Here is the transcript from the Nov. 5 online chat with AARP’s caregiving expert Elinor Ginzler and family expert Amy Goyer.
Elinor Ginzler: Good afternoon, everyone. For a little background on myself: I have over 25 years' experience in independent living and aging issues. I am AARP's lead spokesperson on caregiving, housing and mobility issues, including older drivers' safety.
And Amy, tell us a little about yourself!
Amy Goyer: Hi, all. It's great to be here with you to talk about this important topic! I am AARP's Family Expert and I've been working with families and aging/multigenerational issues for more than 25 years.
I am also caregiving for my parents now.
AARP Host: It's a pleasure to have you both here. ... So let's get started!
Question from At Wit's Ends: My father's doctor said he needs to cut back on carbs but when I try to talk about it with him, he gets really short and angry with me. What do I do?
Amy: It's hard for people who have been eating a certain way for many years to change their eating habits.... You might want to try offering substitutes that are still attractive for him.
Elinor: I would like to add in here — it might be better for this message to come from his doctor instead of from you. And getting a list of all the foods that are OK for him would be a great start.
Amy: Also keep in mind that for your dad, he still has the ability to make choices for himself — sometimes you do the best you can and then you have to "let go."
Comment from Molly, Green Bay, Wisc.: I'm having a hard time deciding on where to put my mom (dementia) and my siblings keep arguing with me about it. Any help would be wonderful.
Elinor: Hi, Molly. I know how hard it can be for siblings to talk about and come to agreement, especially when it has to do with Mom and her dementia. If you've really given it your best shot, and communication is still breaking down, you might want to think about finding an objective third party. That could be a friend of yours, of your mom's, or an eldercare mediator, or a geriatric care manager.
Amy: I'd like to add that I've recently been through this with my parents, and it was very helpful for me to do the first screening, then take my sister to visit places. I also made a big flip chart listing the pros and cons of each place. My parents got to see the final three choices and they helped make the decision (my dad has early stage dementia).
Comment from Dorothy: I have a father who is just beginning to exhibit signs of dementia. Forgot to go to lunch one day at his independent living facility, forgot that I had taken him to see a new assisted living facility we were proposing to move him to. It's very unsettling and disturbing. I think we are making this move just in the nick of time before he gets worse and settling into a new place would be that much harder.
Elinor: Dorothy, kudos to you and your family for working through this difficult time. Change can be hard for you and your dad. Be patient, remember that his forgetfulness is his disease and not him, and hang in there.
Amy: Dorothy, in terms of transitioning your dad to the new facility — try to keep to his routines. The more you can get him into the new routines but keep elements of the old, the better he will transition. Good for you for making the move now.
Question from Jane: We need to move my mom into care (dementia also), but she is in the U.K. and I am here. My brother is about three hours away from her. I think she should move near him, but he is concerned that she won't know anyone. What do you think?
Elinor: Jane, welcome to the world of long-distance caregiving. It's hard to know what's best when you're not there, and you both are probably right in your own ways. Remember what we want is what's best for your mom. If she's got a really strong support circle around her where she is, moving three hours away might be a problem. You also want your brother to be able to see her regularly. Maybe you try one setting and see how it works for a while before making a final decision.
Amy: Jane, I can also share that being nearby does make caregiving easier ... and if your mom has dementia, she will need increasing support and advocacy from you and your brother.
Question from Martha: My 70-year-old dad was diagnosed with dementia recently, but he's been showing symptoms for a few years. Some days he forgets how to write a check — how can I ask him to let me help manage his finances?
Amy: Martha, I have been through this with my dad too. It's a very tricky issue. I did it in stages. You might try first just offering to help sort the mail and bills. Then you might approach it as a support — not taking over. That was helpful with my dad. There is a dignity involved with financial matters. Gradually I took over balancing the checkbook and now I manage all the bills, but my dad has a separate account for his spending money. He used the ATM card for that for quite a while.
Question from Sandy: My parents refuse to talk to me about their advance directives, funeral plans and the like. How can I persuade them I have their best interests at heart? I'm afraid of something happening to them.
Elinor: Sandy, this is such an important issue and such an important family conversation — and such a difficult one. I find it works best if you open the conversation with "I" messages, just like you wrote in your question. Let them know how worried you are that something might happen to them before they've told you what their wishes are. Tell them you love them, you want the best for them, and you want the peace of mind that you know how they want to be cared for.
Question from Earnestine: My mother has more and more trouble with time and place orientation. I put a picture of my house (in D.C.) on her bulletin board (she's in N.C.), so when she asked where I was or why I couldnt drop by, I would tell her that I lived in the house on the bulletin board and that house was in D.C. For a while that worked great, especially when I told her that we were four hours apart, but now it doesnt have much meaning. Any thoughts?
Amy: Earnestine, it can be so frustrating (and kind of scary) when we see dementia progressing. There does come a point where trying to convince your mother about the "realities" of the situation won't be effective. There is an approach called "validation therapy," where you really just focus on validating what your mother is feeling. You can say, "Mom, I know you'd really like to see me and I'd like that, too." It often works to change the subject, honestly. Bring it around to something she's more comfortable with.
Question from HELP!: Where is there a list of resources for nursing homes? I'm at a loss and didn't expect my mom's stroke.
Elinor: You are in luck! Check out the medicare.gov website and look for "Nursing Homes" under the "Resource Locator" tab. You'll be able to see all the nursing homes in your area and compare them on their quality measures, such as controlling pain and even bedsores. And every community has a person to monitor and address issues in nursing homes. That's the long-term care ombudsman. To find the ombudsman in your area, go to eldercare.gov.
Amy: You might also find a local geriatric care manager or assisted living locator service (they do nursing homes too usually ) in your area to have someone show you local options.
Question from Bill, Texas: I believe there's a stigma that all caregivers are women. Do you think that's true? I look after my mom (84), who has cancer.
Elinor: Bill, you are right. Most people think caregiving is only a women's issue. AARP's research shows us that men are caregivers, too (40%), and that number has grown over time. Check out my column on male caregivers under aarp.org/ginzler. For men, caregiving can be even more of a juggling act, and many men who are working find it hard to balance.
Question from Ijamsville: My mother will be spending a few weeks with us around the holidays. We haven't seen her for about a year and her dementia is progressing. How can I prepare my kids (11 and 13) for the changes in her?
Amy: It can be confusing for children to see a grandparent with progressing dementia. It's a good idea to talk to your kids about what dementia is — changes in the brain. Explain that the changes in Grandma are the disease, not her. She is still the person they knew — just different now. Talk with your kids about specific things that may happen and how they may react. For example, if Grandma asks them the same question over and over, help them practice smiling and not trying to correct her and taking it in. Try to help them feel comfortable and also give them activity ideas to do with her that will keep her busy and keep them interacting. Role playing is a plus with kids — and remember to encourage them to keep their sense of humor and love.
Comment from Cheryl: Your local Alzheimer's Association may have good resources for kids.
Amy: Cheryl, thanks for the comment. The Alzheimer's Association can be a GREAT resource!
Question from Searching in OH: I've heard such horror stories re: home care workers. How can I find a good agency?
Elinor: No one wants to hire someone who won't take good care. It's so important to be comfortable with the people you choose to care for your loved ones. AARP's Caregiving Resource Center has tips for how to select a home care agency and a home care worker. Most importantly, be sure the agency is certified and licensed, and the workers bonded.
Amy: Another thing to keep in mind is that home care workers from an agency often change. It's a good idea to check in, monitor and keep up on each person who is going into your loved one's home on a regular basis.
Elinor: Here is another link with more specific information on hiring a home care worker.
Question from Elizabeth, Colo.: I want to take my mom's dog because of her mental state — she forgets to feed it or care for it. How can I do that? Or should I?
Amy: Elizabeth, it depends on if your mom is in her own home or in a facility. If she's in a place where there is some assistance, you can often work out with the aides to stop in and feed the dog. If your mom is in her own home, she may be offended if she thinks you don't think she's caring for her dog. I have this issue with my dad sometimes, and I simply go and put food in the doggie dish when Dad is busy with something else. He just sees the dog is eating and the dog is happy!
Elinor: Pets can be so helpful to people with dementia. Maybe there's a neighbor or volunteer in the community who can become a buddy to both your mom and her dog.
Comment from Karen: My mom has had some form of dementia for at least five years now. One of the hardest things my dad had to work through was my mom wanting to wear the same clothes over and over, and the fact that they were dirty. There are six kids so we try and visit as much as possible and give my dad a break. My mom doesn't understand why my dad would talk to her about the clothes she wears because it was never his thing at all — she always bought his clothes and did the laundry for everyone. My mom thought we were taking her clothes when we'd send them to the dry cleaners. If you have any advice on the subject, that would be great.
Elinor: This is such a tough one. And it sounds like you're doing the best you possibly can with a difficult situation. One idea to try to make this work would be to build in times to take her shopping for some new clothes (we all love a new wardrobe).
Amy: Elinor is right on with this. We used to have this problem with my grandmother. Distracting her with outings and other activities while clothes were laundered worked wonders!
Question from Stressed OUT!: I've lost 30 pounds caring for my mom. My hair is falling out and I fear I might lose my job. How can I manage the care and not be so stressed out all the time?
Amy: If only I had lost 30 pounds instead of gaining it! HA! Seriously, though, over the past year and a half I can share that I've gained 20 pounds and my hair has been falling out, too. It is a BIG wake-up call — pay attention! Your body is telling you that you need to take care of yourself ... or you won't be able to take care of your mom. Stop and make a plan for things that nurture you and rebuild your strength. You are giving so much, you need to fill back up again.
Elinor: And remember, you really can't do this all by yourself. One way to ask for some help is to get some friends together to share a meal. Make it a regular occasion, and tell them it's their job to make sure you eat a full meal each time you're together. You might even ask them to stock your shelves with food that's good for you and fun to eat. Here's a link to some tips for managing stress — hang in there.
Amy: And remember, there are caregiver support groups across the nation that can be real lifesavers. Contact your local area agency on aging (go to eldercare.gov to find yours) and ask about support groups.
Question from Debra: I make $85,000 a year but care for my dad full time. How can I get assistance? I'm going broke and break down crying when I get his bills. How come our legislators don't care about us?
Elinor: Debra, here's a link to some information about financial and legal resources. And remember, your community might have services available for low or no cost for your dad. To find out what he's eligible for, visit aarp.org/quicklink.
Comment from Regina, Rosemont, Ill.: You can receive FMLA job protection as caregiver for a parent, correct?
Elinor: Yes! FMLA stands for Family Medical Leave Act, and your parents are your family.
Amy: Check with your employer's human resources office to see how FMLA works.
Question from Sam: When we're out shopping or at a restaurant, people can be very rude if my dad is too slow to order and that type of thing. It makes me very frustrated (and saps my energy). How can I stay calm in those situations?
Amy: This can be so frustrating — how can people be so rude? When this happens, it's sometimes helpful to be direct and say that your father needs a little extra time. If you're comfortable, just say, "My father has dementia and we'll need extra time." Period. People will often feel badly that they were being impatient and you'll get more compassion. Even if you don't feel comfortable saying your father has dementia or Alzheimer's, you can still just explain that you need that person's help — enlist them — in supporting your father as he needs more time.
Comment from Cheryl, Colo.: Let them know when you sit down you would like extra time before ordering.
Question from Pat: I take care of my 94-year-old dad, who is in a wheelchair. He is hard of hearing, terrible memory. I work all day and then come home and take care of him. When I talk to him I have to yell and then he gets mad because I'm yelling at him. We can't have a conversation. Every five minutes it's Groundhog Day over and over. Is there any help anywhere?
Amy: Pat, it sounds exhausting! One thing to try might be adult day services. Your dad could be at the program during the day and then when he comes home and you come home from work, he will have had interaction during the day. Most times, people who attend adult day services are ready for quieter time and sleep in the evenings. He'd get social interaction with people who are trained to work with those who are hard of hearing or have dementia.
Elinor: And you need to find some time that is just for you. Even if you find a great adult day center for him, it sounds like your life is all about work and caregiving. Believe it or not, finding time for you to do something you want to do will make it easier for you to handle the frustrations of your dad's condition.
Amy: You can find an adult day services center by contacting your area agency on aging (eldercare.gov) or in the phone book. And you might also want to look at having a volunteer visit in the evenings — a third party might ease the tension some as well.
Question from Matt: My mom still lives by herself and deals with her mail by just piling it all up. When I visit, I have to sort through it all and often find important stuff buried. I'd like to have the mail redirected to me but she is very opposed to that idea. Any suggestions on how to bring her around, please?
Elinor: Matt, while it might be easier for you, if all her mail just goes to you it could end up being very disruptive in her life — and therefore yours. I hope you're able to see her regularly so you can stay on top of her bills. Consider this an opportunity for you to maintain regular visits, keep up on how she's doing, and spend some quality time with her after you've gone through that pile of mail.
Amy: Matt, also keep in mind that these things happen gradually — start as Elinor said spending time with her and sorting. Your mom may feel she is losing control of lots of things and doesn't want to lose control of her bills and mail. A friend of mine found with her mom that bringing in a "professional" to do this was less threatening than if she did it for her mom, so you might also consider that.
Question from Cathy, N.H.: We'd like to get some home care set up for my dad, but he's on a limited budget. From the little I know about Medicaid, I don't think he'd qualify. Who's going to pay for his care?
Elinor: Cathy, not only does he potentially not qualify for Medicaid, but Medicaid mostly pays for nursing home care. So to see what home care programs he may be eligible for, talk to your local aging office (eldercare.gov) or use AARP's Benefits QuickLink.
Amy: Sometime home-based services are also offered on a sliding-fee scale based on what your loved one can afford — so be sure to ask about that.
AARP Host: That's all the time we have for now, everyone. Unfortunately we couldn't answer all your questions, but feel free to connect with other caregivers in our Online Community.
We'd like to thanks Elinor and Amy for joining us today. Any parting words, hostesses?
Amy: It was my pleasure to participate — hope this was helpful to everyone!
Elinor: What a rich set of questions. You all are fabulous caregivers! Keep up the great work.
Amy: If I can be of further help to anyone, feel free to tweet me at amygoyer or send me a direct message in the AARP online community. And keep up with my caregiving adventures in my blog and columns as well.
Elinor: And check out my monthly caregiving column, aarp.org/ginzler for more information, tips and resources.
AARP Host: Thank you, all!
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