Facing Our Fear of Frailty and Decline in Old Age
By Melanie Haiken, Caring.com senior editor
For many of us who are in the thick of caring for aging parents, spouses, or other family members, it's enough just to get through the week. Looking ahead and making future plans can be daunting. We just don't know what the picture will look like a month from now, let alone a year from now, or three years from now.
A recent post in the New York Times' New Old Age blog tackled the difficult subject of how hard it is for older folks and their families to look forward to the decline and frailty that almost inevitablys come with aging - unless sudden death intervenes.
Writer Paula Span pointed out that while many older people can talk about their wills or their funerals, they jump over the intervening years and the difficult subject of how the family should deal with their needs as their health and strength decline. Yet this is an important reality for us to try to face; most people are not, in fact, going to die suddenly of cancer or heart disease but will spend a number of years in an increasingly frail state of health as they move toward the end of their lives.
Following up on the NYT post, UCSF geriatrician Ken Covinsky writes in his blog [Geripal] (http://www.geripal.org/2010/01/overlooking-frail-years.html) that the danger of failing to study and talk about this life stage is that we overlook ways in which we can help frail dependent elders maintain a good quality of life.
I thought a positive way for us at Caring.com to join this dialogue -- since we are, after all, the caregivers in the trenches -- would be to think of some ways families can talk about planning for these last years of increasing frailty, so it doesn't come as such an unexpected and unprepared-for event when things take a turn for the worse.
It can be hard to face head-on the issue of dependence and the fact that many seniors in their later years will be unable to manage without help, but talk about it we must.
Here, then, are a few "talking tips" from experts who help families plan for the various transitions of aging.
Recognize that the fear of losing independence can be overwhelming and can lead people to make poor decisions. Talk about the fact that the loss of strength, mobility, mental faculties, and independence is just another type of loss. How has your family member faced and dealt with losses in the past? What kinds of resources have helped?
Talk about the fact that, as one social worker put it, "Independence is knowing when to ask for help." Redefining asking for help as a sign of strength can help overcome stubborn attachment to going it alone.
Ask your family member what makes her feel safe and cared for. Then ask how she wants to make sure she receives good care when her caregiving needs become too much for a working family to shoulder. It's important to get this topic on the table for practical discussion so you don't get stuck at the "Promise me you'll never put me in a home" level of discussion.
Offer aging family members as many choices as possible. Having choices, experts say, is the essence of feeling in control. And loss of control is the scary fear that underlies the fear of losing independence. Discussing the range of choices available, from assisted living to in-home care to moving in with family members, allows the reality to sink in for everybody, and will hopefully prevent you from having to make decisions under the pressure of an emergency.
Discuss limitations along with options. Talking about the possibilities ahead of time also allows you, the caregiver, to raise the issue of your limitations while you're still in the decision-making process. So, for example, you might say "I'd be happy to have you live with me, mom, but we'd need a day nurse while I'm at work in order for you to be safe, and we'd need money to pay for that." Family caregivers often say they wish they'd discussed these issues ahead of time while their loved ones had more faculties intact to prevent misunderstandings and disagreements later on.
Linda, I share your concerns. Bluntly, I feel we must be prepared in whatever we can be. We cannot assume that friends, neighbors, or the government will take care of us, and if we have no family, it means we are truly alone. It's not a pretty picture. My father has long-term care insurance, but it is of limited duration and amount, and, as the one who manages his finances, I feel like I'm in a crap shoot--do I tap into it now, while he needs a little home health care, or wait until he has exhausted all other resources? I'm trying to learn from his experiences, but the world will change, I fear, in the next 20 years. I think those of us in this situation must do "something" to prepare, but I'm unclear as to what that will be. I'm planning to meet with a financial planner who does not sell any products and see what she recommends. I think we must arm ourselves with education and a commitment to do whatever seems honest, ethical, and pro-active. It's so easy to get scammed with things like reverse mortgages, annuities, etc. I grew up really poor, and my greatest fear is to end up in a smelly nursing home, old, alone, and broke. Let's put our collective heads together and see what we can do NOW.
Hugs LindaSD
I previously posted but will address some other comments here. Long Term care insurance...my father bought that for himself and mom. He paid a long time and a high premium. As he and her aged, he paid more and added to the policy coverage. By the time he was 82 and sick, with hardly any money left, when he went into the nursing home my mom could not afford to keep the premium up. They had nothing after his illness. The policy he paid for all those years would only pay $160 a day for nursing home care. Not anything. I had to have my mom stop paying the premium and get him qualified for Medicaid, which he did. So much for all that money and years of insurance premiums. Something to think about. Me, I don't have to worry about planning that way, not enough money to pay for such things. I could barely pay my rent while I was working so planning for retirement or illness was and is not doable. Friends I have in my same situation who are on Medicaid don't get much medical help. So I don't look forward to getting old and being poor. As to the retirement community - most of my neighbors are old widowed women who can barely take care of themselves and not help to anyone else. The younger residents are not willing to be involved in what they see as a "problem" and can get even nasty towards some of the more older residents that need help. Don't count on neighbors for care and kindness. Reverse mortgage - it is just a fancy loan. there are a lot of people who take it out and then after the loan money is gone can't afford to pay their taxes and lose the house any way. The retirement community I live in doesn't qualify for reverse mortgage - we don't own the land. Well, I already know the road I'm going down. Not a pretty one is it?
Meiho, You speak for me. I have those concerns too.
Let's see if I can explain my question better. Your book is called "Stuck in the Middle." Some Baby Boomer caregivers are sandwiched between parents and children. Those of us who have no children have different issues. We take care of our parents, but we have no children who may take care of us. So we aren't really sandwiched--we are at the end of the family line, with no one who may step up to care of us when we need it. (I do realize that not all children take care of their parents.) So, my question is--does your book, or do your speeches, address the issues of people like us who have no children, no brothers and sisters, etc.? We need answers beyond support groups and friends. I'm glad to know there may be more financial "products" coming out soon. At 65, I can't wait too much longer to prepare for my own care at 85 or sooner. On tonight's news, Katie Couric had a piece on how many new cases of Alzheimer's to expect in the next few years--it's millions, especially as us Baby Boomers get to that age. She called it a "crisis" because the health care system is so woefully unprepared. From my experience, I know that there is a crisis of physicians and an impending crisis of nurses. So we all better be prepared to be pretty self-sufficient, have enough money to hire private duty nurses (if we can even find one), etc. Any practical ideas you can share?
I mainly work with adult children caregivers and corporations. However I want all generations to get prepared and have the crucial conversations soon than later. I am not certain I understand your question. www.BarbaraMcVicker.com
Barbara, I've looked at your website. Looks good. Do you deal with the issue of the 2-generation Boomer in your book? Looks like you deal with the 3-generation family. Please clarify.
I am author of "Stuck in the Middle...shared stories and tips for caregiving your elderly parents". Your fears are universal. We Boomers now realize that we cannot even count on family. Long-term care insurance and other products are worth investigating. Reverse Mortgages and many new products will come available in the next 5 years. Keep informed. Also build a support system of others in the same situation. Who knows, maybe we will all live together in one of our homes! Please visit www.BarbaraMcVicker.com for more information.
This is such an important discussion, but it's so hard for me to think about these things when I'm working fulltime and helping take care of my parents, who are still living at their home with 24-7 care (and their money's starting to run out). I'm 65, no children, very little income, and I bet my husband will die before I do. How can I add to my daily stress by worrying about my own future?
Linda, You are I are in a similar situation. I am hoping to move into a 55+ community very soon. I plan to make good friends of my younger neighbors! :-) If I can scrape together the money, I want to investigate a long-term care policy or annuity or something so I'll have some money put away for those "golden years." (Yeah, right.) I'm working with a financial planner to try to set something up. We really need to find out what others our age are doing, or what those our parents' age are doing if they are in our situation. Let's keep chatting about this--it is our future we are talking about!
After 15 years of being caregiver, first to my father before he died and now to my mother, I frequently wonder what will happen to me. I have no husband, no children, and a brother who I don't want help from. I recently had to quit work to take care of my mother. I'm 61. If I outlive my mother, I will have nothing and will be lucky to have anything to live on. Where I live in a 55+ retirement community, so many elderly at my mom's age (89) are alone and end up with caring elderly neighbors to help until they go into a nursing home. They frequently outlive their relatives and their money. It is a sad thing so see happen so often. I have a will and other documents but it won't help if I have no money and no one to enforce the documents. When I think about all the things I do for my mother because she can no longer take care of herself, I don't want to know what will happen if I live that long.
So glad to read all these valuable comments. I do have children, but don't want to put the burden of my care on them that my mother put on me. Those of us with children need to be careful not to repeat our parents' mistakes.
Yes, Meiho, there is a huge problems for the elderly with no family, estranged family, or family miles apart. A new statistic states that 20% of women age 40-44 have no biological children. The financial downturn underscored your question of "Who will take care of us?" I agree that we need to all have a plan for taking care of ourselves. We are going to need a strategy and also build our own community and support group. Please visit my website for more information www.BarbarMcVicker.com
Barbara, Thanks for your comment. You talk about 3 generations having a plan. What about those of us who are the "end of the line?" There is no generation beyond mine to look after me--I have no children, no siblings, no nieces or nephews. Will we have to pay a case manager to do what I am doing for my father (take charge of bills, etc.)? While there may not be many people in my situation, there must be enough that our needs should be addressed someplace!
Hugs Kirby F
As caregiver for my father who has dementia, I see the wisdom of these recommendations. Luckily, he and I were able to have some of these discussions before he needed a high level of care. As I've traveled this road with him, it has brought to mind my own future and the need for planning. As a single woman, without children or grandchildren, without siblings, I am alone in the world. At 65 and retired, I need to look down the road and ensure that I provide for myself so that when I need the kind of care my father is now receiving, I'll be emotionally and financially prepared. It is very scarey! At the moment, I have to deal with him, but I also see the need to be ahead of the Baby Boomer curve in finding a continuing care facility and making sure that I have the means to pay for it.