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.
Atul Gwande's "Being Mortal - Illness, Medicine, and What Matters in the End"
As a health professional, the beautiful gems, the gold nuggets, that this wonderful author offered up, have helped me to deal with the challenges of supporting my own elderly parents, and come to terms with some of the tough decisions. I also give the book to my patients' families - the feedback I get is always positive.
This is a deeply moving book, by an internationally acclaimed author who is a physician and surgeon, who describes his own personal journey, and insights from his work with families on their journeys.
Also, like somebody already mentioned, find out what LO's final wishes are. Do they want a funeral, celebration of life, normal burial, natural burial, at home funeral, cremation etc. How much can the family afford for a funeral? Maybe bring somebody in from a funeral home.
Interesting youtube channel to check out, Ask a Mortician. Caitlin Doughty is a mortician and has videos up about all sorts of things. Low cost alternatives to a traditional funeral, what the family can request and how to become more involved, what happens to the body, etc. She has interesting videos about various topics, including historical subjects.
Here's a video talking about death denial and overcoming it.
https://www.youtube.com/watch?v=0WOyFErcTHU
Also, a big one we've run into, get somebody in from the VA that can explain the types of benefits, what you need to get them, and what paperwork to fill out. It's pages of paperwork and the paperwork is different depending on who is applying for benefits.
Other topics:
How to get the car keys away from a family member who should not longer be driving.
Getting your loved one to the doctor, grocery shopping, errands etc.
comes in.
From there, each seminar should cover one topic, such as those suggested (Medicare, Medicaid, Elder Care atty, options for care, setting aside funds just in case, other benefits such as VA.)
Dementia covers so many different conditions and each has its own course, so this may need multiple seminars - start with overview and what to watch for. In retrospect, there were some very subtle signs for our mother that were missed. It was repetition during phone calls that got me investigating online. Bros were not totally on board.
Have another session also for dealing with resistant/difficult family members! There are so many on this forum who have BIG issues with family!
Another segment dealing with guilt, boundaries and "Reality." Some feel guilt, can't draw the lines needed, etc. How to respond when their reality is out of touch (thinking LOs are still alive, seeing, hearing or imagining things, unfounded fears.) Some insist we tell the truth - fine if someone is okay cognitively. I don't see the point in upsetting mom every time she brings up someone long gone! She won't remember and will just suffer every time. It IS okay to fib a little, when necessary.
Another difficult topic is getting the LO to move when it is time. Mom's plans included AL at some point, until dementia took over. I found this site because she refused ANY move and EC atty told us we couldn't force her, despite having DPOA (many here think this allows you to do this! It doesn't.)
Having an expert in the topic covered present at these seminars would be great! I might also suggest, if possible, the attendees bring their LOs (at the least have handouts that can be shared later.)
There are so many on both sides of these issues who are resistant. Parents who don't want to set things up (fear someone will take over, don't think it is needed, etc.) Family members either in denial and/or critical/resistant to everything that is sensible. Resources for how to deal with those resistant would be nice to have. In our case, mom was having a hard time trying to care for dad. He wasn't out of it or needing excessive care, but still. She many times mentioned an EC atty, so I took the name, looked him up and called. He was then only doing seminars to teach others, but they referred me to another. We used them to help mom & dad. It was helpful for me later. Doing lookup on dementia filled in the gaps, over time.
We should be aware, on some level, of what our LOs conditions might be, what medications they take, etc, as well as discussing financials, final wishes, etc. Many are resistant to "give up" this info, but it doesn't need to be detailed. At the very least, know what banks (mom had account at a bank with SS funds and others at a CU), what insurance do they have, is there life and/or LTC insurance policies. IF possible, help them organize everything, for access if/when needed. When they are still lucid, but resistant, explain it simply: IF something happens to you, such as accident or severe illness, how will we care for you? Dementia does NOT have to come up, but it can't hurt if it hasn't happened yet. We never mentioned the word to mom, as to her it meant you were crazy, which isn't true. WE all need to do this ourselves as we don't know what the future holds for us. IF possible, encourage the LOs to join you when you set up your own Will, POAs, etc. This might help convince them it is a good thing to do!
In general ANY federal entity does NOT honor ANY kind of POA. Because mom already had dementia and we moved her, in order to change her address (for documents, etc, which cannot be forwarded by Postal Service), I had to sign up as SS Rep Payee. Many say if you have access to their account, this isn't needed. On non-legal level, no, but if you check into this, SS DOES require it. It may never become an issue, but they consider these funds THAT person's and unless you are Rep Payee, you have NO legal business touching it. It was for me a simple process: call local office, set up appt, answer questions they ask and wait for approval. The difficult part was setting up the special acct needed, but that was the CU problem. They do require yearly accounting, which can be done online. Keep good records on how the SS funds were spent, no big deal. For mom it was simple: SS and pension cover SOME of her facility charge, trust fund covers the rest and any other expenses, so I only have to report that ALL SS funds were used for food/rent.
Side note: her bank and CU had no issue with the DPOA. Some people report banks won't honor the DPOA. If that were the case, I would get the EC atty on their case! Most billing was also simple to change the billing (not service) address. The only exception was her Credit Card. They allowed SOME activities (phone query, cancel card, freeze or close account) but would NOT allow me online access. I even requested THEY set up alerts, so I would know when to check by phone, but they denied that as well. At the time we set up DPOA, it likely wasn't an issue, but I believe it can be written up to give "electronic" access - whether they comply or not is the question. They can deny, because if you ever read the disclosures, only the "owner" of the account can create online accounts (applies to CCs and SS, probably others as well.)
In mom's case, the pension was dad's federal pension - this was even more difficult to do, but once completed they have allowed her funds to go to the same CU acct and I manage it from there.
Setting up the trust was also fairly easy with the EC atty. It has served us VERY well! That said, I learned something new this year. SS does a 2 year look back and they consider the trust funds being deposited to cover her facility as INCOME and therefore are charging her MORE for Medicare. WTH? I even said to the woman that this wouldn't be an issue if we'd left the money in her account!! It ISN'T really income - not all of it. Any investment return, sure, but MOST of the money there was HERs! This is more a warning to others, so they are not blindsided.
Another side note: IF possible, work with LOs in clearing out junk and unneeded items and help with cleaning! Some are semi or full hoarders, or resist help, so this may pose problems. Worst case is you get stuck clearing it all out later. We had that happen - it took over 1.5 years to clean/clear/repair the condo to sell it.
Forgot to touch on driving in the first post - this IS a very touchy issue. Would be great if the states all had a common rule about it and made it easier for us to cross this hurdle! Many say take the car/keys away. Others say we can't, it isn't legal. Some states require doctor to report, but many docs don't want to get involved. Mom's state at the time required self-reporting! What person is going to tell the DMV they have dementia and need to stop driving??? We were able to take the keys, then the car, with just flak from mom about it. She didn't have the capability to consider reporting it stolen!
Consider VERY carefully before attempting to care for a LO in their home or yours. What may seem easy enough at the onset could become overwhelming! If you get paid, be sure to have a legal contract stating duties and pay rate(s).
Sure, torture my mother over and over telling her that her mother passed ~40 years ago! Even more recently she brought up her younger sister (all in her generation on both sides have passed on, some in mine too!) She summed it up with 'She must be busy with that baby.' She would be referring to my cousin's second child - both had a form of MD, but the second one was dependent on all care. That "baby" would be close to 40 by now!
Even if the issue isn't related to other relatives, any way to soothe them while 'living' in their reality is what it takes. You can't argue with them. You can't convince them. If safety issues arise, it is more critical to have skills to circumvent what they might be doing. That was a great idea about the phone call! She would likely react to that and scurry home, but of course in short order forget about it! Distractions. Refocus them on something they CAN relate to, get their mind off whatever they were fixated on. My nose hasn't grown yet!!!
In addition, there may be employees whose parents are not here legally and may not be entitled to Medicaid/Medicare. This can be a very sensitive subject.
I wish you and your firm the best.
For what it's worth, I look at being a health care provider as a small business. You need to be assured of the quality and availability of help; don't do this alone! You need to be assured of your financial ability to carry out the responsibility; as you go forward your finances will be tested. You need to have backup that you can call on to replace you temporarily so that you can take a respite from the daily tasks. And probably most of all, you need a desire to do this service and follow it through, to face the unexpected and change the operations accordingly. You need a cheering section, spiritual support, or whatever it takes to keep you positive about the task.
I hope your idea of an after-hours seminar works out. I think you have a good idea and will be able to set it up and encourage people to participate.
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
It is a wide field, so I think it depends on how many sessions there are, featuring a set of subjects each time, or having the colleagues each submit their questions or wishes ahead of time.
If it is a form of support, then have everyone have the peace to talk and share their challenges, and know they are not alone. Share one another's tips, warnings, successful experiences.
For homecare or assisted living, reaching out yo specialists could be useful, perhaps through the local Senior Center or Alzheimer's organization. Especially the Alzheimer's Association or similar organization must have many suggestions and guidance on what to address.
- Power of Attorney, Guardianship (Elder Law Attorney), Health Proxy: these are important topics I myself am still in an exhausting process of sorting and finding a proper attorney for.
- Learning how to stay up in spirits and not to feel overwhelmed caring and dealing with the loved one's anger, agitation, violence.
- Memory clinics or general tips like puzzles, concerts, card games, coloring books. For my case, music with participation has been overall one of the best things. Gives them a fun challenge with participation and joy of music. Really works the brain.
...I think there are just so many topics to list, I'll stop here. Again, such a broad topic, so again I suggest you have colleagues submit what they need addressed.
Beat of luck, and hope you have enthusiastic guest speakers (or who give you the info to share at least), and attendees who will benefit.
This is so good of you to want to help others, which would be so helpful for more work places to do.
Kesp us up to date! Thanks.
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.
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.
I found with Mom that she had a UTI and did not even know it, doc found it in a check up.
She also was on long term (months) antibiotic for eye surgery and had massive decline both mentally and physically. Shortly after we removed antibiotic she bounced right back!
Contact groups that can set up a table or speak, like elder law, geriatric medicine etc.
Round 1: Mom is in MC and is rather mild-mannered, easy going there, but suddenly (on a Friday evening of course, after doc office hours!) developed raging sun-downing. Mornings, ok, afternoons/evenings, out of control! She had to take anti-anxiety meds along with the antibiotics until the UTI cleared.
Round 2: Sudden onset of night-time bed wetting. Once UTI is treated, bed wetting stopped. Nurse is now aware of this and on top of it! Mom did start again with the bed wetting, so the nurse scheduled a test for UTI - yup.
Antibiotics CAN be a problem. My mother AND my daughter are allergic to the Mycins (found out when daughter was a baby and then mom revealed she also couldn't take them.) Brother was allergic to penicillin and/or the sulpha. ANY medication can cause issues, if a person is allergic - even worse when it isn't known! While in the hospital, they kept shooting me up with Heparin. I don't mind needles, but these were especially painful (back of arm or abdomen is the usual locations for these.) After they had to bandage the left arm, the right became black marbles, elbow to armpit... Meanwhile, hematologist came to discuss my platelets, which were normal on in-take and have shot sky high. Usually this would cause them to drop, not rise. Um, you are the doc, I am not allowed to eat, so it HAS to be something YOU people are doing! Last shot was taken in the abdomen, and I developed a hematoma! Needless to say, the Heparin shots stopped. I now list this as a allergen for me (it is possible dad was also allergic to some blood thinner - he was to take various meds forever after heart surgery and in the end he was down to baby aspirin.)
I relate my experience because I was not that old or demented. Imagine a person with dementia or a baby going through this - they might not have the where-withal to express any complaint or concern!
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.
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.
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.
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.
As the only daughter who cared for my parents, I would like to say that I feel it is unfair for a daughter to do everything! Be fair with your children.
Don’t automatically expect children to be caregivers. It’s a huge responsibility with huge sacrifices as well.
Stop trying to force children in the family to have a relationship with one another if they aren’t compatible for valid reasons. That is selfish of the parent to want siblings to attend holiday dinners when they have been nothing but disrespectful.
Cooperate with your children. Stop making them plead and beg for things. It’s give and take. Give respect to receive it.
Make sure all legal forms are in order.
Respect that caregivers need respite.
These are just a few things. Not sure if I expressed my feelings well. It’s not easy being a caregiver. Not as simple as it may appear to be. I truly wasn’t as prepared as I should have been.
So thank you so very much for organizing this meeting. Wonderful idea and much needed!
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).
You're so right! The decision to provide care needs to be intentional.
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
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.
Thank you, Geaton777, for responding! Interested to know, now that you see it's a series, what you would title the series, and what series topics you think would be most valuable.
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.
etc.
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!
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!