My first novel, Requiem for the Status Quo, released in July of 2017, speaks of the brutal protracted loss of someone suffering from Alzheimer’s or other dementia. Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.
Once my father was diagnosed with Alzheimer’s disease, it took four years for him to leave me. I was devastated the moment he took his last breath on October 13th, 2007, but my heart was continuously ripped apart during the years leading up to that final breath.
48 months, 208 weeks, 1460 days, 35,040 hours, and 2,102,400 minutes of ongoing departures from my and his life.
The characters in my novel have a front row seat to their loved one’s measured departure from this earth. That departure might appear as more-than-a-senior-moment of forgetfulness; an inability to perform simple tasks; struggling to come up with the name of the spouse to whom a person has been married for half a century; or the complete change in personality from a loving spouse to an actual threat to the other spouse’s life.
Loss is a life event from which recovery has no prescribed length of time, but recovery does eventually occur. In time, we live a minute where we can truthfully acknowledge that during that brief snippet of time, we didn’t feel the pain and despair as deeply as before. When that happens, dear friends and readers, I encourage you to celebrate that moment because if you wait for the big events for which you might hold a celebration, you just might be waiting for a very long time.
Celebrate even the smallest of victories and joys that come your way. Doing so will guarantee you many more reasons to be grateful, to experience joy, and perhaps to even witness the life-giving feeling that hope can bring.
I wrote Requiem for the Status Quo to honor my father, other loved ones like him, and all those current caregivers who are just trying to mess up less today than they did yesterday.
Perfection isn’t possible, but when you’ve done your best, you’ve done your best.
I celebrate you.
Requiem is available where all books are sold, or readily ordered if not currently in stock. On Amazon, the eBook is $1.99 and the paperback, is less than $7.
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.
An excellent article on ambiguous loss suffered by those who have a loved one with Alzheimer’s or other dementia. This is a loss that occurs in many stages and is no less traumatic than what one experiences with an unexpected, unanticipated loss. Perhaps such a loss is even more devastating.
What are your thoughts on this matter?