From the start; If you could go back what would you do differently?

Could I have changed it - if I knew how things would be today?

Hmm, probably not. I advised, but no-one listened.

Mum & Dad chose to *gift* my Special Needs Sister her living arrangements ie Sis living alone *independantly* while her parents met all her wants/whishes/whims. They hoped she would grow in independance.

Fast forward: Sister much more dependant, both mentally & physically (by stroke), parents wearing out, Mum's big stroke, Dad now Mum's fulltime carer.

Yesterday was the first meeting to start the process of finding suitable accomodation for my Sister. 10 years too late. But this *new gift* is better late than never.

It is critical that people like myself in the 50 age bracket know that the Medicare home health benefit is free (no co-pay!) Just contact the primary care dr of your elderly relative and insist that a locally owned home health agency send out a skilled nurse and physical therapist!

I would not done anything differently because my sister was doing all the decision making and I had no choice. My conscience is clean. I did nothing wrong.

For the most part I try to live one day at a time so I don't look back much

I'm am a very bitter daughter right now - so this may sound harsh:

Knowing now, what I know, I would have left her in the hospital and let social services or whoever deal with her.

She's back in her own home, after I slaved to get her house in order (first floor), and ready for her to move back home. What a friggin mistake that was.

I should've known better.

After 2 months, 12 - 6 hour one way trips, elbow grease and labor to clean her place up - to just have her turn around and call police on me , report me me to her credit card agencies and talk badly about me to her friends - after being so soo nice to me while in the hospital and after helping her do her tax returns and helping her with her computer issues . . . I can go on. I did nothing wrong.


Shes been hurtful before. But I had no idea she would turn on me like this at her age.

Obviously there are details to all of this - but the essence of the question and answer: Let the system evaluate her living conditions and decide how to proceed. I'm going to stay out of it.

I can't be her 'daughter' the way I want to be at the moment.
I'll just wait for her next crisis -

I have to laugh that my friend posted on Facebook an article about a GRANNY POD being placed in adult children’s backyard!! Yeah right. My mom is not living in my backyard. What gets me about her is that she would never dream of having her mother come live with her. She put her in a nursing home. I don’t want to be a burden to my kids either. I would go into an assisted living facility.

For me the answer is "probably nothing ".. My parents came to live with me quickly and with little notice when my mom ended up in the ICU, and we realized just how bad dad;s ALZ had become. I had to take them in quickly as dad could not be left alone, and I had my mom transferred here for rehab. Hubs and I bought a huge house many years ago, and I used to joke we would need it one day when a set of parents had to move in.. Jokes on us! Dads ALZ got worse, he had to be placed in MC due to aggression at home ( we went 36 hours with no sleep , that was the deal breaker). He passed a month later, and mom is still here. Doing OK, memory loss is getting worse and she is very frail but we just keep chugging away. As long as she can keep eating and not burning the house down, we will keep her with us. Its a strain, but we have a routine now. It has affected our bills a bit,, but she is able to afford further care down the road if needed, and if not our finances will get back on track when she passes. If nothing else, I always planned to sell this big house when hubs and I got older, and that I now joke is my retirement plan for a smaller house! Luckily we bought low and the market has been good for years in our area.. not a lot of land left.

terminal caregiving will stress you to within an inch of your ( seemingly derailed and wasted ) life . try to look at it from your departed patient's view from wherever . you stuck with it , it was extremely hard and they are thankful and proud of you .
you provided a service that you arent likely to be provided with in your elder years . above and beyond , dammit .
if i did it again id probably chomp pills and wash em down with everclear . oh , wait . that wouldnt be doing it differently .

I am sorry I sounded so “hard”, but I am now 70, too weak and tired to do much of anything. I adored my Mom and still make sure she has nice things but she does not have a clue who I am. Soooooo sad.

Not do it. I wasted 7 years of my life and ruined my heath. Things I will never get back and no amount of money helps replace these things.

My neighbor had to move his mom into Independant living. So she still knows how to use a phone, but she doesn't know how to handle her pills, so the family is finding out, and she isn't happy...she leaves messages on the cells how terrible her kid is that is not taking care of her every single minute and not being there when she demands...

The difference is, she can talk and use a phone...

My mom could not talk, ALZ, and didn't have a phone... She was a sweetheart. I miss dancing with her and her presence.

I tried hard to keep mom in her home. I wasn't sleeping, had to shadow her every night, and then get up, go to my home, let hubby go to work, get my kid ready for school, and, then I go to work, AND;;; REPEAT...

I think I am still going nuts.. and I did have to move her for her safety and mine... It was hard, if I could have let her stay with us, I would have.

I tried, I did try to have her stay at my house... all she did was get angry..she wanted to go home.. I am sad about it still. But.. as my FIL said when he got cancer.. These bodies are not meant to live forever. Everyone goes, and hopefully we will meet again in God's House.

Bronish I’m pretty sure Franklin 99 is NOT going to hell!!

It’s eating up our marriage, our children’s lives, making us all feel guilty that we hate going to see my dad, hearing the same stories over and over, the same questions constantly repeated, him wanting to die in his own home, no matter the cost to the rest of us! It’s why I keep smoking even with emphysema. I want to die before I ruin my kid’s lives

NeedHelpWithMom: Thank you. I hadn't before.

I might be a rare one here in that I would do it all over again.
I only speak for myself and my experience, not everyones is the same.
My journey is not finished, and I would not change the place I have been put to care for loved ones.
A choice I would make over again, because I have learned so very much. A priceless experience for me.
I have drawn closer to Jesus and I have found my strength to do what I need to do in HIM.
I have been blessed to obtain more patience than when I began this journey. I have found peace in it, that I so did not have in the beginning.
I was led to this forum, where there are a lot of wonderful people that have different experiences and situations but come together to help each other and those in desperate need of a shoulder or advice, and if I was never in this position and labor of love, i would never have came here.
I really don't know what I could have done different as I did what I knew at each season of this journey.
I wish you the best and if you are a believer, God and prayer have been my answer to going through this journey with love.
As I read someone wrote, Love always love.
Greatest answer.
Try and take a few moments for yourself each day to refresh, that refreshing helps you do a better job and helps you do a better job of loving.
May God bless you in this your journey.

Isthisrealyreal: Thank you.💞💞

Isthisrealyreal, Beatty, NYDaughterInLaw, NeedHelpWithMom: I certainly was not going to let my late mother live alone ANY LONGER, since she was bordering on "passing out" stage. She was a povery-stricken widow. And yes, my family and I made many attempts to remedy the situation before the deciding factor. In fact, when I moved in with mom, I said "You've lost your choice" as to her elder living situation. She did have choices, but "was so glad that she stayed in her own home." The choice was then transferred to me.
To jcubed821: Each one of us has a different situation. What some may say that they did have a choice to caregive, others were left with a difficult dilemma.

It’s very interesting to see all of the answers posted here. I think we are all entitled to our feelings.

For me though, as a recently ‘former’ caregiver without the benefit of a ‘happy ending’ no less, I feel my opinions are drastically different than they were before.

I owe that primarily to my eyes being opened. I went into caregiving blindly and stayed that way because I denied any instincts that were different from what I considered to be my ‘obligation’ to my mother.

I learned so much from others here on the forum. Some had similar experiences to me. It doesn’t even matter though if they were different because I learned from everyone in one way or another. I am grateful.

There isn’t a ‘one size fits all’ answer for responsibilities in caregiving. Then there is the question if any of us are responsible for caregiving at all. This can lead to a heated debate among many.

I thought I was responsible and had I not tried perhaps I would have continually wondered. Still, am I glad that I devoted as much time to caregiving as I did? No, I am not.

Do I feel shame or guilt for no longer being a caregiver to my mother? No, I do not. At first I absolutely did and had many conflicting emotions.

Yes, I felt relief that caregiving was over but it was mixed in with shame and guilt due to my individual circumstances.

I was not able to let go of that until the incredibly kind, smart, compassionate people on this forum reached out to me. I will eternally be grateful to each and everyone of you.

I will not tell anyone else how to feel because I don’t have that right. Even if I did tell someone how to feel with their permission because they asked me they may not be ready to hear and I totally get that.

I asked for advice. I heard but I was not ready to hear. It did open the door to conversations. It did plant seeds to grow. I was able to draw upon that advice when needed. I continued needing advice and everyone was there for me. What a blessing!

I will only speak for myself. There is no obligation. It is a choice that should only be made by the person who is considering being a caregiver. The choice should not be made by the parent or siblings.

We were born with ‘free will.’ Not even God imposes on us. I believe He wants our actions to reflect our hearts. If our heart is not in something then what is the point? He does not expect anyone to do everything all on their own. Even Jesus fell with the heavy cross and accepted help carrying it. Caregiving is a heavy cross to bear.

Christians always feel they should carry their cross as Christ did and that is admirable but they forget that Jesus himself accepted help with His struggle. It would serve us well to remember that.

There are times we must sacrifice in our lives. Does that mean we sacrifice our entire self to be a caregiver? I don’t think so. For those that believe we should. You have no argument from me. I admire your spirit of service if you truly feel a conviction to do so. I was that person too.

For me now, I see the other side. It’s the first time I actually feel free to feel the other side. There is no ‘right or wrong’ way to feel but I can tell you that my doctor constantly told me that I would be of no use to my mom with my health suffering. By the way, the same applies to mental health. Burning out is not a good thing!

Jcubed821.....
I have indeed thought about your question....if I could go back and do it all again.... Here's my answer:

If I could do it all over again..... I'd have never married, but stayed with Mom and Dad, eventually becoming his caregiver, then my mother's.
They began to move around in later years, first to be closer to my mother's eldest brother, who passed about 3 years after they relocated. That was a Big mistake, because my folks left their favorite place to live near her brother....and that place was, Redondo Beach, Ca.....from being close by her brother, then they left for a motorhome life, which didn't last long because my dad was already too old and having health issues...so they spent away their fortune doing the motorhome thing, then they moved into a "dump" in a hot, horrid place called Lake Elsinore....and thought when they "bought" this old mobile home that it was theirs....all fine and good, except that they were now saddled with space rent, which increased a little every year....not good....for 17 years.
Long story short, Dad ended up in a nursing-type home, where he passed....then Mom, who was legally blind, needed help....my sister and I did our best to help her....me, finally taking Mother into my home which was out of state.....Mother was forever homesick for her Redondo roots.....and I couldn't afford to buy her a home there, unfortunately.
If I'd stayed with them, and didn't impose too much on their privacy, I may have been able to keep them as close to Redondo as possible....so, that's what I'd do differently, stay with them, and help them all along the way, possibly keeping them close to the beach. 😢. Oh well.

I would never blow my cork no matter what.

I took care of mom by myself for almost 5 years before becoming financially destroyed. I however recieved the greatest gift in the world, the kind money could never buy. The love and compassion and companionship of my mom. If there was anything I could change it would be better financial planning so I could've cared for her til the end. Now she's in a facility and I know they're all understaffed and underpaid and under qualified but thats the system thats in place. It's downright cruel inhumane treatment. The system is more than happy to pay a facility $20,000 a month for legalized neglect in a skilled nursing facility but not willing to give a family member even 10% of that for the care our loved ones deserve and should get out of basic humanity. If you choose to be her primary caregiver be financially prepared, get anyone willing to help you out to do so, your guna find out what people say they will help you with and what they actually help you with are 2 different things. Its as if by them saying anytime you need help just say the word they've already helped because they offered. If you can't do it till the end prepare to go through an emotional HELL. Since I had to place mom I've cried daily for almost a year now. I wish you the best and wish I could've enlightened you with an easy answer.

Honestly....I would not have done the POA and moved my father into my house.

The POA thing bit me in the butt with APS. I only had one done because of my father’s physical limitations, so that I could get his business taken care of. When he was in a previous facility, I got a call from APS saying an allegation of financial abuse was made against me, and of course they wouldn’t tell me by who. No one in his family would have called that in because I had checked with everyone about the POA if they wanted it and they all said they trusted me to handle things. We think it was the ALF or someone at the ALF, either because of their mismanagement of his account (which I found later they were adding unnecessary fees to his bills and not informing us), or because my dad likes to tell people worst case scenarios for attention even if not true (something to the effect of “my daughter probably spent all my money” which yes I did...on his facility and care!). So APS investigated and found zero grounds for the allegation. But it set the tone for what came next.

When it was time to apply for medicaid, the caseworker ran me and my dad around in circles for 6months, telling us she wouldn’t help him with the application “because your daughter is a criminal, I saw the APS report!”. She closed his application for “violent behaviors, wouldn’t be allowed in facilities.” He got kicked out of his facility, so I took him in. He was so mean, ungrateful, ragged on my children, ran me around, lied to family about his living situation. Just sooooo much negativity and abuse. He was placed back in facility care almost a year ago after more strokes, got his Medicaid approved in record time thanks to the facilities social workers and business people (MVPs!) and I no longer deal with him. But ended up in a mental breakdown last January-ish, and I’m only just starting to feel normal again. 5 years after this mess began!

I don’t know what I could have done in the past, I had 4 children still minors to take care of, so I guess I was doing short fixes just to survive. But I do know if presented with caregiving for a parent again, I wouldn’t. I know now there are organizations out there, and my dad had nor has any competency issues, just mobility. So he could have dealt with things himself if he was put in the position to need to. He stepped up to do for himself once I stopped doing for him.

I found a multi sectioned spiral notebook like high schoolers use for more than 1 subject was handy - 1 was medical app'ts, 1 was a contacts with medical on first page for quick reference, 1 was financial issues with a quick reference there too but name/time/date of all you talk too, 1 was an inventory of her assets -

I emailed a write up on all app'ts with dr's contact info etc plus what happened on those app'ts to the back-up POA just in case but COPIED MYSELF so I had the same file & could find info quickly when it was needed

Good morning jcubed,

Great question and great posts. I think AgingCare should make this a suggested reading for all new members. I just finished reading through all the answers. The people on this forum are so amazing.

Someone brought it up, but I have seen it on other posts also, the fact that everyone’s situation is different. There are so many things we have in common, and that’s why the advice and suggestions that we get on this forum are so useful, but there are so many variables within the caregiving situation: dementia, mobility, length of caregiving, personality of person cared for, prior relationship with caregiver, caregiver’s own physical and mental health, finances. The list could go on, but differences in any of these could make your caregiving situation work differently than someone else’s. So we take what we like and leave the rest.

Another poster said that none of your family and friends can understand your situation unless they have been in your shoes. You will find more understanding here, but even then we may have some dissension. Take what you like......
I know of no one of my friends or acquaintances who have had the long slow decline that my siblings and I experienced with my parents. No one.

Things we did right:

1) Used my parents’ funds to hire caregivers and lawn care when they needed them in early 70’s.
2) Periodically assessed their needs to increase caregivers
3) Had family meetings of all children to discuss caregiving needs. (we started this about 16 years ago, and had our most recent last month)
4) Took complete control over parents’ finances which saved their home
5) Researched and received some free caregiving assistance through local Agency on Aging
6) All siblings participated in caregiving (some more than others due to work and family obligations). Prior to my parents going in to the nursing home, we had been on rotating shifts for about two years.

And......we prayed

Things we should have done:

1) We should have taken control of their money earlier. My sister, a CPA tried to handle their finances to no avail because my parents were still able to access their money and squander it.
2) we should have questioned more, and limited the revolving door of doctors appointments due to the fact that my parents had such excellent insurance
3) we should have pursued more and earlier the veterans’ benefits that my father and mother were eligible for
4) we should have researched earlier local hospice companies (don’t wait until you need them)
5) we should have set aside money for their burial so we wouldn’t have to wait for life insurance payout which takes some time
6) we should have educated ourselves earlier that dementia and decline ebbs and flows. Just because they can do something one day, doesn’t mean they can do it the next

......and the list could go on

I would definately take breaks! At least a weekend every couple of months and a week or so at some point. Even if you’re nearby, to rest and refresh yourself. Realize the time when someone needs a 24/7, nurse at a good facility and not you’re home. We drag it out and feel guilty.

It’s so weird because I can see the two sides of my mom. I know my parents never wanted to bother or trouble me with anything. Now some days my mom will call me angry telling me not to come visit. Or when I show up she will tell me to leave. Obviously she’s angry. Maybe she thinks it’s been a while since i visited. I try to go at least twice a week. But Will want me there more often. Gets mad when I’m not. Then other times will change right away and tell me she knows I’m busy. It’s so hard to not take it personally when they are mean. And then the next moment they act like everything is fine. It’s so hard not to be hurt and angry at them.

Mary Mary2 you are so right on. I feel the same way right now. you can't just let it roll off your back. You either have to get out of the situation or end your own life. No 2 ways about it. When my mother was in the hospital with pneumonia on one lung and I was with her all day and stayed the whole night with her and when I told her at 5am I was going to go home and get some sleep and I would be back in a few hours to be with you, her response? SHE SCREAMED AT ME!!! Go!!! Just go!!! Its all about you!! Get out of here!!! I left, I was at the hospital, I almost for a split second went to the mental health faciltiy which is part of the hospital. I almost walked in there for myself because I was crying all the way down the hall. Sometimes you just feel like you want to die first.

1. If mom is living alone, make sure someone sees mom everyday. Pay them if necessary. Could be just a teen who drops by after school, or could be a relative, neighbor, friend, paid helper. My mother lived alone, slipped on a throw rug, and lay unconscious for 3+ days, many medical complications. It would've been simpler to just find a few people to look in on her every day.
2. Research local rehabs now, not at the last minute under pressure. Rehab is where she would go after the hospital to continue physical therapy and 24-hour supervision. Medicare pays for rehab for up to 3 months. Rehabs vary widely. Some are awful, some are fabulous, probably many in between. Sometimes the neighborhood is a factor--a rehab in a poor neighborhood is probably not so good.
3. Hope for the best, prepare for the worst. She will likely be in the hospital for one reason or another soon enough.
4. Keep copies of all medical records. Make sure all doctors have records from all the other doctors. Read the medication list. If you can't understand the nurse's accent, you must insist that the nurse slow down and spell everything out. Do not agree to any new meds until you find out what, why, how much, how often, side effects, and who recommended it for mom.
5. After the fall in April, hosp 1 week, rehab for 4 weeks, my mother is now in a really good assisted living with memory care. The best have doctors and/or nurses on the premises every day. But every state has different regulations and different standards for assisted living, memory care, nursing care.
6. A private room is best in rehab or memory care--for your own sake. Imagine the stress of visiting mom, and then having to deal with, or even just look at, ANOTHER frail, confused elderly person who is no relation to you at all.
7. Don't underestimate the impact of the stress of watching your parent deteriorate. The stress really packs a wallop. If mom is a group care, you are watching a whole group of people deteriorate--that just takes the stress to another level. You must make time for yourself, even if you take the "easier" route of group care.

I didn't have the option to do anything differently. I had to leave my state, my home, my family, my pets and my life and move 7 states away to care for my mother as she demanded to live alone. It wasn't perfection nor could I have altered it - "doing anything differently," NO CHOICE.

If mom is competent, get paperwork in order now. Durable Power of Attorney & Medical if she will agree to it. Try to find out information on banks, credit cards etc. I too have 2 brothers, I'm only daughter. Mom went on Medi-caid years ago & got in home services. A lady came in a few hours a week to cook & clean in her home, take to Dr appts. Mom could barely walk, used walker, later took wheelchair outside home to appts. We were fortunate found a trusting, honest, loveable lady. Then at 90 mom fell broke ankle, ended up skilled nursing. See a good Elder Law Attorney now for options. Especially if your mom owns home. The more paperwork & things you can have in place now is better than later. If she needs to go on Medi-caid, know what is needed now not later, because they have a look back period of 5 years. We saw a Good Elder Law Attorney helped a lot. Just wish we would have talked to one earlier. Of course all depends what parents will allow you to do.