What do you think could be done to better educate others on how difficult it is to be a primary caregiver to the elderly?

I believe part of the reason for a lack of a "how-to" book is that the issues common to most caregiving situations are already quite well-addressed in many places such as this forum, while the fact that there are so many individual differences (family dynamics, health issues, personalities, presence or lack of dementia, availability of outside help and other resources, financial circumstances--the list goes on) that they would be impractical or impossible to catalogue or describe in a book. For example, as the saying goes, if you've seen one case of dementia--you've seen ONE CASE!

Frankly, I would refer anyone seeking this kind of information in general to this forum because practically every relevant topic is either addressed here or a reference to an outside source offered--and if not, one can post a question!

I found PeeWee57's comment helpful in that it points out the fact that we can't learn/know everything, we have no idea what the future holds for any of us and even if we have tons of information on hand, there's no way to know if any of it will be useful in our own circumstances. It is too often an OJT job. Even raising 2 kids myself, I am well aware that each was unique and caring for one did not translate to caring for the other, at least not in the earlier days! As they got older, it was easier, BUT still had differences in how to deal with issues that came up. No two people are alike. Personality, relationships and resources all play a part. Sometimes there is no answer to what we need!

Grandma1954:
"Talks like this are just as important as the "Birds and the Bees", maybe even more so."

THIS is what we, who have been through the challenges, need to pass on to our kids, if we have them (or anyone else who will listen!) Highlights should be how to pre-arrange what we want for ourselves, and useful places to find the information we/they need to implement our wishes. In the past, many topics were hush-hush and whitewashed. The time for that is long past. We need to be able to educate everyone we can, whether they are family or not. Everyone needs to know what tools are out there to assist them.

Tryingmybest:
"I guess what I am saying is that we are the ones responsible for educating the next generation and it is our responsibility to do all we can to prevent our stories from repeating. Oh! and write to your legislators they are clueless and need to be educated as well"

As Grandma1954 posted, yes, we need to educate those that we can. I do agree that legislators need to be informed (the current admin wants to implement changes and help, but it isn't nearly enough and hasn't been passed.) I wrote to my rep and both Senators regarding dementia and to encourage passing this and other legislation. The rep cared for her own mother during her journey with this. Sadly two have not responded and the one response I did get was totally OFF TOPIC! First sentence in the response: "Thank you for contacting my office about the federal minimum wage." WTF? I wrote back and pointed out that this is NOT what I wrote about! We shall see if I get another response, hopefully ON TOPIC!

I truly wish there was a way to reply to a comment the way we can reply to a comment under Posts.

This is one of the reasons that I still come to this site, still try to connect with the caregivers that have been in my support groups, why given a chance I talk to people in the store, out for a walk.
If I can pass on even 1 bit of information that I had to learn the hard way and possibly prevent someone to have to go through what I went through..
This is why I try to get people to take advantage of services like Hospice, the VA...
I have walked the path, if I can help ease the path for someone, great! Why blaze a new trail when there is already one there.

Grandma1954

It is very kind of you to pass along knowledge. All of us learn things along our journey and continue to learn long afterwards. It is always good to share information.

Every situation is different and we have to tailor information and use what we can to fit our own needs.

Also, I am the OP. I put this in the ‘questions’ category and the mods moved it. That happens sometimes.

Sadly, I believe the foundational answers are:

Firstly, we do not value women/women's 'work' and women are usually the ones who end up providing the care.

Secondly, this country / culture does NOT value human life - as one ages. In some cultures, elders are revered, respected, cared for - If we did, as a nation, everything would be different. We would require higher wages, perhaps similar to those of a social worker/nurse . . . there would be more (and) AFFORDABLE medical care and housing available.

It is a really good question. Caregiving is 'more in the news' these days although it requires a huge shift in national consciousness - to change - to honor our elders.

LittleOrchid,

That is a wonderful point!

marymary,

I have heard a few public service announcements on behalf of caregivers and I liked them. There haven’t been enough to make a dent. I truly went into caregiving blind. I didn’t find this forum until I was far into my caregiving years.

Great idea with actors or any other notable people bringing light to the subject.

I think it would be good to get YouTube video's from us care givers to share so that they can learn.

NOTHING, however will prepare them for the experience.

I read up on and talked with so many experienced tree planters before becoming one and boy did that educate me. It was the same thing going to teach in China.

We can offer them all the help we can but nothing will prepare them for the personal experience.

There's just three ways to go once you're too old or sick to live by yourself.
1. Hire Caregivers very costly.
2. Live with someone willing to care for you.
3. Go live in a Senior Home, only if you don't have option 1 or 2.
Best thing to do is save your money so you can live in your own home and hire 24 7 Caregivers or a Live In Caregiver.

I have gotten a lot of encouragement by reading these testimonies and questions. Sometimes it seems that information about the care of animals and concerns about animal abuse is more readily available and publicized than care of our elderly. Just a quick observation. Thank you.

When I volunteered at the Agency on Aging, I met Dr. Beverly Kidder and attended her courses on caregiving and communications. She was a caregiver for her mom and her late husband. Dr. Kidder is a very thoughtful, compassionate person. Based on her professional and life experiences, she shares many insights in her book "The Gift of Caregiving".

Many larger towns/cities have a department of aging to help the elderly and their families.

Our focus should be on educating those we can, friends, family, co-workers, anyone really, whoever will listen, AND making plans for our own future. None of us know what the future holds, so we have to consider various scenarios. When working with the EC atty, I know there was a multiple page chart with various medical issues and one needed to indicate what their treatment preferences were for each one. This was NOT passed on to me when the "package" came - only the POAs, HIPPA, will and trust documents were sent. I did know my parent didn't want extraordinary efforts, but nothing detailed.

My parents and mom's sisters cared for their mother, taking turns. They were pre-retirement, but mostly "empty nesters" and Nana was easy to care for. She passed probably age late 70s. My parents had a LONG and wonderful retirement together! When dad began having issues, mom tried at home, but eventually he was in a NH. She'd often complain about the care and say she could do better, but never did anything about it. I doubt she could've done it, being much shorter, in her upper 80s, with osteoporosis and high BP. For me, I was on the cusp of retiring. Too old and with my own physical limitations to even consider it being doable. So, I did the best I could managing everything instead. I had to learn all about dementia from ground ZERO.

There were times after he passed that she mentioned AL, so it WAS in her plans to move, when she felt the time was right. Enter dementia. All bets are off. She's fine. She can care for herself. AL was akin to a prison hovel in the ground. Despite our own best laid plans, we DO need to be sure those plans take this into account. I've made it clear to my kids that if I go down that path, find a place for me. No way would I want them to even try.

So, even if WE make our own contingency plans, they need to be understood by those who will implement them, but also make sure they understand that sometimes we can try to thwart our own plans! The dynamics in the family can make or break these plans. Siblings might not get along or agree. Relationships may have been broken long ago.

It'd be difficult to list every contingency. There are so many conditions that require help, but also so many situations for families. Lack of funds/planning. Lack of ability, time or space to provide assistance. Very difficult people who need help/care. Different backgrounds for us all - some, like cetude, who follow family traditions, others who are far removed from old traditions, broken and/or abusive relationships, etc.

I never asked them, but when my brothers learned the cost of MC and said "For that kind of money, I'll take her in," I was concerned. Neither had a clue what it meant to care for someone with dementia. Most likely they had vague memories of Nana staying with us. It wasn't full time, she didn't have dementia and she was very easy going. If all situations were like that, maybe. I knew it wouldn't work. Even with a good parent-child relationship, going back to live under one roof is bound in many cases to cause tension. Differences in ideas on child-rearing. Opinions about decisions we make. Complaint or criticism regarding how we clean, cook, etc. Strong personalities will increase those tensions.

I don't think any amount of training could ever prepare us for what might be needed, because there are just too many factors. Someone mentioned how there's a lot of info about pets, but with pets it's mainly what limited treatments are available for whatever condition they develop. Generally we're not going to get criticisms, complaints or brow-beatings from them. We do what we can for them and hope for the best! Every cat under my care who has passed on did so for a different reason. Often they will fight treatment, but it's easier to find ways to protect yourself and get it done vs dealing with a large uncooperative human!

Imho, I attempted to remedy my late mother's aged living situation well in advance of crisis mode by touring facilities. However, she said "no" to all of it and said to me "I'm so glad that I stayed in my own home." My response = "Mother, I am not; you've left me with a real dilemma." Her blood pressure bottomed out among a whole host of other ailments and in crisis mode, I had to leave my life behind and move in with her 7 states away from my own.
For my own elder self, my DH and I already have plans in the works, e.g. long term health insurance, bathtub remodel, stair rail, et al when the time comes. We only have one heir and she knows I would never be a burden.

NeedHelpWithMom, in answer to your question, at least some elders do not do any planning at all or very little. So perhaps the elder can attempt to start the planning process much earlier. In addition, you pointed out that some elders are living much longer than in past generations. The planning capabilities of an elder may be limited due to brain functionality, finances, et al IF they have waited far too late to plan accordingly.

Llama, you mentioned that some elderly do not do any planning. That made think...

What if before we/seniors can draw social security, we/they need to take a course to learn what it takes to care for elders. In such a course, seniors can learn:

--when to give up driving
--financial scams to avoid
--the need to declutter
--the need to hire outside help
--the need of their children to live their lives
--why they should not ask their children to do things for them all the time.
--the downsides of moving in with their children
--the need for POA, will, etc.
--role reversals
--IL and AL of today

These are just a few. There are a lot more I'm sure.

If seniors can learn about some of the above, it will help them to help themselves and not be a big burden on their children.

In your dreams, Polar!

Not that I disagree, but we live in a society where people are free to resist education of any sort if they wish. I can't see your (actually very good) idea taking off, somehow.

A client last week described a medication she has to take weekly, which must be done at six in the morning, on an empty stomach, and the person has to stand upright (I think you can actually sit down, but it wasn't the moment to correct her) for 30 minutes afterwards. Newly blind, she finds it a challenge to manage this but she is coping. Only she said to me: "it makes me wonder, what on earth do they do with patients who aren't able... who can't... who are a bit... stupid?" I laughed aloud and said I knew what she meant but we didn't generally put it like that.

It is perhaps stupid not to think ahead at least a little bit and take some responsibility for your own wellbeing. But you know what they say about stupid.

I really don't think anyone thinks about this until it is staring them in the face and then it is too late to do anything proactive. Let's face it....we all may be planning for our own futures or retirement and need to deal with kids going to college and whatever our own issues are. Most people aren't thinking that on short notice they may also have to care/manage the life of a parent. Then there is that knee-jerk reaction that you put your entire life on hold to deal with a crisis thinking it will only last a few weeks or a month or two .....and then it turns into years. And now you are stuck. Your retirement has taken a hit and you don't know what else to do for a parent.

At least I knew I could never live with my father. There were plenty of times I was in tears because I just didn't know where to turn to get him help. I didn't know what help was available and often I received bad information from those who were supposed to be helping. I was always terrified I would make the wrong decision.

Then there were all the rules that you are not aware of. I had no idea about the 5-year look back on Medicaid when my father offered to help my kids with college. I was thrilled for once he was doing something nice. Plus he had mid-six figures in the bank so I was not concerned he would ever run out of money. Then he decides on assisted living and the money went fast. I lost a lot of sleep worrying he would outlive his money.

Now I warn everyone I know with an elderly parent of the things to do and don't do. I wish I had someone do the same for me.

I think there are lots of reasons why aging, caregiving and moving into a LTC facility are not talked about.  For one, the majority of us do not have enough money to pay for caregiving so that means you're going to be needing someone to step up to the plate and help you.  That is not a comfortable conversation and what if they say no?  Most of us stick our head in the sand and hope to peacefully drop dead in our sleep so that we don't have to worry about it or burden anyone.

Neither of my parents took care of their parents.  My parents didn't care for anyone else and didn't plan for their own elder care.And here I am holding my back from moving mom into memory care over the weekend.  Had to clean out her assisted living apartment and shove everything into my garage until I can clean it up and try to sell it.

I have been saying this same thing, for a while now. Being a caregiver is like being in a secret society. LOTS of people are doing it, but NO ONE ever talks about it. I don't understand it at all.

If there was more awareness, if people talked about it more (outside of these forums), then maybe we could get more assistance.

In the "old days" cancer was considered a taboo topic, that no one dared to talk about. Now, this disease gets so much support. There's tons of cancer organizations, walks, research. Whenever someone I know reveals that they have cancer, literally everyone is there offering help with meals and money.

When someone finally reveals Dementia in a family member, they usually get . . . nothing.

We need more awareness about what caregivers go through!!!!!

Ninja,

Exactly! People need to know what they are getting into. It’s so hard and none of us are really prepared for caregiving.

Polarbear,
That would be awesome to have seniors take those classes. Can I add one more? The health risk on adult children being caregivers!

Great idea! 👏👍

Shell,

Great suggestion! We have no idea. My blood pressure was through the roof in my caregiving days. Not to mention the hours that I spent in therapy as well. Physical and mental health are effected.

Unfortunately, this is not something you can read in a book or take a course in school about. Nothing beats hands on experience…especially for a dementia patient. When I had free “caregivers” come from Area on Aging, they didn’t know first thing about diaper changing or transfers…not to mention they couldn’t speak English. Hugs 🤗

Books, classes, TV shows, movies and YouTube. I do not think I would have used any of them before I found myself in this mess that I call caring for my wife.

My mom had a LTC policy but died from the results of a stroke before she ever needed to use it, My dad died about 50 years ago so I was too young 20ish and partying while going to college. My MIL died about 25 years ago after heart surgery. She was in a "ventilator warehouse" for about 6 months before insurance benefits ran out and they(her kids) decided to "pull the plug" rather than send her home for FIL to care for her. He was in his early 80's at the time. FIL died quickly during a short hospital stay where he was found with prostate and colon cancer that had spread to multiple areas..

I wasn't concerned because who was left for me to care for. I am about 6 years older then my wife, so she should have been my caretaker.

When she had her 5th stroke about 3 1/2 years ago, I thought she would be in rehab 6 to 8 weeks and then back to almost whatever her new normal would be. Then it ended up being about 22 months before she came home. At that time she could walk around the house, get in and out of bed, shower, and other bathroom needs. Then there were several falls each with a short rehab stay. Then another bout of endocarditis with 6 weeks of IV antibiotics which I was doing for her at home. Then after another fall she spent 4 more weeks in a rehab.

While in the rehab she had 2 falls in less than 8 hours which later (4 months) resulted in back surgery. A blood clot formed on her spine after surgery. ( She was very high risk for the surgery but she insisted on having it. After the surgery to remove the clot, she ended up either in bed or a wheelchair, unable to help with transfers.

You guessed it, I did not plan on any of this. I did not plan on her being home unable to walk, unable to dress, unable to use bathroom, (incontinent both ways).

Several people have mentioned OTJT and that's where I have learned it. I never thought "it could happen to us"

I saw how hard a NH and even rehab was on my bipolar wife. She was declining and 3 times she was near death and the NH staff said she didn't need to go to the hospital. Once while on hospice, the hospice Dr's said she didn't need to go to the ER. Each time I DEMANDED that they send to the ER and each of those 3 times, the ER Dr. on at the time said if I had not gotten her in when I did, she probably would not have made, it. That's the main reason I brought her home.

This is a tiring, dirty, depressing, and thankless job. I have stress headaches about 5 out of 7 days with a few migraines thrown in just to keep things fun. I am not supposed to lift over 10 pounds, pull, bend, stoop or reach due to a back injury in 1996 and 2 failed surgeries. However to change a diaper for a 150lb woman takes most of the restriction listed.

Had I known how difficult this, (CARE TAKING) is, I would have devoured every book, class, TV show, movie and YouTube video available.

I do not think that most of us planned on having the role that we now have. I don't think that most of us expected our role to last anywhere near as long as it has. And I do not think that most of us expected would have listened to much advice before we began living the life we now find ourselves in now.

In my own experience, I went in blind, moving in with my then-semi-independent mom, when I was 60, as the result of unplanned losing my 30+ job/career, home, and relationship. My 2 siblings didn't have compassion for me as I began to be primary caregiver, &/or interest in the difficult stuff that our mom was starting to experience per my initial reports to them. I was the messenger that was killed for the message. I became thoroughly burned out after 5 terrible years, and had to drive away. I couldn't force the emotional or practical reality on them. I gave them each 30 days notice before I drove away. It broke what was left of the family, and my heart. A horse can be dragged to the water, but not forced to drink the water.

Polar: Wishful thinking. Elders sometimes are resistant to change. But thanks. One thing that my mother did do was to relinquish her DL well before she became legally blind. She said upon driving to the post office a half mile away "That is the last time that I back my auto into my driveway."

So many great comments... thank you all. I agree that this site has been my best source of information, and a place to feel like I am not alone. One of the hardest things is that no one can truly understand unless they have done it - it’s why I’m so grateful for all of you! Other people in my life - especially family members, none of whom cared for dad except my husband and I - none of them “get” it and all of them have, at least quietly, judged us. So, would pre-training and resources help? I don’t know. I’m sure I thought I would never have been in this situation! I have been discussing these things with my own daughter... she lived at home part of the time we cared for my dad, so she knows the stress it caused. She still says of course she’ll care for us, but I am trying to get my ducks in a row so she won’t have to... I don’t want to put this kind of stress on her and the family she might have by then.

Such a good topic! I learned the hard way dealing with parents who had made no plans to live into their 90’s. Now my best friend is doing the same thing with frail parents who refuse to move or let anyone help them.

I have started asking friends and family if they have made any plans for their old age, and what happens if one of them gets ill or worse. EVERYONE of them didn’t want to discuss it! BFF, who has been married 35 years with 2 kids no a large property, told me they didn’t even have a will! I have become the squeaky wheel carping on naming beneficiaries for all their accounts, detailing end of life choices, setting funeral decisions, etc.

I am 66, single with no children and I have been making plans for my old age so family doesn’t have the responsibility of dealing with clearing out my home, selling stuff, etc. I just remade my will and chose a an executor who is young, smart, and will follow my choices. Most of my money will go to a charitable trust. Next step is researching appointing a guardian to handle my affairs if I become incompetent. It's a scary thought but if my sibs and I live into our 90's they might not be capable of dealing with me and I don’t want their kids to have to do it.

PBS has a great documentary called Fast Forward. A group of researches had parent/adult child pairs interview with elder care lawyers, doctors, psychiatrists, financial planners, etc to ask those awkward questions about planning for getting old and their expectations. They put some of the participants in suits that simulate the physical changes of aging. Both parents and children were surprised and enlightened by the experience.

There is an associated website with resources to get started on making plans. https://www.nextavenue.org/fast-forward/

Watch the movie The Savages with Laura Linney and Phillip Seymour Hoffman about estranged siblings forced to care for their elderly father. A very realistic look at caregiving.