Feb 3, 2011 -- Over the past week "World News with Diane Sawyer" has heard from many of our viewers, asking questions about their own issues when it comes to aging parents and care giving. Virginia Morris, author of "How to Care for Aging Parents," has answered some of these questions below.
From Houston, Texas: It is really tough when there are no siblings to help with care of an aging parent. I'm an "only," and the decisions that I'm faced with are harder and harder. What resources are available to help?
People often talk about the difficulties of working with siblings, but they forget that it's pretty lonely doing this on your own. Contact the "agency on aging" that covers your parent's town. You can find them by going to www.eldercare.gov, or calling 800-677-1116. These agencies (they go by a variety of names) sometimes have a case worker who will help you assess the situation and walk you through some options. At the very least, they should be able to direct you to local programs and services.
If that doesn't help, you can hire a professional geriatric care manager who will come into your parents home, examine the situation, and help you develop a plan. It's not cheap – an initial visit will cost about $200 to $300 – but it's money well spent. You can hire them to do as much or as little as you want. You can find a care manager online at caremanager.org.
When you are juggling all the pieces by yourself, it's important seek out emotional support, as this is an incredibly difficult thing to do alone. Caregivers often don't realize just how much of a toll this takes on them. Even if you are not with your parent daily, it weighs on you constantly. Seek out friends, especially friends who have done this themselves, or join a support group. And make sure you walk away from it from time to time. You need to get some distance from it. Take time to take care of yourself.
Diana from Crofton, Md.: How does one handle long distance care?
It's important to be organized and plan ahead, no matter what your situation, but it's critical when you live far away. Think ahead, plan ahead. Talk with your parent early in the game about what will happen if he needs care or has to move. And learn about local services and housing options before he needs them. Contact the agency on aging for your parent's community through the eldercare locator (800-677-1116 or eldercare.gov). The local senior center, church or synagogue might also have leads. Organizations for specific diseases, like Alzheimer's or Parkinson's, offer all sorts of information and support. And as I said, a geriatric care manager (caremanager.org) can be very helpful when you can't be there yourself.
When you're far away, be sure someone has contact with your parent most every day. You might call often – and a visual conversation, via Skype or the like, is helpful – but it's important that someone actually see her. If there is a visitor or companion program, take advantage of it. Meals on Wheels is more than just food; it's a person at her door. Be sure you have phone numbers for a neighbor who can check in if you suspect a problem. From afar, you will also want to set up her accounts so bills are deposits and bills are handled automatically.
This is an abbreviated list of tips, but I should add, when you visit, be on the lookout for signs of trouble – an unsteady gait that might preclude a fall, moldy food in the fridge that suggests she's not eating well, a pile of unpaid bills, or a change in her personal hygiene or homecare.
Diana from Indianapolis, In: Do you know about a service that calls the frail, elderly and homebound every day, providing a check in service to be sure they have taken their medications?
Forgetting to take medications or taking too many medications is a serious problem for the elderly, causing thousands of deaths each year.
A number of services will call with a recorder reminder to take medications. Or you can buy an electronic pill box with that alerts someone when it's time to take a pill. You can also buy watches, pagers, and other alarms that can be programmed to go off when it's time to take medication. Some systems also let a person know what to take, how many, and how to take it. More elaborate systems actually dispense the medication.
It's not a bad idea to look into these systems even if you think your parent has this under control, because sometimes things just aren't as under control as you might think. Go online or visit a medical supply store. A large pharmacy might also have a few options.
From Brewster, N.Y.: My mom is 86 and she lives alone now. Do I have to wait for something to happen before we should talk about moving her somewhere?
Oh, please no! Do not wait. Talk to her right away. Look, there is no question about it, the sooner people talk to their parents about the future, the better. Otherwise, you'll be reacting to a crisis, which will mean a lot of work and stress for you, and it will mean fewer options for your parent.
You need to talk, not just about where she might live and what help she might need, but also how she will pay for care (in-home, assisted living, nursing home), which is very expensive. You should also talk to her at some length about her wishes concerning medical treatment and end-of-life care – how aggressively does she want to be treated, what does she fear, what would be comforting, etc. You should also be sure that she has an up-to-date will, a durable power of attorney (giving you or someone else the authority to make financial and legal decisions on her behalf, in case she cannot make them for herself), a power of attorney for health care and a living will that outlines her wishes concerning end-of-life care. Be proactive. Be ready. It will make the world of difference.
You have to start right away because, first of all, it takes a long time – often years -- to get these conversations going, to accept the idea of change, and to make plans. Also, it's easier to do this when it's all theoretical (what if….).
Finally, some of the better housing options have waiting lists.
Start by asking questions and listening to her thoughts and concerns. For example, "Mom, if at some point you couldn't live on your own here, what would you want to do? Where would you want to live? What's most important to you? What if you couldn't live with me?" Talk about her concerns and discuss the options. Don't try to do this in one sitting; it takes many conversations. Urge her to tour various facilities with you. Explore the options and make a plan. Don't delay.
April from Dallas, Texas: My mom is 88 and has cooked supper every day for 60 years. How can I convince her to stop cooking? I'm afraid she will set the kitchen on fire or burn herself seriously.
If your mother is at risk of setting the house on fire because she has some form of dementia and has poor judgment, then you need to get involved right away. Remove the stove handles or disconnect the stove. You might just tell her it's broken. Then, find a meal delivery program or be sure there are things she can heat in the microwave or eat cold. If cooking is her passion, find recipes that don't involve a flame. Some appliances, like toaster ovens and electric kettles, shut off automatically.
If, on the other hand, your parent is mentally competent, then it's a very different story. Visit during mealtimes and watch her cook. Is she really at any risk? What, exactly, is the danger? Is there some way to reduce the risk?
Perhaps you can get her a pair of good oven gloves; be sure the fire alarm works; keep a small fire extinguisher near the stove and show her how to work it; be sure there is a clear automatic dial button on the phone for the fire department; and be sure that she is not cooking in her bathrobe or anything with droopy sleeves that might catch on fire.
Talk to her about your concerns and see what she thinks. Listen to her and discuss ideas for reducing the risk, and discuss what she'll do when she really can no longer cook for herself.
But at the end of the day, it's important for all of us to realize that while we should discuss the risks and options, and insure our parents' safety in any way we can, we are not their parents or their prison guards and we can't always stop them from doing things that they want to do. Competent adults, even at 88, have the right to take risks and make decisions, even if we consider those decisions foolish.
(Note: This does not apply to driving, in which not only is your parent's life at risk, but someone else's life is risk. In this case, you have to be more actively involved and unyielding.)
April from Bonners Ferry, Idaho: How do you deal with a feuding family that can't agree on what to do with a 90-year-old relative? (Some children refusing to help financially -- but they still expect to be on the mother's will. Arguments over money.)
There are two issues here. The first is siblings (or cousins, aunts, etc.). When a parent needs help, all sorts of old family feuds and childhood angers and resentments rear their ugly heads. People need to tread very carefully. I suggest that you hold a somewhat formal meeting. Get everyone together (or on speakerphone) to discuss your relative's care, finances, etc. Have an agenda and perhaps bring in an expert – family mediator, geriatric care manager or, in this case, perhaps a financial advisor.
Remember, you aren't there to discuss why your sister stole your boyfriend in 11th grade or how your cousin tattled on you when you were six. You are there to talk exclusively about your relative's care and needs. Also, keep in mind that each person comes to this with their own issues, relationship with this elderly relative, financial situation, priorities, other responsibilities, etc. You have to expect that others are not going to see this the same way you do, but that doesn't make them wrong.
The second issue you raise is money. When it involves family, it's best to be very businesslike. If one person is paying for a relative's care out of pocket, then set up a plan for that person to be reimbursed, either immediately or through a will, if possible. This person should keep careful records and email regular reports about what he/she is spending on what. Finally, everyone needs to remember that an aging relative's money is, first, for his or her care. The primary goal is not to "protect" someone's inheritance.
Karen from Murfreesboro, Tenn.: When you have to take care of a person, how can you handle everything without being physically worn out every day? How are you to have any time left for yourself?
Ah, this is such an important question. The answer is so simple, and yet, so difficult.
Here it is: You can't handle everything, and you have to take time for yourself. We get so caught up in caring for loved ones, that we can't help but feel responsible for every minute of their day. But you have to step back and let go of some things, or this job will devour you. And the fact is, you will be of no use to anyone if you are exhausted, sick, depressed, irritable or resentful. I know it seems that you don't have time for yourself right now, but if you take care of yourself, you will be a kinder, more patient and more efficient caregiver. I promise.
So, take a deep breath. Think about what you do that is crucial and what you do that perhaps isn't as crucial. Then, as hard as it is, let some things go. Use local services and supports. Let others help. Accept that you cannot be there 24/7, and that things might not be perfect, things might not be done exactly as you would do them. But that's okay, because your best really is good enough.
Get away from it. Take breaks, see friends, get exercise, eat well, do something that recharges you. And let go.
Bobbi Jo from Palmer, Alaska: What about the stress and frustration that the child has with the parent? My mother has become a 5-year-old child, and I can hardly deal with it.
First of all, step back. Take time for yourself. Don't try to deal with a parent when you are annoyed and frustrated. If you are calm, your parent will also be calm (or calmer).
While she may seem like a five-year old, she is not five. Her behavior might be because she has lost so much – her youth, her friends, her job, her skills, her independence – and may face a relatively bleak and frightening future. She is scared and grieving. She's frustrated because she's feeble and confused, and dependent on you. She may be afraid of being abandoned, of pain, of death.
If she is irritable and makes unfair demands, don't engage, don't fight back. Gently remind her that she is safe, that you are there, and that you are not going to abandon her. For example, if she says, "You never visit me!" don't say, "Yes I do! I was just here two days ago!" Put your arm around her and say something like, "I know it's hard for you to be here alone, but I will be back on Friday, and you will be okay." Or, ask her about her fears, "What is it like when I'm not here? What worries you?" Either way, let her know that you hear her, and understand her fears and frustrations. But also, very calmly, make clear what you will do for her (which also makes clear what you won't do for her).
You are not alone it this! Best of luck.
Evelyn from South Carolina: Our parents will be 91 and 90 years old this year. Dad gave up driving because of his heart condition & Mom has walking problems, pacemaker and other poor health issues. We are three siblings, Lois age 66 & retired; Russ Jr., age 65 working part time; Evelyn age 61, working part time and full time student studying for my BSHA. I feel guilty being here in SC because my sister & brother-in-law take care of her mother-in-law at their house and driver over to our parent's home daily. Our parents live 5 miles from my sister and 2 miles from my brother. My brother has health issues however he is helping out our parents with lawn care, setting out the trash, sitting with them when Lois cannot make it in to check on them. I drive to PA every year to help out while Lois and my brother-in-law go on a much needed vacation with their children and grandsons. Everyone lives in Pennsylvania except me (Evelyn) I live in SC with my 72-year-old male companion of 17 years. I have seen him through heart surgery, bladder cancer/ostomy, diabetes and now walking problems. He does drive to his work place every day and to the doctors appointments. All of his family lives in the England, so when health problems arise I am always there for him, except when I go to PA. Then I make sure his health needs are taken care of (skin barrier with floating flange, Urostomy pouch are freshly changed). Should I feel guilty about being so far away (670 miles) from my family/parents?
Should you feel guilty? A loud and resounding No! In fact, my message to you is to get rid of the guilt. Just shed it off, throw it up, release it somehow, tie it up in a bag, and take it out with the trash. Gone. Completely and forever. Guilt is probably a good thing to feel if you steal your sister's favorite sweater. But it's not a helpful emotion in this case and, sadly, almost all caregivers are plagued by it. I wish I could wave my magic wand and get rid of all caregiver guilt.
You have nothing at all to feel guilty about. You are doing what you can. Even from a distance, you provide your siblings with emotional support and a sounding board. You give them much-needed respite. Send them each a gift certificate for a massage, if you like. But you do not need to pack up and move, or feel guilty.
Kim from New Jersey: My mother-in-law has maxed out her credit cards, twice. My concern is, if she should pass away, who would be responsible for all her debt?
Her debt would be paid out of anything that remains in her estate. When that is sapped out, it would remain uncollected. But you will not inherit it, unless you co-signed for it. Your mother, however, needs to make confetti out of her credit cards, and talk to a financial planner or elder law attorney to get her finances under control and to plan for the future.
Paula from Esthero, Fla.: My mother is 79. Over the past 4 years, she has done less and less for herself. She has early Parkinson's and some signs of early Alzheimer's per the neurologist we have taken her to. I work 40 hours per week running our business. Have a husband and two boys. The boys are 23 and 17 but still require my time. I know my mother would like to move in with me over going to a facility, but I just don't have the time to give her the attention she needs with my lifestyle. She keeps throwing in my face that she took care of her parents (they were much older and she was a single widower with grown children at the time). She makes me feel like a bad daughter. How do I talk to her about going to a facility over coming to my home when the time comes, which won't be much longer I feel.
First of all, talk to her now. Today. Start the process. It takes a long time for a person to accept such a move, and with dementia creeping up on her, moving sooner will be much easier than moving later. Also, the best places often have waiting lists.
Get her to visit some facilities "just to have a look." Be sure that they have adequate programs or a unit for people with dementia. Find one nearby so you can visit her.
Then stick to your guns. If moving in with you is simply not going to work, then don't do it. You can still be a great help to her, even if she's in a nursing home. You will need to help oversee her care, stay on top of staffing and medical issues, and visit her regularly. You are not a bad daughter and don't let anyone make you feel like one.
Ellen from Hillard, Ohio: What do you do with a single widowed parent who is a total curmudgeon and absolutely refuses help of any variety? I acknowledge my dad's right to make his own decisions, but I'm worried he'll make bad choices and hurt himself. (Aging father is still very active, doing strenuous work -- like roofing -- that she thinks could give him a second heart attack.)
A curmudgeon? I know that these active, fiercely independent parents are difficult to deal with, and yet, I secretly have a soft spot for them, perhaps because my father was one, and perhaps because I sort of love that they refuse to quit, that they want to die with their boots on.
Talk with him. Tell him that its great that he's so independent and active, and that you hope he can remain independent for as long as possible. But remind him that if he stumbles off the roof, he might just fall right into a wheelchair. Talk to him about ways he might remain independent and lower the risks of injury. As you talk, be sure to keep him in the driver's seat. Ask questions and let him make suggestions. This is about his life and his needs and his fears and goals; your concerns and needs are secondary. If he closes the door, try again. Keep the conversation going. If he flat out refuses to talk with you, then get someone else to try. Perhaps he'll be more open with a brother, doctor, trusted friend.
He needs to address more than his roofing habits. He needs to start planning for the future. Where will he live when he can't live alone, or can't drive, or can't care for himself? How will he pay for that care?
But remember that keeping active is really what's keeping him alive and keeping life meaningful for him. You can make suggestions and prod him and introduce him to a local roofing company, but in the end, he has every right to take these risks, as frustrating and worrisome that may be for you. Most people take risks of some sort, whether it's rock climbing or eating junk food or failing to wear a seatbelt. You may not like it, but he does have every right to do it. And honestly, maybe dying with your boots on isn't such a bad thing.
Linda from Sanford, Fla.: What do you do when your parents have made bad decisions and they have lost everything, their house, their car and now depend on Social Security and Medicare and Medicaid and you their child for help. I have my parents in an assisted living facility and have a sickly parent, a dad who has diabetes, and has suffered from a stroke, he is constantly in the hospital and rehab. My mom is suffering from Alzheimer's and I am left to be the caregiver and provider. They do have their own apartment in the assisted living, but with time and their decline in health, the cost will be more than I can handle where do I go for additional assistance?
Linda, everyone has to make their own very personal decisions regarding money and how much they are willing to shell out for their parents. But unless you are independently wealthy, there is nothing wrong in letting Medicare and Medicaid foot the bill here. These programs are set up for this, and there is no sense in you ending in dire straits because you spent your savings on your parents. Talk to an administrator at the assisted living facility and find out what happens if you stop paying the bills. If they are on Medicaid, will the facility accept that? If not, where would they have to go? Also, as they become even more frail, how will the facility move them to a nursing home? What homes accept Medicaid?
Visit them, love them, pour your affection on them, but do not go broke supporting them. If you need help sorting out their finances, talk with an elder law attorney. (You can find the National Academy of Elder Law Attorneys at www.naela.org)
Theresa from Orlando, Fla.: My grandmother will be 103 in less than a month and it is time to find a nursing home for her. The care for her is becoming to much on my parents and there are no other options for someone to care for her. Where do we start to find out what type of financial assistance is available?? The cost of the nursing home is more than any of us can afford and we feel helpless. In home care would also work but that seems even more expensive than the nursing homes. Any advice would be appreciated!
Most people enter a nursing home and pay whatever they can until they are eligible for Medicaid. Medicaid then picks up the bill. A few states have programs that allow people to stay in their own homes while on Medicaid. I would suggest that you let her "spend down" and don't drain your own savings.
Contact the area agency on aging (through www.eldercare.gov) and ask them to put you in touch with the local SHIP program – that's the state Health Insurance Assistance Program. The agency on aging can also put you in touch with the local long-term care ombudsman, who should be able to give you some guidance on local nursing homes and some of these financial issues. If you have a nursing home in mind, go talk to an administrator about your grandmother's situation.
Know that it's often better to get her into a nursing home before she runs out of money, perhaps when she can self-pay for 6-9 months, as she might get into a better facility. And at 103, well, I wouldn't put this off.
Candice from Sag Harbor, N.Y.: Can you please recommend ways to keep track of medical information and care giving? Thanks.
Caregivers can get buried under medical information, brochures, lists, phone numbers, insurance forms, and tax documents, on so on. Everyone has their own system, and I believe there are some workbooks available, but I would suggest doing this the old-fashioned way. Get several files and label them "legal," "housing," "medical," etc. In front of all this, create a master list of critical information and phone numbers. Keep up with the filing and throw things out that you don't need, because it will get pretty unwieldy. You should also make a chart of medications and when they are to be taken, along with any other daily care instructions, and post it by your parent's bed, bathroom mirror or breakfast table.
Pam from Midlothian, Va.: Long distance care giving: I have an 84 yr old mother who is approximately 2 hrs from me with dementia. Due to family commitments (11 and 13 yr old daughters), unable to provide the decent care I think she deserves as well as devoted time. How can I stop feeling so guilty for not visiting her often? Have considered relocating her closer to me but afraid of the setback, emotionally and mentally, that may occur.
Oh, I wish I could get rid of all the caregiver guilt! It's awful. If your mother is in a good place, where she has friends and good medical care and oversight, then let her stay put. If she is living independently and will have to move at some point anyway, then consider moving her closer to you.
Beyond that, let me suggest this: Write a list of all the things you can reasonably do for her, whatever that is – maybe visit once a week, call daily, have the grandchildren Skype with her, check in regularly with her doctor or caregivers, etc. Put that list where you will see it and focus your attention on all these great things that you do for her. Do NOT focus on whatever it is that you are not doing for her. You are a good daughter, but you are also a good mother. Take care of 11 and 13, and when they're a bit older let them know that they should never, ever feel guilty about the care they give you.
Rose from Broomall, Pa.: I have taken care of both of my parents through their illnesses until their deaths. In that time I have lost almost everything trying to keep them alive. When my Mother passed away I was told that my father and brain injured brother's insurance through the company she worked for would continue to cover them, 2 weeks later the company went under and so did the insurance when I called the Benefits office they told me that my father and brother were still covered. My Dad was in and out of the hospital on a weekly basis. What I was not aware of at the time was that my Mother had canceled the Medicare coverage for my Brother and my Dad . I ended up with hundreds of thousands of dollars in hospital and prescriptions (my dad's prescriptions at the time were running close to $4,000 per month) . I have in the last 4 months pulled my home out of foreclosure, but have to sell the house in order for my daughter to remain in college, I am the luckiest Mom in the world to have a child that I could be so proud of, she has been strong and kept me strong through all of this. My brother who is 51 years old and brain injured does not want to move with me, he is in a program that he has been in for almost 30 years and I will not destroy all that he has accomplished, but, what do I do? I don't have the thousands of dollars I need to have the tests run that he will need in order to find a home for him that he will be happy and safe in. Do you have any recommendations?
This is a bit complicated, and I'm not quite sure why you were paying 'hundreds of thousands of dollars' out of pocket for your brother and father or how both were removed from the Medicare rolls. Before you spend another dime of your own money, you need to sit down with a professional. Contact the state health insurance assistance program and talk with a counselor (you can find this through eldercare.gov or shiptalk.org). An elder law attorney should also be able to guide you (naela.org)
Heather from Monona, Wis.: My injured mother lives with us. Are there low interest loans or grants available to upgrade our house so it can be made handicapped accessible?
There are, but they are few and far between. The Veterans Administration offers some home modification benefits. The IRS allows a deduction for some modifications. Some insurance plans offer coverage for minor modifications. And then there are various programs within states, some of them part of Medicaid. Contact the area agency on aging (www.eldercare.gov). You should also check out the following websites, which have information about home modifications for the elderly: www.homemods.org, www.rebuildingtogether.org, www.nahb.com.
Norlizsa from Lithonia, Georgia: What programs and services are available for caregivers and their aging parents from the federal, state, and county governments? Are there non-profit agencies who provide grants for senior services?
The programs and services available vary widely from one community to the next, and they come from both the public and private sector. Obviously, there will be more services in a city than in a rural area, but most areas have some sort of volunteer visitor program, meal delivery program, transportation services, adult day services, and a homemaker service. You should contact the area agency on aging (www.eldercare.gov), the local senior center, churches and synagogues, as well as any organization linked to a specific disease you might be dealing with (such as the Alzheimer's Association).
Lee from Casselberry, Fl: What do you when you're not in a position to help an aging parent who's struggling with finances? (72-year-old father is thinking of selling family home.)
Money is always a hot issue, and one people don't discuss enough. If you cannot help a parent financially, then you can't. You'll have to help them work things out within their own budget, either through a reverse mortgage (which is not paid back until they sell the house); by taking advantage of various low-cost programs, services and discounts; and eventually, by getting them on Medicaid.
Even if you are in a position to help, many people chose not to, and this is also perfectly okay. Money is a very personal thing, as is one's relationship with a parent, and people have to make their own decisions about this.
Pamela from Henderson, Ky: How do you tactfully tell a friend or neighbor that their aging parents need help and care, and that it is time for the children to step up and take responsibility?
Keep it general and friendly at first. Perhaps ask, "How are your parents doing these days? I see your mom going to the grocery with her cane, and wow, it's terrifying to watch her try to get those groceries into the house!" If you don't get much reaction, be more direct next time: "You know, I'm really worried about your parents being alone there. I found your Dad out on the sidewalk looking very lost the other day. I think they might need some assistance."
If you suspect that the elderly couple is in danger or being seriously neglected, contact adult protective services or the police. You can usually do this anonymously. You can find more information about what to do and who to call at the National Center on Elder Abuse (www.ncea.aoa.gov).