Many of you have read the individual tales shared by Shadan7 and myself of our experiences care-giving for our respective mother-in-laws, each of whom were afflicted with Alzheimer's Disease and have since passed on.
Some of you are also aware of our decision to collaborate on a memoir drawn from our experiences, utilizing not only the bits and bytes of diaries but also the extended information available from personal journals, emails between family and friends, and incorporating information and notes from our beloved wives.
The long journey - first as primary care-giver for a family member, then the requisite recovery period needed in the aftermath of care-giving, and finally the process of assembling our story from diverse sources and coalescing them into a book to share with others - is now complete. We created a small company to serve as publisher, and the culmination of our efforts - quite literally, blood, sweat and tears - has resulted in the creation of Her Final Year: A Care-Giving Memoir. We invite you to take a look and share it with those you know who may find our experiences to be of use as they embark on similar experiences, or who may want to see if the trials and tribulations they'd encountered along similar journeys might echo in the retelling of ours.
For those interested in more information, please follow me below the fold...
On 9 March 2011, I posted this piece to let people know about our project. We had previously posted sporadically over the years , from approximately 2004 until early 2008, letting folks know how our respective mother-in-laws were doing and sharing some of the other related news from the process. In the year and a half following their passing (Georgia in December of 2007 and Martha Sr. in February of 2008), Shadan7 and I also shared a few pieces with the community about the care-giver recovery process. Throughout all that time, we noted many other Kossacks were also engaged in (or had been engaged in, or were about to engage in) similar care-giving journeys. In fact, several groups exist that have touched upon or deal directly with Alzheimer's Disease, senile dementia and care-giving. Two, in particular, jumped out at me as I wrote this: KosAbility, of course, and Surviving Alzheimer's. 1 (For those who are currently in or about to embark upon a care-giving role, I'd like to specifically point out KosAbility: Dementia, Caregiving, Personhood & Politics by hesterfor some good information.)
Through all this time, both Shadan7 and I heard many people commenting about how rare it was to find a male in this type of care-giver role. While we may have been among a minority at the time, we certainly weren't the first male care-givers for family members, and we certainly won't be the last. What we went through, however, is something that we believe many others may benefit from.
From the website home page,
Her Final Year is a different kind of memoir. It’s not just a “looking back” at the experience of being a care-provider for a loved one with dementia. Rather, it is an unfolding of what happens during the care-giving experience, as it happens.
For us, that was the best way to share what we experienced. We aren't "professional" care-givers; we had no official training. There wasn't a class or seminar that prepared us for what to expect – so, don't expect a step-by-step guide to the process. Don't expect a "how-to" guide. Every case, every family, every victim is different. The stresses and strains faced will be different. Some elements may appear to be eerily similar, but there is no hard-and-fast blueprint for the progression of the disease or the impact that care-giving for your loved one will have. So, we did what we felt most useful: we shared ourselves and the direct almost day-to-day happenings with the reader.
Much of the material in the book is intensely personal, even embarrassing. We have decided to share it ‘warts and all’ because that is the reality of being a long-term care-provider for someone with dementia. You will make mistakes. You will sometimes feel crushed by the isolation and stress. You will get into arguments with family and friends, and even say or do things that you later regret. You will occasionally resent, or even hate, the person for whom you are caring. We did. It’s completely normal, but seeing how others experience these things can be very helpful.
We are hoping that others find our experiences helpful, informative and supportive as they make their own way along the care-giving path.
We ask that you share this information with anyone who might find it useful, and let us know if you pick up a copy – we're very interested in your thoughts and feedback.
And we are all very grateful to the community as a whole for its existence and the role that it played in supporting us during our care-giving and recovery.
Thank you, all.
For more information:
1 There are other groups where folks may also find related information -
- The Grieving Room is perhaps the best well known, and there is
- Senile Dementia,
- Aging In Community and
- Nursing Homes.
Note: This is not intended to be a complete list, nor to indicate any particular preference. Please check them out, and participate or share according to your own need. If there's others that I've missed, please add them in comments.