree – if we have the choice, we’d like to be taken by surprise – in as pain free a manner as possible. If I’ve left no statements unsaid, no deeds left undone, I’d rather not have a calendar in front of me crossing out each remaining day in my life.
How would I fill my days if, like my coworkers, I’m given a death sentence of a finite period of time?
I don’t have the answer, so if by chance you’ve been part of life’s final deadline with a loved one or close friend, what proved valuable to you and your loved one? How did you manage not to think of the remaining time every minute of every day?
In short – how did you survive the process?
A Time To Grieve | Alzheimer’s Reading Room
A Time To Grieve | Alzheimer\’s Reading Room.
The attached article provides a wonderful starting point for those caregivers who know that the outcome of their loved one’s Alzheimer’s or other dementia is a certainty.
Preparation is key. We can never be fully prepared for the time when our loved one dies, but we would be wise to make some sort of plan while we’re months away from grief’s impact. I’m not talking about the legal planning that, hopefully, is already in place. I’m referring to the day-of-impact planning that will carry you through one of the most difficult times of your caregiving journey.
DEATH – not everyone is comfortable discussing this topic even though it is as certain as, well, death and taxes. Death to many is a taboo subject and dealing with its aftermath, a foreign concept. It stands to reason, therefore, that during your time of grief, some of your acquaintances may blunder their way through trying to help you. Use discernment in setting up your Emotional Support Team and Practical Support Team.
EMOTIONAL SUPPORT TEAM. You know the acquaintances upon which you’ve always been able to rely, so place them at the top of your plan’s contact list. These are people with whom you’ve shared all the personal intricacies of your life; they understand how you tick, and can oftentimes predict what you’ll need before you even know you need it.
PRACTICAL SUPPORT TEAM. These acquaintances fill in the gaps that will no doubt be made as you’re dealing with the “business” of dying. Some examples of tasks they may perform: picking up the grandkids from school; providing light housekeeping; picking up the dry cleaning; running to the post office for you. The list is endless but chances are you have a few friends who would relish the opportunity to help out in this way. They may not be strong in providing emotional support but excel at the “doing” type of support.
Grief is personal and there’s no set period of time that it’s supposed to last. Just as every person in this world is different from everyone else, grief is intimately personal for those going through it. If outside help in the form of grief support groups is available, look into churches, hospitals, hospice centers and the like who offer such groups. Have their number handy and don’t hesitate to call them. For the most part, you know what might help you most, but if you find yourself floundering and unable to function, do yourself a favor and accept the support that your dedicated friends offer. There’s no shame in doing so. Who knows, you may be providing that same support to them some day. What a wonderful way to return the favor.
Living: the ultimate team sport 