It’s a quandary we face. The person we love and married is no longer the same. I miss him all the time. Life with a p.w.d. is far from easy. Is this the right time to place him or her in a residential home? A social worker once told me, “You will know when theContinue reading “Home away”
Author Archives: TheRealTamara
That village
It takes a village. Hillary Clinton on bringing up children but applies as well to how society runs Good neighbors. They have provided continuing support for me. My personal cavalry when, one day, Burt was so agitated about going out to the street that he rammed his walker against a wall. Down he went. AContinue reading “That village”
Awareness
In trying to keep a positive attitude over our situation, I also try to find humor when I can. This doesn’t mean that dementia is not a dreadful disease. As it is Lewy Body Awareness Month, we need to stay aware of just how devastating LBD is. All dementias occur as some necessary protein inContinue reading “Awareness”
LBD Awareness
A year ago, I commemorated Oct, Lewy Body Awareness Month, by beginning this chronicle of our journey. October marks 4 years since Burt was diagnosed. It is not a happy anniversary. Nonetheless, I remain grateful that I can still enjoy him. We are having some rough times, but he is still my delight. I amContinue reading “LBD Awareness”
Advocacy
A provider is giving me a hard time over my healthcare proxy. They’ve refused to discuss Burt’s plan of care until they vet my proxy. This morning, while mulling my frustration, I thought oh come on. I have the marriage certificate.* That should be proof enough. [*Side note: a beautiful copy of this docunent arrivedContinue reading “Advocacy”
Recognition
Burt has times when he is sure I am one of “6 to 20” wives. Which one are you? Honestly – although I call this schizophrenia by proxy, – I am glad that, if he’s confused, he asks. This query about who and which at 6 or 7 pm always puts me in a bigContinue reading “Recognition”
No aide
I take my respite seriously. I’ll admit sometimes too seriously. Time away from the unusual thinking fostered by LBD is my golden ticket to staying sane. Or so I fervently believe. I take that time each weekday. On the weekends, we have help so I can have less hands on with the care. All ofContinue reading “No aide”
Conjuring Dickens
Not only is Burt emotional (as documented here before), but he is capable of having a multitude of conflicting feelings at once. It was the best. It was the worst. All on one occasion. He has no filter, so he isn’t shy about letting me have it. Nor in the least non-plussed at sharing aContinue reading “Conjuring Dickens”
DTA. E.T.A.
Soon, we switch the clocks. Not soon as imminently but more in the context that Christmas decorations will go up before the Thanksgiving leftovers fill our freezers. Musing over the time change is a teary event for me. Time is a touchy topic when your loved one has lost all sense of it. Also, changingContinue reading “DTA. E.T.A.”
Help is on the way
As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are. The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative.Continue reading “Help is on the way”
this is our life 