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 (rerun)”
Category Archives: Support Groups
Costs of care
The cost of taking care of a loved one with dementia is high. The American healthcare system is unlikely to be much help. Long term care insurance might provide the bandaid to expenses. I don’t know the cost to benefits analysis of buying this insurance; I didn’t have it. When your person gets ill, youContinue reading “Costs of care”
Support. Volunteer.
The idea that I might want to stick around with dementia caregivers after the traumas of my journey with Burt seemed unlikely. I have mentioned this before. I admired and appreciated all those I met on my journey who were supporting others after their journey had ended. I just did not expect to be oneContinue reading “Support. Volunteer.”
I ♥️ Support Groups
To me, it’s not a paying back or a pay-it-forward. I think of it as a graduation. I was a huge consumer of support groups while I was caregiving. I know how much I needed those sessions with others in a similar place. The neutral space where other caregivers talk freely under the guidance ofContinue reading “I ♥️ Support Groups”
Finding out
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”
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”
