Many people come to this forum when they are desperately in need of help. It would be wonderful if people could prepare for caring for the elderly and would avoid most of the confusion and frustration that most people feel when they are overwhelmed by caregiving.
There are tons of books on self help, relationships, parenting, etc. There aren’t nearly as many books on preparing for how to plan out caring for the elderly. Would the public read books on aging? I don’t know if I would have earlier in my life so I would have been better prepared for caregiving. Wouldn’t it be nice if adult children knew that facility care is necessary for many of our elders?
Some are speaking out. Rob Lowe spoke about caring for his mom with cancer. I was surprised to see a float dedicated to caregivers at the Rose Parade. But for the most part, it isn’t a topic that is addressed on a regular basis.
Do we not want to know about the elderly when we are younger because it reminds us of our own mortality and is depressing?
What about the single person who has no spouse or children, is there anything to help them prepare for growing old alone? I feel for them.
Does anyone have any thoughts or suggestions on this? I think about it from time to time and wish that somehow more people would speak about what is involved in caregiving to the elderly.
So many people are living very long lives. My mom lived until the age of 95. I cared for her for 15 years in my home. My husband’s great grandmother lived to be just shy of 102!
Look at how many independent living, assisted living/memory care facilities and nursing homes are in our world today. It seems like there should be more education than there is on aging, or in particular, ‘caregiving’ for the elderly.
So, I just googled ‘caring for the elderly’ and it’s interesting what popped up. Still, I wonder if we should be prepared sooner in life. I have already told my children that I do not wish to burden them with caring for me. Some children are taught from young that they are responsible for their parents. How sad!
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.
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:
"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!
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!
"Actually, maybe the first group of people who should be educated are the Hollywood script writers/directors/producers et. al. so they can learn what an elderly person dying of some sort of illness looks like."
I have no clue if there have been programs or movies about various illnesses the elderly have to live through and need care for, but those about dementia seem to be lacking what is really needed - honesty.
I have not seen the recent movies, only clips from them. Quick lookup to get the titles, there have been many before as well, but I've never seen those either!
The clips of the recent ones (The Father, Here Today, In Supernova) show some of those bittersweet moments. Without seeing the whole movie, do they cover the not so sweet moments? In order to "sell" a movie, I'm going to guess they whitewash over the parts that people won't want to see. Romanticizing the situation and what it entails isn't helpful! People want to be entertained, not turned off, so I wouldn't count on TV or movies to show the "real world" of dementia.
This site discusses briefly a few of these movies, but there are more in addition to these.
https://www.westgatehealthcare.co.uk/news-article/films-that-show-the-challenges-of-alzheimers-and-dementia/
Sadly, what I see in the synopsis and the clips is far from reality for many. Sure, maybe in the early stages one can find some joy, have a few laughs, but as it progresses, it becomes very difficult.
The hard part is even if one has been down the path with dementia, it doesn't equate to the next round. EVERY path is going to be unique and what worked on that first path isn't always going to work on the next path.
Many do not have children who could/would care for them. Some have no children, others do not have a relationship with their children that would include caregiving for various reasons: the grown child may be finanacially or emotionally unsuited, the parent may not have fostered a loving relationship with the child, grown children simply have lives of their own.
I am wondering if the education of the middle-aged on caregiving might be that they should tend to their own care and not rely upon their children.
My husband and I have 2 sons with whom we have a great relationship but I would not want to impose the difficulties of our age on them. We will stay in our current home until it is no longer practical, then downsize to an apartment or condo. When we do so, we will also get on a waiting list for a nursing facility in the event it becomes necessary. I would hope that our children would come to visit us and enjoy our company, but that should happen because we still have the ability to have pleasant conversation, not because they somehow "owe" it to us.
I have taken some part in caring for my mother in her home along with my sisters. The things that I choose to do for Mom are very limited. Mostly I run errands like picking up prescriptions, going to the bank, etc., and I take Mom for rides in the nearby mountains to get her out of the house. We go to a drive through to pick up lunch to eat "out." My sisters do much more of the in-house work. All of us have, at times, over-extended ourselves, especially the 2 who do more in Mom's house.
We share a long string of injuries due to attempting work that no 70-year old should be expected to do. We share another thing in common: we all swear we will not do this to our children. It should never be expected. Each of us should determine how we will take care of our own care and not expect our children to become our servants. That is not fair to them. In many cases it may also be quite inferior to the care we might need.
ive had longterm insurance for years and hope it never stops since i have no intention in saddling my family with the cost of care.
my daughter lives out of state and i remind her that when i visit i want to see ... and re-see ... longterm facilities.
she is against my husband and me living in one ... “i dont care if you live to be a hundred youre living with me !” She’ll be 65 then.
i find that statement to be appalling.
of course theres no way of knowing till im there what patient care would be like at any facility but im willing to take a chance and live at one.
i tell her to read this site to find out about the real world of caregiving but am sure she doesnt.
yes insurance is very expensive. Im a little old lady and still working to make enough money to pay for it since my social security covers only my medicare. My husband and i are still too healthy right now for a facility. And if i cant afford insurance how in the world can my family or i afford facility care !
all that said i guess it depends on the person and whether or not they even listen.
I have been caregiver for my 89 yr old mother for ten years. It has been extremely difficult and stressful. I tend to be a high anxiety (working on that) person and the last ten years have taken a huge toll. My mom refused to cooperate and everything seems to be a battle. Mom thinks she needs zero help even after four falls and three fractures. I have help from an older brother, younger brother rarely even visits mom.
Mom lived here with my husband and I for two years. It was a disaster. I had hope at that time that mom and I could become closer, but it didn’t happen.
I don’t like being a caregiver and do the best I can. It’s never enough though. It would have been very beneficial if I had known in advance how hard, stressful, frustrating, time consuming and invading (infiltrates into a person’s life) caregiving is. I didn’t need help with things like how to find a new doctor, etc. I needed, and still need at times support with dealing with such a difficult person.
Again, this is a great question and I hope it will be addressed for future people who might become caregivers.
I refuse to put my son through what I have gone through.
I made sure my own kids knew what was happening and made it clear to them that the last thing I ever want is for any of them to be put in that position. Then my husband and I started to do what we can to prepare. We sold our high maintenance home and downsized to an apartment (yes, that was really hard). We clearly defined our quality of life boundaries and drew up a living will with those boundaries in mind. Our next step is to talk to an elder law attorney re: poa and we keep our kids in the loop.
As time goes on we will look into in-home elder services (as needed) and when/if those services are not enough, placement would be the next step.
As for finances, we both worked lower paying jobs so savings are modest. We will both keep working as long as we can. When we can't work anymore, and if we go through our savings we will downsize again to elder housing. I am signing onto the wait list now as it can take years to get into a decent place. The good news about getting on a wait list is you can refuse openings and still stay on the list. We want all of this made clear to our kids and in writing while we are cognitively able.
Having said all that no one knows the future and we can only plan so much but I want my kids to know they will never be expected to give up their lives or well being to care for us. Each family is different I know, but this what my husband and I are comfortable with.
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 :)
I especially thank you for recognizing that there are single childless (not by choice) people who may need help. We're invisible to society or wrongly blamed for being alone when the reason is having health issues and/or unlucky circumstances. Ironically childless-not-by-choice women in the U.S. are 1/5 of the population of my generation (I'm in my early 60s) and that number is growing steadily with the younger generation.
I think a good start would be people speaking to mass media - or rather mass media being open to speaking to people like you or addressing these issues at all. These issues need to reach large audiences and young audiences so that the issues are in people's sights - just as other issues have been elevated to mass exposure. I don't have it in me, but if someone with your eloquence could be on the network morning shows, or if tv stations could do PSA's on these issues during shows when young people are watching or streaming, or getting onto podcasts, etc. Teaching these issues in schools. In other cultures, the elderly are a part of life. Here, many young people avoid us and have limited contact or knowledge.
The current president is old. I wish he or his wife could raise awareness of these issues. Please note, this isn't a political comment (I'm too stressed to be political!), just a suggestion for large-scale exposure.
So many people do not want to talk about "stuff" like appointing the appropriate people to make decisions for you when you no longer can, planning a funeral, planning on where and how to age, is the house safe?, will there have to be a move to a handicap accessible house, can the current house be made safe? IL, AL, or MC are those the options? Can caregiver help be afforded? Get over the expectation that you children or grandchildren will help you, or heaven forbid become fulltime caregivers. (unless they truly want to and are well compensated)
Talks like this are just as important as the "Birds and the Bees", maybe even more so.
An Elder Care Attorney is expensive but so are the problems that might arise if things are ignored.
Get over the fact that you don't want anyone to know your business.
And forget about "leaving a legacy, or inheritance" SPEND YOUR MONEY ON YOURSELF, ON YOUR CARE that is what you saved up for, so you would be comfortable in your retirement. Would you rather "hide" the money and let Medicaid dictate where you can live or do you want to live a bit more comfortably and spend a bit of what you saved? I know what I would want to do....(and as a tax payer I don't appreciate those that think this is an option)
I want my kids and grandkids to WANT to come see me because they want to not because they feel they have an obligation to do so.
There is a lot of information about aging I think the problem is people are not ready to absorb the information and by the time they are it might be to late.
(kinda like there is a lot of information on birth control, contraceptives yet how many "kids" get pregnant because they didn't know how or where to get the information OR it is ..It won't happen to me...)
Great topic, problem with all the responses you will get those that need the information will not take the time to read the responses..
The more infirm they become, the greater the care burden. My mom got so bad I had to manage her bowels (induce bowel movements three times a week) or she would get impacted. If she did not go on the 4th day she would be impacted I also had to clean and diaper her. Nobody likes to talk about bowel movements but that was the most stressful thing about caregiving, and keeping her clean.
Mom also had horrendous chronic health problems such as extremely advanced Alzheimer's disease, insulin-dependent diabetes, hypertension, hyperlipidemia (which I could not treat due to chronic liver disease) and she been stage 3 kidney disease for about 10 years. With considerable love, effort and care--and medical management--she was alive for 90 years, 3 months. With 15 years of Alzheimer's. Alzheimer's did not kill her. It was the complications of her diabetes, kidney and liver disease that did it. She could have been a self-caring walkie-talkie and the same would have happened.
Mom also died without a single narcotic or psychotropic...ever. I managed her behavior using daily walks and specialized walkers as long as I could (I walked her DAILY for 5 years!) She was on hospice for 2 years, but I used them like a home-clinic for routine labs and her medications...she was just on insulin, lopressor (heart medication), and lactulose for her bowels. She died peacefully...truly peacefully and her feeding tube kept her comfortable as she did not have to die of dehydration. That feeding tube was a LOT of work but I never had any problem with it. I did that as a very last resort. I also did it for her comfort by providing her needs, she did not have to suffer dehydration.
That feeding tube told me a lot. She normally had NO residuals but when she started I knew she was dying because the nutrition and fluids were no longer being absorbed well--at that time I called my brothers and flew down to be with her and exactly one week later she was dead. Needless to say that was the only time I withheld fluids/food when it was no longer being absorbed. There was no point giving it since it wasn't assimilated.
She also died with perfect skin.
After thinking about this for a while, I came to the conclusion that though potential caregivers can be educated and/or trained in many of the specific and tangible duties involved in caring for the elderly, the simple fact remains that everyone is different. Individual personalities and family dynamics play a huge part in successful caregiving.
We can be taught the mechanics of caregiving (lifting, turning, proper bathing and toileting techniques, medication administration and management, etc.). We can learn about patterns of behavioral change in dementia patients that are fairly common to all who are thus afflicted. But there is no book we can read, or class we can take, that prepares us for those which will always remain unknown factors. We don't know at what point our energies, both physical and emotional, will run out. We don't know if - or when - our parent's personality will change. We don't know precisely when, or how, death will ultimately occur - and how we will react when it does.
There are certain aspects of caregiving that one simply cannot prepare for. We take on this responsibility with the best of intentions, and often with rose-colored glasses, especially if we have been close to our loved one throughout the better years of our lives. Even if we educate ourselves on what to expect, it's only natural for us to think, "Oh, I don't see that happening to me (or to Mom)," and we continue to hope for the best.
Our emotions play a huge part in our mutual journey. No matter how many books we may read, or videos we may watch, on self-care, human emotion is highly personal and individual, and is thus unpredictable. It's tied to the lifelong relationship we have maintained with our loved ones, which makes things even more complicated - relationships evolve over time, so what we may learn about the emotional side of caregiving in our youth may not apply when we reach our 40's, 50's or 60's.
Sometimes I think that the most valuable education about caregiving is obtained through forums like this. Our shared experiences bring us together as a unique coterie of kindred spirits. We all have bad days and good days, stories of joy and tales of agony - and on the practical side, helpful hints and suggestions abound. It's an immensely valuable resource.
Perhaps the answer is for anyone who thinks he or she may ultimately take on the role of caregiver - in either the near or distant future - should commit a few minutes each day to perusing this forum and reading the real experiences of real people who have "been there, done that." We're all told how to prepare for the future by investing our finances carefully, but little mention is made of how to prepare for our emotional future - and that needs to change.
I look at it like parenting books. You can read as many as you like ,but it's nothing like first hand experience.
I would have never imagined that I would become a caregiver for both my parents but it happened.
I felt it was my duty ,but being a caregiver isn't for everyone ,and the experience has shown me that I wouldn't want my children to become mine.
When I think of my grandparents and family of that generation, almost all of them died suddenly or quickly. Heart attacks or strokes and maybe a few days in the hospital and that was it. My spouse’s grandparents lived with them and rotated staying throughout the year between the siblings, but didn’t need much hands on care and were mostly independent. Then something happened and they passed away after a brief illness. Occasionally when I was young, I would visit someone who had a bed bound relative living with them. I sometimes think we are just living too long nowadays due to modern medicine keeping us hanging on, but we don’t have a quality of life. And then we run out of money.
I know in my case my mother refused to plan for aging because she thought she would live forever. Seriously. Then dementia came on and that complicated her ability to realistically see what was going on in her life. It was a disaster. I get calls from her LTC all the time about how they “are working to give her a better quality of life.” A big part of me contorts my face while I’m listening to this. She’s anxious, agitated, and completely confused. She’s paranoid and has hallucinations. She’s a fall risk and has multiple other health issues. She’s incontinent and hates bathing. She believes everyone is against her and that they beat her up and rape her (and none of this is true). I am spending down every dollar she saved on her care and she will run out of money soon. She never wanted to be in a nursing home or wanted to be on Medicaid. “So how are you improving her life?” I say to myself. Soon, she will be on the taxpayer dime. I read the doctors notes on working to solve every issue she has. Honestly I don’t know what is right or wrong anymore.
I don’t even know where one would start with education. I just know that we need to rethink how we will manage our increasing aging population as a nation. I am trying hard right now to insure my children won’t have to go through what I am going through right now with my mother.
there’s dementia it’s impossible for one person to do it all in their home.
nobody knows this or can imagine what it’s like except when they’re going thru it.... that’s why this forum is so valuable... we learn from each other . I’ve read books .. utube ...
googled ... it’s all very good but unfortunately we caregivers are on our own !!! There are difficult choices we must make ... but no perfect solutions . This forum has been
the best go to place for me.
good luck with choices you make
I've taken the class twice and each time you pick up something new. It's very helpful to have a safe place to vent (live on zoom) with other people going through the same things and hear how others have handled similar situations.
Also, I'm studying to be an End of Life Doula to help others going though this. This training will allow me to help those that are terminally ill plan for care either at home, a facility or help the family caregiver find ways to care for their loved one. It's also a good way to learn tips on how to deal with certain things that come up and be prepared. Being a doula gives me the opportunity to be with the patient/family for more hours than a hospice outfit can provide and the capacity to bring in other care options that the overwhelmed caregiver can think of as an outlet for support. I want to help others in my position after my duties are done with my folks.
There might be a "Death Cafe" near you that gives free education on caregiving and end of life planning.
The education is out there but it's not talked about because death and dying are stigmatized in our country. It's a natural thing that's been drawn out with medical advances that sometimes are just downright cruel.
With the aging population growing, I feel that the caregiver community will be looking for ways to figure out this journey just as we have. My plan is to hold these "Death Cafe" sessions live on Facebook and in person when things get more covid free when I complete my course. It's already helped me decide on things that are difficult but necessary as a caregiver, POA, personal butt washer, etc...
I was sitting in class the other night thinking - I NEED a Doula! My father is on Hospice for bone cancer and has just started with some serious dementia symptoms. He's not safe here anymore - he locked me out of the house because he saw a bear while I had gone to buy paint. My mother who is recovering from a broken hip was able to get him to sit with her in her room until I got back. He's currently at the VA hospital awaiting placement. It's heart breaking to see this happening to him. I went to visit him at the hospital yesterday and he broke down crying because he feels abandoned. This is the hardest thing I've ever had to do but I also have my mother who just can't back from rehab last week - she fell early April and broke her hip. She has other medical issues - chf due to aortic stenosis, lymphoma that causes chronic anemia and diabetes. Her balance is not always there and she is weak. Unfortunately, I can't care for both of them by myself anymore; I don't have the support I need. It's a lot with just dad's care and the hospital social worker had some real talk with me the day after I brought him in. It was like she had a crystal ball and knew everything. That was comforting to hear someone UNDERSTAND and basically make the decision for me that I knew needed to happen.
Excellent points!
You are right, I suppose. There are so many different opinions on caregiving. I just feel that so many of us walk into caring for our parents, spouses or any other relatives, completely blind. As Tothill says, we are never prepared because all situations will be different. Even knowing basic information would help though. Not just medically but as others mentioned, legally as well.
There are many different types of dementia and they present differently.
Plus we each have our own capacity, obligations etc to take into consideration.
Just as we are never quite ready when we have our first child, no matter how many babies we may have looked after or books we have read.
My grandson is the easiest baby I have ever known. But that does not mean all my grandchildren will be so easy going.
This is something that has been weighing on me ever since my mom got sick to the point where she needed lots of care: she HAD planned for her elder years! She went to the elder attorney and got all her paperwork in order, she put all of her assets in trust, she purchased an LTC policy - the works. But she envisioned needing LT care IF she suffered a debilitating stroke, or she ended up with some form of dementia. The thought process of CHF - and it's slow, insidious decline, needing a lot of care, but not quite enough to go into a facility - that thought never entered into her planning process. Nor mine, quite frankly, when she was making all of these plans, and I was there with her so I knew what she had should that day ever come. And I had my "lines in the sand" so to speak - if she needs help bathing, if she needs help dressing, if she needs help cleaning up after a BM - these were all things that I swore "if that happens, we're going to have to look at placement" - but of course, these things happened, and of course I did them. My final straw, as it were, seemed to change as her needs changed. I think there are a lot of people here who are in that position as well. I admire people who can make that definitive statement -"this is where I draw the line" -and then stick to it. I had a very hard time with that; fortunately, my mom passed before we reached my next "I won't do that" level, and that was cleaning out a bedside commode.
And my circumstances are entirely different that other caregivers. Certainly, the demands my mom had are nothing compared to those people caring for AZ patients! I would never think to try and give specific caregiving advice to someone going through that, because have no practical experience with it. It would be like going to a Catholic priest for marriage counseling!
I just wish that our lawmakers (collectively) could come up with some real life viable options for senior care beyond "apply for Medicaid, or save a lot of money". I'm hoping that this subject gets some real focus, with the baby boomers now becoming the next senior generation; maybe by the time this generation of caregivers ends up being the ones needing care. they'll be some better, more affordable choices.
I wasn’t prepared emotionally for being a caregiver. Look at what happens from this perspective too. Many of us end up in therapy.
Caregiving was out of the blue for me. I wasn’t prepared for it. Overnight, mom was homeless due to losing her home in a hurricane. I felt responsible for her. We find ourselves in vulnerable situations. We don’t think clearly. We make mistakes. Everyone suffers from not knowing what to do.
It’s hurtful when we are criticized. Sometimes we need compassion first, then we can listen to the practical advice. Others don’t realize how broken we become and perhaps don’t realize how much unfair or even constructive criticism hurts us. It’s easy for caregivers to become crippled by their fear, depression and often isolation.
It takes a bit of time for some of us to process and navigate our way through the toughest journey of our lives.