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.

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We can always hope that there will be a cure or prevention in the next 20 years.

Somehow, I don't think that will happen. Mother stopped all the things linked with Alzheimer's (no more deodorant containing aluminum, etc.) but she started at 60 years old! She also smoked for 40 years.

I hope to be able to recognize the symptoms, then be screened for it. I'm not hiding my head or having too much pride. I want to know immediately.
Judging by my mother, I'd say I've got until stage 4 to handle it by myself. By stage 5, she was too wacked out to make any decisions for herself.

If my situation stays the same as I age, then I'll only have my husband in my old age. My son wants nothing to do with me and I'd never burden him with that anyway.

We can make sure ALL our affairs are in order and have everything done way before we loose it! I'll give away anything I would "will" someone so I can see them enjoy it.

Since I'll be retiring in Mexico, a few pesos can buy you anything, like a bottle of sleeping pills. Don't know IF I could actually go through with it, but, if there's no one to help me as I go crazy, then that would seem like a doable alternative.

I have only questioned Gods' decisions when it came to little kids being gravely sick. I just can't see why little ones should suffer. Now, I've added another group, the demented. It's a horrible disease that robs the person of their mind and ability to live their lives and thoroughly trashes the lives of their families, some of whom will give THEIR lives caring for them. I'm pissed about the whole thing and plan to not have this ugly disease ruin my life and those around me.

I'll do what I have to do at the time. In the mean time, after mom goes to God, I plan to really live my life so I'll be fulfilled when I have to check out.
Helpful Answer (31)

This hits close to home--my mother is failing, and failing quickly. She's just shutting down and it's horrible to watch. Yesterday was constipation and she was crying in pain...she had overdosed on Zofran, not realizing it would stop her gut motility. I got her a couple of enemas and offered to help administer them....she declined, and when I called her later, she said it had helped, but that she was now terribly nauseated.

Well--it's always something.

A few weeks ago she said she felt like stopping all her medications and letting "it" go. I told her I completely supported that decision. She is diabetic and the end would come pretty fast--but also pretty miserably. Then she said "But that would be suicide." In my book, no, not even close. I think she is being kept alive artificially NOW, with all the stuff she takes. And she's miserable. All her friend are gone, she is too tired and sick to go anywhere or do anything. There is no joy in any day.

She is definitely a burden to us kids. No happiness, no joy, no enjoyment of life. I wouldn't keep on. Something in her makes her keep on pushing and I have no clue why.

I plan to NOT be a burden to my kids by pre-planning everything I can, NOT expecting them to do a single thing for me and hoping I die young enough that they have fond memories of me---not sad ones of me sick, miserable and grouchy.

In the end, though, I guess it really isn't up to us how we go. I just really, really don't want to burden my kids the way my mother (and my MIL) have with their kids.
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Thank you freqflyer, SueC1957, and Midkid58 for your responses.

My uncle who was 77 just passed away couple of weeks ago. His blood vessel swelled up and burst. That was because he stopped taking his high BP medication which he said made him feel lousy all day. He was also going blind slowly. He went to the hospital for 2 days and he passed, after seeing his kids and ex-wife, saying his good-byes, and writing down his last wishes in a sealed letter. In his letter which his kids let me read, he said he felt so free of all the burden of life, and he was ready to leave his body and take the next step into the spiritual world. When he died, his face looked so peaceful. I thought that was a nice way to go. Midkid58, I do agree with you that modern medicine is keeping a lot of people alive artificially. Without it, we would die naturally when the bodies give out.

So far, here is what I come up with as far as what to do to not burden my children:

Save as much money as I can like freqflyer suggested.

Check into long term care insurance and see what it offers. We can't rely on government. Who knows what will happen in 20, 30 years.

Stay healthy. I started reading this book called Cured 81 natural cures for cancer, diabetes, alz, and more. So far, what I gather is that we don't get enough nutrients from food and that causes cells to die. So, i am now taking multivitamin and fish oil to support my body and brain.

Finish my will. Yup I will have to dust off the paperwork.

Pre-plan my final arrangement.

When I know my brain is dying (at what point I don't know yet), I will stop taking meds so my body can catch up to the brain.

Leave instructions to not give me meds to keep my body alive artificially. I wonder if that is legal to do. Hmmmm.

Most of all, work on my spiritual strength so I can be ready to go when the time comes.

Do you have any other suggestions to add to my list? In the meantime, i will try to enjoy whatever free time I have with my kids and husband. I think I will ask for periodic help so that I can take a break from caring for my mother. Now that I have a plan, I do feel a little better.

SueC, living in Mexico where you can stretch your money does sound really nice. Stay healthy so you can enjoy all the time you have after your mother leaves.

Merry Christmas/Happy Holidays to you all.
Helpful Answer (25)

Polarbear, save money like there is no tomorrow. i know for some of us, it's impossible to get back into the work force full-time, especially a job that has excellent benefits. Like matching 401(k).

Getting older can become so very expensive, I know it was a real eye opener for me when my Dad went into Assisted Living, and when my Mom went into a nursing home, both were self pay. And prior to that the high cost of professional caregivers around the clock.

I use to think that I would always have Medicaid to fall back on should I outlive my savings, but now I honestly believe I can't rely on that any longer, thanks to the newly passed U.S. Tax Reform.

Thus, with large companies no longer adding large amounts to the tax coffers of State and local government something has to give. What comes into play will be take from Peter to pay Paul. Our real estate taxes and sale taxes could see a climb to make up the difference.

When it comes to State/local programs, history has shown us that Education and Health programs get slashed first. Will that Medicaid safety net still be there? Oh, I sure hope so.

Also, to help our children from being a burden, make sure all of our legal documents are up-to-date. If you need to blow the dust off of them, time to make an appt with an Elder Law Attorney, as State laws do change. Now a days, Medical Directives are needed to help our love ones know exactly where you stand with final health decisions.
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At 80, I am still pretty well off, all things considered and not a burden to my children. My mother, who is 105 now, chose the ALF/NH route for herself. I will do the same. I will downsize soon (still am in my big house and still am safe there) into a condo near a larger centre with more resources. I look after my health - basic lifestyle stuff of diet, exercise, sleep, stress management... When I need more help, it will be an ALF. Mother moved into one aged 96. If she had not had a personality disorder, caring for her wouldn't have been such a burden. When she developed vascular dementia on top of that in her late 90s, it was a 5 ring circus. We haven't had Alz in the family anywhere. That being said no one knows the future, and what ailments lie ahead.

I am deciding which of my kids I want involved in my care. I don't think most of us can escape entirely appointing someone to care for our finances etc. It would not be wise not to. Someone has to use my money to pay for my funeral, if nothing else. My dd wants to do it, but I think I want my oldest son as a co POA/personal agent (health) too. I know he is willing. My middle son is very involved with his wife's parent's care and his wife has ongoing health issues , so I think he has enough on his plate. 

Sig other is younger and he helps, but he has his own issues. I am coaching my dd about signs of cognitive decline that I have learned on this site. Oldest son will figure them out. We have very deep discussions, and I am sure he will pick up any decline, should it occur.

One aunt lived in her own in a senior unit (row house) with help with shopping and appointments, but otherwise was independent and "with it" till she was 97. Then she lost her balance and fell reaching for the milk bottle on the steps outside. It was cold, she wasn't found right away, she already had a heart condition, and developed hypothermia. She died in hospital two weeks later. That would be a good way to go if one could chose.
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The only thing I’ve come up with to avoid burdening my daughter is a stash of very strong medication, taken all at once when the time is right. I agree, I don’t want to lose mental faculties but have a body hanging on and on.
Helpful Answer (19)

Buy long term care insurance if you can.
Move into a facility where you can age in place before they start telling you that you should. Do it not just because it will help them later but do it because you will get more socialization, take advantage of the things offered, make new friends, do new things. Make it so your kids and grand kids say..."We never get to see you anymore, you are so busy".
Get all your papers in place. Will, Trust, POA. And all that other stuff that no one wants to talk about but everyone should.
Make your wishes known. Do you want to be given CPR? Do you want breathing tube? Do you want a feeding tube? All this is detailed in a document called a POLST. It is more detailed than a DNR.
Make your Funeral arrangements and have them paid for.
Make sure someone knows where all your documents are.
If you are healthy now...great.
If you are ill now make a decision at what point will you stop treatments and will you contact Hospice? Quality of life is better than quantity as far as I am concerned.
Live your life with a smile on your face, an outgoing attitude goes a long way to bolster your life. If you wake up thinking you are going to have a lousy will have a lousy day.
Give more to others than you expect back. Karma...what goes around...
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No matter your age, you should always have a complete and current Will. My husband and I drafted ours the first year of our marriage, and we changed only a few things around after we had children. We go over our Will and care plan, once every 3 years.
Remember, when looking at your "stuff" in your home, while it may have great value to YOU, it won't always to your children. If there are steps you can take now to minimize what you have and roll any sale of things into an interest earning account, DO IT! Also, have your children pick 1 item in your home they definitely want, and either part with it now, or mark it for them later.
I'm hearing a lot in this thread, "... when I start to lose my mind, I will ..." The problem is, you won't. You won't know you're losing it, and you won't have the cogofunction to say, "oh I need to give this away, or draft that Will, or move here or there...". Make your plans now and give your adult children the power to make medical and financial choices for you, for when that day does come!
My sister and I are dealing with a huge ball of financial messes, my parents have made, including having to draft POAs for them and hire financial advisors, and move them from their home to a nursing facility... and dealing with a reverse mortgage we knew NOTHING ABOUT...
Make your plans, put them in writing, don't be afraid of your children, and visit nursing facilities or retirement places that you might like to be in... seriously, the best gift you can give your children is for them to not resent you for having not trusted them and done it sooner!!
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My husband and I do not have children but we do have LTC insurance. We would move to a place like my father's which has a benevolent care fund. So that if you go through all your savings, the fund covers any remaining costs until you die. They use your SSI, etc. and then their funds to make up the difference. His place is owned by the Methodist denomination. There are also some run by Catholic and Presbyterian denominations.
Also everyone should have an advanced directive or living will. Yes, you can tell them not to administer medication. I agree that we are living too long and I’ve often said we should be allowed to assist our death if we desire to. Some states allow it.
Of course avoid what we know contributes to some types of dementia like smoking, inactivity, poor diet, excess alcohol, etc. they link inflammation to dementia as well as untreated sleep apnea and poorly controlled blood glucose. Continue to have social contacts and a spiritual life, learn new things to challenge the brain and then realize life is short and enjoy it while you can. Harder to do when you are deep into caregiving for someone with dementia. Anyway, pick and choose and control the things you can.
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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.
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