I am caring for my 81 y.o. Alzheimer mother. I do not enjoy it. It is a big burden. Caring for her has taken over my life and that of my family. No holidays, no vacations, even outings have to be cut short. Hardly any breaks. I hate it. I resent it. But I don't have any other choice at the moment. But it got me thinking about the future when I get old. I don't want to become a burden to my children. I come to believe that our bodies should not outlive our brains. Once my cognitive ability is gone, I want to go with dignity. I would like to hear what you, fellow caregivers, think and suggest we do to not become the burdensome parents to our children. Thank you.
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 :(
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.....
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!
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.
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.
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.
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 !
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!
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.
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!
Just to add a touch of reality, nursing home rates in Calif start at about $300 a day. Where we live, it’s closer to $400 if you want quality care. You need to do your homework in advance so you don’t end up in a really bad situation.
I would rather die than go to AL or a nursing home. I've also told my daughter that she is not allowed to see me doing the things she sees me do for my mother, like help her up, get dressed, to the potty chair, changing her Depends, wiping her bottom. If I am lucky enough to get cancer like my father, I'm going to move to Oregon and let nature take its course. I'm already on more blood pressure meds than my mother, and at the first sign of cognitive impairment, I'd like to have a nice peaceful death with sleeping pills or painkillers, but thanks to the hysteria about opioids, they're next to impossible to get now.
So I plan on going to Dignitas, a group in Switzerland that allows assisted suicide - they allowed it for a nurse in her 70s who did not want to endure old age after working in nursing homes. If not that, I'll take a lot of aspirin, cut open my veins, and swim out in the ocean, and pray I have the guts to go through with it. If I become incapacitated for any reason, I've told my daughter to let me rot in some horrible nursing home rather than become a caregiver.
I think there is a difference between despair suicide and rational end of life management to avoid living with no quality of life and becoming a burden.
Nevertheless, it could be said that she is a burden, though it may only be that I take on too much guilt associated with not being there for her. I chose to retire further away that I was before and she was very angry about that. While to some extent I have control over my burden of guilt, it doesn't help that my mom all too often drops little barbs about other people's children being there for them. And if you tell her about you own health issues, she berates you saying you don't know what it's like to be dying.
So ... what I tell myself is that when I get to the stage where my mom is, I won't put guilt trips on my kids, and that I'll try to be kind to them, realizing they have have their own problems and their own lives to live. I have no idea what will be going on in my mind at that time, but I pray I can face it well and not burden others, but instead lift their load.