It had not occurred to me that anyone faced with caregiving alongside a person diagnosed with dementia would not seek… help, to learn all possible. I know you would not be following along here if you were that incurious. To my utter surprise, I met a disinterested spouse recently. I gather she had gone toContinue reading “Finding out”
Category Archives: Support Groups
Reinvention
There’s a lot of re-inventing the wheel for us when we become caregivers. It makes sense that we have to learn how to deal with the many difficulties of dementia when it strikes. We have to learn to take on the responsibility for another person. We have to learn how to take care of ourselves.Continue reading “Reinvention”
For May 3rd: games
And ice breakers The party for Burt on our 35th anniversary was a treat. There was so much loving energy in that room that we all knew he was there. It was unnecessary but I had prepared a little ice breaker based on the Burt approach. He made friends in our building both before LewyContinue reading “For May 3rd: games”
The practice of care
Best practices include the care of our darlings but as caregivers we need to look out for ourselves. Care for the caregiver includes respite, a topic dear to me and upon which I have expostulated at length. Self-care can and should be done in the company of others. Spend time with friends. I have lunchContinue reading “The practice of care”
Support groups
Supported was a tangent that derailed my intention to discuss support groups. These have been a vital life-line on my side of the journey. Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker. What a gift that was. The social worker from his current neurologist’s officeContinue reading “Support groups”
Got to get a hobby
What is your favorite hobby or pastime? In the last post here, I had a chance to investigate “leisure activities” for Burt. Mine are less nuanced. I used to love trying artsy craftsy things to do. I once made a beautifully resonating drum. I also potted a decidedly clunky piece of clay; I was aimingContinue reading “Got to get a hobby”
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”
Paying the piper
The cost of care is astoundingly high. My time has come to get some help with those costs. Fingers crossed. It would be unrealistic for me to try to meet Burt’s needs without the aid of professional aides. I know Burt’s needs will only increase. It’s a scary proposition. Medicaid is an option for someContinue reading “Paying the piper”
Stay calm
My role as a caregiver to a person with [Lewy Body] dementia demands I get acquainted with psychosis. A calm and contained demeanor is preferred to one in which I freak out. In a tour of an exhibit in which art and psychiatry crossed paths, it became clear to me that the psychotic makes meContinue reading “Stay calm”
Not to worry
It’s natural for caregivers to be vigilant about changes and signs. It’s in the nature of our person with dementia, particularly a partner with Lewy Body, to give us cause for worry. So when we fret, it has to be over reasonable concerns. And in measured tones. My tendency to panic has been noted, evenContinue reading “Not to worry”
this is our life 