Is extended end-of-life common? How many people will require years of caregiving before they die?

Having raised two children and now being the caregiver for my husband, I can say that it feels very different to care for a young child than it does for an elderly person with dementia, both physically and psychologically. With a young child, you know that they will develop and become more independent every day. You also can also hire relatively inexpensive babysitters. With an elderly person with dementia, you can only look forward to a decline in their independence and caregivers cost a lot more to hire than babysitters. Elderly people with dementia also have a lot of medical problems that most young children do not have. Lastly, it is a lot easier to deal with a toddler having a tantrum than to deal with someone a tantrum by an adult who outweighs you.

Whirlpool -
Is the question "should I buy Long term care insurance?"

1. Can you afford it? I'm 66, and I pay $2000 a year for a medium-quality policy. It's a lot of money. If you are younger and very healthy it costs less, but it's never cheap. It would be a shame to spend that much for a few years and then discover you can't keep it up, and have to let it lapse. To die at 97 and never have gotten a penny's benefit from it because you're too healthy - that is a "loss" i'd be glad to bear.

2. Do you have assets to protect? If you have less than $200,000 including your house, and you spend years in a NH, it will all go for your care anyway, and you probably can't afford it.

If you are worth $10,000,000, then you have a great money person who can set things up to protect your assets and fund your care for years. I am in between.

3. Do you have young or disabled children you need to provide for? Maybe a life insurance policy or trust would do that better than LTC insurance. Or maybe LTC will make it easier for them to know what to do with you when/if you need care.

4. Do you have a family history of chronic disabling conditions? If so, and if you can afford it, sign up early! The odds are that you will need LTC. Neither of my parents needed a long NH stay, but we are all just one very bad fall from needing a lot of care for years. I tried to get insurance for me and my husband because he has a family history of diabetes, but even at age 60, he wasn't accepted.

5. Do you live in a state that will reward you for having LTCI when they come after your assets for Medicaid? This applies to those of us in the middle, who can self-pay for some time but not forever. I don't remember the details, but it helps.

It is a gamble. I read some statistics. There are more single women over age 85 in NHs than any other group. But. Only 25% of single women over age 85 are in the NH! Hope this was helpful

I agree about QOL. Modern medicine has been able to keep the "living dead" going for many years now. I believe in planning for that possibility while you are still healthy as a personal responsibility. Prepare a living will..select a healthcare proxy..and make your wishes known to all..especially your physician. I beat cancer..alone..and do not want to go through that again. I have no "family" left that would care for me. I refuse to take certain medications. The older generation came from the "my family will care for me" mentality, no matter what the burden on the caregivers. Most are women and our generation became educated, entered the job market, and are often the sole support of their family or selves. I think this is a generational problem and one for some cultures. I believe the burdens will dramatically decline after then the baby boomers

I agree about QOL. Modern medicine has been able to keep the "living dead" going for many years now. I believe in planning for that possibility while you are still healthy as a personal responsibility. Prepare a living will..select a healthcare proxy..and make your wishes known to all..especially your physician. I beat cancer..alone..and do not want to go through that again. I have no "family" left that would care for me. I refuse to take certain medications. The older generation came from the "my family will care for me" mentality, no matter what the burden on the caregivers. Most are women and our generation became educated, entered the job market, and are often the sole support of their family or selves. I think this is a generational problem and one for some cultures. I believe the burdens will dramatically decline after then the baby boomers

Yes, modern medicine has done a lot to extend life, but has profit motivated medicine and drugs really stripped away from caregivers their true values regarding the "quality of life"...for them or their loved ones? I hope not. Modern medicine sells more anti-anxiety drugs through the process...and that is a fact.

And yes, to some degree, it depends upon what one is dying of, declining from, and over what period of time...and who is around to pitch in, to really help out. Most run for the hills...just "too much" and/or are "too busy" for the elderly, mostly these are parents that brought us into this world and cared for us when we were fraile, sick, crying and needed to be fed...to be cared for.

Is there really a big difference between an elderly child and a young child, except for age? The young child is learning, being taught, surviving, being guided and comforted. The elderly child is trying to remember, trying to in many cases..be a part of a family, fit in, control what they know is becoming uncontrollable, and to maintain their dignity. They have now become dependent, to a greater degree or not...but becoming dependent. Most elderly are sharper than you think, and ultimately is our responsibility to give them every opportunity to feel safe and comfortable...just like when someone provided for you when you were a baby, and perhaps far less cognitive, and much more dependent. We were all in the wilderness when we were born, and dependent upon our parents and/or other providers that looked out for our safety and well being. We were then, a "shell" of what would/could be. Yet today, all this debate about "quality of life" for the elderly...and all the sacrifice that impedes on "our quality of life".

Guess what folks, life is a circle of life events, from the mircle of birth, and the caretaking process... to the elderly state of human life, and the caretaking process. What's the difference between a dependent one year old and a 85 year old dependent parent? It is the cycle of life and love to provide..to be there through the good times, and the rough times. Ultimately, it is your decision and only you can answer the question of "quality of life".

In my opinion, "quality of life" is more on the shoulders of the caregivers for the elderly, and what they are willing to sacrifice to provide a better "quality of life" to the person they are caring for. In my experience, and with my elimination and/or reduction of so many antipsychotic drugs that were perscribed for my Mother, Mom bloomed back like a knew flower. And so, she realized a much better "quality of life" during the last three to four months of her life. She was alive, and not a "shell". It all falls upon the caregiver, and what they believe to be and see to believe, sacrifice for, and trust to enable and provide the best quality of life for whom they are caring for. It is ultimately, the primary caregiver's decision, absent other family assistance..often from remote family members that are not involved...and in most cases, don't want to be involved...because of jepordizing "their quality of life".

It's your decision. Maybe a question should be asked to some of our so many heroes that fought in our many wars. Ask them about "quality of life" and the fortitude it took for them to carry a wounded soldier to safety...not knowing their "quality of life".

Good luck with your decision making process.

For the purposes of planning, I would say you should plan on an extended end-of-life. I've seen it happen over and over, people don't plan on living so long and their money/care runs out before their life does. My dad just had his 92nd birthday and he sure never planned to outlive all his friends, family, wife, and savings. I haven't seen an adequate LTC insurance policy yet, for all the end of life possibilities. My father's policy paid $100 every month for a $1000 claim for home health care. Good luck to us all as we age!

medical advances have caused people to live longer but no one wants to help them when they need it, this must change, the goverment desperatly needs to change this, I take care of my mom 24 hours a day and will until she goes to be with our Lord, will keep you in my prayers, God Bless

No, not always. I am not sure I know what question you are asking. No one knows how long you are going to live. Insurance companies bet (for lack of a better word) you will live longer than you anticipated thereby having you pay the premiums for a longer period of time. I don't think this is the forum for you since you are not a caregiver of someone with dementia, but you are welcome to read about those caring for someone with end-of-life issues.

I completely agree, that modern medicine has extended lives, but not the quality of life. Both my Mother and Step-father have Alzheimer's/dementia, they have been afflicted for at least 6 years, mom is 72, he is 78. This disease has ran heavily on my mom's side of the family, unfortunately I have no clue about the extent of it on my real dad's side of his family. So besides worrying about them, now I am worried about myself getting it. I have gone back to school, as a Social Work Specialist, majoring in Addictions, I will always champion for a cure to this dreaded, horrible disease. This is the hardest thing I have ever done to try to get my mind and realization around the fact, that you have 1 fairly healthy (mom) and 1 where health is fading, but to be without a clue about things is just horrific. This is something I would never wish on anyone. And statistics show that the afflictions of this disease will increase dramatically over the next 10-20years.

I agree with what all of you have said. My mom is 90 and became very ill after back surgery over 3 years ago and wasn't expected to live. She went into a nursing home and is on Hospice care. After many months she slowly got better, but is wheel chair bound and was diagnosed with dementia. She has NO quality of life and I have not had much of a life since all this started. As you said, and I tell people all the time, I'm certain she's going to out live me. This is not where I wanted to be at the age of 64. I see no point in modern medicine extending one's life when you can't live your life. It stinks, and makes me very bitter.

balexander9: I feel the same way. I am only 62; my husband with dementia is 78. His Mother had this disease, too, and lived to be 92. I cannot imagine how I will deal with this for another 14+/- yrs if that is what happens. I, too, believe my husband will outlive me. I have no life and neither does he. But I am young and healthy (except for severe depression brought on by all of this). do I really have to sacrifice what time I have left to this disease? I know life isn't fair, but I didn't know it was supposed to be brutal, too.

It depends on what the person is dying from. People with certain types of cancer sometimes only have a few months to live after diagnosis whereas with people with dementia, there seems to be no way of predicting the course of the illness. You see statistics about the average number of years a person is expected to live following diagnosis but people get diagnosed at different stages of the illness and teh progress of dementia can vary greatly from one person to the next. It is very difficult for a caregiver to put his/her life on hold, not knowing whether this will be for a relatively short time for for a decade or more. If the patient's quality of life is reasonably good, that is one thing, but there are patients with dementia who live for many years beyond the time when they recognize family members or remember anything of the life they lived before their illness. The fact that Medicare doesn't pay for nursing home care makes this a particularly difficult situation for many families, depending on their financial situation. I am 68 years old and my husband, who has dementia is 79. I have been his caretaker for a few years now and can't imagine doing it indefinitely. My husband's mother lived as a bedridden invalid until the age of 84. They way things are going, I often think that my husband will outlive me. This is not the way I want to live the rest of my life.

I think modern medicine has done so much to extend life...but they have done nothing to extend the QUALITY of life. Seeing loved ones fade into oblivion is heartbreaking. Their hearts beat and their lungs breath but their minds are gone and the "who" they were no longer exists. It's like keeping an empty shell alive. I know "pulling the plug" is hard to do...I had to do that with my own father...but it would be far more humane than watching someone exist like a living corpse.