TRANSCRIPT: AARP TN Caregiving Facebook Chat With Amy Goyer

1:00

AARP Tennessee:
Welcome to our Calling All Caregivers: A Facebook Chat for Tennessee Family Caregivers

In Tennessee, some 1.65 million people are managing medications, meals and more for family members and loved ones. We know how tough that is -- and that many of you need help but don't know where to turn. AARP wants to help connect you with information, resources and another -- in a way that you can access YOUR time.

We're excited to host our first Facebook caregiving chat. Today we're lucky to have AARP's caregiving and family expert Amy Goyer join us. Amy, please tell us something about your caregiving experiences.

1:01

Amy Goyer:
Hi Tennessee! So happy to join you to talk about an issue I feel so passionate about! I am caregiving for both of my parents who live with me, so I'm living this every day too.

1:01        Comment From Michelle
Are there any types of support groups in my area. My father has been in ICU this week and I am needing some type of support and it is starting to affect my health. They were just able to take off the ventilator a short time ago. I am totally drained both physically and mentally and could really use some type of group to talk with.

1:02
Amy Goyer:
Michelle - so glad you recognize the need for support in your situation - I've been there and it is so draining.

When my Mom was in the hospital for 40 days, I found lots of ways to get support. Facebook was really helpful for one, and Twitter - online support can be great when you're not able to get to an in-person support group.

You can find online support groups in various places, including:
* Caregiving Message Board http://www.aarp.org/online-community/forums.action/relationships_caregiving
* Online Caregiving Support Group http://www.aarp.org/online-community/groups/index.action?slGroupKey=Group92

And local support is also available - AARP TN will let you know how to find support groups in your area.

1:04
AARP Tennessee:
Thanks so much Amy and Michelle. We really feel for you. Please reach out to your local Area Agency on Aging and Disability or 1-866-836-6678.

We're also going to be trying to create some virtual support groups for folks in Tennessee. Please keep in touch with us via Facebook or our web site. You can also email us at tnaarp@aarp.org or 1-866-295-7274.

1:05        Comment From Kara
If i think someone has Alzheimer's how can I tell?

1:05
Amy Goyer:
Kara, My Dad has Alzheimer's and it's so hard to deal with. Here is a video I made talking about getting my Dad diagnosed.
Amy Goyer - My Dad's Alzheimer's Diagnosis

Alzheimer's is one form of dementia - there are many types of dementia that can cause memory loss and impaired cognitive functioning. If you suspect your loved ones are having trouble in this area, it's a good idea to get a thorough evaluation from a doctor.

A neurologist can do an exam that could include asking your loved ones questions, CT scans or MRI of the brain and other tests.

It's important to get a diagnosis as early as possible, because there are now medications and other treatments that can help slow down the progression of the disease.

And sometimes people who are suffering from dementia are resistant to evaluation or treatment - that can really be tough for a caregiver. If possible, talk with your loved ones' doctors about how to handle the situation.

1:09
AARP Tennessee:
There are some really good resources in our state. Please check out the Alzheimer's Association or 1-800-272-3900

Also, try www.alzbrain.org because it has really good tips and info for caregivers to evaluate at home. The info is in terms that all of us can understand.

1:09        Comment From Fern
Are there ways family members can be paid to care for a spouse? I need help looking after my husband. I had to quit my job.

1:10
Amy Goyer:
Fern you are not alone - I get that question a lot. So many people have to quit jobs to care for loved ones. Here is an article on the AARP Caregiving Resource Center website that might help. Can I Get Paid as a Caregiver?

Essentially, if your spouse has money to pay a family member, they can do so. Some people have Long Term Care Insurance that pays for home care and that can be used. If your spouse is a veteran, he/she may be eligible for the Veterans Aid and Attendance funds that can be used to pay caregivers.

If you are paid as a family member, be sure to keep track of the payments and pay taxes - that way your loved ones can write off the caregiving expenses in their own taxes.

1:12
AARP Tennessee:
This is an issue that AARP advocates are exploring as an option in Tennessee. We may be proposing legislation that would call for family members to receive compensation.

You can keep up with our efforts and help with this by signing up for our advocacy alerts here.

This year, the Legislature unanimously approved a resolution drawing attention to the fact that 1.6 million Tennesseans are providing more than $11 billion worth of care each year. The governor signed it this month. We hope that will draw more attention to the needs for all you caregivers.

1:14        Comment From Charlene
We have recently had to take the car keys from my dad. I'm 53, just graduated from college and working on my own new business, and I am EXHAUSTED! All I do now is drive my folks to the doctor, pharmacy, grocery store, etc etc etc. I have little to no help. I need to find some relief. Hints?

Amy Goyer:
Driving can be such a tricky issue! Here is a video I did on having those difficult conversations with loved ones.
Difficult Conversations and here is my blog post about what happened when I had "The Talk" About Driving with my Dad.

When loved ones stop driving, it's important to have alternative transportation solutions lined up. Yes, you as a family member and caregiver often end up doing the bulk of the transportation. But it can be so time consuming!

A few things to look into: If your Dad lives in a senior community, transportation is often provided to grocery store, appointments, etc. There are also senior taxi services in some towns that offer a discounted price, some communities have volunteers who take people for errands etc.

If your Dad is eligible, there is a program in Tennessee called CHOICES that offers home-based services for folks who are eligible for Medicaid.

One more thought: if you have friends (or your Dad does) who are also caregiving for older parents, maybe you could create sort of a "co-operative" where you take turns taking them to the store etc.

1:19
AARP Tennessee:
Charlene, we know this makes it tough for you. There is a new tool available that could help you organize neighbors, church members or family members to help. Lotsa Helping Hands (www.aarptn.lotsahelpinghands.com).

1:19        Comment From Marc
My wife will not let me help her with her parents. Should I quit trying?

1:20
Amy Goyer:
Marc: No!!! Don't stop! Your wife will need your help eventually even if she' doesn't realize it yet. Sometimes it's hard for us, as caregivers, to know how to accept help and even to know what to assign people to do.

1:21
Amy Goyer:
I often have people say "if there is anything I can do..." but I struggle to take the time to explain to them and give them the info they need or training to actually help me. Sometimes the best way to help a caregiver is to help them with THEIR everyday life.

1:21
Amy Goyer:
For example, I have someone who helps me sort my mail and organize the bills, clean the house, do yardwork etc. so I'm freed up to spend time with my parents and tend to their needs.

1:22
Amy Goyer:
You may be helping her as a caregiver more than you realize by lessening her load at home with other responsibilities. That may be what she needs the most right now.

1:23
Amy Goyer:
Just ask her Marc, if there is anything else you can do. And treat her - get her a massage, nails done, take her to a movie - respite from caregiving is a gift you can give her. Here is my blog post about the other "intangibles" that we as caregivers need so much - maybe this will also give you some ideas.
A Caregiver's Christmas Wish List (Part I: The Intangibles) http://blog.aarp.org/2011/12/09/a-caregivers-christmas-wish-list/

1:23
AARP Tennessee:
Thanks, Amy. Great suggestions and you are right that by helping at home, it may be just what she needs to keep up her energy for caregiving.

Marc: Maybe you could create a caring community site for your wife's parents that could help ease her burden: www.aarptn.lotsahelpinghands.com.

Sometimes when we are in the middle of something, we don't know what kind of help we need.

1:24        Comment From linda carlson
Does Tennessee have any respite programs available?

1:25
AARP Tennessee:
Thanks, Linda. Tennessee does have some respite programs available. The Tennessee Respite Coalition is doing a great job at providing folks to help out for an hour or two - just to give caregivers a break. 1-888-579-3754.

1:25        Comment From kay
are there volunteers who would be willing to come in a couple times a week to help my mom with a bath? I have had an injury that makes it impossible for me to give her a bath and I will be out of commission for several weeks.

1:25
Amy Goyer:
Kay - I hope you do take the time you need to heal! For our Mom, you might find a volunteer who can help, but also be sure to find out if she is eligible for home health care even for a short time while you heal. If she's eligible for CHOICES she may be able to get a paid caregiver to come to the house and help her bathe.

1:27
Amy Goyer:
Remember that the bathroom - and especially bathing - is a high risk area, so finding a volunteer willing to do the bath might be tough. Here is my video with some fall prevention tips: Fall Prevention:

1:28
AARP Tennessee:
Kay, it's great to have friends and family who volunteer to stay with your mom for a few hours, but like Amy said, there is a risk of falls associated with bathing. It might be the type of service that you really should pay for. Check with your local Area Agency on Aging and Disability 1-866-836-6678.

1:29
AARP Tennessee:
If you do choose to use a volunteer, we've heard from nurses who've said this is exactly how they'd like to help out in their communities.

1:30        Comment From Carrie
My husband is a vet and amputee. I need help now not beurauracy. Can AARP help?

1:31
Amy Goyer:
Carrie - It sounds like you are frustrated with the red tape - I can identify! I applied for Veterans Aid and Attendance benefits for my Dad one year ago - we just got the letter saying it was approved. I submitted over 40 pages of evidence for the application...and now I need to submit more to get retroactive payments. But it's an important benefit so if you're in the middle of that, don't give up!

1:33
Amy Goyer:
I don't know what you've already tried, but the Veterans Aid and Attendance is one option. We have an eldercare attorney helping us with veterans benefits and support for Dad, and I've signed him up for the VA hospital for care nearby. Have you tried that?

1:34
Amy Goyer:
There are also organizations that help veterans manage and apply for benefits that might be helpful. But be careful - some take a cut of the money every month when you get approved. Contact your TN member of congress for guidance and help with veteran's issues also.

1:34
AARP Tennessee:
Carrie: We know that it can be very frustrating. The National Family Caregiver Support Program might be able to help. Talk to your local Area Agencies on Aging and Disability or 1-866-836-6678.

Or give the state Health Insurance Assistance Program (SHIP) a call: 1-877-801-0044. They've got free counselors who should be able to help with coordination of benefits.

Here's the state Veteran's Administration info

1:35 Comment From Ellen
I need advice for helping a family caregiver who is not dealing well with her mom's recent memory loss and confusion. She gets so angry and dismissive, and makes fun of her mom in social settings. I hate it. Seeing it from the outside is so hard, because I am sympathetic, but she doesn't seem to understand that there is a new normal and that she needs to find a way to be kind.

1:35
Amy Goyer:
Ellen you are obviously a good friend to be concerned! It's so hard to watch people go through this process. It sounds like your friend may be in denial - which is a normal part of the grieving process...and when a loved one has dementia, it is a long and drawn out grieving process.

Grief isn't just about after a loved one dies - it's about the "long goodbye" that happens when your loved ones are slipping away in front of your eyes.

One thing you can do is to role model - interact with her family member in a loving and accepting way, divert when anger happens, use humor, music etc. Here are some of my tips for when a loved one has Alzheimer's:
He's got Alzheimer's, Now What?
The other thing is to encourage your friend to get support. A local support group she can find via the local Area Agency on Aging or an online group I posted earlier in the chat might be very helpful. The Alzheimer's Association has special supports for caregivers of those with dementia.

Lastly - love and accept your friend and help her through this grieving process - she's lucky to have you!

1:41
AARP Tennessee:
That's so true, Amy. She is lucky to have you. You may want to visit the AARP caregiving support site - or direct your friend to it: www.aarp.org/caregiving.

Also, you might direct her to the Alzheimer's Association in Tennessee: www.alz.org/altn/

1:43        Comment From Sarah
Since my father's stroke, his "friends" have essentially abandoned him. I see him become more and more isolated. I was interested in finding an adult day care center that would give him more of a social life than I can provide but all I am finding are ones that require a 5 day a week commitment, when I factor in the cost of the program and the back/forth daily commute, it is not economically feasible for me. Are you aware of any programs that are available for just a couple of days? Senior centers, 50 Forward, etc. organizations require more independence than my Father has as he is a fall risk and the stroke affected his ability to make good/safe decisions. Thanks in advance, am enjoying all the information already provided.

1:44
Amy Goyer:
Sarah - it's so heartbreaking when people withdraw after a stroke or when dementia hits. I've seen it happen so many times. And you're right to be concerned - isolation can do so much damage and can even lead to more health issues.

Adult day services can be great for someone like your father, and many are offering more flexible options like only a few days a week - some are even offering night time care in some communities. But you have to find what is in your father's area and that you can get him to (some do offer transportation - have you checked on that?)

If you can't find adult day services that work for him, other ways to increase socialization are: volunteers to come in and spend time talking, listening to music, watching movies, playing games, exercising etc. Or you might even consider meals on wheels, the volunteers who deliver the meals often are the only socialization a person gets all day.

I do try to take my parents out in the community as much as possible - that does help. I take Dad to the grocery story with me etc. - any interaction is good!

1:47
AARP Tennessee:
Sarah, adult day care is a growing need in Tennessee. Have you reached out directly to the one you like, and tried to negotiate? Sometimes that will work.

You may want to contact CHOICES, to see what's available in your community. 1-877-224-0219 or www.tn.gov/tenncare/long_choices.shtml

Or go to Angie's List. Just for the Nashville area alone, there were 15 facilities with user and consumer reviews.

This also is something that the Area Agencies on Aging and Disability might be able to help with: 1-866-836-6678. www.tnaaad.org.

1:48        Comment From Sarah
No, Amy, I haven't found any yet that even offer just a few days, and none so far that help with transportation.

1:49
Amy Goyer:
That's really difficult, Sarah - check out the resources AARP TN just posted. If your father qualifies for CHOICES, transportation is provided through that Medicaid waiver program. Also - if the adult day services centers have a social worker on staff have a conversation about options.

1:49
AARP Tennessee:
One other option is to go directly to a skilled nursing facility (nursing home) and ask the administrator or social services coordinator if they offer day programs/day respite.

1:50        Comment From Miles
Where do I get retirement home info?

1:51
Amy Goyer:
Miles - there are many different levels and kinds of care for our loved ones - Independent living in a senior community, assisted living, group homes, skilled nursing facilities etc. Here is a blog post I wrote explaining these levels of care and what to expect in each one:
Is Your Loved One Really Getting the Care You Expect?

Here is a Care Provider Locator service we offer on the AARP Caregiving Resource Center Care Provider Locator.

So Miles - be sure to look at your loved ones' needs and then choose the right living situation for their needs that allows the most independence for the longest time possible. Most people will move between levels of care - and 9 out of 10 people want to remain in their own homes as they age - so check out home care services as well.

1:55
AARP Tennessee:
Hi Miles, the concept of "retirement" is changing. Amy's blog post will be very useful if you are looking for housing with care options, but if you're looking for info on housing targeted to retirees, try this site: www.the-aarc.org (Association of Retirement Communities). As well as "Retire Tennessee" ... www.retiretennessee.org 
1:56        Comment From Larry
Is Long Term care insurance a good idea/?

1:57
Amy Goyer:
Larry - Long Term Care Insurance can be great for some people, and doesn't make sense for others. It's important to look at the options, your individual financial situation and retirement savings and I'd consult with both a financial expert (your accountant perhaps) and an insurance expert.

AARP Tennessee:
Here's a resource we found on www.AARP.org: http://www.aarp.org/health/health-insurance/info-06-2012/understanding-long-term-care-insurance.html

1:58
AARP Tennessee:
OK, we have time for one last comment/question.

1:58        Comment From linda carlson
Amy, you are a wellspring of information and I am learning so much. If I took one thing away from my 7 years of caregiving it is that the caregiver MUST be taken care of as well. Without the dedicated caregivers our loved ones leave us much too soon.

1:59
Amy Goyer:
Thank you Linda! It's so vital that we take care of ourselves. I have worked in the field of aging for 30 years, and yet caregiving is still hard for me. It's a personal journey and everyone's is unique. HOW we take care of ourselves will vary too.

2:01
Amy Goyer:
Sometimes it's just taking that quick break, a walk around the block, a cup of coffee, a quick phone call to a friend or checking your Facebook page. Other times we need a longer break and respite so be sure to line up weekends or even full vacations when possible (I'm taking one starting this Friday!) But it's hard to be away from loved ones. Also take care of your health, immunizations and screenings etc.

2:01
Amy Goyer:
Here are some of my tips for making your caregiver respite last...
Caregiver Respite: 5 Ways to Make it Last 

2:02
AARP Tennessee:
Thanks Linda and thank you all so much for participating.

We are sorry that we haven't been able to answer all your questions. But this is just the beginning of our conversations. We want to serve as a resource to you.

We can see from the poll that we took during the chat that you all are having a tough time: We asked:  What do you find most difficult as a caregiver?
Finding volunteer help
( 20% )
Getting an hour to myself
( 0% )
Balancing work and caregiving
( 0% )
Exhaustion
( 20% )
Finding services
( 0% )
All of the above
( 60% )

We will be hosting future Facebook chats, we'll connect with you on Twitter chats, via tele-town halls, emails and the like. We are considering creating some virtual support groups for caregivers - so please let us know if that is a good idea for you! Just email us at tnaarp@aarp.org, tweet us at @aarptn or comment here on our Facebook page, www.facebook.com/aarptennessee.

You are doing so much to care for others that we want you to know AARP Tennessee Cares for you!

And a big shout out to Amy! Thank you so much for all your advice and tips. We hope to chat with you again SOON!!

2:03
Amy Goyer:
Thanks for asking me to join you! And to all who participated - all my fellow caregivers - hang in there, be in touch with me on Facebook www.facebook.com/amygoyer1 and on Twitter @amygoyer and let me know how I can help - and share your caregiving stories and tips too!
And stay tuned for my upcoming book, "AARP's Juggling Work and Caregiving"! It will be published in the fall as an e-book via www.aarp.org/caregiving and it will be FREE!

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