The Road to Elder Care: Preparing for Caregiving Webinar Chat Room Transcript Caregiving Challenges Participants were asked to make note in the chat or on their own for whom in their lives are they providing care. More than 100 people responded with answers ranging from aging parents, parents-inlaw, and grandparent, to spouse, aunt, or older adult child. Michelle: How to help when in another state and your sibling is carrying all the weight on taking care of Mom? Angie: Michelle, that s our situation EXACTLY. Regina: Mom has dementia (6 years now). I made sure to get power of attorney and am health proxy. Very important to do now. Angie: Regina, trying to do that now with my own mom, but only brave enough because I have seen how rough/bad it can be without that POA. Regina: Angie, get it as soon as possible or have someone you trust get her to sign it now. LaDonna: Here s the Five Wishes link Elise just mentioned: https://www.agingwithdignity.org/five-wishes/about-five-wishes Tracy: My mom completed the 5 wishes; it s very helpful. Angie: Regina, she s coming to visit next week and I m going to broach it again. Tracy, very lucky, that helps me know it can be done while my Mom is healthy. Regina: Angie, just tell her you want to hold on to it for her benefit and only if she sees the importance of it. Angie: Regina, I like that idea; fortunately she s 100% still intact (unlike my mom in law, who is in full stage Alzheimer s). LaShawn: What do you do if the person is already mentally incapacitated with dementia? Cindy: Once dementia starts, it s almost too late to get things ready. So, yes get the legal, financial, and health/end of life plans clear and ready while folks are able to participate.
Legal Matters As the webinar guest speaker described the main legal documents that proactive caregivers could complete will, living will, power of attorney, health care proxy participants offered their advice about how they tackled legal documents. Genevieve: Do any legal documents trump the other? Cheryl: Make sure the living will and Health Care POA don t conflict. I had this issue when my mother was dying. Nina: What is the difference between a living will and a regular will? Alexandra: Nina, a living will, also called a directive to physicians or advance directive, is a document that lets people state their wishes for end-of-life medical care, in case they become unable to communicate their decisions. It has no power after death. Atiyah: I m about to marry someone whose parents have no will, living will or proxy. How can I encourage this conversation when it s not my parent? They ve tried and the parents don t want to deal with it. Big house, four sons = potential trouble. Chris: A Trust is better than a will. Wills can be contested and the estate taxed; trusts cannot be contested and taxes are not taken from them. Jeffery: Trusts are taxable entities. Regina: My understanding is that trusts are also taxed but not public record and not contested. LaDonna: Health care proxy designates someone to help make medical decisions. LaDonna: Living will gives direction to the proxy. LaDonna: Durable power of attorney is good through incapacity. LaDonna: A will outlines the final desires about how to distribute, what, and to whom. Tracy: I recorded the durable POA at county courthouse. Joseph: I did mine on LegalZoom. It was simple. Lynett: I did LegalZoom also. Much cheaper and same verbiage as lawyer-derived will. Vivian: My work offers legal services; you pay $x per month, but then can get simple legal services for free, so that s how I got will, POA, and living will for my husband and me.
Financial Matters Participants posed a few ideas for others who need help navigating the financial management aspect of caregiving, such as helping loved ones access their money for everyday use to more complex issues around money and asset management. Kathleen: I have my dad s and my accounts at the same bank linked so that I have access. I also pay his bills online and monitor his deposits. Kathleen: My mother died suddenly 14 years ago so afterward my brother and I worked with our dad to set up his will, POA, medical POA and banking. My mom did the monthly bills so it made sense for one of us to do it instead of having my dad try to learn at age 60. Jo Ann: If I m listed on my father s checking and savings accounts, do I need a separate POA? Kathleen: Jo Ann, yes it is a legal form, not related to banking. Health Matters Participants shared their concerns and tips about managing various aspects of health matters, and honed in on the importance of having a health care proxy and how to manage once one is in place. Veronica: When presenting the health care proxy documents to the physician(s) (in a time of need), is it best to have the actual original documents on hand to present to the doctors? Can you explain how that is handled in a hospital event? Elizabeth: POAs are useful for signing any document on behalf of your loved one. Marguerite: It s a good idea to run a credit check once you have POA. It lets you know what credit cards and accounts are out there. It was an eye opener when my Mom had her life event. Regina: Veronica, you can give them a copy to have on file. You keep the original. Genevieve: Veronica, you can give the hospital a copy when you get there. Their primary care should have a copy on file. Loret: We have all legal documents in the cloud with family access by all in the event that something happens, everyone has access to all medical information, proxy, etc. Christine: Loret, what do you do about cloud security? Loret: We have our own encrypted cloud with exclusive permissions. Elizabeth: Loret --- smart!
Managing Prescriptions Storing, tracking, obtaining, and adhering to medication prescriptions were on the minds of participants, who exchanged ideas on how to help those for whom they provide care ensure they are receiving and taking the medications they need. Sean: It would be good to put medication info on a sheet of paper and keep it on the fridge. I needed the info for an ambulance when my dad had a stroke. Better to have it on hand. Genevieve: There are apps that you can put on your phone where you can keep a list of your loved ones medication. Susan: I keep Rx in the Notes on my phone. Teri: Epocrates is a fantastic app to learn more about medications. Carmen: At CVS, you can keep track of others medications. It is great. Laura: My parents have their meds in a list on the fridge. Handy!! Genevieve: The app I found is called Care Zone. Barbara: I carry a list of mom s meds with me at all times and there is a list in the clinic where she lives. Elisa: Have you heard about the medication packets that organize medications by dosage and date and time? It s called PillPack. Zoe: Online MyChart. Michelle: You can purchase a bill dispensing machine that has an alarm on it. It signals and dispenses the med only at the right time. Susan: Those weeklong daily pill cases are key. (MTWTHFSS) Anjuli: Elisa, yes - it s awesome. Ann: Better than a clipboard is a plastic file folder with elastic band. You can file by topic and take the entire folder with you to every appointment or encounter. Lucy: There is a company that operates in certain states called ExactCare. They organize all the meds, refills, etc., and send a monthly delivery organized by date, time of day, etc., in individual packets. Julie: My mother s pharmacy make up weekly bubble packs of her medications so all she has to do is pop out each day s pills. It s a godsend.
Insurance Matters The webinar guest speaker covered several aspects of insurance matters for caregivers to be aware of and raised issues that relate specifically to veterans, such as getting permanent authorization and accessing VA benefits. Participants exchanged their own experiences working with the VA. Regina: I have gone to SSI and put myself as the financial representative. Believe it or not, the POA was not accepted at SSI. Cindy: The VA gives certain elder housing financial benefits if certain conditions are met. Contact the VA. It can help. Some senior living areas offer health care by the 15 minute level. Check it out before you move a loved one somewhere. Chris: We had a doctor write a letter saying my dad was incapable and SSI accepted that. Jill: Be prepared for VA to take a LONG TIME to take effect! Mari: Thanks, Jill, that s good advice as we are reviewing my parents and my husband s insurance coverage. Michelle: You can get the SSI form online and directions. Home Safety Matters Participants shared common home safety issues they encountered caring for someone who lives at home and quick tips to help them safely living at home, as well as asked each other about how to get much needed home repairs done as their loved ones age, and considerations for elder community living. Cynthia: What about risk for falls? Barbara: Cynthia, my mom wears a pendant distributed in her community that alerts security if she falls. She is a fall risk. Liz: My grandmother doesn t like to go out. It s important to keep windows open and keep suggesting going outside or out to lunch. Try to bring activities outdoors, i.e., reading the newspaper or playing games such as checkers. Judi: My mother is in decent shape and I m concerned with the social isolation. She walks the neighbor s dog for them while they are at work, but it seems she plans much of her day around this task, and doesn t socialize much beyond that.
Home Safety Matters (continued) Vivian: My husband is still with it enough to walk the neighborhood, so that s his social outlet: he walks the cute little dog and chats with the neighbors. Lisa: Bathroom rugs are also significant to secure to the floor. (And they absolutely need a slip resistant bathmat for inside the tub as well.) Cindy: You might have to take the car keys away at some point and run errands for them. Bruce: We put a phone in each room. This way my mom can access one if someone calls without having to rush. Sara: Making the bed is high risk for falls. Nina: My mom needs repairs done to her home. Is there a list of contactors that can be provided that won t cost you an arm and a leg that have a state license? Rosa: Nina, I need the same. My dad s house needs a lot of work. Ginger: If your parents have access to VA benefits, the VA can help with the expense of retrofitting house upgrades for safety. Judi: I ve also used contractors from homeadvisor.com for my mom s house. Jeanie: Any suggestions for convincing a parent it s time to move to an elder community? S.: Jeanie, have them visit someone you know and see for themselves how it is in the elder care home. Kelley: Jeanie, my problem with moving my grandmother to an elder system/nursing home is that my aunts are against moving my grandmother to one of these facilities, so that leaves my mom (POA) in a bad spot. Tammy: Senior housing has worked out well for my mom. Inexpensive, but still lives very independently and they offer lots of good services (e.g. tax prep support). Arlene: You could also visit someone who lives in a facility that you are considering. Jo Ann: What is the difference between long term care and hospice care in a nursing facility? Vivian: Hospice care: they keep you comfortable while you die. Long term care: you re not able to take care of yourself, but you may still live a long time. Barbara: Jo Ann, where my mom lives long term care is out of pocket until a person is on Medicaid; hospice care is covered by Medicaid or Medicare, depending on the situation.
Managing Emotions Practical matters were at the center of the webinar discussion, but participants also helped each other out by openly bringing emotional issues to the conversations and giving each other helpful words of reassurance and encouragement. Stephanie: How do you mentally prepare for and cope with parent s aging? Genevieve: Stephanie, the best way to prepare mentally is to make sure all these things are taken care of ahead of time. Trying to deal with everything when things are going crazy is VERY overwhelming! Vivian: Stephanie, have a meeting and dole out the responsibilities instead of dumping it all on one person. Laura: Stephanie, that is why we try to take care of these practical things ahead of time so we can worry about emotional issues as they arise. Vanessa: This is very overwhelming. I see I am not alone in this. Liz: Y all, this work is tough. We will all be old at some point, so important to keep that in mind as we care for others! Angie: All of this is making me think about my husband and I should be doing it now for the kids. Angie: I wish this was an ongoing chat! I can t say how relieved I feel just hearing so many other people in this same situation...overwhelmed, nervous, afraid, etc. Susan: Nice to know we re not alone. Gotta keep talking and sharing. Think I ll get a happy hour up with friends in same boat. Susan Alison: Good luck, everyone. Easy to get frustrated. Find your own peace and take care of you, too!