Hello! I apologize if this is listed under the wrong topic! Last night my family got my grandmother into a memory care unit at an assisted living facility. Over the course of the last several years, as I've talked to people at work, I've seen that so many of my coworkers are struggling with all of the issues surrounding elder care and dementia care and trying to make sense of everything while balancing the demands of their own family obligations, work, health issues, etc. The information is there, but it's hard to find at times, extremely complex and we're often in a state of emotional upheaval when we're trying to navigate the system. So as the leader of our corporate wellness team, I'm going to create a series of after-work, one hour workshops to address things like the differences between the types of care, understanding Medicare/Medicaid, in home care and it's benefits/shortcomings, POA, navigating family disagreements, etc. I want to end the series with a workshop built around the idea "how can I make things easier for my kids as I age."

I'm really interested to know what each of you sees as being essential topics to include in the series. What do you wish you would have known when you started on this journey? What nugget of information helped the most? This forum has been a huge and invaluable source of knowledge and a place from which I drew much strength in developing my advocacy skills. I want to arm my coworkers with the tools to make the tough decisions they'll face. Your help is irreplaceable.

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I learned several very important things here that every adult child if an elder should know:

1. You can say "no" to hospital discharge. It can be because it will be an "unsafe discharge" because there will be no one at home to care for the patient, or because they haven't addressed the problem that the patient came in for.

2. UTIs can cause psychiatric symptoms in elderly people.

3. A good geriatric psychiatrist may be the most important person to get on your parents' care team. They see the who patient, body, soul and mind. Your parent should have to suffer with anxiety, depression or panic. Psychic pain is PAIN and should be treated. Even if it means a Black Box drug.

4. Don't give up your livelihood or your marriage to become caregiver to your parent. Your parents' funds are their to fund their own care. Your retirement funds will be needed to fund yours. Everyone pays their own way.

5. If you HAVE to move a parent in with you, make sure that YOU have POA and access to their funds to pay for care. Not your sibling or step-parent. Set up a caregiving contract and room and board agreement with your parent BEFORE they move in.
Helpful Answer (14)
Reply to BarbBrooklyn

Two ideas I think should be mentioned are:

1. Boundaries, and why they are so important. Parents can make it difficult, and the caregiver must stand firm and enforce their boundaries, or they will be sucked in and under.

2. Dealing with hospital personnel who want to dump the care of the elder onto family members, when the person/family can no longer care for the elder. Make seminar attendees aware of the lies and promises that might be made by the hospital personnel ("There isn't anywhere available right now, but if you take him home I'll let you know as soon as I find something!"). The best time to have facility placement take place is often when the elder is hospitalized. If the hospital wants to release the elder who needs a lot of care, and the family can't/won't take responsibility, the key words to use by the family are, "This would be an unsafe discharge." That forces the hospital's hand, and they have to come up with another plan.
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Reply to CTTN55
onlyoneholly Jan 21, 2020
Agree absolutely with your observation. To add to this, get a subject expert to overview "Help Response" companies like Life Alert. Know what they can or cannot do. Know what info they will expect to know from you and your LO. Their services often are used in tandem with a trip to the ER. I learned a lot. One example is a call from them that " your LO has fallen and has been transported to the hospital." The problem is that they said they could not tell me which hospital. A "HIPPA rule"? I had full legal authority and they had those documents. Find out what the policy is for a company you would consider hiring.
One more comment -- make a phone list of hospitals and EMT services in your LO area ahead of time, just in case you are blindsided by a call.
After participating on this forum for a long time and going through almost every elder issue there is, what strikes me the most is how often the kids get just totally blind sided when the *#@)’#$ hits the fan. So a couple thoughts:

Have THE TALK early. Don’t wait till the neighbors are calling telling you about mom wandering the streets in her bathrobe. Sit down with you parents/loved ones and ask about end of life wishes, POA, Wills, bank accounts and so forth. Lay some track early.

Elders are not always cooperative. Well, hardly ever really. With my folks I had to do lots of covert operations to find important paperwork and financial info. And what I found was a big mess.

Dont wait for the official diagnosis of dementia to act. You see lots of posts here where elders supposedly don’t have dementia but are making horrible decisions. To avoid financial, driving, and medical disasters do as much as you can to mitigate.

DAD WILL GET SO MAD IF WE TAKE THE CAR/TAKEOVER HIS MONEY/GET IN HOME HELP etc, etc. You cannot allow poor decisions and/or dementia to run the show. Elders are going to have to make changes they don’t like. And it can be a battle. I learned to choose my battles. Didn’t win them all by a long shot.

I CANT LIE TO DAD......Yes you can. Fibbing is the only way to keep elders calm and help them as dementia develops. My folks would have died horrible deaths in a filthy house had I not done my daily theater.

Take advantage of the crisis. There will be a fall, stroke , car wreck, or any number of things that force a change. The change might be such things as ending the driving, getting in home help or moving to a care facility of some sort. My mom fell for the umpteenth time, went to the hospital and from there to assisted living. Huge fight, crying all that, but I held fast. No way that women was going back to that run down house. She was a two person assit at this point.

Realise that you can’t fix old age. We’re programmed from birth to do the best we possibly can for our kids and parents but you can’t fix everything. I read so many stories of folks chasing around for the right doc, right therapy, best drug, for their elders. I understand, I did some of that also. But at some point it really doesn’t matter that a 90 year with advanced dementia, COPD and heart failure eats a little too much ice cream or quits taking some drug or other.
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Reply to Windyridge
gdaughter Jan 21, 2020
Agree...and then there would be the great presentation: what happens if you HAVE NOT had the talk...and the first/best steps to take ASAP! LOL
A priority topic should be "Care for the Caregiver:". Maybe incorporate this into each of the other topics as well. The old analogy of parents putting on their oxygen masks in a plane before putting on their children's works well here, though analogies of child care and senior care don't extend very far. They are quite different. In itself it may be a topic worth presenting. Most of your audience probably have experience in child care. Some people make the error of thinking they are similar. In most respects they aren't.

Wellness for caregivers is vital. Research indicates that up to 40% of caregivers die before the person they care for. That is a sobering figure.

Boundaries for caregivers is another good topic.

You will find ideas if you scroll through this site. Good luck
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Reply to golden23
gmadorisylove Jan 17, 2020
Wow! Is that a current statistic? Where did you find that? Absolutely mind-blowing! Will definitely add your ideas to my list. Thank you for bringing this up!
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I have a few ideas for topics for you.
1. Someone from a Veterans Assistance Commission office to come in and explain some of the programs that are available to Veterans and the family.
2. An Elder Care Attorney to explain some of the processes that might be necessary. From Guardianship to Avoiding Guardianship, Trusts, Wills and all the rest of the stuff that no one wants to talk about.
3. Someone from Hospice. They can explain how much help that Hospice can provide, that it is not a "6 months or less" and that they will not "overdose and kill" your loved one.
4. Someone from the Alzheimer's Association that can hep explain dementia. They have a WONDERFUL program that takes a few weeks but it is so full of information. And include other groups. Parkinson's has a particular dementia, each dementia has it's quirks that people should know about.
5. Ask other employees to share their experiences, what they have learned navigating the quagmire that is care-giving. There will always be someone where you were 6 months ago and someone where you will be in 6 months. When I first started going to support groups I felt that it was a good day if someone was having a more difficult time than I was...and if I could help someone with what I had learned that was worth the education. We all learn from each other
Helpful Answer (7)
Reply to Grandma1954
gaknitter Jan 21, 2020
I would include a pre-need counselor from trusted local funeral home, not the pushy kind. There are at least 50 decisions that have to be made at time of death if no pre-need is in place. I had a pre-need policy for my mother. It took off such a burden at the time of her passing. She had been living with us for 9 months. You all know how difficult that was. Having the pre-need in place and all decisions made with her 9 months prior made a huge difference. It may not be an easy conversation but it's a very necessary one. I was only child, but I have heard of families almost coming to blows in arrangements conference, even local PD called, so getting things settled according to LO's wishes and preferences certainly saves arguments (or should!) You are very thoughtful to do this. I live in a 55+ neighborhood and am checking into getting an elder care lawyer, and Medicare specialist to come to a neighborhood luncheon to provide information and answer questions. I may add VA if I can find someone because we have several veterans. Good luck and let us know how it works out and how your efforts are received.
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To golden's point about a priority topic, a preceding topic needs to be, "Do your parents expect you to be their caregiver? Do you want to be? Should you be? What if you don't want to be??" And, "What is caregiving? Who is a caregiver?"

Most of the time aging parents make an assumption about (or have a very vague notion of) the transition into needing more help from family/friends/neighbors. Caregiving is something that most people slide into by tiny increments. Before people know it, they are providing (or receiving) full-time care. They shouldn't do this, but it happens for all sorts of reasons (especially cultural and financial). Caregiving *is* a vital topic but attendees will absolutely NOT (yet) see the "priority" nature of it until they are informed of what's coming their way and why they should care and prepare. They need to internalize other info and facts before seeing how caregiving relates to their futures.

A thought: you can have one or two "guest" speakers to make your seminar points more real. Find people who have done it "wrong" and who did it "right" and have them describe their journeys. Make sure you don't come across as "promoting" a certain service or product (so need disclaimers stated).
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Reply to Geaton777
gmadorisylove Jan 17, 2020
Guest speakers are absolutely part of the plan! And I agree 100% about making certain no products/services are endorsed or promoted.

You're so right! The decision to provide care needs to be intentional.
My Mother passed away about a year ago from Alzheimer's-related complications. Here are five main topics that I found important throughout this whole Alzheimer's experience.
1) . There is no new learning that you can expect from this person any longer. I tried to "train" my mother to save up her mail so that we could go through it together every few days. Big surprise/ It didn't work.
2) . Figure out finances and obtain POA and Durable Medical POA if you are even thinking of taking over your loved one's life and affairs. It's incredibly difficult and stressful even WITH these documents in place; do not attempt managing your loved one's affairs without both of these items in place.
3) . Reality. Grip it. You will need to keep telling yourself that this formerly capable person is no longer capable of making sound decisions for major life choices; you will need to step in and step UP to make decisions for them and be their advocate. Even though they may disagree or not agree, with any or all of your decisions. As an RN, my primary duty to my patients in the operating room was to be their advocate since they could not protect or defend themselves. You will need to act on this truth, for their benefit; again, even when the loved one does not agree and cannot fully or even partially understand why you are making certain plans/events take place. Examples include hiring help inside the home, or placing your loved one in a memory care facility, or taking away the car keys.
4) Know who your support system is (and who is not helpful or supportive), and try your best to not take out your grief, anger, sorrow/angst on any one person for too long. You may lose friends/support/loved ones if you " take it out" on any one person for too long. I speak from multiple personal experiences on this one. Attend support groups formal therapy, and/or online support groups as often as you can in order to keep your existing support system in place, and you will hopefully add to your trusted core of true friends/family.
5) Don't ever forget to give yourself a break; a break from guilt , anger, discouragement, and disappointment. You will make mistakes along the way and second-guess yourself. We are only human and this is going to be one of the most difficult journeys on which you have ever taken; you didn't even ask for it, but it's happening! It might be long, it might be short, but it will be difficult; make sure to pace yourself along the way.
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Reply to gemswinner12

Gmadorisylove, you have touched on a topic of passion for me! Our blended family went through a dumpster fire of chaos when we eventually figured out that my MIL and stepFIL's mental, physical and financial situation was collapsing all at the same time. The adult children were in our late 40's early 50's, we all had full-time jobs, kids in school, and we had no experience at all (yet) with senior issues, Medicare, Medicaid, social services, PoA, nursing homes, etc. I worked through my in-laws' issues almost full-time for 1-1/2 years to get them situated on all fronts, and learned a lot the hard way.

I thought seriously about starting a blog, but the problem is nobody really knows that they are "going to have a problem" until the problem begins, and then it's a mess and often too late. So how to get the word out to people to care about a pending storm when they don't think the storm even exists? This website has been a blessing in this regard, even though it's "after the fact". Better than nothing!

But I love your idea of doing it through your corporation as a seminar! May I suggest that what you title the seminar will be very important so that people will understand how this important info will benefit them and their LOs. The seminar not only makes things easier for their kids, it will make things easier for themselves. Also, please realize there are many more problems for people who do not have children or close relatives on whom they can rely! It is even more important for those people to get decisions made and legal ducks in a row earlier.

There is a lot of poor or no planning, romanticized/unrealistic notions of aging, full-on denial and special issues for those whose parents/LOs have issues such as alcoholism, mental illness, etc. Please make sure your seminar is geared for EVERYONE, not just those with children. Also, the older employees who attend this seminar may already be dealing with THEIR own aging parents or are on the cusp of doing so. Be ready to address their questions or have a follow-up seminar. Again, don't be surprised if this seminar is met with a yawn. People are not interested in the unsexy topic of aging, decline, dementia (ew!!) etc. and have wildly romanticized ideas of how they will be living out their post-retirement years. Do sent out a teaser in the seminar announcement that lists facts that will get their attention:

- XX% of Americans do not have the basic legal documents in place that allow LOs to help care for them
"This seminar outlines what those documents are, where you can find help for planning, and what happens if someone does not have those documents and then become incapacitated."

- statistics on dementia (because we are now living so long); facts about dementia; actual stories from actual people (you can anonymize some of the stories from this forum -- plenty to choose from!!)

- Is it ever "too late" to prepare? Yes and no! Important facts and how they WILL impact your senior years.


Something to this effect. People need to know the why such and such is important and what then happens if preparations are not made BEFORE a person tilts into dementia or physical impairment. No one knows when decline begins. No one believes it's going to be them or their (currently) healthy "fiercely independent" parent(s). It's the bad news/good news seminar. I wish you all the best! God bless you for recognizing the importance of this topic!
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Reply to Geaton777
disgustedtoo Jan 21, 2020
"...because we are now living so long..."

While this may be partially true, there are many who live to extended ages and show no signs, yet others are not even of early retirement age. The various dementias don't care how old you are. I do think more people should be made aware that this can happen to younger people too.

In my mother's MC facility, I was/am not aware of everyone's age (none of my business), but of those I did know, there were quite a few in their low-mid 70s, and at least 2 who are only early 60s. One woman, who was more on the ball than many, including my mother, moved in at age 99 and almost made it to 101! A bad fall was the probable cause of her demise.

I feel so bad for those who are younger, as they ARE being cheated out of their "golden" years. Mom had a good long run - it would be better NOT to have developed dementia, but at least she got 90+ years before that (she is 96 now, but not out of it yet.) She and my dad had a GREAT and LONG retirement!
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I see a lot of great information here about the needed topics to discuss. I’m not sure where you are located, but if you are in the United States, there are programs and services available through the National Older Americans Act. These programs are offered by the State Agencies on Aging. There are Area Agency on Aging(AAA) that provide assessment/evaluation for older adults and caregivers that can help.
There are other great resources at your local Aging and Disability Resource Centers (ADRC), also available through your AAA. (Housing, repairs, legal, heat/electricity, respite, case management, homemaker companion, transportation)
As for other topics to touch base on:
*behaviors (not showering) (repetition) (agitation) etc...
*Dementia education: effects all of the senses. (Can see but the connection to the brain from the eyes is damaged)(peripheral vision is lost) (Can hear but can’t understand)
Dementia is a set of symptoms caused by 80+ diseases. Diagnosis is key to treatment.
i have seen that many children do not want to talk with their parents about aging issues. I have many seniors that want to discuss end of life issues and the kids will not hear of it.
Another issue is gun safety.
Just a couple of ideas to help.
Cuddos to you for offering this help to people. It is more than needed.
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Reply to SueC123

Ha! The title of the seminar should be, "Why you absolutely must come to a seminar you think you don't need." ;-)

or, "Nobody gets out of here alive. Is your exit plan based in reality? Do you even have a plan??"

or, "Aging gracefully is B.S. Now what?"

or, "Statistics prove you probably aren't going to die peacefully in your sleep so you better come to this seminar."

or, "The 'I'm-never-going-to-age-or-die-so-I-don't-need-this-seminar' Seminar"

These are all tongue-in-cheek but you get my drift that the title needs to be somewhat arresting with a tiny bit of fear/guilt-inducing.
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Reply to Geaton777
gmadorisylove Jan 17, 2020
Hahahaha! Understood! Actually, I'd go to a seminar with any one of those titles, but maybe I'm weird that way!
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