What’s something people don’t realize about taking care of elderly parents?

Urinary tract infections can make their behaviors go hay wire. Not allowing them to have pain meds or anti-anxiety medicine is cruel. And yes, more families than you think will withhold certain medications from their elderly loved ones. It's better to go along with delusions than argue with them on it. As long as they're not hurting anyone or themselves just let them believe what they think.

My father (84) makes bad choices. He and mom try to hide their accidents from us kids. Mom fell one night and when dad couldn’t get her to get up, he brought her a pillow and draped a blanket over her and went back to bed. He called my sister in the morning when he still couldn’t get mom to get up from the floor. My sister said “Oh my God, Dad! Call 911! Call an ambulance!” Dad wanted to keep taking to her and she was like “Dad, I’m calling 911. I need to hang up. I’m on my way.” Mom was largely unconscious and dad left her for hours because he didn’t think he could bother anyone. He STILL doesn’t seem to grasp how bad his decision making was. Yet he insists that they are fine living at home.

it's a lot more emotional labor than most think, not just the physical stuff. gotta be patient and really listen to them, because they go through a lot.

The one thing people don’t realize is that it forces you to face your own mortality every single day. You see the 'end-state' of the human condition. It strips away all your vanity and your trivial worries. You realize that at the end of the day, all that matters is dignity. Learning how to preserve a parent’s dignity when they can no longer care for themselves is the hardest, most brutal, and yet most 'human' thing you will ever do. It’s an act of love that requires you to set your own life on fire to keep someone else warm."

How difficult it is to watch their personalities change due to disease

People don’t realize that the caregiving can go on for years. Often they don’t realize they should ask for help. And that caring for a parent is a lot different to caring for an unrelated client.

How having a history of parental abuse or neglect towards you can make this situation 100% harder. My mom was my dad’s enabler for every abuse a person can perpetuate against a little girl. Still, she had exhausted her welcome at my brother’s house when he found out the hard way that she was as awful as I was telling him for years beforehand. Did I want to wash my hands of her? Absolutely. I did for many years of no contact. She was just as narcissistic and cruel as my father, but her abuse was mental and emotional. I give her the same regard and dignity I would any other client (I’m an attorney), but the emotional connection she wants so badly as the disabled, childlike mother to her adult daughter is something I cannot and will not give. It’s true that whatever lack of regard that you give your kids will be how your children will treat you at the end of your life. I am her caretaker because I want to be the adult I wish she had been, but I will be relieved when she’s gone. Not because I want her to die, but because I know then I will be fully free. She’s the classic entitled boomer, complaining about every little inconvenience while being overly racist and sensitive in a way that she could never tolerate in any sensitive and abused child. She’s since apologized for her behavior towards me, but I wonder perpetually if it’s because she’s truly sorry, her increasing mental deterioration, or she’s just trying to not bite the hand that feeds her. Regardless, I take it as progress. I wouldn’t have had such an apology 10 years ago, and I think most abused kids want some acknowledgment of what they went through. I know I do, anyway.

When I was younger, I thought that if you got sick, doctors and nurses would take care of everything and you'd be fine. I don't want to trash everyone in the medical field, but our healthcare system is BROKEN. We are dealing with people who are physically and mentally worn out to the point where too many of them don't care and don't want to be there. I've seen the way the elderly and seniors are treated and it's made me dread aging.

They will consider themselves capable of doing things long after they can't. It can be trivial or serious. Like driving.

That you may not both survive it.

Coming from my ex and not my personal experience, he told me last week, “I’m beginning to really not like my mother.”

Caregiver fatigue (particularly while trying to manage your own life, career, family, etc), the balance between them retaining independence/dignity while keeping them safe, and the unpredictable (and often cruel) nature of chronic and/or progressive diseases on their physical, cognitive, and mental health. It’s tough.

There is so much indignity and helplessness that goes with aging.

In my case, they just don’t care about doing what is categorically in their best interest. They are content to let it all burn; their health, wealth, and relationships.

"Taking care" doesn't need to mean doing the actual work and burning yourself out. EG Personal care like toenails, haircuts, baths and bathroom help etc can be done by professionals. Which protects the relationship and gives you more time just to visit. Systematize everything: Prescription renewals can often be done automatically with free delivery saving you the time of going and doing it in person and delivering it. Get every repeatable thing delivered. Most elderly get healthier and happier when they move into a seniors home. They get regular meals, have help with everything and they have more social time. And many homes have drivers to take them to medical appointments. Hire people to do as much of the grunt work as possible so it keeps you from burning out and you have more time to just spend quality time together.

There comes a day when you are not sure they know who you are. That one burned into my soul like no one’s bee wax.

If you decline to care for your abusive parents, let's say, you've cut contact with them for years, you can be charged with a crime in some states. In my state, you are legally required to fully financially support your aging parents if they are unable to support themselves. You can be charged for their care and burial even if you have had no contact with them for decades.

There comes a time when you have to take away the car and/or move them to some level of care facility. They likely will not agree or go willingly. Even when it is done out of love and is absolutely the right decision, it is gut wrenching. I’ve had to do it twice. It does not get easier.

How much shit they have that you are going to have to deal with.

It's the hardest and yet most loving job you can experience. It's almost impossible to not take things personally, and not to blame yourself. I advise families to really be honest about what they can handle and have support network in place noatter the choice made. Be honest..be loving. So what's right for you and your family. I

That it simply isn’t for everyone.

There often comes a time when they feel the need to purge their minds of all the things they may carry guilt or deep anger over (specially with dementia patients). You may hear stories that are horrifying, sad, bizarre, or alter how you feel about your parent or your childhood. Just let them speak and do not interject or insist their "memories" are false. Helping them clear their head of such thoughts really does aid in them having more peaceful days as their time draws to an end.

This is gonna be long. I haven’t taken care of my own parents yet, but I have worked in care homes so my perspective is from watching interactions between the aging and their loved ones. First, caregiving is incredibly hard even when you are trained for it. But it is always so much harder when they are your own loved one and you understand the depth of their decline. When I get a new resident I meet them as they are and don’t have the context of who they were before. Which in some ways makes things a lot easier because I am not expecting certain skills from them, I am assessing what skills they have at the time we meet. So I don’t experience the same distress and frustration a loved one does when their relative suddenly is unable to do something they’ve always been able to do. It’s why people should not be ashamed of outsourcing as much help as they can. People have very strong opinions on whether or not the elderly should be cared for at home or in facilities and there is really no one size fits all answer. Some people are just not cut out for caregiving, and sometimes even the people who are reach a point where they cannot any longer. But there also comes a point for a lot of elderly people where their needs are just too great to not be placed in a staffed care facility and that is okay. It’s not a failure on the part of their loved ones, it’s loving them enough to be willing to find solutions from problems that cannot be solved. And yes there are pros and cons to being cared for at home vs in a facility but those all have to be weighed against so many other variables. Even in a family of trained caregivers there came a time where my family had to send a relative to a specialized facility because no matter our best efforts we couldn’t provide them the safety, quality of life, and adequate care for complex medical needs that they required. Even if your loved one is losing functions or capabilities quickly and having serious medical events they are not necessarily knocking on deaths door. I’ve seen a lot of patients who have against all odds come back from the brink again and again and continued to live for a few years past serious diagnosis. So when you are financially planning (is you are in a position to) for your loved one’s care/your own future care keep in mind that death doesn’t happen on a schedule. Even if the approximately life expectancy for an illness has been given always err on the side of too much is better than too little. The issues and resentment you have with your loved ones don’t just go away for you even if they no longer remember or are no longer capable of understanding. Because even if the person in front of you is so different to the person who hurt you in the past, that hurt doesn’t disappear and you aren’t a terrible person for not being able to let it go. That said, you do have to watch out for how you carry that resentment because it does tend to bleed through in how you interact with your loved one and affect the quality of care you can give. People with Dementia and Alzheimer’s may not remember who you are but they know how you make them feel. Your bad mood and lack of patience affects them, and your inability to stay calm during a crisis or delusion adds to the situation. If you start your interaction with a big smile and being friendly they will typically respond like you are a friend and you can even deescalate situations by coming in with concern and compassion and going “hey I don’t know what’s going on and why you are upset, can you tell me what’s going on?” Even the most irrational delusions and emotions need to be validated because most of cognitive decline is being scared and trying and failing to communicate that. So if you as a caregiver try to offer to listen and find a solution you’ve proven that you are a safe person. That is a benefit to being in a care facility because when my PCA needs to get a combative resident to do something they don’t want to I can swoop in and be the good guy to deescalate and vice versa. We have to be a team and take turns providing authority and providing comfort, because it’s nearly impossible for one person to do both but sometime you have to force a person to let you take care of them. The way you handle their delusions as a family member sets the tone of the relationship you are going to have because again people know how you make them feel even if it’s just moment to moment. You don’t need to correct them everytime they are wrong or confused or deep in delusion. And you interrupting your loved one who is telling me a long rambling story to say “sorry it’s the dementia you don’t need to keep listening” does nothing but hurt the trust and safety your presence brings. I have residents whose family visits are more distressing to them than anything because their family treats them like an imbecile or tries to force them to recall things that are no longer accessible to them. When I’m the companion and your loved one thinks we’re on a ship sailing through the Atlantic I’m playing along because all me trying to correct them will do is confuse and upset them. And there is no harm in playing pretend if it brings somebody comfort. Good family visits are the ones where you come in with patience and an activity in mind that calls on something meaningful to you. If your mom read you a book before bed every night come read those same books to her. If you want to reminisce then you tell the stories that have been told a thousand times because you’ll either jog something in their memory or delight them by sharing something that feels new and exciting to them. A lot of the activities I run are open ended questions that give them a chance to exercise their brains. I might ask twenty questions and get the same response of “I don’t know” or “I don’t remember” but every so often something will click magically and then somebody who rarely if ever talks will be telling me a full cohesive story that give insight into who they were. And even if your loved one can’t follow along with an activity doesn’t mean they can’t participate with help because being included in any capacity is stimulating. If I’m running bingo you best believe everyone in the room has their own card even if it’s just sitting in their lap and I am making the circles to fill their cards too. Every single number is an opportunity to give someone a smile and say their name and give them a moment of excitement and encouragement. Speaking of names, as hard as it is sometimes calling your loved one by a title (mom, dad, etc.) is confusing and upsetting for them because they don’t understand the nature of your relationship. If that is the case for you and you can’t bring yourself to call them by their name, nicknames are great especially silly ones. Another thing that I am really passionate about is that people need to not be afraid to be silly. Life and aging are serious somber affairs but that doesn’t mean there isn’t still fun to be had. Every loves to laugh so don’t be afraid to be the court jester. Even the worst days can be cured with a bit of laughter. You can also find ways to make the memory loss, confusion, personal care, or whatever it may be fun. Especially when you know the person you are taking care of. One of my favorite bits is when a resident knows they want something but don’t know what it is or can’t articulate it and I will hold their hand and close my eyes and say “okay I’m going to try to read your mind” and then I give out a guess or two of things I know they like before saying what I suspect it is they want. Every single time it’s magical and they have so much fun with it. Dancing is another great way to be silly and have fun together, and it incorporates movement which is super important. I think my final advice would be about autonomy and decision making. Not everyone can make their own decisions anymore but you can still give them appropriate options and treat them like an adult with a choice. “Hey I was thinking I’d make this or this for dinner, which one would you want?” It’s especially helpful when you know their preferences. For example I have about twenty different drinks I can offer with a meal but I know everyone’s top three choices and that’s what I offer first because they deserve to choose and if I limit the options and lead with their favorites then their brains have the best chance at following along. Same thing with when they are restless or not enjoying what they are doing, ask if they rather do something else and then present two options of things they enjoy because chances are they just cannot think of it themselves or at the very least changing activities will reset whatever loop their stuck in. Caregiving for loved ones is probably one of the hardest things we have to face, but it can be bittersweet if you let yourself go to make or find joy in the situation. And grief starts long before a person is dead when they are declining. Anger, resentment, fear, and even humor are all parts of that process so be easy on yourself when you need to be and take breaks and ask for help. Caregiving is not a one person job and it’s also not the be all end all if you cannot do it. Sometime the kindest and most responsible choice is admitting you cannot and seeking help.

It’s really expensive.

That your sibling(s) may absolve themselves of any responsibility and happily watch you sacrifice your time, resources, energy, and living space until the end. At which point they will likely be the most dramatic, pushy and demanding of the healthcare workers to assert their “closeness” and assuage their guilt. Hopefully, the effort you put into caregiving will be recognized by your parents and will bring you closer than you could’ve imagined. This will give you peace after they pass and you know that you did right by them.

I do this as a job, I see it tear family’s apart

That you need to get involved in their finances WAY earlier than you think. You may think they've only missed a couple of bills, and then suddenly it's tax time and they don't know where their documents are and they can't remember their passwords.

You realize that it's the hardest thing you can raise children but having to watch people thay taught you everything is hard. Yo watch people go from independent to needing care is exhausting. You get absued verbally some but you realize it's the frustration of them not being able to do what they once did. You also then think about how you'll manage yourself and pray every day for peace

That one day can be totally “normal” and then the next you’re talking to hospice. It f****** sucks. It’s not my own parents, but my in laws. I’ve been a full time caretaker for my fil for a few years and we’re meeting with hospice in the morning. Our own mortality is staring us in the face.

That doctors start to weigh out the health toll of pursuing treatment versus living with some discomfort. Is weird to be at these appointments with parents and have to translate later... Yes knee replacement is an option but you would never recover function to where you are now. Essentially - this is as good as it's gonna get from this day forward.

They are going to change. The parents you knew and loved are slowly disappearing. It's worse if they have dementia. When they inevitably pass on: it is critical to remember them in their prime, not in their decline. For your own mental health. So if you are able to: build and treasure moments you will want to keep forever. If you have shitty parents: I am truly sorry. I have no idea how to deal with that.

Right now I'm trying to support my mother who is caring for my father. My father has alzheimers. My mother is not smart and keeps getting stressed out bc she asks my dad to do things he can't, and keeps asking him "dont you remember?" I told you, not smart.  But now I think that her mind is slipping. She makes up stories, jumps to the completely wrong conclusion, and is super easily confused by everything.  She keeps having a repeating digestive issue, every 4 or 5 years or so. She cannot seem to remember that this has happened before, and instead of going to the doctor at the very first start of discomfort, she waits weeks, sometimes months on end before hsving to go to the hospital.  I'm in another state, and they will lilely die penniless at best or in massive debt. There will be no inheritance, and my sibling and I will have to support her when shit really hits the fan. 

That it will be the best decision you ever made. I took care of my mother when she was fighting cancer those months and towards the end we shared so many memories and made new memories. I can’t imagine any else taking care of my parents .

How heart breaking it is, time consuming, money sucking etc. Its a true act of love - I did it for both my parents but it is emotionally draining and you need to prepare yourself for all of that. Esp if they are experienceing mental issues with dementia etc - can be a total nightmare. And it's pretty thankless. Don't expect your siblings to appreciate it or applaud it. You know bc they woulod have done it but they were way too busy (eyeroll - as if you were not). My siblings only showed up to take things of value that were not designated for them or at death for the reading of the will. I am glad its behind me - so very freakin hard.

People don’t realize that not only will their health fluctuate, and some days will be easier than others, but they are unlikely to be consistently thankful for the care. It’s not uncommon for parents or grandparents to resent needing to be cared for, which can lead to resentment from the care giver. Also elder abuse is super common.

That sometimes, when you're finally done taking care of them and they pass, you get to start all over again and take care of your spouse the same way, until they pass. And sometimes it's a bit simultaneous. (Not happening to me, my mom was strong right up until the end, not sick a day in her life, and passed in her 90s.)

There is, sometimes, a lot of arguing with them about it, but trying to be nice about it. They often don't _want_ to need help, having been used to being independent.

The stress of having your parents act like children while you become the parent.

There is so much bureaucracy and red tape around getting them the help they need (Medicaid, veterans benefits, etc) but worth your time. My mom qualified for Medicaid and had an aide every day who became a close companion, making her last year of life so much better.

People also assume that it's adult kids that don't want their parents to live with them and "ship them off to a home". We invited my mom to live with us. She moved to our town but preferred to live in independent living instead of a busy, messy house with teens. 

My grandmother needed help and i was the only one who lived nearby and eventually she went into a facility after she injured herself falling and then one health concern after another was discovered that she has kept from me. I wasnt prepared for how much it would strain my relationship with her and the rest of my family as now I often become the person people ask to do things. 2 relatives want me to act as their PAO for medical and financial. My mother passed away in my early 20s and never met my father so part of me is baffled that I won't have an "aging parent" but somehow gained several. I miss being responsible for just myself. I miss being excited for my family calling me instead of feeling dread when I see them call or worse feeling guilty if I just cant get myself to pick up because im afraid they will have a new request for me It doesnt help that I often heard my grandma tell me and other people how much other family members do for her but haven't really received acknowledgement not that I need praise but it just makes you feel invisible until they need you to do something Weirdly I have received more thanks and praise from nursed, drs, and facility staff for being knowledgeable in her medical history and needs and keeping meticulous files. Thats nice.

You're doing it out of love or you're not doing it at all. Your parent becomes your child. The minute you realize you'd do ANYTHING to keep them comfortable and safe, you lose them. There is no heartbreak that comes close to losing your last parent and having to do the rest alone.

You will have as much work as they did when you were a child…but for a shorter period of time