I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?

Cremation is good, Burial makes no sense to me at all, no matter what your religious beliefs are. If you believe in Resurrection then you need to know that God Promised us a N ew Body. The old one is no good even then.
I have arranged to donate my body to science. That takes care of everything. You have to do so ahead of time, you can't authorize someone to do that for you. Check with your State for the procedure.

So you all know. My husband's ancestors burial plots were moved from individual plots to one big grave. That idea totally turns me on to cremation. One really never knows where graves may go after many years. My father told me and my siblings that my grandfather purchased 6 graves right together. My brother told me that now there are only 5. What happened to the 6th plot? We will never know because at this point, none of us need to use them. Hopefully someday we will pursue.

My dad passed away this past December, after 6 months of progressively worse dementia. As I was making the decisions to maintain the antibiotics for pneumonia and sepsis, or discontinue them, I could only think how much worse the dementia would be when the infections were gone, if that, indeed, happened. I chose to discontinue all meds, except those for comfort. My dad looked so handsome lying there, but I knew, beneath that 91 year old countenance, the confused, anxious, frightened man who may wake up was not my dad and would not want to remembered that way. Dementia is just a horrible monster.

I have not experienced a parent in Assisted Living/NH totally dependent on Medicaid. My father had SS, Annuity and VA and eventually Medicaid paying for his stay. What it seems is that our government supports putting hard earned $'s in trust funds for loved ones and then when necessary, go on Medicaid.

Totally in agreement with life-extending medications being removed however will that open a can of worms? Our kids have lived through our care-giving for our parents for 12 years now. We don't tell them everything as they are working through their own life experiences. BUT they know a diverse amount of challenges we have gone through. We want it easier for them.

Several people have stated that it is our responsibility to unselfishly care for our parents. I truly believe our society is in the process of redefining what this means. Dysfunctional families are outed more these days, baby boomers are fastly approaching health care needs, and Sooozi is so right. We need to take responsibility for living a life of exercise, eating healthy, and reducing stress.

Sunflowerpower, many are opening the box we have all been conditioned to believe is the proper burial now. I had to deal with family about my father's last wishes. He just wanted a simple family gathering at the gravesite. I was overruled by those who believe that funerals are for the living. I was overruled because the funeral home said in the meeting that dad wrote down that he wanted a funeral service there. He never wrote down his final wishes.

geo123, thank you for responding to this. It is difficult to think through various scenarios when one has no clue where the medical and pharmaceutical profession are taking us.Or just what health issue(s) one will have to address, Because of that, how does one update that which was thought to be every covered detail? From what I have seen from 4 elderly family members, motivation deteriorates as one ages.

I would have to agree with Moxie1, plan on getting long term care insurance would be a good start. Talk to professional and credible insurance agent so you can plan well and get the best policy that suits your needs and preference, this way, you have safeguard your future and will have a peace of mind that you will not be a burden to your children and other family members. It is true that a lot of family caregivers even go to a point when they have to leave their job to care for loved ones. It would also be advisable to have advance directives so your family members will know exactly what you want. It is always comforting for family members to know that you have a back up plan in case the need arises, that you have planned your future long term care needs. It needs careful planning, I'd like to share this to you so you can get more information about long term care and long term care insurance http://www.infolongtermcare.org/long-term-care-insurance-information/

Eyerishlass, by the time you find out you have Alzheimer's and let a year pass you probably won't believe you are really having these symptoms. My mom is there, about two years since it became obvious. I mentioned the other day as we discussed a relative with Alzheimer's "and you are in the beginnings of that". She said "do you think so?". A dr. had told us this year "you have dementia turning into Alzheimer's . I have mentioned it in her presence but she doesn't hear it when I do. So there goes the suicide pact.

My husband and I have Long Term Health Care Insurance but do not know anyone to compare the quality of care or if it will be difficult to know when we need in home care, etc. Have two children, one out of state, and hoping they will help with making decisions, especially if one of us passes before it gets to that point.
Because my mom Is in AL I am asking questions and reading and attentive to suggestions of things to do to prepare us for that time in our lives. Got her in this hotel converted to be an assisted living facility. Couldn't afford anything better, and we help with that. Her expenses are more than she gets from his S.S. Do NOT want to do that to our kids, and are doing all we can to prepare.
Still open to other ideas.

We had a fire alarm salesman try to convince us to buy extra ones. She said "If a fire starts in your kitchen, you'll be dead in bed before the one in the hall goes off." We looked at each other and said "Wouldn't that be a wonderful way to go -- together in our sleep?" She thought we were nuts. But that's how we feel. No burdening our children with our care, no turning into robots with no memory --- So, why would I want one of those emergency button things? Would I want to push it and be saved? No, so why spend the money for one? I cared for my mil with alz; now my husband has parkinson's. I'll care for him as long as possible, but I pray that I will be "me" until the day I die.

There is a book, "Still Alice" that will soon be a movie. It is about a very smart woman (a neurologist I think) who develops Alzheimers, and follows her internal process as it increases. It is written by a neurologist who has cared for these type of patients and knows what she is talking about. I found it very insightful and comforting.

Please see my blog for a fuller discussion of your question. bgmatthewsblog.wordpress

Two brief related excerpts from "What to Do about Mama?"

"In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, “Just show me the book!” What to Do about Mama? p. 222

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes. 160

Sunflowerpower,

I think you make a great point about cremation. I mean if I think about what is happening in those big boxes, underground... My parents were both cremated and they are now in the process of fertilizing beautiful spring flowers on a hill side.

When I think about it, cremation makes the most sense to me. I feel my parents are living on in the hearts and heads of everyone they touched during their lives. I can see them in the faces of their children and grandchildren. We don't need to go to a cemetery to remember their wisdom and loving kindnesses. We feel them with every big decision we face each day.

I just hope someone remembers my wisdom and loving kindnesses some day. ;-)

I am 56 and my husband is 62 & just retired. My mom had been ill for YEARS, in and out of hospitals, and passed while hospitalized for the final time. Her mind was excellent to the very end. Her body had been in bad shape for years. Her death was long and painful and heartbreaking for all. Daddy had a fairly good body but no memory. He dropped dead - instantly. I've seen death both ways - they are both bad. They didn't have money. I don't have money for a nursing home or assisted living, etc......

That is why I say unless you are financially independent, a nursing home in any way, shape or form is out. I don't want to use whatever $$$ may be left for a nursing home. I would rather my family go to Disneyland or something. :)

I am even rethinking this whole funeral thing. Why not throw a big party instead? I don't visit my parents at the cemetery. I just get upset and cry and feel sad for a few days - all over again. What about cremation & throw me in the ocean? Or similar. NOT & NEVER have been independently wealthy. I have heard of a couple who think the whole funeral thing is a financial scam and refuse to have funerals when they pass.

We should work hard and save our money while we are young, and be financially accountable, so we can afford to take care of ourselves when we are old.

We should clean our homes, so we don't leave piles and piles of things for our children/relatives to sort through.

We should stay physically active and mentally healthy. We should eat whole, clean, organic foods... not food prepared by restaurants or big corporations. We should keep our weight down within normal/slender ranges.

And all the things everyone else said here.

Boy I'm far from perfect at all of this and have a lot of good work to do...

Most importantly, set a good example, enjoy the ride, laugh, be kind, bring joy and be thankful for this beautiful life every day!

I completely agree with you. My mother is going to be 84 in a few months, and is in the early stages of dementa (or, maybe not so early? It's hard to tell). She's been on blood pressure, cholesterol, and various other meds and supplements for decades, and she's recently been given Aricept (sp?) and another drug for honestly, I don't know what -- something to do with her cell count or something. She's never been cooperative/collaborative/compliant, and I'm not able to provide a lot of monitoring for her taking all of these meds. She was organized in the past, but now???? I'm not going to run myself ragged with worry, or further annoy her by trying to get more and more involved with her ever increasing med regimen. It's ridiculous.

Being a new caregiver, caring for FIL with dementia/alz, and MIL with stroke and parylisis, and both needing 24/7 care and assistance, I, too worry about leaving my children to take care of me in my elder years (I'm 47 now). I have found myself vowing that I won't put them in the same situation as I am now, but I also know they will not put me in a nursing home after what they witnessed with their grandparents in the NH. My FIL and MIL cared for my husband's grandfather with ALZ while my husband was 6-8 years old (on a rotational basis with siblings), and my husband says he has fond memories of his grandpa being at the house with them...but he also has horrifying memories of toileting issues, my FIL yelling at his father because of the messes he had to clean up, and watching him decline to almost death at his childhood home. He did say that the fond memories far outweigh the horrifying ones, though. Since becoming a caregiver for FIL and MIL, I have started eating properly myself, and have vowed to lose weight and take my BP medication daily. I have lost 11.5 pounds in the last 7 weeks, not sure if it's the added exercise I get going up and down, or if it's clean eating!! I also go to the doctor whereas I used to not go unless I couldn't "cure" myself at home or "wait it out" until sickness went away. My father just passed in December2013 of a massive heart attack at 71, just as his father had when he was 61...both were dead instantly at home, and i honestly feel that is the best way to go...instantly. My father never went to the doctor unless it was a work-mandated physical. At the time of his death, I asked my mother how long it had been since he had went to the doctor, she said probably 10 years. He did not believe in conventional medicine, and tried to control his BP with aspirin alone, by himself. My children are now young adults, and I know they will voluntarily care for me at home, either theirs or mine. My greatest fear is that my husband will follow in his father's and grandfather's footsteps with ALZ, and I will care for him at home, alone, because I wouldn't want my children to help unless absolutely necessary. But, he has told me that if he gets too much to handle should he fall ill before I do, to put him in a nursing home and have our estate pay for it. I know I won't do so until I absolutely can't handle him myself.

Alz is not the best way to go, as you said, the long goodbye. Mom is here and has it. Dad, Aunt, Uncle, friends have died of cancer. My friend said she is sorry, but she she is more "fortunate" (lack of other words-sorry) her dad died of cancer, than not knowing how long alz will take. Ive seen both sides. It's really not easier one disease over the other. Alz seems to last longer. Most family died within 13 months of being diagnosed. That's hard too. It's your loved one. It is sad to watch them go, but this is what we all will be doing one of these days. Now, I am going to get my DNR, POA in order. I am going to get ready to hopefully to make things easier for family. website: sevenwishes. I think is the link for DNR last wishes, etc. My brother's friend was teaching a meditation class, 58 years old, massive heart attack took him quickly. Brother is upset, I didn't say anything. Shock to his family and friends, no doubt, but he did not suffer long. To some of us being around the block, this would be a blessing...

Sunflower, I admit I didn't read all the other posts, so if I repeat what was already said...sorry. I think communication is key in what you're talking about. Make sure you sit down with your kids and discuss the future WHEN not IF you find yourself in dire physical straits and need care. Make sure they know it's okay to stick you in a 'home' if they have to, even if in 20 years you beg them not to. Also what about 'long term care' insurance? My brother-in-law and his wife have gotten it now in their early 60's but I can't attest to the validity of it since they're too young to use it yet however. The jury is still out on that I'm afraid. For me, my daughter-in-law I think would be more than happy to put a pillow over my face when the time comes, but that's a WHOLE different problem. ha

I agree with you SunflowerPower. My mom is in a AL facility. Last few weeks has been constant battle because she won't take her medication and is not eating. The AL was pushing to keep her alive which is against her wishes.
Finally she qualified for Hospice which takes off the table her being forced to take medications. I also signed DNR.
Its all about my mother being comfortable, happy & respecting her wishes.
My mother took care of her mother for years. She was depressed, drinking, & felt there was no recourse until my grandmother passed at 103.
I don't want my daughter to have any questions as to my care.
Plan to purchase Long Term Care Insurance, sign DNR, & living will.

What a difficult question.

I helped my father choose to die, and helped facilitate the final months of his life after he made that choice. Frankly, I was surprised that neither of these acts was difficult or ambiguous emotionally or spiritually. In fact, I felt empowered and proud.

As well, as a visiting RN, I saw many patients who I thought would have been better off if their lives had ended sooner. People will bristle at this, and might even condemn me, but I felt that people who lost their abilities to think, to control their bodily functions, and to have a sense of their own individuality had lost much of their humanity. To be more direct, I felt that they had become less human.

Of course, I did everything I possibly could to ease their suffering and extend their lives. That was my job. And with these difficult, ultimately unanswerable ethical problems, healthcare professionals have nothing if they don't have, and religiously follow rules. In the best of worlds, though, there would have been a way to euthanize them without their consent. (I have to reiterate this clearly though. I know many people who read this site avail themselves to the services of nurses. Whatever I believed, I did everything I could to do just the opposite-- I worked to extend the lives of all my patients. The morals of my profession and our society overwhelmingly superseded my personal beliefs.)

Returning to the topic...There is a last caveat. That is the potential for abuse. Even well intentioned caregivers and healthcare professionals could make short-sited decisions to end lives that should have continued. Perhaps that is reason to keep a short rein on freedom to make decisions that will curtail lives. I honestly don't know.

Just make sure you have a Living Will and Medical Power of Attorney in place that indicates your wishes about any terminal illness and you want DNR in place. If one is terminal what life-saving drugs do you mean?

I can't agree more. I don't want my daughter saying the things about me that I read caregivers on here saying. I think the most important thing a person can do is to start preparing for your old age by age 50. Right now, you need $3000 a month to get into Assisted Living and it goes up every year. If you can't afford that, you have to burden your children. I have all the POA's and living wills, but what I need is $$ to stay independant. Life is not fair.

To protect your Kids from the ordeal you experienced Plan your Retirement to include this care. You can do that with some Insurance Policies that include Long Term Care; also some Fixed Index Annuities do also. Also make sure your Estate Plan is up to date with your life. Start early.

Save prudently for retiirement, money equals options. Have a will and a living directive.
if you are diagnosed with a terminal or chronic disease you have right to direct what care you accept. I always thought if i was diagnosed with AL I would cut off all other meds once I got to a certain stage, just to give the body a chance to catch up to the brain's decline.
i also joked that is the market declined and my funds started to run low after I retire, I would take up smoking.
Old is tough, old and poor is even tougher, it makes you dependent on loved ones or the government.

You said "I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?"

Upon that opinion, just be clear in your living will about this. For example, what if you had to take some kind of heart pill to keep you alive. What if you'd die without them? And, what if you were too frail to live on your own but otherwise in good health? What you just said was kind of that you'd give up that heart pill to die.

All I'm pointing out is that you need to think about the wording you're going to use because some of the legal documents you can fill out for this allow you to write down your wishes and you just need to think through the scenarios that you'd like to follow-through.

Get your Living will, POA's and Medical POA's set up NOW. I even recommend writing out a letter with everything you are talking about now as if it was your last year on earth. Make copies of it and keep it with your other documents. My mother-in-law claimed she would never be like her mother before she died, didn't understand why she wouldn't be happy living with her, or later in the NH, and now we have gone through the same thing with her. With Alz all that goes out the window. Keeping everything documented, also keeps those family members that think some "miracle" will happen from extending your life longer than you wish.

The truth of the matter is, we caregivers mostly do not want our loved ones to be burdened like we are. Yet, we are a living example of 'doing the right thing.' So as an Elder Lawyer, I can only say take all the advice above about Living Wills, POA's, put as much in writing as you can, and talk , talk , talk to your kids, your spouse your loved ones about your plans for the future, especially if you have a diagnosis of some kind that leads you to believe you may end up in care. Because the second truth of the matter is every one of the 7 people I have been a caregiver for, would have liked to make a different decision, but they were not able to for physical or financial reasons, and therein lies the rub. You loose much control and even rejecting certain health measures does not guarantee an end to life or that you will not need care. And finally, every one of you as a caregiver is a dedicated advocate for your loved one, and this by far and away may be your greatest job. So at the very least, I hope you instill in your loved ones the need to advocate for what you may want when you no longer can.

Don't understand much about the Affordable Care Act, do you?

I think one of the most important things we can do for our children is get a high quality, well-paying long-term care insurance policy for ourselves.

Dear Friend,
Life is so precious for all. Your children e cared for your parents.
Dearly,
Jothi

SF, I've asked myself that question, too. The last thing I'd want is for my kids to be saddled with my care when I'm old. God forbid.

If something goes wrong with me and my quality of life is going to be in the toilet, the docs best leave me alone. This whole 'preserve breathing at all costs' idea has crossed the line into the ridiculous when no other considerations are taken. Such as, would the person WANT to live in a broken body and have to continue dealing with a broken mind and endless pain and frustration? And what about the financial consequences to the family that will have to continue to care for them?

Anyway, people put their dogs down when they're old and in pain and call it 'mercy'. If that's mercy, then what do you call keeping a human being alive in spite of extreme old age and pain?

I am 48. I have prayed to God to take me when I'm 50 rather than give me alz and such prolonged misery. Just the thought of it... I'd rather be dead. And when I go, I don't want to be yanked back and stuck in a useless body, trapped in it.

One of my first thoughts when my mom died was that now she was free at last. Not dead, FREE. Seems to me that keeping people alive on purpose, to face nothing but anxiety, fear, pain, misery, sickness and a long, slow death is almost inhuman, and totally wrong. When it's my time to go, I just want to go and go fast.

Doctors have no right to create a hoard of zombies. Which is pretty much what it amounts to.

Watching my mom decline with alz was the scariest thing I've ever witnessed in my life. I know it was just as scary for her, too. But they kept bringing her back from the brink, only for her to decline further and have to face yet another decline and a host of new fears and issues with alz... Yeah. Brilliant. No, thanks. Please.

And Reverseroles, your mom sounds sweet! I wish my mom had been a 'happy alz person', too, especially at the end. Well, at any point, really...

Oh how we all worry once being a alz caregiver ~! I think the same things but I guess I am greedy also. I do not want my kids to be tied down like I am. I also have seen too much in nursing homes to ever want to be in one. I want my estate to pay for mine, or my husbands care at home, until its gone and then our pension/ss to pay for our care. My youngest who is awesome with my alz Mom, vows he will never let us go into a nursing home,and I also said if you have to, you have to, please just live your life, I have lived mine, and try and visit me because its a scary place to be when alone and afraid and confused, lol. I do not take my lipitor. I feel statins caused my Moms dementia and fear it. Why is dementia on the rise and heart disease on the decline as SethMeyers , etc, said? I feel its medications, just "my" opinion of course. Dr said I am at high risk for heart attack being overweight, with a family history, but I said "I rather go fast then have my family have to deal with me on the long goodbye road." My Mom's Mom never took medicine, was sharp at 91 and died of a heart attack. No dementia on either side of our families, then my Mom got it. Its the family that suffers, my Mom is in her own little world, in fact, singing in her bed right now,and one happy alz person at 92. Oh we went through the wandering and agression,aggitation, anger, etc but we made it and shes is in the last long stage now. Bless us all, maybe they will find a cure for this soon:0)
Everislash----get a call button and wear it,I think anyone alone, any age, should have one. These days you can even get video monitoring of your home if you wanted.We cant live life worried about death, as much as I also worry, we have to just "try" to live, love and laugh!