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Hello, all. I''m no longer a caregiver (for my first husband, who had multiple sclerosis, first no so bad, then quite advanced), but I still stay in touch -- with my memories, the Well Spouse Association (national organization for people whose spouses have chronic illnesses or disabilities), and via my writing (published...). My two memoirs (and some poetry books, too...) have been helpful to people who are in the situation I was in. -- The first is Dirty Details: The Days and Nights of a Well Spouse (Temple University Press, PA) -- about the pre-nursing-home days (advanced multiple sclerosis, four young kids, me chief caregiver but the kids giving up plenty). The second, the sequel to Dirty Details -- just out! available at http://www.unlimitedpublishing.com/cohen (That's me, Cohen...) -- is called Still the End [b/c the end really dragged on]: Memoir of a Nursing Home Wife.
No more "nights, lifting and toilet" (You know what those three things are, don't you?...) but still, after nursing home placement, there were trials and tribs. For my then-husband, further progression of the disease, near-paralysis, feeding tube -- and increasing dementia resulting in verbal abuse (of me), also financial abuse. Since the dementia wasn't always obvious, it wasn't "official" so he was allowed full control of his money -- and he re-directed his disability and social security checks from our joint account to a special account which he set up just for him. The kids and I had no access to his money. (I hired a lawyer and did get "support".)
Etc. I was scared, and the new trials and tribs went on and on (for ten years; his Advance Directive specified ALL heroics). My life was rather hellish, but I also cultivated good things -- writing, sending my work out (and getting published), starting a new math career as a fulltime mathprof, thrift-shopping, and mothering our kids -- I insisted on "having a life"-- and eventually dating and finding new love. I was full of attitude! That's what the new book is about, attitude. And criticism of some of society's and the health care system's policies. These two books might be helpful to some of you. And I wish ALL of you the very best! -- Marion (Deutsche Cohen)