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

Perhaps we will be allowed to turn ourselves off.

Friends, Exercise, eat right, meditate, & try to have a belly laugh everyday.

Put simply - I like 'note to self'. Since reading the various reactions to this topic, it has, at least, alerted me to get on with mulled over items, like POA. My daughter downloaded the available doc for me. She quietly thanked me for thinking ahead. It is with some surprise that I find how fully and well areas are covered - in effect, the living will wishes, within the law, but desire not to prolong life artificially, etc. Also, various options on involvement or otherwise, of selected relatives, and more relating to issues raised lately. While in sound mind, with assurances by witnesses or professionals, as desired .. so now, writers, seems to be the time! My impression is that the 'conditions' on paper are much improved. From my experience with a husband with increasing dementia (but not personality changes) over more than a decade - even at the beginning, mental confusion would not have offered him any opportunity to choose drastic action, as some would wish - he had loved life & was proud - how mortified and sad, he would have been to know that he wound up on 24/7 caring. I do think that it can be a consolation, if not an easier burden, to know that folk like him, live instead in a passing world with no connections, after all. And talking of burdens - should we not be careful to be imposing burdens on our Offspring,or Caring relatives, even friends, by threatening a violent demise? No doubt every generation has the same horror of dementia or related outcome, to dread -- unfortunately, no cure on horizons.. but let's watch out for a quiet or hopefully dignified way out ? ,,without laying a trail of guilt or fear on others, who do know about these things, privately, too !
Good luck, Polarbear -and to all of us ! PS: I am getting on with de-cluttering, quickly.

I wish that dementia would be classified as a terminal disease for which assisted suicide would be an option. More states are allowing it, but are so strict, with only a six month life expectancy allowed, etc. The country is heading for a financial crisis; as others have pointed out, most dementia patients will wind up on Medicaid, and there are no guarantees that will be around, especially as the number of dementia patients increases. I expect that more states will pass filial responsibility laws, and that nursing homes will drive the families of dementia patients to virtual destitution.

I intend to stay vigilant for any signs, and to go with dignity. I've heard of some people ending it through voluntarily stopping eating and drinking, but don't know if I have the self-discipline for that. And even if I could save millions, which I can't, I don't want to rot in a miserable nursing home or be a burden. So suicide is the answer for me.

Actually, I think we need a word other than suicide. There is a difference between suicide from despair, which should be prevented, and rational end of life management. There are fates worse than death.  Dementia is worse, much worse.  

Note to self: Finish will, find a good elder law attorney to help prepare Health Care Directives. This year.

When we were having our health care directives written (and everyone should do that!), the lawyer inserted a statement to the effect that we should not be fed if we were not able to swallow our food. She said that when the end is near for an alzheimers patient, they forget how to swallow and it's cruel to try to force them to eat. Our HCD also states that we are not to be given tube feedings or other extraordinary measures to keep us alive beyond a very short initial period of evaluation. I was kind of confused about this until she explained it to me and now I am comfortable with it. It's what so many of you are saying, but unless you have your wishes in a signed and notarized directive, the health care providers will take extraordinary means to keep you alive. Otherwise they are open to being sued by the surviving family. Talk to your lawyer (and pick one who is well versed in elder law), and get your wishes written down and signed and notarized in the necessary legal documents.

Anotherjoe - I agree with you. But how can people who have dementia or Alz and are no longer in control of their mind ask for suicide?
I think if I ever get diagnosed with Alz, I will stop taking any medication that would prolong my body if there is no medication to help prolong my brain as well. I'll let nature take its course. Why drag the body on when the brain is dying.

I personally would prefer physician suicide when the time comes, and I see a few folks posting similar thoughts. But it may end up hurting loved ones irreparably if they don't see it your way. Perhaps one way to deal with this is to make it an ongoing conversation way ahead, so that thoughts and feelings have time to process.

And write to our politicians to support physician assisted suicide for dementia.

Yes, prepay funeral plots and caskets.
Create and maintain your will.
State your wishes before your demise.

My mother had to care for both her grandmother and her mother. I thought I would have to care for her, but she died of metastatic liver disease after two weeks in hospital. My father had died years before of heart attack at 63. Now my single daughter (an RN) is caring for her father (my ex) who is in nursing home with dementia, and she is afraid she will have to quit her job if the money runs out before he does. I have a son, but he has a family with health problems of their own (wife has heart failure and older daughter has type 1 diabetes). My son and daughter don't get along and I wonder who will care for her as she has no children and is very overweight and with a bad knee. I am 80 with one copy of Apo4 gene for late onset Alzheimer's so of course I think every lapse of memory is the beginning of the end. I would take something now if I could get hold of it, but my daughter won't tell me what I should get!

This is hard. I do not want to live to when I can no longer do things for myself, but who is to say. My mom died two weeks after she took ill with a heart condition at 72. My brother died instantly with an anuerism. My dad put us through the mill in the last 4 years of developing dementia at 83. He taught us so much. It was very hard watching him, He was in AL for two years and it breaks my heart just thinking about it. He was a fiercely independent man. So are both my sister and I. I would not want the same for my sons. They are very caring now. It is hard watching the deterioration, it is harder having to manage the parent. It can be soul-destroying from many angles. I cant imagine what it must be in the mind of the parent, if it can comprehend it's dependency and helplessness.
Some are just angry I guess.

I love my mom and we are very close...our family has a lot of longevity so I've seen my share of fast and slow progression..I think you need to start with your own depression...It is very difficult to deal with a sick relative, when you are not mentally or physically well....You will have to pay for the help, but, get a relative or company to give you a respite...check in a hotel, or visit a friend...see your doctor to talk about it...

The reality is... if you are not a multimillionaire, you will not have enough money to avoid being a burden.

As SueC pointed out....even a large saving is wiped completely out by one major illness...and asnyou age you can expect that to happen.

At $5000 to $8000 per month AC....at today's prices can you afford to live without free care? For how long without income? Where do you think the free care will come from?

There simply is no way to have the money to handle 30+ years of old age...and likely 10+ years of needing a caregiver.

After doing all the math...I realize that there is only one other way.

Joeabroad - Yes I feel exactly the same way. It is so difficult to set boundaries with someone who is so skilled at squirming around them. She finds a way to hook me in. And the medical professionals are no help whatsoever. In fact, they sometimes make things worse because the do not recognize the issues and say things that enable her.

I didn't read all the replies, so forgive me if this has already been said. No, nobody wants to be a burden to their children, but what were they to us growing up? Didn't we sacrifice for them with our time, money, and physical care? This is what families do. Parents take care of children, and children care for their parents in their old age. Everyone is helpless at some time in his life and needs loving care.

I know that caring for a baby is often a joy, and caring for someone who is old and dying is sad and often frustrating, but that is life. We do what we can and get help when we need it. I hope I don't ever have to be a burden on my children as I see so many people here sacrificing so much to take care of elderly relatives, but nobody can plan their last years. If it happens, then it happens.

Echo the other answers, Downsize, get your directives in order, stay active, mentally and physically.

Momsgoto: I understand your situation and am in a similar one. Our mothers have a personality disorder, bipolar, narcissistic or both. If you are like me then you were conditioned from an early age to please her. Or certainly not disappoint her. We know now that we are free but still the old dominating relationship keeps haunting us. This was an issue discussed at length in another thread last year. Key words: narcissistic, bipolar. Maybe that's not entirely your situation but there are many of us around 60 years old who are going through this now and wrote excellent testaments here in this group. I have found the strain on my marriage particularly difficult, since my wife is no longer welcome in her home. It would be easy and justified to simply walk away, but we are dealing with a parent with diminished capacity whom we owe our very existence to.

Help yourself out by:
#1 Putting long-term care into your investment portfolio.
#2 See your medical professional now...not next month or next year.
#3 Stay active.
#4 Amend your home for your aging needs.

Nursing homes are full of people who swore they were going to age in place. I carry one ApoE4 gene for late onset Alzheimer's, so I fully expect to go to Memory Care at best, nursing home at worst. I have two LTC policies and have let my 2 children know that I won't mind going to a nursing home if they want to put me there. Right now my unencumbered RN daughter is visiting her father (my ex) in nursing home every day to bring his dog for visit. He has dementia of some sort but occasionally gets better and physically he is in good shape and takes no medications. My son visits only rarely, but handles (or perhaps mishandles) his father's finances. My kids do not get along and their father's illness is making it worse. I can tell my memory is starting to go, so I plan to see attorney this year to make out new will. I hope I die before I need to go to a facility, but I have said I know it will be probably be necessary and have said it is okay while I am still in my right mind--sort of.

Momsgoto - it sounds as if your mom is unreasonable - that doesn't mean you have to do what she wants. You need to protect yourself and your family - and it sounds as if you are setting boundaries so that you are not under the tsunami of your mom's wants. Good for you for helping her - but not drowning.

Each of us has a unique circumstance. No two people are alike so no two caregiving situations are alike. I love my mother dearly but she has become so unreasonable in her old age. Demanding and entitled to the point of asking that I leave my husband to care for her. She doesn't have any diagnosed dementia but has a personality disorder that has become increasingly difficult to manage. She is stubborn and defiant so caregiving is nearly unbearable. I have been assisting her for 10 years. She refuses to move unless it is into my home and wants my bedroom. My husband has refused so I continue to drive hours to help her and get little compliance from her. All of this is what contributes to the "burden". It's not that I don't love her, or that I don't want to help her. It's that the all-consuming, complete and total surrender of my own life and family that I cannot submit to. And that is all my mother will accept.

I don't have any children to burden. I am 50 and starting to simplify possessions, getting rid of a lot of junk I have been carting around most of my life. I want to be light on my feet for whatever happens in the future. Watching my parents decline about a decade earlier than any of us would have expected, makes me realize our able-bodied time span may be shorter than we think.

Part of the issue is that most people are "in denial" about their own aging and eventual mortality. Nobody wants to admit that if they live long enough, they will lose their ability to remain independent. As others have said, planning ahead is the best strategy. This includes having all of the necessary documents in place and gradually downsizing one's lifestyle. At age 90, nobody needs a 4-bedroom colonial house that they can no longer maintain.

How not to be a burden to your kids. I echo the planning that has already been recommended: Planning and paying for funeral. You can even write your own obituary and choose the pix you want displayed. You can choose and pay for the specific floral arrangements you want. Make sure you have a plot. You can even have your headstone done and have the death date carved after you die. There's a plot like that in my cemetery. The only thing missing from the plot is the body and date of death.

Make sure everyone in your family knows your wishes for resuscitation, artificial respiration, hydration, and nutrition. Those preferences are recorded in a "living will." Work with an attorney to create one and discuss it with your family.

Give someone POA and make someone health care proxy.

Prepare for the possibility that you may need AL or NH care. Tour ALs and NHs now and decide which ones would be acceptable to you.

I will add that I have been caring for my mom with Alzheimer's for almost 12 years and I have never felt that she was a burden to me. Instead, I was so grateful to be able to give her the kind of tender care and diligence she gave me when the situation was reverse, and I was vulnerable. So, you never know. Someone may feel like they are a burden, while the person they think they are burdening does not feel burdened at all....

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.

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

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...

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.

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 

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.