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
The Connecticut Statewide Respite Care Program
Funded by the State Department on Aging and is operated in partnership with the Alzheimer’s Association Chapters of Connecticut and the Connecticut Area Agencies on Aging. Eligible families may apply for daytime or overnight respite care services.
Alzheimer’s Association Respite Fund
The Alzheimer’s Association Respite Fund, subsidized from individual and corporate donations to the Association, is a financial reimbursement program designed to assist caregiving families in accessing respite care services.
For more information about both go to: http://www.alz.org/ct/in_my_community_61786.asp
While developed for Alzheimer’s caregivers, it applies to FTD as well.
Alzheimer’s Navigator helps guide Caregivers to answers by creating a personalized action plan and linking you to information, support and local resources.
You can set up an account or do it as a guest.
From the Family Caregiver Alliance National Center on Caregiving
A Caregiver’s Guide to Understanding Dementia Behaviors
Ten Tips for Communicating with a Person with Dementia
Handling Troubling Behavior
Repetitive Speech or Actions (Perseveration)
Additional Problem Areas
Click here to go to the article.
The Penn Frontotemporal Degeneration Center, University of Pennsylvania, a good source of information for caregivers and for medical professionals.