Caregiver Matters of CNY

01/22/2025

https://caregivermatterscny.wordpress.com/2025/01/22/meet-them-where-they-are/

I started writing this post a few days ago, but honestly, I wasn’t sure where to start. I wanted this post to be about the art of meeting a person with dementia where they are, rather than ex…

12/28/2024

Incontinence occurs in about 70% of people with advanced dementia.

As dementia advances, patients lose physical function as well as cognitive capacity. The official term for this phenomenon is retrogenesis or age regression. As their dementia advances, we watch ou…

12/12/2024

https://caregivermatterscny.wordpress.com/2024/12/12/what-is-deprescribing-and-how-do-you-know-if-its-right-for-you-or-the-person-you-care-for/

Deprescribing is a relatively recent practice, and while it is more common in Canada, there is a growing understanding in the US that it may be of benefit to older patients. Deprescribing is define…

05/15/2024

President Jimmy Carter The Carter Center has been on Hospice for a year and a half. He continues to be an example of why we should enroll in Hospice early. His Hosice decision was made after a series of hospital stays, but once on Hospice he appears to have experienced a plateau in his decline. This is pretty common. My Dad also saw some initial improvement on Hospice, although his plateau was relatively brief.

Being on Hospice provided President Carter with nursing care at home and allowed him to continue to be with as she went through dementia and ultimately died of that condition. And according to his grandson, although he is moving toward the end of his life, he continues to do well at home in Hospice.

Don’t be afraid of Hospice, or of receiving home health care in general. It may feel like the “beginning of the end” but it will not hasten that end. It will allow you or your loved one to remain safely at home, among their family, friends, and pets and treasured belongings.

No one should have to die in a hospital or nursing home, if we can give them another option. Hospice is that option. And it’s covered by Medicare.

Learn more about

Spotlight For a one-stop resource focused on the informational needs and interests of Medicare Fee-for-Service (FFS) hospices, visit the Hospice Center webpage

03/14/2024

12/31/2023

I hope this holiday season has been good to you and the people you care for, and that 2024 is filled with good health and happiness, and all of the support you need in your caregiving.

If you are caring for, or have cared for, someone with dementia, you know that the holidays can be challenging. How to help them feel included in family events, but not overwhelm them with all of the activities, choices, and joyful chaos that come with these get-togethers. How to make sure everyone is sensitive to the realities of the person with dementia without making them feel like everyone is treating them differently.

These changes can make your holidays a sad affair, as you watch them slipping away a little bit at a time. All we can ever do is cherish people while we have them, and adjust activities as they need. And of course, take care of ourselves. Because to be a good caregiver, we must first take care of ourselves.

11/28/2023

In honor of 's efforts to raise awareness about , I want to honor her son , who has been driving 6 hours roundtrip, 2 to 3 times a week, to provide care to .

We family caregivers often say, "I'm going to do everything I can, so that I don't have any regrets when they are gone." I hope that, after all he has done to care for his parents, Chip has absolutely no regrets today.

In a recent interview, he talked about how she might not always have recognized him when he walked into the room, because of her dementia, but once they hugged each other, she would often remember him.

11/03/2023

Hello,
My name is Alex Miceli and I work for Vanderbilt University Medical Center in Nashville, Tennessee as a part of the Community Engagement Studio Team. I came across your organization as I searched for connections to individuals who serve as caregivers for someone with Alzheimer’s who might be interested in an upcoming virtual community meeting. The purpose of the virtual community meeting is to specifically focus on the experiences of African American caregivers who do or have utilized online platforms (i.e. Facebook, Google, Reddit) to inform their care and create a community-informed approach to this research project.
This will be a one time, 2-hour virtual meeting hosted via Zoom. Participants will be asked to provide feedback on the project and recruitment ideas. Meeting participants will NOT be asked to participate in the study. We value the community's input into this project and appreciate your consideration. We will compensate everyone who attends with a $50 gift card.
If you think this is an opportunity for those in your network, then please share the attached flyer. I am also available to answer any questions that you may have about this request. My direct number is 615-875-8420.
I will link the interest survey here: https://redcap.link/yin_studio and I look forward to hearing from you.
Best,
Alexandra Miceli
Research Services Consultant I
Vanderbilt University Medical Center, VICTR
2525 West End Ave, Suite 600 | Nashville, TN 37203
Phone: 615-875-8420
Email: [email protected]
Website: https://victr.vumc.org/

09/06/2023

As I approach the anniversaries of my parent’s deaths - they died on the same day two years apart, Dad from advanced dementia, Mom from complications of COPD 2 years later (her dementia was milder and kept her in nursing homes for 12 years) - I am thinking about former caregivers in general. And remembering that feeling of being lost without someone to worry about.

We spend so much mental and emotional energy in the years we are caring for our elderly parents, particularly if they have dementia or some other long-term chronic illness, that it takes a while to figure out what to do with all of that space - in our minds, in our hearts, and in our calendars.

Can we pick up our old hobbies that we never have time for? Can we take up new hobbies? Spend more time with our family and friends? Engage in self care again? Sleep in without worrying about the phone ringing? Take the time to drink in our coffee and the silence in the morning?

If you were a caregiver who lost the person you were taking care of, what did you do to fill those spaces?

05/24/2022

First of all, A Place for Mom only lists facilities that are paid members of their national network of senior care communities. Which means that some of the memory care, assisted living, etc. communities in your local area may not be on their list. So don't forgot to do your homework about what's out there!

Secondly, the new "a place for mom" commercial says that once they got Mom into the right residential facility, they could go back to just being her loving daughter and husband instead of her caregivers.

Let's be clear. Once you have become the caregiver of a spouse or parent with dementia, you are their caregiver for the rest of their life. Their being in a facility, no matter how nice, does not release you from the worries or the midnight calls. You don't just sign them over and forget about them.

There is no facility in the world that will release you from worrying about them. Or from wanting what's best for them. Or from needing to advocate for them so they always have the best care. You just need to find a place that is a good fit, that will keep you informed, and that will be responsive to your parent's needs and your needs as their caregiver.

Don't be fooled by their commercials. This is the hardest job that you will ever by glad you did.