Just dropping by.
I've been around for several years, first as a caregiver for my mother, under a different name. About halfway through my caregiving journey with Mom, which lasted about a decade, I began noticing several red flags with my husband. Now others in our family are seeing those alarms, and we're also dealing with my mother-in-law's physical and cognitive decline. My husband is following the same path as his mother. He's had some testing, and I've gained a great deal of information and insight by talking to his doctors. Some of their information has been helpful, while some has left me feeling like there's no help to be had.
We are in the "MCI, refuses further testing" camp. A CT scan with contrast that brought on a near-fatal anaphylactic reaction has sparked in him an intense fear of further tests or procedures of any kind. Fortunately, enough testing has been done to rule out organic causes such as thyroid disorder, B12 deficiency, and so on. He has confirmations of and is taking medication for other conditions such as atherosclerosis and type 2 diabetes, which can certainly contribute to dementia-causing conditions. There is a strong family history of behavioral dementias, as well.
There are days when he seems absolutely fine. This can last anywhere from a day to a few days before reverting to the behavioral and cognitive lapses. This back and forth rhythm follows no predictable pattern. I never know. My mom's initial finding was vascular dementia, which was much the same. My "measure twice, cut once" guy has turned into a "measure once, cut twice, measure again, cut two more times,and put it in crooked" guy. There are many occasions when I just don't tell him something I would have once gone to him for insight and guidance. It's taken a long time for me to come to terms with keeping things from my husband, but I've had to weigh that against the fact of his not being able either remember, let it go, or make a rational decision. I learned a long time ago to choose my pain. Fortunately, we took care of our wills, estate plan, POA, etc. a few years ago. I handle all finances and have taken on many household chores he used to do. A lot of things just don't get done.
After working full time, caring for the house, and setting aside time for self-care (I know...what's that??), I find my time limited, so I rarely post. My time on this site is spent mostly in reading. There are days when I want to just pack up and leave. But I keep on, knowing that I'm not the only one who has ever been in this boat. I get so very frustrated. Recently, after endless weeks of hearing about what someone used to say, I blew up. It was at dinner, and he made some off-the-wall comment about the meal after I'd spent all afternoon cooking from scratch. He said "So and so (a friend who died over 30 years ago) always said….." My response, blurted out before I could think, was, "I don't give a sh!t about what he used to say! He's dead!" I felt so guilty and beat myself up for days over that. He acted like it never happened. Even though he knows the past is the past and doesn't confuse it with the present, he brings up the past constantly and cites things that were said or done, as if he's still just as affected by them today as he was then. I can see this timeline blurring, however, and know there may come a time when the past will become his present. Most of what he recites from the past is not totally accurate and is sometimes mixed with other events.
I am in a position of leadership at my job; I often have difficult situations to deal with, and nobody to talk to about it. I work in Early Childhood, and although I'm now in a position of earning better pay and have good hours, I often miss the days when I could just teach my class and mind my own business. I love training young adults and seeing their professional growth and success, but there are others for whom my degrees and experience mean nothing, and even seem offensive. Then to come home and have nobody to offer any kind of support of encouragement….sometimes I find myself feeling rather lonely. I value days when I have the solitude to get something accomplished, but being alone is different that feeling lonely.
Thanks for reading. I don't really need advice….just space to be heard. You are all appreciated.
