Caring for one aging parent or in-law for an extended number of years can be, and usually is, a tremendous physical and mental burden on the caretaker. But these days, when more and more of us are living beyond our capability of taking care of ourselves, some caretakers find themselves caring for two, three, or even four elderly relatives. I, for instance, have been primarily responsible for my 89-year-old father’s care for the past eighteen months – and just when his health has stabilized these past few weeks, my mother-in-law is struggling with dementia issues that require my wife’s daily attention.
Jane Gross, author of A Bittersweet Season: Caring for Our Aging Parents – and Ourselves, has been there. Gross, with some help from her brother, was her mother’s caretaker for almost three years, from the time the siblings moved their mother from Florida back to New York so that she would be closer to them, until they finally buried her in 2003. Gross’s story is somewhat unusual in that her mother made the decision for herself when it was time to go. Effectively, with the understanding of her two children beforehand, she committed suicide by refusing to take in any more food and water. The important message of the book, however, is what happened between her move to New York and her death.
The first lesson Gross learned is that neither she, nor her mother, were at all prepared for what was ahead of them, starting with the role-reversal that required Jane Gross to become her mother’s mother. She also faced the question of how a family can get through the end-crisis of a parent without forever damaging the relationships of the siblings left behind? As Gross points out, the caretaker (usually female) can hardly be expected to endure the experience without building deep-seated resentment of the siblings whom her efforts allow to go on with the routines of their own lives.
Gross offers tips, and details, about dealing with all the forms and regulations of Medicare and Medicaid, two programs almost impossible to understand and deal with effectively without the help of third party advisers. The chapters dealing with these two Federal programs, and how to best use them to the patient’s advantage, are alone worth the price of A Bittersweet Season.
But perhaps the most unnerving chapter in the book is the one pertaining to “hospital and emergency room delirium” among the elderly population. For reasons that no one can really explain, approximately one-third of patients over the age of seventy will experience such hospital-induced delirium. This delays scheduled procedures and requires the extra attention of the hospital staff and patient families – adding significantly to the cost of the hospital stay.
Bad enough, but the real tragedy is that only 4 percent of these patients are back to normal at the time of their discharge, with another 18 percent fully recovered at six months from the date of discharge. It appears that many of those not recovered within six months will never fully do so because the early-stage dementia they entered the hospital with (of which most are blissfully unaware) has been “unmasked” and accelerated by their hospitalization. (This, I am convinced, explains my mother-in-law’s sudden and rapid descent into dementia, while my father recovered from the symptoms within 6 weeks of discharge.)
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| Author Jane Gross |
A Bittersweet Season is an important book for those who are already in the midst of taking care of a helpless parent – and for those who see themselves approaching that situation. I wish this book had been available two years ago, before I became totally immersed in my father’s healthcare and financial wellbeing. It would have helped prepare me for what was to come. On the other hand, even though I learned the hard way much of what Gross writes about, it is still comforting to be reminded that I am not alone; a rapidly growing army of us is going through the same thing.
Read this book – for the good of your parents, and yourself.
Rated at: 5.0
(Provided by Publisher for Review)
My mother's lung cancer was a terrible experience, but her mind was good. Her illness, however, accelerated my father's dementia. He simply couldn't deal with her illness and eventual loss, it was too much for his already fragile condition. He could no longer pretend that things were normal.
ReplyDeleteHis hospital stays for other conditions also worsened his dementia. They often gave drugs that produce dementia-like effects in the elderly--which are devastating for those who are already dealing with dementia.
I read several books on AD during the 6 years of caring for my parents, some more helpful than others. My sympathies are with you and your wife, Sam. It is a sad thing to lose a parent to dementia.
Jenclair, I am beginning to believe that demential and Alzheimer's is worse than having a fatal disease that ends relatively quickly (in terms of a year or two rather than as many as 10 or 15 with Alzheimer's). It is horrible to watch someone effectively die but still be breathing for so many helpless years...we need to figure this one out soon because all the boomers are going to break an already very fragile health system if we don't.
ReplyDeleteSounds like an important read for all of us baby boomers who are starting to take care of our elderly parents. BTW, I was a hospice volunteer and worked primarily with Alzheimer's patients. I can say without hesitation that there is nothing worse than Alzheimer's.
ReplyDeleteWhat you say about Alzheimer's, Kathleen, verifies my fears of the disease. Terry Pratchett, I think, has the right idea about the disease...take your own life while you still have your dignity in hand. Wait to long and become helpless and a burden on your family. What a horrible choice.
ReplyDeleteThis is really two stories in one; a personal account of a daughter and son and their relationship with their mother during her last years, and the other about navigating the minefield of health care for the elderly. It's an honest, personal view into the world which most of us will face with our elderly parent(s), spouse or other loved one. Ms. Gross gives a great deal of insight into both the emotional world as a caregiver and the tangled maze of health care that both caregiver and care receiver will undoubtedly experience. Full of practical advice, anyone who expects to find themselves in a position of caring for an elderly parent or loved one should read this book NOW. The information provided will undoubtedly better prepare you from making rash decisions in time of crisis.
ReplyDeleteWell said, Netherland. I am one of those in that position and found what she says to be very true. I didn't learn much new from the book because I've been dealing with this for several years already...but she made me feel better about my efforts and what we have experienced so far. Thankfully, my father's mind is still very sharp and he is very cooperative when I ask him to make a life change of some sort. But those just beginning this process should certainly get hold of this one or another book like it.
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