I’ll be presenting and demonstrating the approach I developed to use the iPad with my wife at the Alzheimer’s Education Conference on April 6th in Cromwell, CT. It is an accredited course for healthcare professionals and open to family caregivers.
Ed Fitzgerald’s wife Diane was diagnosed with Frontotemporal Degeneration (FTD) in 2010. Using his technology experience, he developed an approach to using the iPad to keep her engaged and mentally stimulated, which is what he will talk about here today.
During this seminar, Ed will talk about how he uses the iPad with his wife and the process by which he created a customized set of activities that are of interest to his wife. He will offer advice on how to proceed if someone is interested in pursuing it with their loved one.
He also talks about getting other family members involved and the benefits to both the loved one and caregiver. While he uses an iPad, some of what he talks about applies to other tablet devices as well. You don’t have to be a techie to benefit from this seminar.
- iPad Demonstration
- Examples of activities using the iPad
- Apps recommended for those with dementia, games, videos, audio, music, news, photos, etc.
- The effect on behavior, agitation, feelings, communication, participation
- How to get started, identifying interests, getting educated, finding the right apps
- Guidance on how to use the iPad effectively and what doesn’t work
- How it can be used in a group setting in an assisted living facility, nursing home or senior center.
Register at the Alzheimer’s Education web site.
Click here for more information about the conference.
The Effective Communications Strategies program explores how communication takes place when someone has Alzheimer’s disease: learn to decode verbal and behavioral messages and identify strategies to help connect and communicate at each stage of disease. Join Shanon Jordan, South Western Regional Director of the CT Alzheimer’s Association, on March 29, 2017 from 12:00-1:00 pm at Brookdale Wilton, 96 Danbury Road, Wilton. Contact Christy Perone, 203.761.8999 to register.
I was invited by the CT Chapter of the Alzheimer’s Association to meet with Rep. Jim Himes along with three other caregivers. The objective of the meeting was to help him understand the challenges of being a caregiver and raise his awareness and get his support for two pending pieces of legislation.
We all had some powerful stories to tell and I think we had some impact on him. He listened patiently and asked some good questions. After breaking, he continued to talk one on one with a couple of us. Two of us were FTD caregivers.
There are two bills in Congress that address the needs of caregivers that he recently signed on for as a cosponsor.
- Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2015 or the RAISE Family Caregivers Act – H.R. 3099
This bill directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy. HHS shall convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers. Read more.
- PCHETA: Palliative Care and Hospice Training Act – H.R. 3119
This bill amends the Public Health Service Act to require the Department of Health and Human Services (HHS) to award grants or contracts for Palliative Care and Hospice Education Centers. These Centers must improve the training of health professionals in palliative care and establish traineeships for individuals preparing for advanced education nursing degrees, social work degrees, or advanced degrees in physician assistant studies in palliative care. Read more.
We should all take the opportunity to speak to our representatives when they hold their town hall, community meetings, write to them, and make sure that caregiving is a topic that they hear about and understand.
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.
Here 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.
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 email@example.com or toll-free 866-507-7222 for details.
It was our three year anniversary on September 28, our first post was in 2013. Hard to believe.
Our viewership has increased significantly. We have already exceeded the number of visitors this year by almost 170 and page views by over 500 compared to 2015, with 2 1/2 months to go.
I feel good that we are here for people in need, but wish we didn’t have to be. It would be nice someday to do a final post because we aren’t needed any longer.
I’ve been to it 3 times over the years and have found it very worthwhile.
There are vendors from home health care agencies, assisted living, the Alzheimer’s Assoc, CT state agency on aging, etc. you have the opportunity to ask questions, get info.
The speakers have been good and informative. They run it in an interactive way, bringing the mic into the audience and encourage questions and discussion.
The brothers who run it, Gary and Steven Barg, who started Caregiver Magazine, are passionate about what they do. It tends to feel like a big support group.
Here is a link to the agenda. It ends at 2:30 but if you had to leave early you would still get value from attending. Caregivers go for free, professionals pay.
You can great advice and tips from other caregivers. There is the opportunity to bounce ideas off of each other, as well as comfort in knowing you are not alone, that other people have been there too. And sometimes they may even make you laugh, or just feel good, at a time when you need it the most.
As you look through this list, keep in mind that not all groups are the same. Try a group and see if it is the right fit for you. I left the first group I went to after a couple of months, then found a group that was right for me.
- There are groups that meet in NYC and in Farmington, CT that are specifically for FTD. Both are groups I have gone to, here are the details.
- There is a Dementia Caregiver Group that meets at the Norwalk Senior Center, not specifically FTD, but I generally attend. Details.
- I am in the process of starting an FTD support group in Fairfield County if there is enough interest. Contact me if you are interested.
- Look for an Alzheimer’s group. There are groups that meet in Greenwich, Darien, Norwalk, Fairfield, here is the list for all of CT on the CT Alzheimer’s Association site, along with the contact info and the type of group, some may be for men, women, spouses only, etc.
- There is an active FTD spouse support group on Yahoo. I am a member, have not participated much but do see the posts and there is good interaction. Here are the details.
One on one
- The AFTD offers something called Informal Caregiver Connections. Register for the program and they will connect you with another caregiver, first checking to make sure you and the other caregiver agree to be introduced. Contact them at firstname.lastname@example.org or 866-507-7222.
- I have not formally participated in that program, but have connected one on one with people who have found me online. It has proven to be effective. I am currently in touch with someone from NYC whose spouse was recently diagnosed, she is exploring care options, she and I have not met in person, but have exchanged emails and talked on the phone. Feel free to contact me.
Some practical tips from University of California, San Francisco about Planning care, Alleviating symptoms, Tips for daily routines and What to Expect.
Go to UCSF FTD Tips.
One of the more difficult things to deal with is telling someone with FTD that they can no longer drive.
I was lucky. The MD who diagnosed my wife told me that she would be the one to tell her not to drive. She would be the bad guy.
Whenever my wife said she wanted to drive, I would tell her that Dr. B said she shouldn’t and that we would ask at the next visit if it would be OK. My wife wasn’t happy and reluctantly accepted the fact that it was beyond my control. Plus she felt there was some hope that at the next visit things would change. As time passed, my wife stopped asking.
Liability is a big issue. I hear caregivers say that their loved one only drives a mile to the local market. A lot can go wrong in a mile, in the driveway, in a parking lot.
The Alzheimer’s Association has put together some guidance on how to deal with the driving issue.
Read more at Dementia & Driving Resource Center