Emergency Planning for FTD Caregivers

Along with the day-to-day caring responsibilities. finding the time to plan and be prepared to deal with a severe snow or ice storm, hurricane, tornado, flooding, power outage, fire, etc. is important.

This came to mind as I’m watching the weather report about us getting hit with a Nor-easter this evening.

I also think about it because I’m a member of Westport’s Community Emergency Response Team, community volunteers supporting emergency services, and in the past we have helped run shelters for residents who had to leave their homes.

r-uHere is a link to Are You Ready, prepared by the Westport Weston Health District. While some of it is specific to those towns, contact numbers for example, most is general preparedness information pertinent to anyone and it is nicely laid out and easily readable.

Another place for info is this link to an article on the National Caregivers Library site about things to consider.

Also a link to www.ready.gov, a Homeland Security web site.

 

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AFTD – Informal FTD Caregiver Connections

Would you like to connect with another FTD caregiver? No support group in your area?

The AFTD has a program where they can match FTD caregivers who are in a similar situation.

After agreement by both parties, they share a name and a contact number or email, but no other personal information.  You take it from there.

To request a match or to register, contact the AFTD at info@theaftd.org or toll-free 866-507-7222 for details.

“Using the iPad with a Person Living with Dementia”

I’ll be presenting and demonstrating the approach I developed to use the iPad with my ipad-diane-arden-aug2015-03wife at the CT PC User’s Group of CT meeting in Trumbull on January 26.

Details at http://tpcug-ct.org/

Description:

Keeping a person with dementia engaged in activities can be very challenging. Ed Fitzgerald, a technology consultant whose wife is living with Frontotemporal Degeneration, looked for ways to use technology to help her.

After some trial and error, he developed an approach to using the iPad, by creating a home screen of activities they do when they are together, combining apps, links, games, videos, pictures and more.

During this seminar, Ed will talk about how he got started on this project, demonstrate how they use the iPad, the process by which he created a customized set of activities and offer advice on how to proceed if someone is interested in pursuing it with their loved one.

He has also explored the use of augmented reality, virtual reality and a combination of real play and virtual play.

A glossary of FTD and Alzheimer’s related neurological terms

ftd-talkWouldn’t it be nice to have a place to go to get a brief description of terms like Aphasia, Acetylcholinesterase inhibitors, Dysphagia, Executive function, Lumbar puncture, Neuroleptic drugs, Tau, and many more terms we hear about.

Well there is.

FTDtalk, run by a group of scientists investigating FTD at the University College London Institute of Neurology in the UK, put together a glossary. Thank you scientists!

Go to www.ftdtalk.org/glossary/

6th Annual CT FTD Foundation Wine Tasting Fund Raiser

wine-2017The CT FTD Foundation will be hosting their annual wine tasting on March 11, 2017 at the DoubleTree Hilton in Bristol.  I went last year, it was wonderful! Great venue, good food, entertainment, raffle items and a very worthy cause.

You can go to their web site to buy tickets which are $35 when bought in advance. Please contact them with any questions, or if you have anything you would like to contribute to the raffle. info@ctftdfoundation.org.

FTD Caregiver Support Group Meeting

Date: Sunday, January 15th, 1:00-2:30pm
Location: Arden Courts Memory Care, 45 South Rd, Farmington, CT., a little over an hour from the Westport/Norwalk area.

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Arden Courts will provide respite care in a separate room if you bring the person with FTD with you. Just let them know in advance. RSVP: info@ctftdfoundation.org to confirm.

Meetings are the third Sunday of every month at Arden Courts Memory Care, 45 South Rd, Farmington, CT. Time: 1:00pm – 2:30pm. Hosted by the CT FTD Foundation, meetings are free. For more information contact info@ctftdfoundation.org

 

 

Caregiver Support from the CT Chapter of the Alzheimer’s Association

The Alzheimer’s Association is a great resource for information and support. The local office of the CT chapter was extremely helpful to me and my wife.

alz-careThey have a section on their web site that provides information by stages, early-stage caregiving, middle-stage caregiving, or late-stage caregiving, which is very helpful since each stage has its own unique aspects.

They have:

An online community: The ALZConnected® online community for everyone affected by dementia, Alzheimer’s or something else, like FTD.

An online tool, Alzheimer’s Navigator®: Designed to help guide you to answers by creating customized action plans and providing access to information, support and local resources.

Check it out at http://www.alz.org/care/overview.asp