Harmful to point out the gravity of my wife's memory problems?
My first post. First, heart goes out to those with far graver concerns than mine. I have watched my wife's short-term memory disintegrate over the last six months. I am coping reasonably well but concerned that she dismisses the problem as "old age" (refusing to acknowledge that neurologist's verdict and brain scans show it's much more than that). It has interfered with my efforts at maintaining her schedules of medications, appointments, obligations, etc. but she views my gentle guidance as "control" and loss of autonomy. I do not want to hurt her or to incite conflict or to have her think that my love for her has been diminished. Any guidance from those ore experienced than I will be appreciated.
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Your post is an inspiration. My husband is a Stanford graduate with an ABD in French Literature and an MLS in library science. He was a university reference librarian for 42 years and has always been proud of his brain, so I know how you feel about watching your dad's decline. My husband isn't quite as far along as your father, but he has many of the same behaviors. Lots of repetition, loss of words, loss of short-term and long-term memory. He knows, I guess, his diagnosis and has an appointment with a neurologist in a couple of weeks, but he doesn't seem to understand why our primary care physician referred him. He had some sort of test on his brain (scan, eeg?) about a year ago but I don't recall anything definitive from that. My understanding is that there's nothing that can be done, so I'm not sure what good pinning down a diagnosis would do. I know so may folks who have dementia these days. Their spouses cope and we all do the best we can. You have a great attitude that I shall try to emulate.
@pamela78 It is tough and wishing you and your husband continuing happiness despite everything 🙏
My sister is a clinical nurse and is adamant that, as there’s nothing that can be done for Dad, we don’t get him clinically diagnosed because of what that entails if he’s hospitalised. Dad’s finances preclude him from receiving subsidised care packages so that isn’t a reason to get a diagnosis. He has continuing decades long health insurance which I ensure is paid each year! My sister talks to the hospital staff about his care on admission and so far his few stays have been fine for the staff, him and other patients.
Legally, we all ensure that we do not do anything with his finances other than what HE needs and what he gives the go ahead for (eg his roof was leaking so we organised for that to be fixed and paid out of his account). I talk him through these sorts of things before going ahead. He’s still capable of understanding and making his own decision in the moment.
I also print out his bank account regularly (transactions etc) so the family and my Dad can see exactly what I’ve done on his account with internet banking.
We have all agreed that as far as medical decisions are concerned if we family members disagree (eg whether or not he gets shingles, RSV or Covid jabs) what his doctor recommends prevails. Dad has trusted his doctor over the years who knows Dad well. Again I talk through things with Dad (including any family disagreement and what his doctor recommends) and again Dad is able to make the decision in the here and now.
With his consent we have cameras outside his house so we get notifications if he goes outside the house. He so far doesn’t go outside the front gate on his own. We joke with him about microchipping him!! We are looking with him at adding a GPS tracker to his medic alert. He has a medic alert inside the house which he never takes off. So far we don’t have any cameras inside as he doesn’t want them, yet. We may encourage him to let us put one in his kitchen soon.
Things may change and we will roll with that. He put in place a guardianship appointment if needed with a lawyer friend we all know, like and respect some years ago 🙏❤️🩹
Still a relative "rookie" at the task of caregiving to the eclipse of my beloved wife's short-term memory on top of the many physical problems she has long suffered, I have followed the good advice of so many in this group to be patient, non-alarmist, and non-confrontational. She has been relatively cooperative in my taking over management of so many things she once did
autonomously.
But the the last month has seen increased physical pain and vastly diminished mobility, even using a walker, a fall that fortunately left no lasting consequences, and a brief hospitalization after another emergency-room visit.
I have been frenzied by all of this, fully appreciative of the book "The 36 Hour Day" that a member recommended. Still I recognize that this is likely but the beginning. The accounts of several members of the group have touched me deeply as a a taste of taste of extremities to come. I regret not having had the time to reply to what I have read.
Even as I manage the bevy of appointments for medical consultations and testing, I am conscious thar my own-well being is important, and as I write I am wearing a heart holter because of irregular heart rhythms and very brief bouts of "lightheadedness." I am employing all suggested relaxation techniques and taking a prescribed ani-anxiety med, which has helped a lot.
Thanks to so many for support and suggestions which have honed my caregiving skills and braced me for what may come. Tom (pcetng)
Martin,
Very sensible comment. Especially your mention that for people of our age (I'm 87), the bewildering array of technology and innovation we're expected to know about is a challenge. Yet things like robotics can aid treatment and AI Properly used can be helpful in our quest to keep abreast of medical breakthroughs in the field of cognitive disorder. I do my research in early morning before my wife awakens.
Tom (pcetng0202)
A moving saga, full of devotion, common sense, and respect for what remains of your Dad's persona.