Chances
are if you are married to a person with ALS, you are a caregiver. More likely you are a woman, since ALS
affects more men than women.
Demographics is just one of the many predictors of whether you are a
caregiver or not. There are also
some deeply held values called attitudes that will hold impact on whether a
person is a caregiver or not. Attitudes
affect making the choice to be a caregiver or not.
Choosing
to provide care for a person with ALS (PALS) is a tough one to make. What we know about ALS and what kind of
care required informs us so. We
know now that ALS can be a debilitating, chronic illness, although it is
commonly thought to allow an average lifespan of 3-5 years. Many PALS live beyond 5 years – as much
as an estimated 25% of diagnosed persons, thanks to better management of the
illness with better knowledge of the disease process, better medical technology
and strengthening of community and home/social resources. We also know that the course of the
illness and the muscle groups affected are highly individualized. Because of this, it is hard to predict
with reasonable success, the pattern, extent and areas involved from person to
person, and therefore, renders pinpoint preparation tenuous.
All
these suggest that the caregiver will meet with real challenges – big, almost insurmountable
ones. But once the choice to be a
caregiver is made, one must arm the self with the knowledge, skills and
attitudes that will serve one well.
Following
these series is one of those ways.
We are reading Until I Say Good-bye by Susan Spencer-Wendel, a newly released memoir about Susan's journey with ALS. So far (we are 20% finished), Susan's journey with the disease seems to parallel our daughter's path.
ReplyDeleteHank and Ronaele
We finished the book and wrote a review on Amazon. Today on Easter Sunday, the book, "Until I Say Goodbye" is on the nonfiction best seller list for print and kindle. The author refers to ALS as the "Lou G mess". Isn't that the truth?
ReplyDeleteThanks for sharing this title. I will check if in public library. can you also put in here your amazon review? or maybe i shld just check it out on their site...
Deletethanks for being such patient and knowledge-seeking parents. this must make her journey, as well as yours, a bit easier - trying to understand the "mess". truly, it's a mess. our own journey was somehow made less messy abt 13 years ago. a fluke, but very welcome.
The review is simple:
ReplyDeleteFamily mysteries and human foibles develop into a thought-provoking narrative. Susan Spencer-Wendel and Bret Witter reveal intimate details of progressive, unpredictable deterioration of body function while the mind watches and fully comprehends. It’s ALS or the “ Lou G mess” taking over. Concurrently, caregivers , children, friends, and family creatively cope and serve; they try to imitate “normal” lifestyle with the person who bears the ALS diagnosis. Answers do not exist, only questions and the unknown. With ALS, everyone travels an unwelcome journey.