What do we do to NOT become a burden for our children?

SueC1957, thanks for the update on Medicare and living out of the country. I always wondered about that.

@longplay53, I think you should be close to your mother, because she should have welfare checks from loved ones, why don’t you bring her out by you and it is not her decision it’s your forced decision.  Would be win/win situation.  I do agree with your mother, as I moved back to mother because we have no family in the USA and I was the only daughter and only person, I am glad to have been there to ensure her well being, I would really never entrust it to non family members, because for the most part, low paid nursing home personnel just don’t care like family does. She should be close enough that you can drop in on her and check on her, doing so from a distance (as I have learned) is not good enough, you actually have to SEE what is going on.

I agree

I have no idea--all being well I will have an ok pension and some from an IRA. I have already have sold my house to meet my daughters' medical debts, so that's my main assent gone. in two years, three month, I could go into my IRS if necessary to pay for more treatment. I would never tell them this, but at the point I saw I could not take care of them, I'd off myself, having made arrangements for their care. What worries me is that I won't know when that point comes, and will have hung on too long to make a rational decision. My mother is 26 years older than I am; I hope I outlive her. All that said, I realize I am amazing lucky to have had a house to sell, a job with a pension, money enough early in life to open an IRA.

I think that if the burden becomes too great, then you should hire someone to come in to help out. You should tell your children to do the same. Usually, a little help doesn't cost much.

My sister didn’t want her kids burdened if she gets AZ, so she put in her health directive, that as soon as she cannot feed herself, no one is to feed her. That eliminates possibly many years of someone feeding you and giving you Ensure. People can live for years on Ensure or something similar. Make sure you have all your ducks in a row!

Honestly....I have told everyone around me...if you see I am having a heart attack. Stroke, whatever...LEAVE ME ALONE.

I have seen the lack of quality of life after those events. DO NOT "come to me aid".

The long decent into ever increasing helplessness is not a ride I will take willingly. Not a ride I will condemn my kids to take with me. Leave me alone and let me go!

Live! I agree with Grandma1957 and Suzy QB in getting all your wishes in order and all the paper work done. If you are young get LTC Insurance now as it is less costly than waiting until you are in your late 50 or 60's. If I get a Dementia i may not have the capacity to walk out in the desert and sit under a rock and die or many cases to take those pills that some of you talked about. After taking care of my wife for 7 years and last 16 months in a memory care unit-I would be okay with that with the hope I am not mean but compatible until the day I die. So do I want to be like that-No. I may not have a choice by then. Any other disease i will live my life to the fullest until I die and hopefully it is my sleep. Our kids have a packet of everything that they need to do with passwords-access to accounts-trust papers to make the process easier and where money is to go upon my death. I am 68 and hope to be around for another 30 years but in case I am prepared to minimize the burden on our kids. Live for Today-Plan for Tomorrow!

I know our parents don't want to burden us, but it is right for us to care for them in their time of need and we role model that to our children, who will hopefully do the same. There is so much we can't control, even with perfect nutrition, exercise, etc. I had two friends die this year of ALS and IPF, neither of which were expected or justified. You can organize all your paperwork, prepay funeral costs, and support Alzheimer research. There WILL be solutions in your future life time to at least slow the progress until your body catches up. By the way, vacations/holiday breaks are a relatively new thing. Leisure wasn't something people experienced before the 1950s.

Invisible, Some parents think it is OK to be a burden to their children. That is what they have children for. I was cautioning my mother one day about giving my brother all of her money. She said, "Well, when I spend all my money, I'll just live off you and Jack (my husband)". Funny, not the brother she gave all the money to.

I am doing all the stuff all of you honest caregivers have mentioned. I own guns but have decided not to use one because I don't want to give the gun control people more ammunition (pun not intended). I have had a couple of friends use carbon monoxide it worked for them. I do not want to be a burden to my children and I pray that I won't.

IMO, there is a difference between having your children care for you--rides to the doctor, helping with spring and fall cleaning, picking up library books, can't think of what else right now, and being a burden. 5 or 10 years of not being able to sleep through the night--not because of a 2 am feeding, but because you are constantly listening for trouble, not being able to get to your own doctors' appointments, praying that your back won't give out...that I wouldn't want to do to my children even if they were capable.

Currently, thirty states (Alaska, Arkansas, California, Connecticut, Delaware, Georgia, Idaho, Indiana, Iowa, Kentucky, Louisiana, Maryland, Massachusetts, Mississippi, Montana, Nevada, New Hampshire, New Jersey, North Carolina, North Dakota, Ohio, Oregon, Pennsylvania, Rhode Island, South Dakota, Tennessee, Utah, Vermont, Virginia, and West Virginia) have passed FILIAL responsibility laws (money owed by son or daughter to pay living costs for parents). They would not have to pay if they didn't have the money.

In California, only the parent or the state may demand payment-not creditors. Also, after the parents death, no one has to pay their debts.
(San Diego Elder Law website.)

That said, it's all well and good (and I agree) to save money, contribute to IRA's and 401K's, buy long term insurance, etc, but, in reality, s**t happens.

I was so mature at 23, I had an IRA, (then a 401k) savings account, life insurance, CD's, etc.
I was going to have a million bucks by the time I retired, "they" said.

Fast forward-
inflation, then divorce, then a catastrophic illness in a foreign country not covered by U.S. insurance, and it was all wiped out in the blink of an eye. So much for planning.

I had retired in Mexico (even had a nice little job there) but with only one income ($400./mo.) and a hubby convalescing from a life threatening illness, I had to go back home (U.S.) to work to start making money all over again. Bad thing is, that 3 year retirement cost me dearly in "recent work experience". Didn't matter a rats a** that I'd been a nurse for 39 years, WHAT have I done in the last 3 years? Also, being near retirement age doesn't help. Who wants to hire someone with a few years left?
I've been promised (4 months ago) to make $5000./mo. Ha! I made $140./wk at that job. The only jobs that are open have no benefits and no scheduled hours. THAT'S why they're available. So it's not lookin' like I'll make back what I had to spend. Oh well, cost of living is cheaper in Mexico. Hopefully Social Security will be there for me, as I've paid into it since age 17.
Just sayin'
Sometimes life doesn't cooperate with your plans.

Dana,
No need to slash your veins and go wading out in the ocean. Come to sunny Mexico where you can buy any drug of your choice for $80. ($40. for doctor's prescription, $40. for medicine). Wouldn't you rather take a long "nap" than be bitten to pieces from whatever finds you?

DNR sheets for all!

to
LeeCaregiver1 -- Your final words help to put it in a nutshell, I think: Live for Today-Plan for Tomorrow! I so agree with the practicalities: despite all wishes and intentions, we may well not easily recognise or be able to control our own condition, such as Dementia, which can advance slowly, though surely. So- I'd seek out the guidelines for practical, basic, now preparations, in case, as mentioned here and there throughout the (many) answers, (this is clearly a matter which can prey on so many of our minds), If we have a practical Offspring, to propose possible directions, or details for the final bit -- all the better. For the rest - I have seen a most feisty, rebellious person talking of taking a dramatic ending. When a cancer diagnosis came, she brilliantly settled all affairs, called up old friends, then let go quietly, at the end. Each to his own... but back to the beginning of this !

I don't think our children will be able to take care of us. I think they will be working till 70. Pensions are no more. What we need to do now is tell ourselves we r on our own. If we don't expect, we won't be disappointed. Downsizing to a nice apartment would be the best thing. No selling or Medicaid leans. The thinking...I want to stay in my own home is not fair to our kids. Complexes that have independent living, ALZ and LTN are great. Prepay for funerals and make sure what u want is in writing. Set up POAs with children who live the closest. Make sure there is a will. Important papers should be where children can easily get to them. Make sure you r aware of services in ur area. Keep active a involved so you don't have to depend on children for social life. I told my girls I don't expect them to physically care for me but I do expect them to help me if needed and celebrate birthdays and holidays with me.

I'm 39; my father had a stroke 11 years ago this June; my mom is his caregiver and POA, and I have helped at various times in all kinds of capacities.

As a grown child with one incapacitated parent and the other parent who gives all her time to helping, the best thing you can do to prepare yourself and your children is to organize your life so that everything is in order and you know where your things are at.

Downsize before your kids have to do it for you. It's not just physical health, it's the health of your surroundings.

I do more fighting with my mom to get rid of old junk that my dad couldn't get her to get rid of when he was able-bodied over 11 years ago.

Do not burden your children with YOUR STUFF. Your children have their own lives and don't care about every item you own the way you do. Do not expect your children to take your stuff over for you. Do not expect your children to know what to do if you do not keep them informed of your final wishes and important paperwork, medications, insurances, etc.

I'm more estranged at times from my parents but still connected and I know when the ball drops it will be me who goes in to clean it all up; and the years of fighting will finally be over with. Unfortunately, the years of fighting could end sooner if my mother would respect my wishes as her grown child by understanding her stuff will fall on me. She's said to my face 'So what?' about me having to come in and clean up everything, and take time away from my life to do what she chooses not to do.

With your open question I hope my answer can give some insight into the frustrations grown children deal with beyond mental and physical health, and how parents can help by downsizing and letting go by choice before they have no other choice.

The past two months have been really eye-opening for me. My boyfriend and I aren't even 30 yet and we've started to have to take care of his mother while working full-time jobs ourselves. She kind of skated through life and never saved anything for retirement and all she lives off is a very small social security check and an equally small check from my boyfriend's father's pension. She blows through all of her money before the month is even over and has debt out the ears. We've been asked several times now to pay phone and utility bills. I think she really expects that he will take care of everything for her and that there are no consequences to her decisions. She's only 65 and was just diagnosed with Parkinson's, so she could live for another two decades easily but there's no money for her care. It's made us realize just how important it is to stash every buck we can away and make plans for what we would want even though we don't even have our own children yet.

And a huge thank you to all of you people who realize that expecting your children to take care of everything for you is a huge burden. We don't mind going over and visiting with her or taking her to dinner or a doctor's appointment, but having to fight her to go to doctor's appointments and figure out how we're going to afford ALF when it would be all of my boyfriend's gross paycheck for the cheapest place is daunting.

Thay90, your situation makes me want to cry. I simply do not understand how some people can be so selfish and self centered, that they seem be EXPECT their children to give up their basic needs to take care of them when they have spent their lives living beyond their means. My heart cries for you and for everyone in that kind of situation.

One thing I can say for my mother, she is almost too good at getting rid of stuff so we won't have to deal with it. I thank her for that.

What a great thread - at times inspiring as well as depressing. I too, because of what my siblings have gone through (and are still going through) with my parents have learned a lot about what I want from my declining years. Neither of my parents had to caregive for their parents or inlaws so I don’t think they ever thought about it, and when they started to need help we all just pitched in so they could keep up their life-style in their home at a lot of personal and financial sacrifice on our part. This continued for around 15-16 years until we wore out and looked to a nursing facility for them both.
Would I want this burden for my children? As some of you have pointed out, it depends on the burden. We can relate to so many on this website, but some are caregiving in unimaginable circumstances. No, none of us would want to burden our children or anyone else taking care of us to the extent that they feel as if their life is not worth living. I must say, though, that the idea that we all are so independent that we never want to burden anyone is delusional. We all are caregivers from the moment we realize that someone exists besides oneself. We look out for siblings, friends, parents, strangers, people across the world in war-torn countries, homeless people in the camp a mile from where we live. And we are being cared for also by others, even if we live alone, think of the services that we use on a daily basis that allows us to live even though we pay for them, like electricity, internet, food grown on farms, garbage picked up and hauled away. Unless we live off the grid in a cave we serve and are being served everyday. I’m sorry I am rambling, but there is some good that I have learned, and I have grown from caring for my parents, and I think it would be good for my children to do so as well. I believe the issue is not that we burden our children, or other loved ones, but that we don’t “overburden” them. That is the dilemma. We came to this understanding when we realized that while our parents had little mobility and a lot of mental issues, due to our continued care, they were physically healthier than we were! This is what I don’t want for my children. I have learned so much from this website about how to pave the way for my children. I am not yet 60 but suffer from all kinds of aches and pains. I started yoga two months ago and noticed a huge difference in my range of motion and strength. I plan to keep it up, along with getting my paperwork together, POA, DNR, etc., to make it easier on my kids. I have already told my kids that I want to go to IL or AL when I start to decline.

First off Golden 23 --- you are amazing!!!
I worked for a woman who at 93 is still teaching seniors how to live.
I am 74 taking care of my 79 yr old husband who is wheelchair bound and cannot transfer alone and has incontant issues. He does not have ALZ but is basically checked out of all financial, social and life issues. I do it all plus.

Fortunately we have handled all legal issues -- and today I had my responsible son sign paperwork so he can manage IRA's if necessary. The next step is getting rid of "stuff". I will not burden my kids with that. The hard part is downsizing the house to a small condo until my DH is more ???? But it must be done soon.

This is a huge issue as this age group grows older and more infirm.
I agree with others that when we are at the point we need the help we probably won't realize we need it.

I have no answers or even useful suggestions -- except to get the necessary paperwork done now -- wills, financial plans, POA's, 5 Wishes, etc. Inform our children so they at least have the information and contacts. Then live every day to it's fullest! Fulfill your bucket list to the extent you can. Have fun!

I had been the caregiver for my mom and dad for three plus years. I also am care giver for my husband the past two years. what I have learned from this whole process is to have all of my affairs in order for when the time comes. pre pay the funeral home even if you need to make payments monthly. have a will and proxy all set up and ready to go. I also have all of our financial affairs in order. I have made a living will in case something happens also. since my parents never included us in their decisions to be made it was very difficult for me to have to make all of the decisions on my own. it was very painful and very stress full. so I sat down with my children and went thru it all. explained what was needed to be done and how I wanted it done .
to me its the only way for me to know that my kids will not go thru what I have been thru with my parents. as I told them if they live by my wishes things will go a lot easier and quicker and they could get on with their lives as I was unable to with my parents.....

This just reminded me of something my mother recently said--when I am no longer useful I will stop eating. And I asked, do you think I'll let you. She: I'll go in the bedroom where you can't see me. Me: You know, we share that bedroom. She: You will have to sleep on the couch.

Oh, meallen! I laughed so hard! Thank you so much for including this little gem in the midst of such a weighty subject. I’m still smiling!

Downsizing isn't easy. I know I have placed items in a box to donate only to pull a couple of items out to keep. I need to be more discipline and tell myself how often to I really look at that knick knack, and do I even recall who gave it to me or if I had bought it myself. But it is sooo cute :P

Heavens, I still have toys from my childhood 65+ years ago, items my parents had kept for me. I can't donate them because of lead paint, but I wish I could donate them to some historic home museum to use in their children rooms. I just can't throw them out :(

Heidindsrespit1:

I would love to be nearer to to my mother, but she refused to move away from cold Minnesota. I had explored the alternatives where I am but she was not interested. I can understand that in part because it is hard these days to find new doctors. The local options in my area also more expensive and, thought she is financially far better off than I am (though 24 years my senior), she hates spending money.

Also, at the time of our move, she was still in her large house. I had for years tried to help her downsize and move into senior living but she wouldn't do it. In fact, on three separate occasions she rented a senior apartment for several months each time and never moved into them, instead canceling the agreement ($$$).

One more issue is that my spouse and my mother don't get along all that well and, even though her brother lives near my mom, she did not want to move there, either.

I decided not to live on guilt and move to a state where I did not want to live while I am still healthy enough to enjoy life.

What you could do is start thinking of your own future and your own future needs. What I would do in your shoes is start getting medical equipment you may need later on when you shop at thrift shops and private summer sales like yard and garage sales for starters. Build up your own savings and put it somewhere secure in a special account. Set up your own funeral preneed through the funeral home of your choice and pay on the insurance in full on time each month, but don't pay off the funeral home all at once in case they end up going under for some reason. Put the money in a POD account and make the funeral home the beneficiary so the money is there just in case. That way, the funeral home can't take off with your money if they do go under. In the end, you should have everything you may need later, even if you must put it in storage. That way, you already have those items and you don't have to worry about not stuff you absolutely need that's not covered by your insurance later when you most need it. You want to have one up on the insurance company and your future needs since one day you will get old if you live that long. If you don't need those items when you reach that age, just passed them on to your heirs. Everyone should have one up on their future by getting stuff they may need later as they age because you never know when those items may also come in handy when you're a little younger, and that's just for medical stuff. 

As for your care, what you can do is stay home as long as you possibly can until the state steps in and takes custody. Hopefully it doesn't come to that and hopefully no one targets you for guardianship, especially in light of so many people coming under abusive guardianship, especially probate guardianship. The best thing to do is to put safeguards in place for yourself now and set up certain legal protections but set them up in such a way that state cannot overturn them as what's been able to happen with abusive probate guardianship when your legal protections are overturned and voided. Thankfully North Carolina is listening. Guardianship in North Carolina I heard is about to get a very serious overhaul since too many people are being abused under guardianship, so thank God someone is finally listening  when someone should've been listening from the start because one person is too many and abuse against anyone even one person is uncalled for. Anyway, thank God someone is listening and guardianship laws are being changed and hopefully for the better. Laws are supposed to be changed in favor of wards to give them far more power  and restore lost rights. Hopefully every state follows through and does likewise, this is a change long overdue. I hope you never need to go under guardianship or need care from someone else if you're able to care for yourself. If you're smart enough, use your own wisdom and think outside the box. You don't know what you'll come up with in order to be able to stay home longer and care for yourself if you're desperate enough to not be at the mercy of another person. This is where not having family can come in handy, especially if you're childless. There are some people out there who are childless for some reason or another, but being childless can be a good thing. That way, you don't have any kids trying to override what you want and take advantage of you in your old age as so many of them do. Many times children act out of entitlement  to take advantage of aging and ailing parents. This is true in so many cases but not all. If you have a family history of abuse, you may actually want to consider whether or not you really want kids because the genes from your abuser may have skipped you but may visit your children or even your grandchildren, something you definitely don't want when you're ill. Sometimes it's actually better to be alone in your old age, just so you can make it much harder for anyone to take advantage of you if you spend a lot of time alone. I've seen elders who use alone time to try and protect themselves and for one person in particular, it worked for a very long time until he develop dementia and had to be put under state care where are he's sadly and most likely experiencing abuse. This is exactly what I'm talking about, sometimes it's actually better to keep everyone at a distance when you're old in order to protect yourself and  keep anyone from knowing anything about you or what you have. Set up your own will while you can before anyone has a chance to come in and take anything she should you become incapacitated. Send an alert to your heirs and appoint someone to watch over your house if you do have someone you can trust. If not, find a real good lawyer you can turn to if you become a target. Learn to spot the signs and we are very aware of your surroundings. Keep a cell phone with you at the hospital and make sure you have a real good signal or have access to the outdoors just in case. The best way to not be a burden for your children may actually be to just not have none. That way, you can't be a burden to someone who's not there 

I realize your question and answers center around the burden of caring for dementia and other medical issues. But I want to add the burden of going through and getting rid of your excessive junk. Please down-size while you are able. Ask your relatives, if they want your collections, dishes, books, tools, etc. Get rid of what they don't. I spent 2 months away from my family & work, so I could go through my parents dusty old stuff, that no one wanted. This combined with taking care of funeral arrangements for Dad, POA & financial matters, and making arrangements to move my demented mother to live with me, was physically and emotionally draining. After seven years with vascular dementia, she still hadn't been declared incompetent, so that took a couple of weeks, just to get two letters from doctors.
I do not forget those months. I have down-sized everything in every room in our house. I have down-sized everything in our garage (Christmas, lawn supplies, tools, etc.) My sons will not be burdened with excessive junk or unnecessary legal and financial hassles! And I am enjoying having less and being more clean & organized.

I would never ever say that my parent was a burden!! I took care of my Mom for 5 years.. I sold my home, I quit my job and moved in with Mom and did everything for her. I went thru the yelling the swearing then not walking then not eating and then not knowing who I was and then not talking.. Mom died and I would give anything to have "that burden" back... I did it willingly and Id do it again...

This is the most poignant and relevant post I have seen on this site. Thank you for this important discussion.

Yes thank everyone for sharing. I sometimes think I am the only one with these thoughts and plans. Problem is knowing when it is time to pull the plug. I too am downsizing. I have all legal stuff in order and cremation paid for. Where I want my ashes scattered won't accept payment in advance, so I have put those funds in savings. It is a rose garden in local cemetery, doesn't cost much, right now it is $350.00. I have instructions if it goes up much just scatter me in one of several places I have named.