"What I Wish I Knew" about Elder Care

Many times when I meet someone who learns about my profession is in senior living, it usually follows with a statement like "I really wish I knew about Aging Life Care Managers, Advance Directives, Adult Day, etc. when I was helping my Mom." Recently I gave a keynote speech at Senior Law Day and the theme of the entire conference was "What I Wish I Knew", which was truly brilliant! Join us for an on-demand recording using our live and interactive platform to explore this theme with real-life experiences, discussion, sharing, and offer peace of mind that there are others who have walked in similar shoes.

Powerpoint from program“What I Wish I Knew” (2).pdf

Contributors Comments:

• “I wish I knew that all the stuff I had didn’t really matter! It was so hard for me to think about downsizing because of my stuff, I delayed it for years. Feels great now!”
• “What I wish I knew is about Medicaid. We don't like to think it will be needed, but I've learned the hard way to act as if you will apply. It saves so much time and heartache.”
• “I wish my mom would have talked to an Elder Law Attorney. Not having things in place was a headache for me and my brother.”
• “I wish I knew is how siloed and specialized neurologists (probably any medical specialist) can be.”
• “What I’ve learned?  To push these folks for more answers and be a pest!”
• To get the power of attorney and joint on the account with survivorship before the crisis happens. 
• That some people (i.e. other family members) can’t cope and it’s ok to leave them out. It doesn’t have to be a democracy, rather, people step up for the things they are ABLE and willing to do.
• My role as an advocate for my mother, when to speak up and when to leave it to the professionals.
• That she was still her, even with diminished mental capacity.
• The importance of keeping up the connections she had before, with her church/friends, letting them know how she was doing. 
• The end of life stuff and that it’s not too scary. Hospice really helped. 

From Glenna Crooks:

We Wish We Knew…

• …that overwhelm can sneak up on you and then you ‘hit the wall’ suddenly and ‘out of the blue.’ One day you think you’re OK; the next day, you’re out of gas.
•  …how bad the physical, mental, and emotional health impact would be, not just for us but also for Mom.
• …how tough it would be as adult children (emphasis on “children”). Providing senior care is much harder than raising a child because of parent-child dynamics.
•  …that “helpers” we were so grateful to have would sabotage our efforts to provide Mom with the best care. 
• ...that it would be so hard to get the information we could trust about senior care, especially Assisted Living.
• …that Assisted Living would be so beneficial, not just for us but for Mom. 
• …that we adult kids could come through this respecting and loving one another and being a team.
• …how hard it would be to manage her affairs because authorities and others distrusted us and feared we might be involved in elder financial abuse. 
• …how useless self-care advice can be. 
• …what it would do to my business and the chaos it would create in my own “adulting” responsibilities.

Had We Known We Would Have…

• …set a broader goal to include doing what’s best for the entire family’s health, quality of life, and finances.
• …acted more like adults and less like children. 
• …recognized and dealt more aggressively to stop the saboteur. 
• …encouraged Mom to get primary care, which would have resulted in a diagnosis sooner. 
• …encouraged Mom to move to Assisted Living sooner.

From Craig Clark:

• Disability Insurance (as Steve reminded me) ‘it could happen to anyone’.
• Pictures – organize, some w labels/names/dates
• Notes – not just logistics but how you felt, what you learned, how it affected things for you and for others.
• Record & easy to find – Pictures. Agendas, Dates (BD, Anniversaries, Weddings, Graduations
• Simple and Small – how the importance is so often overlooked and forgotten
• Battery Chargers and Drainers – yours and friends, partners – I&E
• Belonging to Each Other, Connections – the importance of it, and how we do it, strengthen it.
• TODAY!
• Transitions, not Stop/Start
• Friends & Family – Give & Care
• Thank & Gratitude
• Collaboration
• Money/Expenses – MORE than you think
• Not Home = Younger, Act & Feel Better (Not being Alone & Isolated is Powerful) 
• One Foot in Front of the other and lead with Love.

One question was about ways to have a good talk especially about tough topics. Here are some tips that could help.

• Before that conversation ask about some things that happened in earlier years. Maybe about friends, family, fun things, good vacations, things that went well and that they might be proud of.

  • As we age short term memory can become challenged, but long term/older thing memories do much better. It can feel good to have a memory that came along pretty easily.

  • It’s good if the memories are about potentially positive things.

  • The big advantage of doing this step first is that it can ‘wake up’ and energize the person’s mind, heart and soul. When they are energized people are much more able and willing to have those ‘tough talks’.

• ‘Preface’ the talk with these things:

  • I’d like to talk WITH you about an important thing that people don’t talk about very often, but it is important so let’s BOTH do our best to listen, think and be careful and patient with each other.

  • I may pose some questions for you, but please understand that unless I say so, you don’t need to respond or answer things now. Sometimes your answers are better for both you and for me if you’ve had some time to think about them before coming up with an answer.

• Speak SLOWLY and think about including pauses. Hearing things that are ‘technically challenging’ and/or ‘emotionally loaded’ it takes more time to understand and to hear what is said. So, the slow speech and pauses allow the listener to do a better job with what was said.

• Be present and LISTEN CAREFULLY. Rather than being distracted by trying to make your point, instead be focused on what is being said, the emotional tone and what else might need to be said along with it.

• It might help to take notes if it seems appropriate to be doing this.

• Finish with a Recap/Summary to make sure your understanding is correct. Before starting it’s important to say something close to this; “I’d like to tell you what I think are the important things are from what we said. If you think any of what I say needs a change or correction please tell me. If you think I’ve missed something that’s important then please say so.

  • If it seems appropriate, you could add that you’ll type up some notes about what we’ve talked about and that you’ll share those notes with them.

Chat Transcript 

12:11:21     From  Mary Lee Anderson   to   Hosts and panelists : Should I Stay or Should I Go was the theme of Senior Law Day in 2021!

12:13:15     From  Joe Sperling : DO YOU WANT TO FEEL GREAT?

I’m Joe Sperling - “Protectionist”

I help folks protect what they love 

and what’s important:

Families- with LIFE INSURANCE

Income- with DISABILITY INSURANCE

Assets-with LONG-TERM CARE PLANS

PLEASE: put plans in place while you can!

Before it’s too late.

You will FEEL GREAT when you do.

YOU AND YOUR LOVED ONES MATTER.

Put protections in place.

Call me:   301-980-8869.

joe@joesperlinginsurance.com

I’m not your average Joe!

12:13:32     From  Diane Watson : I wish I knew that in Fairfax County, there's a number for Older Adults and Adults with Disabilities that can point me in the right direction for help and services I, or others can qualify for getting when needed 703-324-7948

12:19:11     From  G M   to   Hosts and panelists : I wish I’d known the impacts that long distance caregiving for my parents would have on my husband and children

12:19:22     From  Lauren Butler : How did the helpers sabotage?

12:21:12     From  Tiffany Oscar : What made self care useless and what did you do instead?

12:22:17     From  G M   to   Hosts and panelists : I wish I’d known that stopping out from work for 5 years to care for my parents would have a significant impact on my future social security earnings

12:23:58     From  Sonia Gow   to   Hosts and panelists : Steve, could you please post the PowerPoint slides separate from the recording? There's a lot of great information there.

12:24:24     From  Joe Sperling : Did your mom have long-term care insurance?

12:24:25     From  Sonia Gow   to   Hosts and panelists : Thanks :-)

12:26:20     From  Ken Silverstein : Hi Everyone--Happy Friday! Ken Silverstein, Friends Club--a nonprofit serving men with early to mid stage memory loss.  We are a social club located in Bethesda for over 30 years.  We meet three times per week and do have availability.  ken@friendsclubbethesda.org, 301-469-0070.  We are also seeking a part time office manager.

12:28:48     From  Joe Sperling : Everything takes more time than you expect when there is a care situation.

12:31:58     From  Craig Clark   to   Hosts and panelists : I have a list of things I can share if/when is appropriate

12:33:09     From  Tom Shipe : Tom Shipe, Realtor with Long & Foster Realtors

703-946-4844  tom.shipe@LNF.com

Co-Founding: Superior Options For Seniors (SOS)

https://www.superioroptions.org/

12:34:14     From  Glenna Crooks : @ Joe Sperling, no, Mom did not have LTC insurance. Mom has enough resources to cover any form of care she needs.

12:35:53     From  Joe Sperling : Have a list of the senior's electronic passwords.

12:36:17     From  Joan Green : Such wonderful advice is being shared. Thank you.

12:39:20     From  RH Levin   to   Hosts and panelists : This is great -so helpful - will you send out recording / PowerPoint as before - Much appreciated all - many thanks !

12:39:59     From  Casandra Key   to   Hosts and panelists : Excellent conversation and information

12:40:22     From  Karen Malkin   to   Hosts and panelists : Is it still important to get disability insurance when you have long term care insurance?

12:40:38     From  Joan Green : I can help families learn about options to leverage the benefits of tech to support older adults. Feel free to go to my website www.innovativespeech.com and sign up for a free 15 min consult. There are options to have text read aloud, turn speech into text, use smart assistants and smart speakers, simplified devices, apps for staying cognitively stimulated, and much more.

12:41:57     From  Mary Lee Anderson   to   Hosts and panelists : Share responsibilities with family members based on their strengths -

12:45:29     From  Joan Rubin-Kritz : People need to know--There are some great benefits of Medicare Advantage plans, BUT, there are also disadvantages- for instance, not being able to go to just any rehab or SNF, since the facility must have a contract with each specific managed Medicare plan, and the plans limit the number of facilities to which they issue contracts.

12:46:51     From  Lori Sutton   to   Hosts and panelists : As a geriatric therapist, I am not a fan of Medicare Advantage plans, generally speaking.

12:47:59     From  Craig Clark   to   Hosts and panelists : Steve, I just emailed a list of my things to you. Do with it what you want and nothing is OK

12:48:03     From  Sonia Gow   to   Hosts and panelists : Thank you for mentioning care managers Mary Lee! I was going to ask :-)

12:48:50     From  Catherine Boomer : The Coversation Project is a great free resource for EOL conversations

12:49:06     From  Sonia Gow   to   Hosts and panelists : Steve - you might want to do this Topic as a monthly series . . .

12:49:48     From  Catherine Boomer : Willow EOL is a more detailed, richer EOL curriculum

12:49:50     From  Tom DeMuth : Do you have any suggestions for finding a great aging life care manager?

12:52:28     From  Joe Sperling : YES!  Different coverages.

12:52:57     From  Joe Sperling : Steve- absolutely correct.

12:54:05     From  Sonia Gow   to   Hosts and panelists : medicare portal

12:55:02     From  Sonia Gow   to   Hosts and panelists : John Norce is with Medical Portal

12:55:04     From  Sonia Gow   to   Hosts and panelists : https://medicareportal.org/

12:55:12     From  G M   to   Hosts and panelists : My over-arching regret for my care partnering years with my parents is that I didn’t  discuss with mom and dad that the solution(s) we chose would impact the entire family system, not just mom and dad. That its a family system solution to make the best endings for them. Adult children are impacted emotionally and financially as are their young children. The solutions we chose could have been optimized.

12:55:23     From  Joe Sperling : EOL conversation can bring peace.

12:55:45     From  Jose Ramos : I guess the metric, the only thing that counts, is how the elder (Mom or Dad) felt about living and the dying in a facility?

12:56:18     From  Sonia Gow   to   Hosts and panelists : https://www.aginglifecare.org

12:56:20     From  Martha Cooper   to   Hosts and panelists : Some parents are mentally ill.  It makes decision making so much harder.   What approaches might be helpful?

12:56:35     From  Mimi Leinbach : This has been great, I agree. Make this a monthly conversation with a variety of speakers. You can not touch this topic too much! Thank you.

12:56:47     From  Cedar Dvorin : Every state has a SHIP- in Virginia we are called VICAP- free, government-funded  Medicare counseling. No insurance sales people may be part of the program.  To find a local program, call your Agency on Aging or go to https://www.shiphelp.org/

12:58:46     From  Ken Silverstein : It is SO important that caregivers/loved ones take care of themselves so they can be there for their loved one.

12:59:30     From  Catherine Boomer : A systems approach to Elder Care can be very enlightening. The Bowen Theory of Family Systems is a great resource

12:59:48     From  Sonia Gow   to   Hosts and panelists : Some elders don't want to talk about their future because they believe the "kids" will figure it out.

13:00:10     From  Sonia Gow : How to find an Aging Life Care Manager

13:00:12     From  Sonia Gow : https://www.aginglifecare.org//

13:00:46     From  Nancy Zatzman : Speaking as a family going through this challenge right now, our difficulty is in getting our 90+ yo parents on board with hiring an ALCM. Being depression babies, they are extremely resistant to the cost. They know they need help, but this is a hurdle that is very difficult to get over with them. Oh, and $$ is not a problem for them.

13:00:47     From  Sonia Gow : in the mid-Atlantic area https://www.midatlanticalca.org/

13:01:58     From  Jennifer Late : Our clients are often surprised to find out they need both legal power of attorney documents and financial attorney in fact forms at each financial institution such as banks, brokerage firms, and insurance companies

13:04:32     From  Steve Gurney - ProAging Community : From Sonia Gow to All Panelists 12:56 PM

https://www.aginglifecare.org

13:04:40     From  Kelly Lambert : Fantastic information. Thank you so very much!

13:04:42     From  G M   to   Hosts and panelists : Thank you Steve for your leadership in our community

13:04:42     From  Sonia Gow   to   Hosts and panelists : Way to go Steve!

13:04:46     From  Joe Sperling : This has been  a WOW program!

13:04:48     From  Ken Silverstein : Great program!!

13:05:07     From  Casandra Key   to   Hosts and panelists : so much!!

13:05:22     From  Jeannine Clark   to   Hosts and panelists : Fabulous information!  Thank you!

13:05:24     From  Aileen Klein : this was fabulous.  please do it again.

13:05:34     From  RH Levin : Always helpful - can’t wait for next -thanks